update
 

Hi guys,

I had ATG last July and had a hard time with C difficile 3 times and it seems like everything that could go wrong, did.

I just finally quit tacrolimus. It did nothing for my counts.

My options are now autologous stem cell transplant or donor transplant. I will get checked to see if they can harvest stem cells. Hematologist says trying anything else like campath could make things worse, and make an autologous SCT impossible.

I have chosen to stay on the Marshall Protocol, and LDN. I feel better in every way on the MP and LDN, except for my HGB. All I can say is I figure that has to count for something, and it sure beats feeling like crap. So, no more immune suppressants. The tacro was starting to make me feel sick, my creatinine was too high, my body temp was too low and I was freezing all the time. I think it would have trashed my thyroid if I continued to take it. I would wear 2 - 3 sweaters to work and still have chills and goosebumps all day. The day after I quit tacro, my body temp went up at least a whole degree C to 36.7 C, and I do feel a lot better with more energy, no nausea, and no longer cold all the time.

All I know, is that there is a lot yet to be discovered about the immune system, and I am following my gut which is telling me to stay away from more treatments.

I told the hematologist I was burnt out and needed a break from the treatments. I may consider ASCT if that turns out to be an option, but it wouldn't be something I'd do anytime soon.

Up until now, I've been lucky that my neutrophil count has been just high enough to keep me from getting infections.

Deb

Deb, are they saying that an autologous transplant is an option for AA? I know someone who had one for AML, but I've never heard it mentioned in connection with AA. I've always assumed that was because AA is not generally considered a clonal disorder. What would they remove if there's no clone? I'd be interested in hearing more about this.

Glad you are feeling better Deb. Hopefully your counts will rebound.

Regarding the autologous transplant....My understanding is that most with SAA don't have enough stem cells to harvest so it's not an option. I know NIH did a clinical trial to harvest stem cells from SAA patients in remission in case they relapse, then they could then do an autologous transplant. I think it would have been an ideal situation for John with the HiCy. It surely would have shortened the time of BM recovery.

Well, the thing is I don't really have AA and I don't really have PRCA. He thinks my immune system got "miseducated" along the way. I do have stem cells, but not in large quantities. But they did test and they did find some.

From my understanding of it, the chemo gets rid of the miseducated parts of the immune system, and the ASCT replaces everything - hopefully without the whatever immune attack is going on. From what I understand about that, T cells are producing cytokines in the bone marrow, which is suppressing blood production.

What is causing THAT seems to be a mystery, that nobody can explain. I agree that it could be viral / bacterial stuff going on that they can't see or measure, that is just causing my immune system to go out of whack.

He said ASCTs are more successful when you don't have cancer / clones, because if the stem cells are normal, you don't have a chance of faulty stem cells taking over.

Deb

Hi, please excuse my ignorance, could you explain what tacro is, the Marshall Protocol and LDN?

Just a thought
 

I just read your update Lbrown, and I am going to put something out there for you to research.
I have been down a crazy road for the last two years, but I have to mention that my story started with me being diagnosed with LGL Leukemia in July 2009 - and then my diagnosis was updated to AA in Nov '10.
These LGLL and AA are very common, and have very common symptoms - not too many doctor's know enough about LGLL to look for it, and what you are describing to me sounds very familiar.
LGLL is also very rare but it might be something worth mentioning to your doctor.
Don't know if this will help or not, but I do hope you get some answers soon.

Tacro = tacrolimus (prograf)

I've described the Marshall Protocol elsewhere. Briefly, it is a theory of autoimmune disease caused by Cell Wall Deficient bacteria (such as in TB - hard or impossible to culture), and a treatment that stimulates the immune system to slowly clear them. It includes an ARB and low doses of antibiotics.

LDN is low dose naltrexone.

I will look into LGLL. My current doctor also specializes in Leukemia.

Thanks,
Deb