Multiple Myeloma

[KCI]

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

 

[Jaybee]

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]

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]

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]

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

 

[rosebud5]

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

 

[Hophop4]

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]

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

 

[Hophop4]

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]

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

 

[Jaybee]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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