HELP! SCT soon

[crystali]

I was diagnosed with Hodgkin's in Nov. 05. I had 6 months of ABVD and 10 days of radiation. My scan right before rad showed a highligted spot. Doc didn't think it was anything. Went on with 10 days of rad and on with my life. Scan 3 1/2 months after rad still showed hightlighted area, biopsy done, cancer never gone compeletly. Refractory is what they are calling it. I have completed 2 rounds of ICE, my last one will be this week or next depending on my counts............ok, now here is my concern or question. We had planned to do the standard SCT with BEAM, now everyone seems to be pushing me to do a clinical trial that would include TWO SCT about a month apart using Melpalan for the first round and BCNU, VP-16 and Cyclophosphamide for the second. I don't really want to do two transplants, but I don't want to have to worry about this coming back. I know either way I have a chance for it coming back, but I am thinking positive. I am just not sure what is the best way to go. Any advice?

THANKS
CRYSTAL

[ag2006]

Hi Crystal, my oncologist wanted me to do the Tandem SCT transplant, too. My insurance did not approve it because according to Blue Cross, the tandem SCT has not been scientifically proven that it will "cure" Hodgkin's using someone else's stem cells (my twin's). Although my SCT was a sygeniec/twin SCT, it was considered an autologous for all intent and purposes. I asked my doctor if she has supporting studies that proves this and she said that there isn't really much out there to prove the tandem will do the job using someone else's stems, but she believed that was my best bet at that time. What do your doctors say? I am almost 5 months post transplant now and am glad that I did not get two SCTs because I felt the first one was challenging enough. How far along are you? I was stage IV-B with HD in neck, chest, stomach and spots on lungs. I am currently in remission with one SCT and waiting on rads.

I know this is a hard decision. If you feel this is too much for you as a patient, you have the right to make the final decision. I hope others who have gone through this can give you more info. Keep the faith and please keep us informed.

Best Wishes,

Anne

P.S. I updated my response to include my insurance did not approve the tandem because I was NOT using my own stem cells for the transplant

[AMD45]

Crystal, I can give you some of my experience but you may not want to be hearing from me because I'm not a success story -- but there are many.

I had 2 SCTs about a month apart in 2003. This is called a Tandem SCT. While I think it is still in the clinical trial phase, I think it's in the final phase and my onc at the Cleveland Clinic, which I think was one of the first institutions doing the trials, told me that in just about all the tandems they've done (mine excluded ), the patient is still in remission.

Now for the details of the tandem, the second SCT seemed to be the intensity that I hear about SCTs being on this board. The first one was relatively mild. The chemo wasn't great but I wouldn't say it was even a speck as bad as ICE was. The whole process took longer because there were two SCTs but I did have a month of feeling pretty good in between and I was able to be home. I was in and out with the first SCT in 13 days and the second one was 19 days. I didn't get the mouth sores either SCT but I followed the mouth care instructions obsessively. I took lots of drugs for the chemo for the second SCT because I had told the nurses I wanted to remember as little of the bad stuff as possible -- the nurses complied and were wonderful.

When I initially was told I needed to have an SCT, I wasn't thrilled but I pulled myself together pretty quickly and was ready to do what I had to do. The day after I got home from my second round of ICE I got a call telling me I was going to have a Tandem SCT and I lost it. I was so weak from the ICE that I wanted to die and I just wasn't prepared to hear I was going to have 2 SCTs. I got past it but I was a wreck the first couple of days -- in fact I called my husband at work and begged him to come home, the only time I've done in my nearly 5 years of dealing with HD.

I hope this helps you a little. Basically, know that it's doable -- not fun but you can get through it. You may have some insurance issues so be prepared. My insurance denied the tandem the day I was to start chemo which was a problem because depending whether I had the regular or tandem made a difference on my chemo. Fortunately at that time, my insurance nurse case manager was great and got it straightened around and approved in an hour (something that didn't happen with my mini allo with a different insurance company).

[robli]

Hi Crystal~
I was also supposed to have a tandem transplant exactly as you described. I, like Anne, have Blue Cross and was denied coverage for it. They said it wasn't the standard of care and that it was a clinical trial. Anyway, I went on with the standard Auto SCT followed by 5 weeks of rads and am now NED. I don't really have any advice for you, I can only really tell you my experience. I didn't want two transplants either, but was willing to do whatever it took to beat it. I ended up not having a choice, but the thing is, you never really know exactly what it takes...until you get there.
Good luck in your decision!
xoxo

[crystali]

I was told that the hospital gets a lot of money every time they get someone to do the study. I am questioning their motivation. My insurance has approved it, but I had a naturopathic doc tell me that if it was a phase III study he would consider it. If it was a phase I or II he wouldn't. This is a phase II.
Man, where is my crystal ball

[ag2006]

Hi Crystal. I don't mean to pry but what stage HD do you have? Is your disease bulky? Have you received radiation yet?

Since my tandem was not approved, my oncologist opted for one SCT then low dose radiation to put me into long term remission. They only pushed the tandem because they felt it was my best bet, but there was no study involved.

I know this is a difficult decision and I wish that whatever you decide, you feel comfortable with.

Best Wishes,

Anne

[crystali]

I was stage IIA. I'm not sure about bulky or not. I guess that is something I should find out. I did have radiation after my first round of chemo. I had 10 days of it at a moderate dose. 20 somthing.....whatever that means.

My the way, thanks for telling me about this site. You emailed me a few weeks back with some info.
oh, what does NED mean?

[ag2006]

Oh, that's right! Hi again! I'm glad you made it here! Lots of experience here and lots of support. NED means "no evidence of disease". Have you consider a second opinion? I was stage IVB and if my insurance had approved the tandem, I would have more likely done it in spite of the fact that I felt one was enough for me because being at my formerly advanced stage and quickly spreading disease with the "B" symptoms and the fact that I relapsed 3 months after remission put me in the highly unfavorable stage. However, stage IIA does not sound like an unfavorable stage, unless you relapsed within months like I did and other factors that put you at high risk. I'd question the reason and motive for a tandem transplant and whether one transplant would benefit you. Maybe a second opinion, as well.

Glad you made it here!

Best Wishes,

Anne

[RayNat]

NED, is what we all want - No Evidence of Decease.
Can you get a second opinion? Usually, when it comes to making such a big decision, your insurance can cover the expense of going to another city and seeing another transplant oncologist (BMT or SCT onc). The 2 best ones are in New York - Memorial Sloan Kettering, and MD Anderson in Houston. If you can travel for a personal consult perhaps the hospital could send over the films of CT, PET so that they could offer their second opinion. I was refractory IIa as well and at one point my regular onc and my BMT onc weren't on the same page ... one wanted auto SCT and one was for allo; I was about to go to NY to get their opinion just because I was firm about doing once and doing right. I ended up doing auto SCT with a trial at MDA of Busulfan/Melphalan and I am pretty happy about my choice.
Bottomline, this is your LIFE so take the time to calmly weight in all the options before making the big decision; or keep seeking opinion till you feel confident in what is best for you. All the best!

[crystali]

Well, I am going in for my last 2 days of ICE this morning. Yippy! I will be going in for the SCT probably the end of Dec. I am shooting for the day after X-mas, but they may hold off until January. We will see who wins that one.
I have decided to go with the standard SCT. I prayed about it, I asked all kinds of people and when I decided to make my mind up, I had a very happy feeling so I guess it is the right choice. I also saw my doc. yesterday for my first part of ICE and when I brought it up to him he told me he had already told the SCT team that I was going with the standard. It made me feel even better because I feel that if he really thought the trial was the way to go he would have really expressed that to me. I am really glad he is my doc. Although I do see a naturopathic doc, I really like this doc for the western standard stuff. He is a good guy.
I have been looking at SCT remarks, I am a bit scared. I HATE being sick....as everyone does, but I have yet to get very sick. ABVD wasn't THAT bad for me. ICE gives me a few days of being a bit out of it and one day of really sick, but then it gets better. I am not looking forward to weeks of really sick, but I also can't wait to be healthy again and this will be it....I am sure of it.

Thanks everyone! Wish me luck
Oh, how do you get all the info at the bottom about your medical history with this stuff?