[rayop]

Re: Larry's Stem Cell Transplant

by rayop on Tue Dec 16, 2014 11:38 am

Hi Larry and all.

I have made it to Day +43 post SCT. My SCT began November 11, 2014 in Tampa at Moffitt. I was able to return home about the 25th of November. All went well. I had minimal mouth sores, but the diarrhea continued after I got out of the hospital almost until the 25th. It was the worst part of it all. I had some throwing up about Days 5-9. Was not really bad. It was in the morning when I awoke mostly, or a few times while in the bathroom. My weight started out at about 190 lbs (86 kg) pre- SCT. I am at about 177-179 lbs (81 kg) now. I try to eat, but it's hard to fill up. Not much tastes good. I use the Ensure to get my nutrition.

My energy level is minimal. I mean I get tired so fast. I have been wearing a mask everywhere I go out, for my protection. They say my ANC is high enough (above two). I don't care. I see someone sneezing or coughing, I have the mask on. I can't be careful enough I think. I wonder how many days till my energy level returns? At this point, I can't see myself returning to work, I couldn't make it through a day.

I have to go back on January 6th for a bone marrow biopsy and a PET scan the last of this year. The doctors want to see that I am cancer free or whether to do a tandem transplant right away. I can hardly bear the thoughts of it. I was thinking transplant # 1 was leaving me myeloma free at least for a few years. I had no clue this was the plan. Hit me like a ton of bricks.

So I am praying for good results in January. Hope you all will say a prayer as well. And to all, I pray you get healthier.

RayOp

[mikeb]

Re: Larry's Stem Cell Transplant

by mikeb on Fri Dec 19, 2014 4:58 pm

Hi Rayop,

Congratulations on making it to Day +43! Based on my experience, I think you'll find you have more strength / energy week by week now, with some days being better than others (not a linear process every day).

Good luck with the January 6 tests. What a kick in the pants it must have been when your medical team mentioned the possibility of a 2nd transplant! It seems like that should have been some­thing they discussed with you way before your first transplant if they were con­sider­ing it, not springing it on you after the first one.

In my case, my M-spike did not change pre-SCT to 90 days post-SCT. Instead of a second trans­plant, I did two cycles of RVD (Revlimid, Velcade, dexamethasone) consolidation therapy and then have been on Revlimid maintenance since then (September 2013). If your doctors recommend a second transplant, you might run something like the protocol I am doing past them as an al­ter­na­tive and see what they say.

Good luck!
Mike

[antelope1225]

Re: Larry's Stem Cell Transplant

by antelope1225 on Sat Dec 27, 2014 4:36 pm

Hi Rayop.

I just prayed for you to have wisdom to know what to do..

I have heard of tandom SCT's – one right after the other – but I have not seen statistics to compare the results of that with just doing one and then some other protocol like Mike suggested.

After my SCT, I told my oncologist that I never want to do dex again and asked if I could refuse it. He said, "You are in the drivers seat, you can refuse to take dex". (I think my oncologist is wonderfully humble and doesn't look at me as an experiment. I know that is pretty rare.)

One thing that I feel after the last 2 1/2 years of multiple myeloma, and after talking to two friends who are in really bad shape with other (not multiple myeloma) cancers that have metastasized, is that we need to take control of our own health. You can get a second opinion or do some research and see what you think is best. I think you need to be convinced it is the best course for you before you agree to that.

Cathy