# Multiple Myeloma



## Hophop4 (Sep 21, 2008)

Some of you on here know that I have been getting chemo treatments for Multiple Myeloma.  Almost 2 years ago I had a tumor removed from my spine and had chemo to get the 25% that the surgery didn't get.  All went well and I was doing good for more than a year until April 2008 when the Myeloma came back.  Multiple Myeloma is cancer in the bone marrow that attacks any bones.  I started a different type of chemo in May and in my 5th month of treatment.  I have one more month to go till end of October.  While at treatment last week, I saw the Doc and he said after the treatments he is going to refer me over to M. D. Anderson Hospital at the Houston Medical Center for a Bone Marrow Transplant.  It will take 6 to 8 weeks to get the paperwork and approvals and pre-op testings and looking around the first of the year for the transplant.  It will take 4 weeks then, maybe in hospital or partially as out patient.  So that's the good news I have to share with all my Tugger friends.


----------



## Kay H (Sep 21, 2008)

I wish you much success, not only with the chemo, but also with the bone marrow transplant.  They can work miracles with cancer today that they couldn't 10 yrs ago.


----------



## Beaglemom3 (Sep 21, 2008)

Hoppy-
  There is so much now that can be done for multiple myeloma - thank God for Milleninum Pharmaceutical and Velcade !!  I worked for these great & noble folks when the drug was fast tracked due to its successful treatment.
Please PM me if you'd like.
Best,
Beags (not too far from Cambridge, Ma. - home of Millennium)


----------



## falmouth3 (Sep 21, 2008)

Best wishes for a successful outcome.  I have known several people over the years with multiple myeloma so I know it's a tough one, but there are great advances in medicine.  Good luck!


Sue


----------



## Hophop4 (Sep 21, 2008)

Beaglemom3 said:


> Hoppy-
> There is so much now that can be done for multiple myeloma - thank God for Milleninum Pharmaceutical and Velcade !!  I worked for these great & noble folks when the drug was fast tracked due to its successful treatment.
> Please PM me if you'd like.
> Best,
> Beags (not too far from Cambridge, Ma. - home of Millennium)



Thanks,
I am on Velcade now.  Once a week for three weeks then off one week.  My blood tests have been coming back normal.   He said you don't need a bone marrow donor to do this procedure any more.  They take your own bone marrow and heat up the stem cells, kill the cancer and put it back in. ... or something like that.  I will learn more about the procedure as times goes on.

By the way, I was born in Somerville and grew up in Mass.


----------



## Beaglemom3 (Sep 21, 2008)

Hophop4 said:


> Thanks,
> I am on Velcade now.  Once a week for three weeks then off one week.  My blood tests have been coming back normal.
> 
> By the way, I was born in Somerville and grew up in Mass.



Ah, one of the "Winter Hill Gang ?"  

Millennium is right near MIT as you probably know. Off Mass Ave and across Landsdowne St.

I'm from Southie but live in the 'burbs now.

Let me know if you come back here. I'll see if I can get extra Sox Tickets.

Take good care.


----------



## Hophop4 (Sep 21, 2008)

I was from Tewksbury/Lowell area.  Haven't been back there in years but would like to make the trip some time.  I have a cousin in Webster I would like to go visit and others all over there but my travelling has been cut down now.  Have a brother and other cousins in Florida so we usually go that way.


----------



## Liz Wolf-Spada (Sep 21, 2008)

Hoppy, my prayers and thoughts are with you for a full recovery, minimal discomfort, good cheer and excellent medical care.
Liz


----------



## normab (Sep 21, 2008)

I wish you all the best in fighting this terrible cancer.  I used to work for a company called Celgene who markets thalidomide, which has been helpful in some patients with multiple myeloma.  I am sure you have researched all treatments, but I thought I would mention this one in case you haven't considered it.


----------



## Dori (Sep 21, 2008)

My best wishes and thoughts are coming your way, Hop!

Dori


----------



## capjak (Sep 21, 2008)

*Prayers*

I had a lady at work that her sister had a bone marrow transplant about 5 or so years ago and she's fine.

Wishing you the best.


----------



## Rose Pink (Sep 21, 2008)

Wishing you the best.  I hope all goes well with your treatment plans and that they are a complete success.


----------



## funtime (Sep 21, 2008)

*Hang in there and thanks for sharing your news*

Hop - I wish you the best.  MD Anderson is top notch as I have had two friends who have undergone treatment there.  The hospital is all about cancer 24/7 - it could not be a better place for you to be.  I wish you all the best.  Funtime
ps - thanks for sharing your news, I am glad it is a positive turn for you.


----------



## Aussiedog (Sep 21, 2008)

*Good luck to you!*

Hop -

There is a great website/message board for HL and NHL patients - lots of people on that board have had the auto SCT and the new mini auto or mini allo-SCT.  People who have gone through this are great sources of info as you prepare for your own journey.

And MD Anderson rocks!

PM me if you need the website address.

Ann


----------



## Htoo0 (Sep 21, 2008)

Hope things go well, Hop. FIL has been helped greatly by M.D. Anderson. Seems like they really do top-notch work.


----------



## shagnut (Sep 21, 2008)

Hoppy, I didn't know what you were going thru and I sincerely wish you all the best. Your positive attitude will go a long way in making things better. Hugs and best wishes coming from the shagster.


----------



## Linda (Sep 22, 2008)

Sending my thoughts and prayers to you and wishing you the very best.

Linda


----------



## Hophop4 (Sep 22, 2008)

Thanks everyone for the good wishes.  I am going to beat this thing after all I have to continue taking my vacations.


----------



## Jestjoan (Sep 22, 2008)

*MD Anderson*

http://www.usnews.com/directories/hospitals/index_html/specialty+IHQCANC/

I wish you the very best. You are in my thoughts and prayers.

Joan
10 year bc survivor


----------



## Hophop4 (Sep 22, 2008)

Jestjoan said:


> http://www.usnews.com/directories/hospitals/index_html/specialty+IHQCANC/
> 
> I wish you the very best. You are in my thoughts and prayers.
> 
> ...




Thanks for posting this link, interesting article.  I know M. D.  Anderson is #1.  I would have had my surgery there but they wouldn't take me, we had no insurance.


----------



## libraria99 (Sep 22, 2008)

Hop, we'll be thinking of you in Missouri; hope you can make it to Branson next year!


----------



## ricoba (Sep 22, 2008)

I wish you a full and complete recovery.


----------



## Hophop4 (Sep 22, 2008)

libraria99 said:


> Hop, we'll be thinking of you in Missouri; hope you can make it to Branson next year!




Me too.  It's a long drive to do now but next year maybe Thanksgiving.  We were thinking of June for our Holiday Hills fixed week but that's out now.  Doc says no vacations till maybe July.  So will just plan on our Landmark in July.


----------



## Mimi (Sep 23, 2008)

Prayers for healing and wellness are being sent your way from the Jersey shore.


----------



## Hophop4 (Jan 28, 2009)

*This is an update*

I just had 4 visits over at M D Anderson the last couple weeks for various tests and I am like a pin cushion.  The MRI took 1-1/2 hours in the machine without moving.  eeek!! I survived it.   Visted the Doc yesterday for all the results and looks like the Stem Cell (Bone Marrow ) Transplant is going to happen.  I am in partial remission right now but not 100%, I still have 10-20% Myeloma.  So I go back in 2 weeks to start the procedure.  I have been very impressed with MDA on how they do things there.


----------



## Jestjoan (Jan 28, 2009)

Thanks for the update. I'm praying that everything will go very well for you.


----------



## Ginny (Jan 28, 2009)

Will send energy your way    ~ you're in our thoughts.


----------



## Dori (Jan 28, 2009)

Please know that you have the hopes and best wishes of all your TUG friends!

Dori


----------



## suzanne (Jan 28, 2009)

Hop,

It sounds like you have an excellent medical team helping you. I hope all goes well with your treatments. God Bless.

Suzanne


----------



## SpikeMauler (Jan 28, 2009)

God Bless you and Good Luck.


----------



## MULTIZ321 (Jan 28, 2009)

Hop,

As you know, you're in good hands at MD Anderson.  You're in my prayers for a complete recovery.

All the best,

Richard


----------



## shagnut (Jan 28, 2009)

Hoppie, my thoughts and prayers are with you.  Hugs, shaggy


----------



## dmharris (Jan 28, 2009)

Attitude is so important in our health.  It seems you have a great attitude.  I will pray for total healing and peace of mind.  Keep the faith!


----------



## falmouth3 (Jan 29, 2009)

Best of luck with everything!

Sue


----------



## Hophop4 (Jan 29, 2009)

Thanks again all.

An interesting thing is my Doc at MDA wants to use me for their clinical trial research because I was treated with Velcade for chemo for Multiple Myeloma.  So I guess I will agree to it.  If it can help others in the future, that's great. They are also doing research with the Bone Marrow Biopsies and when I had mine they asked me if I would participate which I agreed.

I will keep you all posted how it goes.  There is wi-fi all over the hospital so hopefully they will let me have my laptop while I am staying there.


----------



## riverdees05 (Jan 29, 2009)

Our thoughts and prayers are with you.


----------



## Hophop4 (Jan 29, 2009)

Falmouth,

Everytime I see a post of yours, I think of my hometown.  I am from Tewksbury used to work in Burlington.


----------



## Htoo0 (Jan 29, 2009)

Best of luck. My FIL was there yesterday to discuss treatment for what is hoped to be a primary lung cancer. (only 2mm) This would be much better than if it were from the bladder cancer they removed 2 years ago. MD seems to be a wonderful place.


----------



## MelBay (Jan 29, 2009)

I'll add you to my prayer list.  There was a piece on NPR today about Multiple Myeloma!  You can listen to a replay.


http://www.npr.org/templates/story/story.php?storyId=99970093

My husband is undergoing chemo for Non-Hodgkins Lymphoma.  The doctors are very optimistic but it's _always_ in the back of your mind.  

Keep us posted.  I've heard such wonderful things about M.D. Anderson.  I checked not long ago to see if they were on our insurance, "just in case".  They are thank heaven.


----------



## Hophop4 (Jan 31, 2009)

Htoo0....

Good luck to your FIL, I hope they can help him there.


MelBay....

Thanks for the link.

So far I have been pleased with MDAnderson.  They are so efficient.  I was at my family doctor's office the other day and talking to the gal there about MDA and all of a sudden she said we just got a followup report from them on you.  I had just given MDA this doctor's name just a couple days before.  That was fast.


----------



## Hophop4 (Feb 13, 2009)

*Another Update*

A month has passed since I started this and all the Medicare and Insurance approvals have come back and now I am scheduled next week, Monday to Thursday, for a total of 18 appointments.  eeek I am just tired of thinking of it.  I will have a hospital stay, I think, Thursday night and get a one dose of chemo on Friday and stay Friday night, go home Saturday.  The following Monday I go back and they start me on approx 4 days of injections to boost the stem cells (which I do myself)  then go back daily for blood tests.  When they think I am ready, they will pump the blood with a machine that separates the stem cells and the blood goes back in me and they store the stem cells. This is done daily several times until they have enough stem cells stored.  Then they addmit me to the hospital for about 3 weeks.  They will give me strong chemo treatments for couple days then put the stem cells back in and then monitor me for the rest of the time.  When I get discharged from the hospital I have to stay within a block of hospital for one week with someone with me 24 hours in case of emergency.

Now for the bad news:  Doc says chemo will be so strong, I will lose my hair even with only 2 days of chemo.  Well, I guess it will grow back in.   I can't go in any pools or beach water until next year.  Might be able to take my Landmark July vacation but no water.

Will keep you posted.


----------



## Kay H (Feb 13, 2009)

HOP,
this sounds so tireing but in the long run, perhaps the results will be worth it. I wish you the very very best.  You'll be in my prayers.

Please let us know when it is all over so we can rejoyce with you.


----------



## funtime (Feb 13, 2009)

Hop - 18 appointments - that is a record!  Please keep us posted.  You are doing your bit for educating others by your posts as it helps others who chime in with their knowledge.  In short, even as you are zapped and lying in your bed you are helping others!  Best of everything with your treatments.  Funtime


----------



## Hophop4 (Feb 13, 2009)

Thanks,

The one good thing about all these trips to MDA is we live less than 30 miniutes from the Medical Center.  Others that come in from out of town or state end up in a hotel/apt for couple months or more.


----------



## dmharris (Feb 13, 2009)

Hop,

You are in my prayers.

A positive approach to your time hospitalized might be to catch up on things you might have always wanted to do, but didn't get the time to, e.g. read, write letters, journal your life's lessons, tie fish flies, knit, write out recipes, put photos in albums, whatever makes you happy.  Think of the opportunity to catch up on something you enjoy.


----------



## Htoo0 (Feb 13, 2009)

Wishing you all the best. Thanks for the update.


----------



## Hophop4 (Feb 13, 2009)

dmharris said:


> Hop,
> 
> You are in my prayers.
> 
> A positive approach to your time hospitalized might be to catch up on things you might have always wanted to do, but didn't get the time to, e.g. read, write letters, journal your life's lessons, tie fish flies, knit, write out recipes, put photos in albums, whatever makes you happy.  Think of the opportunity to catch up on something you enjoy.



I'll have my laptop, to keep you all updated.


----------



## MelBay (Feb 14, 2009)

Journaling is a great idea.  My husband (who has non-Hodgkins Lymphoma) started a blog about this test.  It helps tremendously with keeping everyone informed, and cuts down on phone calls which can get overwhelming, especially if you are repeating the same story over & over.

He's enjoying honing his writing and has discovered he has a pretty good literary sense of humor.  Our family & friends call & complain if he misses more than a couple of days in a row.  

There are lots of free blogs you can use.  If you can use TUG, you can blog!

Just a suggestion.  You'll be in my prayers.


----------



## KCI (Feb 14, 2009)

Our prayers are with you to keep you safe during this coming journey you are facing and hope for the very best outcome.


----------



## Jaybee (Feb 15, 2009)

Hop, I've been following your saga, and I want you to know that my prayers are with you, too.  As someone else said, attitude has much to do with healing, and yours sounds awesome.  Be strong, and I know we'll all be waiting to hear how everything goes.  Healing hugs...    Jean


----------



## Karen G (Feb 15, 2009)

Hophop4 said:


> I'll have my laptop, to keep you all updated.



Have you heard of Caring Bridge? You can set up your own webpage and post a journal of your progress. People can sign up to get email alerts when you've posted a new entry. I've been following the progress of a friend of a friend who has been undergoing treatment after a bone marrow transplant, and it has been a great way for everyone to keep in touch.

I'm praying for your healing and return to good health, as well as many more timeshare vacations!


----------



## Hophop4 (Feb 15, 2009)

Right now they have me scheduled to go in late Friday night for one chemo treatment on Saturday and come home Sunday.  But when I go back in for the three weeks it will be very stong chemo treatments for first few days and I know it will make me very sick. Not sure what shape I will be in then.  I keep saying to myself what I went through two years ago before and after my spine surgery and all the pain I went through this will be easier.


----------



## Jestjoan (Feb 16, 2009)

I know it's not the same, but my chemo wasn't so bad. I never got sick (threw up, I know, thanks for sharing). The first treatment was the worst and they were better after that. They have great nausea meds nowadays.

I hope your chemo won't be as bad as you are expecting. My doc more or less did hint that some of the illness can be caused by anxiety etc.

PLEASE, drink every bit of water that they tell you to drink. Measure it out so you are sure.


----------



## Hophop4 (Feb 16, 2009)

I have already been through Chemo twice.  First time was 4 months with Alkeran pills which just thinned out my hair a little until I got off it. I didn't get sick from it.  Then I was on Velcade for 6 months no side affects from that so I have been lucky so far.  Next weekend I will go in hospital (2 nitghts) for one treatment of Cytoxan for mobilization I doubt I will have any side effects from that (I hope not anyways) but when I go in for the 3 weeks stay I will get 2 or 3 days of chemo Melphalan which is Alkeran but it will be IV and very very strong.  So just hoping for the best.

I just got home from Hospital and we can cross off 6 appointments from the 18 list.  I had another Bone Marrow Biopsy done this morning and my back is little sore tonight.  The gal that did it was pretty good, I only felt a little pressure.  She was better than the first gal that did it a month ago, that one really hurt.  

Tomorrow is another day.


----------



## Hophop4 (Feb 21, 2009)

*Another Update:*

I am at MDAnderson Hospital for the weekend got here around 9 pm last night.  I had to wait all day for a room but they finally got me in.  They started me with an IV last night and this morning add 4 more.  First 3 drugs to offset the side effects on the chemo.  One has to run for 24 hours called Mesna something to do with the bladder.  Then they added the chemo Cytoxan.  I was a little liight headed earlier today but feel better now.  The food has been pretty good and the menu is like ordering room service at a hotel.  You call them and they bring what you want.  Not your typical hospital meal routine where they bring trays up for all the floor at one time.  If you order something you can't have they will tell you.  (what would they do without puters) I should be going home early Monday or even Sunday night.  We will see tomorrow.  Then I start the day trips again in the clinic for injections every day.  Originally I was going to do the injections myself which I would have gotten at the pharmacy and found out with my prescription drug program it was going to very expensive ($2400 not sure what the co-pay is) so they are going to do it in the clinic so Medicare will pay it. This chemo I got today is suppose to kill the stem cells in the bone marrow and the injections will start new baby stem cells so they have to get enough cells when they pump the blood.  So the injections will continue thru this process.  That's it for now


----------



## dmharris (Feb 23, 2009)

Hop,

I am sending a prayer your way. I also read this today.

*Take up knitting.* According to research at the Harvard-affiliated Benson-Henry Institute for Mind Body Medicine, the repetitive motion and focus of needlework can elicit what's known as the relaxation response—a calming meditation-like state that slows heart rate and causes blood pressure to drop. In addition, a study published in the _Journal of the American Geriatrics Society_ suggests that knitting is associated with a lower risk of dementia for those 65 and older. 

Was it Rosie Greer who did knitting or needlepoint?


----------



## Hophop4 (Feb 24, 2009)

I am back home now got sprung yesterday afternoon.  They said I tolerated the chemo very well, that's for this round.  I went back early this morning for a blood test and got my two injections to start the new baby stem cells.  I go back every day for this for about 2 weeks.

On the second floor of the clinic they have a hospitality room and they have a craft basket there with individual projects in ziplock baggies.  Something to keep you busy.  Well, I picked up a project that was embroidering a bird.  I use to do embroidering when I was a kid and have not done it in a long long time, kinda brought back some childhood memories.  If I finish it I will frame it.


----------



## Hophop4 (Feb 26, 2009)

I have been getting 2 injections every day this week and no side effects from it.  They said I might have some bone or back pain from it, so far nothing yet.  Injections continue every day and Monday when I get another blood test they will check to see if they can start to harvest the stem cells in the blood on Monday. If so I might be back in the hospital for another round of chemo and then the actual transplant.  That's for now.


----------



## Kay H (Feb 26, 2009)

I really admire the positive attitude many of our tuggers getting chemo and/or having surgery have had.  I'm sure it has a lot to do with your recouperation amd your final outcome.  May the remainder of your therapy sessions be as carefree and painless as the first have been.  I wish you great success.


----------



## Hophop4 (Mar 2, 2009)

I had another blood test this morning and my white blood cells dropped real low and my platelets dropped too.  If the platelets drop again when I get tested on Wed they will give me a transfusion. The injections will continue probably another week.


----------



## Htoo0 (Mar 2, 2009)

Keeping you in our thoughts.  BTW, drive defensively down there. FIL was being taken in by his son Friday and someone creamed the right rear door. Fortunately, MIL was not in the car this trip as that is where she would have been sitting. Everyone is OK and his radiation surgery looks good so far. Hang in there, keep us posted when you're up to it.


----------



## Holysmoke (Mar 2, 2009)

Hophop4 said:


> Some of you on here know that I have been getting chemo treatments for Multiple Myeloma.  Almost 2 years ago I had a tumor removed from my spine and had chemo to get the 25% that the surgery didn't get.  All went well and I was doing good for more than a year until April 2008 when the Myeloma came back.  Multiple Myeloma is cancer in the bone marrow that attacks any bones.  I started a different type of chemo in May and in my 5th month of treatment.  I have one more month to go till end of October.  While at treatment last week, I saw the Doc and he said after the treatments he is going to refer me over to M. D. Anderson Hospital at the Houston Medical Center for a Bone Marrow Transplant.  It will take 6 to 8 weeks to get the paperwork and approvals and pre-op testings and looking around the first of the year for the transplant.  It will take 4 weeks then, maybe in hospital or partially as out patient.  So that's the good news I have to share with all my Tugger friends.



this oncologist has been curing cancer in Italy for years with sodium bicarbonate.

About Dr. Simoncini http://www.curenaturalicancro.com/


----------



## MelBay (Mar 2, 2009)

Keeping you on the prayer list!  Hang in there.


----------



## Hophop4 (Mar 2, 2009)

Htoo0 said:


> Keeping you in our thoughts.  BTW, drive defensively down there. FIL was being taken in by his son Friday and someone creamed the right rear door. Fortunately, MIL was not in the car this trip as that is where she would have been sitting. Everyone is OK and his radiation surgery looks good so far. Hang in there, keep us posted when you're up to it.



Sorry to hear about the car but glad your FIL is doing good.  We only live 15 miles from the MDA and I don't even get on the freeway.  We take the back road (Main Street) in and it's a real easy drive.


----------



## Hophop4 (Mar 7, 2009)

*Another Update*

Well the injections are working and on Thursday morning blood tests showed the new baby stem cells were ready to start collecting so they scheduled me for 1 PM.  It took 3 hours and after I was finished I almost passed out.  They called the doc and he ordered me to go to ER since it was after 5 PM.  They ended up keeping me the night for observation hooked up to heart monitor and IV.  They released me 6:30 AM since I had another appointment Friday morning for the 2nd collection of stem cells.  That went ok no problem.  Between the 2 collections they collected 6 million new baby cells.  I had one more collection this morning and I think this might be the last.  They want a total of 8 million.  This has really been an interesting procedure.


----------



## dmharris (Mar 7, 2009)

Hop,

Thanks for the update.  A question:  A woman in my area has acute myelogenic leukemia, AML, and they are transplanting some of her own stem cells.  I am ignorant, but wondering if they would have done the same thing with her as you or is there another way to get your own stem cells?  E.g. if when she had a baby and they saved the cord blood, does that work?  

Prayer for healing coming your way!


----------



## Hophop4 (Mar 7, 2009)

That is a possibility.  They are doing a lot of baby cord stem cell transplants now and lots of reaserch on it and they are being saved for this reason. She is probably going through the same procedure as I am.  The only other way would be is having a donor donate the stem cells, if for some reason the reciepient can't donate their own.
There was a gal in the bed next to me yesterday while collecting the stem cells and she was just a kid 19 yrs old from Dallas.


----------



## Hophop4 (Mar 9, 2009)

Things are really moving fast now.  I finished Saturday having all the stem cells collected that's needed and I will meet with Doc on Wed.  I think I will be going in the hospital Thursday evening.  Will have chemo Friday and Saturday and they will transplant the new baby stem cells on Monday by IV and then a 3 week stay in hospital.  My understanding is if they don't use all the stem cells they will keep them frozen in storage for 5 years and I am the only one that can use them if I need to.


----------



## Jaybee (Mar 9, 2009)

Hop, I wish you well.  I am still remembering you in my prayers every day.  Things are sounding really positive.  Hugs,  Jean


----------



## dmharris (Mar 10, 2009)

I'm putting you on the prayer chain at my church; we're a bunch of prayer warriors with some amazing results.  Well, we didn't do it, the messages must have gotten through to the Almighty.


----------



## Hophop4 (Mar 13, 2009)

I am finally in the hospital got here last night around 10:30 PM, had to wait for a room.  This place is full.  When one leaves one comes in.
Well I made it through the first day.  Had the first chemo this morning took about 30 min  and had to keep eating ice 30 min before until 30 min after.  This is to keep from getting mouth sores.  I get one more chemo treatment tomorrow.  So far no side effects from it ...not yet.  I already started losing my hair couple days ago from the chemo couple weeks ago.  That's it for now.


----------



## Htoo0 (Mar 14, 2009)

Keeping you in our thoughts. Try to keep in touch when possible.


----------



## dmharris (Mar 14, 2009)

Too bad they can't let you have popsicles instead of ice chips, that would be more fun!  

Keep the faith!


----------



## Hophop4 (Mar 14, 2009)

dmharris said:


> Too bad they can't let you have popsicles instead of ice chips, that would be more fun!
> 
> Keep the faith!



I just finished up almost 2 hours of ice and after a while the ice tastes yuk lol  but if that prevent mouth sores I'll do it 3 hours.

Well, I took a shower this morning and left most of my hair in there.  One thing my head will be cool for this Houston summer weather.


----------



## Kay H (Mar 14, 2009)

Hophop4 said:


> I just finished up almost 2 hours of ice and after a while the ice tastes yuk lol  but if that prevent mouth sores I'll do it 3 hours.
> 
> Well, I took a shower this morning and left most of my hair in there.  One thing my head will be cool for this Houston summer weather.




I LOVE your attitude.  I have faith that it will get you through the toughest times and hasten your recovery.  My prayers may help too.  Good luck, Hop.


----------



## KCI (Mar 14, 2009)

Keep up the positive attitude...I am so overwhelmed by how you are dealing with this...you are in my thoughts & prayers


----------



## Jaybee (Mar 14, 2009)

Hop, I think you have a bunch of virtual hand-holders here, and we're all pulling for you.  
Your attitude has to be a huge help.  I'll keep checking on you, along with the others.  You sure won't be alone.  You might end up feeling like those people in the Verizon ads, with us all mobbed up behind you.  Hugs and prayers... Jean


----------



## Zac495 (Mar 15, 2009)

How do I get on the registry in case I'm a match for someone? Wow - wouldn't it be cool if it were you?

All my thoughts and love.


----------



## Hophop4 (Mar 15, 2009)

Thank you all for caring so much.  The weekend Doc came in this morning and said to think positive since I haven't had any other side effects from the high dosage of chemo except for the hair.  Tomorrow they will transplant the stem cells back in.  

As for donors, in my situation I am my own donor.  That's why they harvested my own new stem cells after they killed the old ones with chemo couple weekends ago and gave me injections to build up the new baby stem cells and then they freeze them until ready to use. 

To be a bone marrow donor, there is a registry to sign up with.  It is a little more complicated than just your normal donating blood banks.  They have strict guidelines they go by.  They won't let anyone over 60 to go on the registry.  You have to take a test to see if you can qualify.  You can search national bone marrow registry and read about.  Actually my procedure is called Stem Cell Transplant. They get the stem cells from pumping the blood instead of getting it from the Bone Marrow which is harder I think.


----------



## Liz Wolf-Spada (Mar 15, 2009)

Hop, I'm so glad you are doing so well. My thoughts and prayers are with you, also.
Liz


----------



## rosebud5 (Mar 15, 2009)

Went through this with my dad. He was 64. I wish you the best and hope you beat this thing.


----------



## Hophop4 (Mar 18, 2009)

Hi all,

The Stem Cells were transplanted on Monday around noon.  It took about 45 min for 2 bags to drip by IV.  They also gave me another IV for nausea and some Benedryll that kind of made me drowsy.  Lost my appitite yesterday but I ate a little today.  Still had the nausea so they gave more for that which made me drowsy again.  Got in a few short naps.  Other than that I'm doing ok.  Just have to hang around here until all my blood counts get back to normal.


----------



## Jestjoan (Mar 19, 2009)

I hope and pray that will be very soon and that you are on the road to recovery.


----------



## Hophop4 (Mar 27, 2009)

*Time for an Update*

Since the transplant I was ok for few days then the nausea got worse with some vomiting, soar throat and then came down with feaver last weekend for about 4 days.  My Platelet blood count dropped so low they had to give me a Platelet Transfusion and a Blood Traansfusion twice 2 days.  Blood counts are looking good now and if it stays like that I could be out of here on Monday but still have to stay in a Hotel nearby for about a week.


----------



## dmharris (Mar 28, 2009)

Thanks for the update Hop, I was wondering about you just last night.  More prayers coming your way!


----------



## Jaybee (Mar 28, 2009)

Thanks for staying in touch about your progress, Hop.  I hope you're feeling better soon, and that the nausea is abating.  More prayers for you and your complete recovery. Jean


----------



## Jaybee (Apr 6, 2009)

Hop, I keep waiting to hear how you're doing, and it's worrisome not seeing anything.  I do hope things are going well for you.  Jean


----------



## Hophop4 (Apr 8, 2009)

*ok here is my update*

Hi all,  I am still alive!!  lol

Well, I was released from the hospital Monday after 3 and 1/2 weeks stay.  They had to be sure I wasn't going to have a fever again or else I would have ended up in Emergency.  I am staying at the Extended Stay Hotel a block from MDA. They would not let me go home.  Yesterday I had to go back to the clinic for a blood test and see the Nurse.  I was there all morning and got a bit tired, I did take my walker with me.  I have a caregiver with me at the hotel while Jim is at work during the day.  She went with me.  It did take a lot out of me but it is going to take time to get all my strength back.  The blood tests results came back good and I go back on Friday again and possibly be able to go home Saturday morning.   They will set up appointment with my Doc for next week, hopefully will know more then.  I think in a month they will do a Bone Marrow Biopsy and see what that will show.  In the meantime, I can't go in any water or pools for a long time. That's it for now.  Thanks for all your concerns and caring.


----------



## Wonka (Apr 8, 2009)

Hophop4 said:


> Thanks,
> He said you don't need a bone marrow donor to do this procedure any more.  They take your own bone marrow and heat up the stem cells, kill the cancer and put it back in. ... or something like that.  I will learn more about the procedure as times goes on.



Wow!  I hadn't heard that before...medical advances are amazing.  We're all hoping for your full recovery...Good luck!


----------



## Htoo0 (Apr 8, 2009)

Glad to hear from you. Sounds like it's going well if not for it being such an ordeal. Keeping you in our thoughts.


----------



## Hophop4 (Apr 8, 2009)

Wonka said:


> Wow!  I hadn't heard that before...medical advances are amazing.  We're all hoping for your full recovery...Good luck!



Let's see if I can give you a quick review of this procedure.

In my case I was my own donor. Some people canniot be their own donor.  So depends on the situation.  They zapped me with one day of chemo to kill the cancer in the existing stem cells. In hospital for 4 days.  Then went back to clinic for 2 injection shots every day for about 10 days until blood tests showed new baby stem cells were growing.  The injections help the new stem cells grow faster.  When they feel it is ready they put you on a blood pump that separates the new stem cells from your blood and they save the stem cells and the blood goes right back into you.  Takes about 3 hours.  Did this 3 days.  When they have enough, I went into hospital first two days they zap me with strong strong chemo to kill all the cancer and day off then next day they transplanted the new baby stem cells back to me through an IV.  That was it.  All done by IV.  Had some after effects but feeling good now.  We even took a walk around the hotel grounds today just to get some exercise.  Nice weather today.


----------



## luv2vacation (Apr 9, 2009)

Hop - I have been following your progress and am so glad that you are 'hanging in there'.  Your positive attitude is definitely a big part of that.  I know as I have personally been down this road with my mom.

Three and a half years ago, she had a stem-cell transplant for a very aggressive, rare form of non-hodgkins lymphoma.  They tried to harvest her own cells but, after two days realized that they would not be able to get enough.  She was lucky, however, that her sister was a 100% match.  So she donated the cells.  My sister and I were beside my mom always, every step of the way - doctor visits, chemo treatments, transfusions, transplant, middle-of-the-night trips to the ER, all of it.  I learned way more than I ever wanted to about this process.

Also through my interaction with the Leukemia & Lymphoma Society - I ran a marathon (first time) with Team in Training in honor of my mom - I learned a lot more about the different blood cancers and the stem-cell donor process.  I also met a lot of patients and survivors and tons of people whose lives have been affected by these cancers.

Through all of this, I have learned that medicine has come so very far in helping to fight this disease but still the MOST important aspect is the _attitude of the patient_.  

So I say to you now: keep your positive attitude, the restrictions (and isolation) will not last forever.  Your body will fight as long as you tell it to.  I wish you the very, very best and please continue to keep us posted.  We care.


----------



## Hophop4 (Apr 9, 2009)

Thanks for sharing your Mom's story with us.  I sure do hope she is doing well.

Medicine has come a long way with Cancer Treatments.  I think MDA does the most Stem Cell/Bone Marrow Transplants in the world.


----------



## Jaybee (Apr 10, 2009)

Hop...It's so good to see more from you, and to see such upbeat news.  Thanks for talking more about the procedures. It's all very interesting to hear how far the medics have progressed in cancer treatment.  
I don't forget to say a prayer for you every night, and I hope and pray that things will continue to go well in your treatment and your response.  Your attitude is an inspiration, and a joy to behold....Ohdear!  Now I'm getting mushy. LOL!


----------



## Hophop4 (Apr 10, 2009)

I went for blood tests again this morning and all looks good.  They took the tubing out from my porta-a-cath that they had accessed in the hospital for blood tests.  I got the ok to leave hotel and go home but will have a Doc appointment one day next week.  I still feel a little weak but that will take some time to get all my strength back.  That's it for now.


----------



## pammex (Apr 10, 2009)

Hophop,  Keep up your positive attitude, you are an inspiration to all....we are praying for you all over the world as you can see......Prayers from Mexico continue.....Stay in touch with us, we do care, all of us!


----------



## funtime (Apr 11, 2009)

*Hop - you are a leader!!*

Hop - you are doing so much good in the world including massive amounts of patient education and medical education for the layperson.  Who knows if two years from now, someone will search this site and be completely inspired by your journey and your ability to relay the journey in terms that we can all understand. And who knows how many will be inspired to search out the donor registry and donate because you are our TUGGER friend.  Often local bone marrow donor drives center around one or two patients  who need bone marrow and/or their friends and family and because of that need, a drive is established at a shopping mall and many many people end up registering.  That just happened here in Dallas.   I am not sure, they may just take the samples and place the person on the registry and then you are called later if a match is found to see if you will donate for the actual donation.  Unfortunately, I am not eligible to donate.   For one reason I just crossed over that 60 line in the sand!   I am so very pleased that MDAnderson is your hospital as it is obviously one of the top, top tier hospitals.  Oh what else?  Gee I would wish you a good recovery but I know with your positive attitude you will have the best recovery possible.  Cheers Funtime


----------



## Hophop4 (Apr 17, 2009)

*Another update*

Ok, I am feeling pretty good now  getting stonger every day and walking around more.  I had an appointment with my Doc yesterday and he said I was doing good.  My blood counts looked good except for my magnesium so I have to take some meds for that until it comes back up.  I go back in 2 months at that time I think they will do a Bone Marrow Biopsy and that should tell us if the transplant really worked and killed out all the cancer.  I will also have a Bone Density Xray done to check to see how strong my bones are and if I will stop getting the Aredia treatments that I have been getting the last 2 years.  Now when I go back in a year for my checkup I will have to get all the Immunization Baby Shots all over again that I had when I was a baby.  Since I have all new baby stem cells now everything was wiped out.

I still can't go in any pools or water beaches until next year.  But I probably will be able to take my July vacation but.....no water!!


----------



## SueDonJ (Apr 17, 2009)

Wow, this is a very inspiring thread to read.  Hop, you've got a great attitude and I wish you continued success in your treatment/recovery.

About the re-vaccinating next year - these days it's amazing how little "scarring" results from them, so at least you won't have to worry about two bullseyes on your upper arm.  

all the best to you and your family,


----------



## Jaybee (Apr 17, 2009)

Hop...That is wonderful, uplifting news, and I pray that the cancer cells are toast, and that you will be well and strong again.  Your notes have been so educational, and personal, and I almost felt I was going through some of that with you (but in a much easier way).   I will keep praying for your complete recovery, and thanks so much for sharing your adventure with us.  Hugs... Jean


----------



## Hophop4 (Apr 18, 2009)

Thanks all,

I think it helped me too by posting and also reading all the replies. It kept me going through all this.  I probably won't have any more updates to report for a month or so but I will post when I do.


----------



## Htoo0 (Apr 18, 2009)

Well, you can still check in on us!


----------



## funtime (Apr 19, 2009)

*donor found!*

In my last post, I mentioned that there are bone marrow drives locally and that we just had one here in Dallas at Northpark mall.  I saw in the paper that that drive resulted in several hundred new bone marrow donors and the woman in whose name the drive was set up also found a donor so these are good things to be on the lookout for in your community.  Funtime


----------



## Hophop4 (May 18, 2009)

*Update Time*

Hi all,

Just thought I would post a short update.  I am feeling pretty good now and getting around.  I am scheduled to go back to MDA for a Bone Marrow Biopsy and a Bone Density Survey Xrays on June 9th and a visit with the Doc on June 11th for the results.  I am taking extra meds for anti-bacteria and virus.  Still no pool, beach water and they added no bath tub.  That's it for now.


----------



## Kay H (May 18, 2009)

Thanks for checking in.  At least it sounds as if nothing is any worse.  Good luck with your test results.  You are still in my prayers.


----------



## SueDonJ (May 18, 2009)

Hophop4 said:


> Hi all,
> 
> Just thought I would post a short update.  I am feeling pretty good now and getting around.  I am scheduled to go back to MDA for a Bone Marrow Biopsy and a Bone Density Survey Xrays on June 9th and a visit with the Doc on June 11th for the results.  I am taking extra meds for anti-bacteria and virus.  Still no pool, beach water and they added no bath tub.  That's it for now.



Let us know when they tell you no showers either - we'll be sure to stand 3 feet further back and won't insult you by crinkling our noses.   

It's great to hear that you're feeling good.  Thanks for the update, and here's to continued success....


----------



## Hophop4 (May 18, 2009)

SueDonJ said:


> Let us know when they tell you no showers either - we'll be sure to stand 3 feet further back and won't insult you by crinkling our noses.
> 
> It's great to hear that you're feeling good.  Thanks for the update, and here's to continued success....




You made me laugh.  I was hoping to get in the tub since I can not get in the pool.  The water is good for my back since I had the spine surgery.  And we are going to Seaside in Galveston May 30 for the week and I got a Presidential with the big jacuzzi tub.


----------



## Beaglemom3 (May 22, 2009)

HopHop,
  How are you doing ?

  PM me if you get back this way. Millennium sometimes hosts a social event for those Velcade users. 

 I have an extra week or two if you'd like (free).

  Oh, mind your nurses ! 

  Thinking of you,
  B.


----------



## Cathyb (May 22, 2009)

Beaglemom -- that is very nice of you -- Tuggers are great people


----------



## Beaglemom3 (May 22, 2009)

Cathyb said:


> Beaglemom -- that is very nice of you -- Tuggers are great people



Oh, anything for a "local" boy and Red Sox fan. 

He was doubly invited on both forums - that's the beauty of timesharing folks.


----------



## Beaglemom3 (May 22, 2009)

I worked for Millennium Pharmaceuticals and we are very proud of the efficaciousness of Velcade and very protective of the patients who have used it.


----------



## barndweller (May 22, 2009)

Just catching up on your progress, Hop. Wishing you a full recovery and sending lots of positive thoughts your way from out in the west. If prayers from Tuggers and TS4Ms members will speed your healing then you will be back to full speed in no time.

Hugs, from Julie in the Barn


----------



## Hophop4 (May 22, 2009)

Beaglemom3 said:


> HopHop,
> How are you doing ?
> 
> PM me if you get back this way. Millennium sometimes hosts a social event for those Velcade users.
> ...





I would love to make a trip back there, it has been so long but I can't fly.  I still have to be careful where I go.  If I hadn't had the transplant I would have been up there last month.  Day after I got out of the hospital my cousin passed away down in Florida and the funeral was in Lowell, MA. but I couldn't go.  I have some relatives I would like to visit.  I have an aunt in Marlboro who is 101 years old and another cousin who is 89 in Webster and many many more.

Thanks for the weeks offers.  I have plenty of weeks, I just can't go far to use them. We are using one next week to go to Galveston. We have our Landmark, Panama City Beach coming up July 4th.  We will drive there and I will be sitting out on the balcony watching the waves come in and seeing the fireworks!!

Everyone have a nice Memorial weekend and stay safe.


----------



## Hophop4 (Jun 11, 2009)

*Update... We All Waiting For*

Well here is the news:

On Tuesday, I had Blood Tests, Bone Density Survey Scan and Bone Marrow Biopsy.  Today, I went back to MDA for Doctor's Appointment to get all the results.  Blood Tests were good.  Bone Density looked good also which means I do not have to start back on Aredia treatments once a month to strengthen the bones but will have another scan in one year to see how it goes.  Bone Marrow Biopsy came back normal and I am in 100% REMISSION.  There is a possiblity that the myeloma can come back but let's hope not for a long long time or never. I go back in 3 months.  I will be having follow up visits with my original doctor next week who will put me on maintenance treatment (pills). 

I am ready for my Florida July Vacation coming up.


----------



## SueDonJ (Jun 11, 2009)

Hophop4 said:


> ... 100% REMISSION



Oh my, that is absolutely GREAT news!  I am thrilled for you and your family.  Now go on out there and enjoy life!


----------



## Kay H (Jun 11, 2009)

Oh Hop, that is great news.  Make the best of iy.


----------



## jgirvine (Jun 11, 2009)

Wonderful news.  Congrats.


----------



## lamb (Jun 11, 2009)

Wishing you continued remission and joyful moments each day!

Linda


----------



## Htoo0 (Jun 12, 2009)

Fantastic! Hope things continue to go well!  :whoopie:


----------



## MULTIZ321 (Jun 12, 2009)

Hop,

That's great news! Thanks for letting us join you on your journey to recovery.
You're an inspiration to us.

Richard


----------



## funtime (Jun 12, 2009)

Way to go!  I am very happy for you.  Funtime


----------



## Hophop4 (Jun 13, 2009)

Thanks again to all who have posted on here.  Doc told me I can walk in the water at the beach and sit by the pool but not to get water splashed on my face for now.  So that's a start.


----------



## dmharris (Jun 17, 2009)

Hop,

God is Good!  Continued good health news!


----------



## Zac495 (Jun 17, 2009)

Oh my gosh! I am THRILLED for you. I didn't see this thread when you were going through this earlier - so I started reading from the beginning, not knowing the end until now. What fabulous news -and what a strong person you are!! I want to hear all about your vacation!


----------



## Hophop4 (Jun 17, 2009)

I am ready for vacation   I went to see my Doctor today and he also ok'd my vacation.

My MDA doctor is now turning my treatments back to my original doctor for now and I will go back to MDA in 3 months for another checkup.   I have to go on a final chemo maintenance treatment which will be Revlimid (pills) for about one year but I dont have to start that until we get back from our July 4th week vacation.


----------



## taffy19 (Jun 17, 2009)

Hophop4 said:


> I am ready for vacation  I went to see my Doctor today and he also ok'd my vacation.
> 
> My MDA doctor is now turning my treatments back to my original doctor for now and I will go back to MDA in 3 months for another checkup. I have to go on a final chemo maintenance treatment which will be Revlimid (pills) for about one year but I dont have to start that until we get back from our July 4th week vacation.


What wonderful news that you are 100% in remission. I am sure that all the prayers, vibes and good thoughts for you have helped tremendously too. What a nice community this is.

Have a wonderful vacation with your family from the west coast.


Hophop4 said:


> Well here is the news:
> 
> On Tuesday, I had Blood Tests, Bone Density Survey Scan and Bone Marrow Biopsy. Today, I went back to MDA for Doctor's Appointment to get all the results. Blood Tests were good. Bone Density looked good also which means I do not have to start back on Aredia treatments once a month to strengthen the bones but will have another scan in one year to see how it goes. Bone Marrow Biopsy came back normal and I am in 100% REMISSION. There is a possiblity that the myeloma can come back but let's hope not for a long long time or never. I go back in 3 months. I will be having follow up visits with my original doctor next week who will put me on maintenance treatment (pills).
> 
> I am ready for my Florida July Vacation coming up.


----------



## Hophop4 (Jul 10, 2009)

Well we are here in Panama City Beach looking out on the beach. Watched the Fireworks from our balcony last weekend.  Water was a little rough for me so mostly sat in beach chair on edge of water.  this morning it looks calm tho so might go down on beach for a while.  I still can't get in the water completely.  

We head home tomorrow morning and then back to the Doctor on Wednesday.  Then I will find out if my insurance for my prescription plan has approved my prescription for Revlimid.  They denied it the first time couple weeks ago.  Anyways if they approve it I will still have to pay a co-payment which will be very expensive.  This drug full price costs around $7000/month supply.  Will see what happens.


----------



## Kay H (Jul 10, 2009)

I am smiling from ear to ear for your success.  I'll continue to keep you in my prayers but I am so happy about your medical report.  I'll bet this was your best vacation ever.


----------



## Htoo0 (Jul 10, 2009)

Glad to hear things continue to go well. Hope things work out on the insurance. My mother was put on a medication which was close to $10K. She was half afraid they would hire a hit man as they might decide it would be cheaper than paying for the prescription!


----------



## MelBay (Jul 10, 2009)

Hip hip hooray for you!  I'm still keeping you on the prayer list.    And keep us posted.

Aren't insurance companies a PITA, by the way?


----------



## Hophop4 (Jul 11, 2009)

Well we just got home tonight and I got in the mail three different statements from Medicare on my MDA bills.  I guess they are paying what they approved.  Also got a statment from MDA which says I owe no amount.  So can't complain about Medicare but the Medicare Prescription Part D ....STINKS....  Now the insurance denied the first approval but the pharmacy at doc's office said they might approve it if I take dexamethazone with the Revlimid.  I don't need the dex it is a steroid pill used with chemo treatments.  I don't know why ins company wants to make you take more meds than needed.  It's cost is cheap but it raises your blood sugar, I have been on it twice before and I had to take insulin with it every time.  Guess I will find out more on Wednesday when I go to doctor.


----------



## Hophop4 (Jul 15, 2009)

*Another Update*

Went to my Doctor today and my last blood tests came back normal again and I feel great.  As for the drug insurance they will not approve it so going on Revlimid for maintenance is out for now.  The reason for this is Revlimid is a specialty drug and it is approved and used for initial treatments for Multiple Myeloma.  But they want me on it for low dosage maintenance treatment for a year and it is still in trial research for maintenance and no one really knows if it really works or not.  So I just have to hope and pray I stay in 100% remission for a long time.

I have been talking with a friend that is going thru the transplant right now and it will be interesting to see when she gets to the point of maintenance if her insurance will pay for it.  She was on Revlimid for initial treatments but she is not on medicare, she has employee coverage ins.

That's it for now.


----------



## Hophop4 (Sep 9, 2009)

*Just Another Update*

I went yesterday to MDA for my 6 month checkup had Blood Tests and another Bone Marrow Biopsy.  And a visit with the Doc today to get results.   All came back normal again.  I can stop taking the prescriptions that i was on except for one which I have to continue foreever but he changed it to a different brand so I can get it in generic and won't get in that medicare donut hole.  As for the maintenance treatment which is not going to happen, he will monitor me every 3 months for now.  I go back in December.

Now the great news I can get back in to pool and start doing my water aerobics once again.  So far we have been on 3 vacations since June and have 2 more coming up, one end of September and one end of Novenber.  Making up for lost time


----------



## Karen G (Sep 9, 2009)

What wonderful news!  So happy for you.


----------



## suzanne (Sep 9, 2009)

Thats wonderful news. I am looking forward to seeing you in November.

Suzanne


----------



## Fern Modena (Sep 9, 2009)

So happy to hear the good news, dear.  And thanks for sharing your experience so others may benefit from the information.

Enjoy the swimming.  I remember once I was in Mexico, had surgery, and couldn't swim.  I felt so deprived...

Fern



Hophop4 said:


> I went yesterday to MDA for my 6 month checkup had Blood Tests and another Bone Marrow Biopsy.  And a visit with the Doc today to get results.   All came back normal again.  I can stop taking the prescriptions that i was on except for one which I have to continue foreever but he changed it to a different brand so I can get it in generic and won't get in that medicare donut hole.  As for the maintenance treatment which is not going to happen, he will monitor me every 3 months for now.  I go back in December.
> 
> Now the great news I can get back in to pool and start doing my water aerobics once again.  So far we have been on 3 vacations since June and have 2 more coming up, one end of September and one end of Novenber.  Making up for lost time


----------



## Jestjoan (Sep 9, 2009)

Fantastic news. So happy to hear it.


----------



## Kay H (Sep 9, 2009)

Congrats again.  Now back to normal activities.  Ain't life grand (sometimes)


----------



## dmharris (Sep 10, 2009)

Answered prayer!  Isn't that great?  God is Good!


----------



## Htoo0 (Sep 10, 2009)

Wonderful news!


----------



## SueDonJ (Sep 10, 2009)

Excellent, Hop!  You and your family must be over the moon!


----------



## Jaybee (Sep 10, 2009)

Hop, I've been praying for you for months, and have been wondering how you were doing.  It's so good to hear this wonderful news. 
Thanks for updating us. God bless you and continue to keep you strong.  Woo-Hoo!  Jean


----------



## Hophop4 (Sep 12, 2009)

Thanks all, once again.


----------



## Jaybee (Sep 12, 2009)

Hop, this news is fantastic, and I'm so happy to hear how well things are going for you.  
For some reason, it makes me think of one of my favorite songs from "Fiddler"..."Blessings on your head; Mazeltov- Mazeltov..."   Thanks so much for keeping us updated, and sharing your journey with us.


----------



## Hophop4 (Jan 21, 2010)

*Time for another update*

It's been a while since I updated, so here it is.

My last visit to MDAnderson was in December and all tests came back normal again.  Doc there wants me on maintenance chemo so talked to my other Doc about a maintenance plan.  Went to him yesterday and I am now on a chemo drug called Thalomid pills.  Insurance Medicare Drug D approved this.  They denied the other drug I tried to get on back in September.  Here it is Januray and I am already in the Medicare Drug D donut hole.  This drug is over $6000 and my co-pay was $4417. for 28 pills. It is suppose to drop to 5% next time. Don't we all love these medicare/insurance companies.


----------



## Passepartout (Jan 21, 2010)

Hophop4 said:


> ....This drug is over $6000 and my co-pay was $4417. for 28 pills.



Good Grief, don't drop one! That's waaay more than gold. At least you're here to buy them, and that's the good news! Congratulations and we'll keep looking for the continued positive reports. 

Jim Ricks


----------



## Kay H (Jan 21, 2010)

Thanks for the update, Hop.  Hopefully my prayers helped some.  And they didn't cost $6000.


----------



## Jaybee (Jan 21, 2010)

It was so nice to see a note from you again.  I was hoping and praying that the news was still good, and Yay!  It is!
You just keep on keepin' on.  Still keeping you in my prayers.
Happy Winter!  Jean


----------



## Htoo0 (Jan 21, 2010)

Happy to hear you're doing well.


----------



## Hophop4 (Jan 22, 2010)

Thanks,
I have been on this new drug now for two days, taking them at night before bed and got a good night's sleep without tossin and turnin like I usually do because of my back.  It also acts as a seditive.  Let's hope I don't get other side effects.  

Oh, looks like winter is over down here.  It is in the mid 70's now.


----------



## Hophop4 (Mar 27, 2010)

*1-year Checkup Update*

March 16th was 1-year since I had the Stem Cell Transplant.  I was back at MDA for Blood Tests, MRI, Bone Scan and a Bone Marrow Biopsy.  All the tests came back good and I am still in remission when comparing the MRI with the first one they did last year it showed some of the lesions had actually improved. I received all my baby vaccinations five in all.

Now to convince my other doctor that I can take my vacations this summer.


----------



## Karen G (Mar 27, 2010)

Great news!


----------



## Rose Pink (Mar 27, 2010)

Hophop4 said:


> ... some of the lesions had actually improved....
> Now to convince my other doctor that I can take my vacations this summer.


Fantastic news!  Go on your vacations.  You've earned it.


----------



## Hophop4 (Mar 27, 2010)

I have to stay on chemo pills for maintenance and his main concern is blood clotting while riding for long times. Our plan is to take an extra day and drive halfway with a stopover.   Guess I will use my tests results as ammunition for my vacations.  I have a doctor appointment on Wednesday.


----------



## Jaybee (Mar 27, 2010)

Hoppity-Hop!  Yea for you!  What wonderful news...and I hope you'll be able to get back into vacation mode this summer.  What a long, painful journey you've had.  Congratulations, and I pray you'll stay in remission unremittingly.


----------



## Pat H (Mar 27, 2010)

That's wonderful news. I'm sure you can come up with a convincing argument for the Dr. why the vacations are so beneficial to your health!


----------



## Dori (Mar 27, 2010)

That is great news!  I hope the doctor gives you the all-clear to do some traveling.

Dori


----------



## Hophop4 (Mar 31, 2010)

Just saw my doc this morning and gave him all my test results from MDA and he was very pleased.  He did notice my white blood cell count was a little low but cautioned me to be careful to stay away from anyone sick.  He ok'd my vacations for this summer.  So looks like we will be going to Branson to use our week in June and Florida Panhandle in July.


----------



## falmouth3 (Mar 31, 2010)

Very good news indeed.  I'm so happy for you.

Sue


----------



## Liz Wolf-Spada (Mar 31, 2010)

Hurrah! Hurrah! Hurrah!
Liz


----------



## JudyH (Apr 1, 2010)

Great news.


----------



## SueDonJ (Apr 1, 2010)

Can't hope for better news than that, Hop, congratulations!  And thanks so much for continuing to share your story here.


----------



## Hophop4 (Mar 30, 2012)

*My 3-Year Update Since Transplant*

It has been some time since I have posted updates on my Multiple Myeloma.  It is now 3 years since I had my Stem Cell Transplant.  I have had some ups and downs since a year ago.  I did get out of remission a year ago but doctors made sure to add IV chemo treatment and increased my chemo pills to 25 mg right away which put me back in remission.  A couple weeks ago I had my 3-year checkup at MDA and I am still back in remission.  My bone density and bone survey scans came back normal with no new development showing.  So i am a happy camper now and ready for more vacations.


----------



## riverdees05 (Mar 30, 2012)

That is wonderful!


----------



## chellej (Mar 30, 2012)

Congratulations!!!!!  That is very good news. 

  Have you been able to go to the Cancer center in Sugar Land or do you still go to the Medical Center?


----------



## SOS8260456 (Mar 30, 2012)

That is great news!  I just read through this thread and you are one courageous person.  But, then again, "nothing better come between a Tugger and their vacations!"  

Get planning those vacations


----------



## Hophop4 (Mar 30, 2012)

chellej said:


> Congratulations!!!!!  That is very good news.
> 
> Have you been able to go to the Cancer center in Sugar Land or do you still go to the Medical Center?





I can go to the Sugar Land Center for Blood Tests but it depends when I'm scheduled to the tests. I have been over there a couple times.  Some of the tests they have to do it at the main center.  I have to still go to my doctor at the main center.  Last year when I relapsed my Stem Cell Doctor transferred me over to a Myeloma Specialist Doctor in the Myeloma Department and they seem to schedule my blood tests on Sunday Mornings which works out great.  It is not busy and my husband drops me off at the main door and waits for me outside.  This last time I was in and out in about 15-20 min.  If I go during the week it is a long wait.  The Bone Marrow Biopsy has to be done at the main center but I didn't have to have one done this year.  I just had the bone scans.   I don't mind driving down there it is an easy drive and not that far.  I take the back road and don't even have to get on the freeway about 20 min with traffic unless it is really backed up.


----------



## SueDonJ (Mar 30, 2012)

Oh, what great news!  Thanks for sharing it.


----------



## Kay H (Mar 30, 2012)

I love good news.  Congrats.


----------



## eakhat (Mar 30, 2012)

That's great news.


----------



## MelBay (Mar 30, 2012)

As the wife of a cancer survivor, all I have to say is YIPPEEEE!  Good for you!  Gives you a new appreciation for each and every single day, doesn't it?

Happy travels!


----------



## Htoo0 (Mar 30, 2012)

Glad to hear!


----------



## Karen G (Mar 30, 2012)

Wonderful news--thanks for the update.


----------



## MuranoJo (Mar 31, 2012)

Excellent news, Hop!


----------

