Multiple Myeloma

[Karen G]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

Keeping you on the prayer list! Hang in there.

 

[Hophop4]

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]

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]

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]

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]

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]

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

 

[dmharris]

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]

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]

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

 

[dmharris]

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

Keep the faith!

 

[Hophop4]

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]

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.