Any info on autologous SCT?

[Lbrown]

I just had my 3rd opinion. He says there is no big rush to do anything right away, but suggested trying cyclosporine again just to see, because the tacrolimus is doing absolutely nothing and the ATG didn't work. He also ordered some test - HLA-DR15??? to try to determine if there's a good chance I'd respond to IST. Also redoing the PNH test.

He says because I still have functioning marrow, that it would be possible to do an autologous stem cell transplant. I am 46 so he advised not waiting 5 or 10 years, but rather to think about it for the near future like in 2 years for example, if nothing else worked. It would involve large doses of chemo, and 6 months or so to recover.

I'm worried about the sounds of heavy duty chemo, the length of recovery time, and the possibility of getting the same problem all over again. He said there is only a small chance of having the same problem. What are the chances of getting something worse from all that chemo? What are the recovery rates and survival rates, what about complications or other chronic conditions? I went through hell recovering from ATG from all the complications (C diff 3 times).

Anyway, I thought I should at least know all about it and think about it for awhile before I have to decide anything.

Thanks for any info.

Deb

[Marlene]

You would have to be able to self donate enough for a transplant. So the question is....do you have enough stem cells to do this?

NIH, at one point, was doing a clinical trail harvesting and then freezing the stem cells of those who responded to ATG and were in remission. The thinking being, if they relapse, they could then have an autologous stem cell transplant. Less risky from a graft vs host disease perspective.

Your question regarding the possibility of getting SAA again after an autologous transplant was the same one we had when John did High Dose Cytoxan. The answer was, it just doesn't. When you wipe out the immune system completely, you wipe out the autoimmune problem or should I say the memory of the white cells. It's complete re-boot of your immune system. I'm not 100% convinced but it's been 8.5 years since John's treatment. He never fully recovered his counts so I remain a bit of a sceptic...maybe 3% of me .

[Lbrown]

Thanks Marlene.

I don't technically have AA, because my WBC and ANC and usually platelets are too high to be considered AA. I was diagnosed with PRCA at first, but my WBC was also low (in the 1's). I have some strange hybrid of PRCA and AA, the red cells are being severely affected.

The dr today said my history is kind of unusual, and it is hard to say what would be the "right" treatment. I am going to press to try cyclosporine again I think. I had a lot of side effects from it, but I am thinking a short trial couldn't hurt too much - plus I have some leftover. He said maybe the dose could be experimented with so I would have less side effects. We never did that last time, I just sucked it up until I couldn't take it anymore.

Well, assuming the low-dose naltrexone doesn't work. It'll be 2 weeks tomorrow.

Deb

[Lbrown]

As for being skeptical - I was told ATG was a reboot of your immune system. Unfortunately that blue screen of ..... (I won't say it) came back anyway!

[Marlene]

Oh yeah, I forgot you had some odd stuff going on. ATG is not a total reboot the immune system if that helps. That was part of our discussion with Dr. Brodsky when John was trying to decide his treatment. HiCY pretty much wipes it all out which results in a very low relapse rate and there's no need for additional immunosuppressant drugs after the initial treatment. Nothing left to suppress.

I've got my fingers crossed for you on the LDN. If it works, I think it will take a while before you see it showing up in your CBC.

[Greg H]

Originally Posted by Lbrown

He also ordered some test - HLA-DR15??? to try to determine if there's a good chance I'd respond to IST. Also redoing the PNH test.

Hey Deb!

HLA testing is what they do when looking for a bone marrow donor match, as well as for other things. Folks who have HLA-DR15+ have been shown in various studies to be more likely to respond to IST.

NIH has a clinical trial of Campath for folks who didn't respond to ATG or relapsed after ATG. Given your complicated in-betweeness, it might not be a fit, but I thought it worth mentioning.

Take Care!

Greg

[Hopeful]

Although trends seem to show that being HLA-DR15 positive increases your odds for responding to IST, being negative doesn't mean that you won't respond. I am HLA-DR15 negative and still responded to IST.

So, just think of the results as another data point.

[Lisa V]

I'm confused as to how an autologous transplant could work. I know someone who had one for AML, but in his case it involved removing the AML clone before reinfusing it back into him. Without an identifiable clone to remove, how would that help?

[Lbrown]

The doctor told me the immune system was "educated" improperly to attack your own cells. In my case there's no clones I guess, just improperly activated T cells. I guess they are part of the adaptive immune system, so it is very unlikely the same thing would happen again. That's also probably why you need to get re-vaccinated. I guess it wipes out the memory cells, whatever they are.

Greg - the doctor also told me about the trials with Campath and that they didn't have the results yet but should very soon. He thought that since I didn't respond so well to ATG there'd be no point trying Campath.

My feeling is after what I went through this summer, I need a break from all the treatment for awhile to recover physically and mentally!

Deb

[Greg H]

Hopeful is very right about the HLA-DR15 thing. It's only one data point.

The Campath trial I was in (for MDS, not AA) used a combination of age and HLA-DR15 status to determine likelihood of response (based on some earlier research that parsed out all the statistics). And other studies have found other data points to be predictors.

You kind of have to mash it all together and see where you think you might stand and what's worth giving a shot.

Have a great weekend!

Greg

[Lbrown]

I read your blog Greg - how are you doing now?

Basically the 3rd dr I saw said there is no clear right answer to my problem. I don''t really have AA, but I have a severely depressed RBC and low WBC and platelets, but not low enough to be causing problems at the moment (except for the RBCs).

I would be far more interested in trying Campath than a SCT!

Deb

[Greg H]

Hey Deb!

I am doing great at the moment. I haven't posted to the blog (or updated my thread here) because I was waiting for hard copy of some lab results from my local hematologist, since the verbal ones they gave me over the phone were pretty much too good to be true.

I'm back for another of my weekly CBCs on Tuesday -- but maybe I'll post the results form last Tuesday -- could be an object lesson in why not too get overly excited about one lab result.

Thanks for asking; you've spurred me to action!

Have a great weekend!

Greg

[Lbrown]

Tomorrow I'm having a BMB to look for CD34 cells. It's going to be done by the dr that set up the transplant clinic, so its a very good time to ask the hard questions. I'm feeling so dragged out I hope I remember them. Husband is coming too, so hopefully his brain will work because right now, mine isn't.

Deb

[Neil Cuadra]

Deb,

Write the questions down now and put your husband in charge of making sure you ask them all.

That's what my wife and I do because we'd otherwise forget to ask some of them. And we tend to ask a lot of questions.

[Lbrown]

This was the most painless BMB yet. I had Dr #3 instead of the one I expected, but I like #3 because he rambles everything he is thinking, so you get a lot of info and the thought process behind it.

At my hospital in Ottawa, they do autologous SCT mostly for Crohn's, MS & RA, basically autoimmune diseases. I was a bit surprised they don't do more marrow conditions, but basically there is no point doing them if you have a stem cell defect or cancer, as you are likely to get the disease back again.

They think the ATG & tacrolimus didn't work because I am still producing cells and the immune response is too strong. They are testing for CD34 cells as well as defects, MDS and probably looking a lot deeper this time than they've done before, which is a bit of a relief.

The old dr (who set up the transplant program) wasn't as enthused about recommending SCT for my condition, so that's why they're trying to get more data. They all do think it is an autoimmune condition.

I have been on the Marshall Protocol since Sept 2009, and I recently started LDN. The combination of olmesartan, minocycline and LDN does make me feel a lot better, but I don't think it is going to fix what is going on, I've been transfusion-dependent since 2009.

The info I got about the autologous SCTs is:

- using it for severe AI disease
- everyone engrafts
- most people get a remission
- a lot of people get a long term remission
- most or all patients are glad they did it

Despite this being the most painless BMB yet, I started to feel dizzy, sweaty and lightheaded near the end. He was going to do a 2nd sample but couldn't. I thought I was going to throw up or pass out, but after awhile I went back to my freezing cold self. Then got sent off for a CBC. So I hope they got enough and I don't have to go back for another one.

I see this dr again in 2 weeks, hopefully they will know more by then. Transfusion tomorrow, been feeling crappy all week so I hope I feel better tomorrow.

Deb