Stem Cell Transplant - Tell Me All!

[kburgee8304]

On 9-21-05 I had what was to be my final treatment of the originally prescibed "6 months of ABVD". Today I got the result from my PET and CT scans to chek on my progress. I am told that the large mesdestianal mass in my chest is the same size as it was 3 months ago (12 x 16 x 9.2) and the PET scan shows more uptake activity then the one in July did. The doctor suggests I do a Stem Cell Transplant.

He is sending me to Johns Hopkins University in Baltimore, MD. He told me I will be admitted at Frederick Memorial Hospital on the 17th of this month for 4 days of Harsh Constant Chemo (I think he called it Eshron (sp?) - I know when he was speaking to the doc at Hopkins he asked "should we do Eshron or ICE" and Eshron (sp) is what they decided. The doctor said I would do two or three four day treatments and then do the transplant at Hopkins.

Also, originally he said my bone marrow was good - unaffected by the cancer. Now he is telling me they will need to test my brother to see if he is a match. He said my bone marrow is still good, but that sometimes there are "free cancer cells" floating around that they can't always detect that could be in my bone marrow. I am confused? What if my brother is not a perfect match?

What is the actual schedule of events? Is there sucess with this? What are the sucess rates? I have been working full time up till now - when should I expect to be returning to work? Also, I did not really get sick or tired from ABVD - the last sick months have kind of been cake walk, so I am really concerned about this "harsh" chemo. Did you get really really sick and tired from it?

My doctor said because I did not respond to ABVD he is not very optimistic that I will respond to this chemo, but isn't that the whole purpose of this tranplant - for those who did not respond to ABVD or other standard chemos?

I am so scared!

Please share your stories - give me hope - Sorry so many questions - I am just trying to prepare myself for whats to come in the next few weeks/months!

Thanks to all of you for your support, love, and hope!

[laura79]

I am so sorry you have to go through this, it is really overwhelming to process all this right now. I've unfortunatly been there too. My chemo worked really well my disease just decided to spread a few cells at the end of my treatments and cause me to have another tumor in my left lung grow while I was being radiated, my disease was not considered a reoccurance it was considered refractory. But they treat it the same with savage chemo and transplant. There are many of us who have traveled that road and been successful, the one person off the top of my head who had a hard time responding well to some of the chemo regimens was Tonya(squeek) maybe she will chime in soon, I know they did multiple regimens with her than did a transplant and she's been cancer free for over two years. The savage chemo that they are speaking of sounds like ESHAP (maybe) I had ICE and it worked but I know if it didn't respond to ICE they were giving me ESHAP next. The thing they need to do to have a successful transplant using your own cells (autologeous stem cell transplant) is get you into remission first before blasting you with high dose chemo. If that doesn't work or doesn't look like it will work the other transplant is using a donor stem cells or bone marrow (bone marrow are the adult version of stem cells, stem cells are now more commonly used because they engraft quicker and leave you a better chance of not developing an infection because the engraftment time) I was told if I didn't respond well to chemo I would have a donor transplant. A donor transplant is harder than using your own cells because GVHD (graft vs host disease) you want alittle of this but an extreme reaction can be really bad, a small reaction is supposed to happen to keep the cancer from coming back, it means the other persons immune system is successfully fighting in place of your own. Because basically at some point your body didn't recognize cancer as an invader and let it grow. Donor transplants though more dangerous, are more successful at keeping the cancer away than transplants using your own cells but doctors will decide that by how you respond to your treatments. Expect to be out of work at least 3 months and that's just for an auto transplant I am not sure for a donor but I know it's alot longer recovery. There is alot of info to give and I don't want to overwhelm you, right now you just need to take it one day at a time and pat yourself on the back for each passed chemo or test because that is one step closer to your cure! Which you can get! I worked parttime throughtout the savage chemo (ICE) I was very tired and it killed my blood counts causing me to need quite a few tranfusions.
Hugs Laura

[angie62172]

Laura gave some excellent info and advice.

I'm sorry you have to take this road, but know that it's an effective one for many many people. Have faith!!

I started the transplant process back in January. ABVD and rads took care of all my original tumors. This was a recurrance in the right axilla region. Had 2 rounds of ICE that my tumors didn't respond to. Harvested my own stem cells and then the onc decided that he wanted to do rads to the area instead of transplant. More rads took care of the axilla tumor, but I had another recurrance in the lungs. I'm now doing DHAP (similar to ESHAP) as a salvage chemo and will be doing SCT next month and maybe some rads to the affected area afterwards.

Salvage chemos are generally tougher than ABVD, but it's nothing that you can't do. Usually they're done inpatient so the docs can keep a close eye on you and potential side effects. It's good that your bone marrow isn't effected at this point. I asked about having my siblings tested "just in case", but my oncs said that it wasn't necessary at this point. Maybe your onc is just being really thorough?? If your brother isn't a match and you end up needing an allo transplant they will try to find a donor match from the marrow donor registry. Allo transplants with a sibling match is generally the best situation, but there are MANY success stories from allo transplants with donor cells too.

I don't know what kind of work you do, but if it's very physical at all or you're in contact with the public much you'll probably have to take several months off. ICE was hard... I couldn't have worked through it, and DHAP has proven to be even more difficult. I wouldn't be able to work through it if I wanted to. I teach elementary kids so my oncs recommended me taking off about 6 months. That was back in January, so I was off from then until the end of the school year. I worked exactly one week of this school year before finding out that I needed more treatment. I've now been off for about 6 weeks and am not anticipating going back until about Feb. or March. I'm very grateful that I have a VERY understanding employer who has been nothing but supportive and is holding my position indefinitely. Either way, you may want to look into your short-term disability options now.

SCT is pretty much the standard protocol for recurrent or refractory disease. If ABVD and/or rads don't cut it, most docs go straight to SCT.

Don't worry about asking questions!! You'll find that everyone here will be more than willing to help you out!

Angie

[ethel]

I think Laura summed it up all for you. My daughter was in remission for five years)stage 111b) after being treated with abvd and she relapsed at a crucial period in her life. She is 26. She is doing autologous sct now...finished two treatments of ICE and just did a pet/cat scan. We are waiting for the results to see if she needs another ice before the sct. She stopped school and work since, like Laura said, your immune system is all gone with the ice and possibility of contracting infection/disease is very high. Take it in strides and see how it goes. It is different for everyone and maybe you would be able to work. Good luck and let's all hope for great results. Positive thoughts and prayers for you...
Love

[Jessie16]

I think the girls have it covered...

I had my SCT on 8/24/05 with my first scans coming back clean. I also was on ICE, 2 cycles prior to high dose therapy that came with the transplant.

Cant say much more except that the success rates are good and I wish you the very best!!