Just got back today from Memorial Sloan Kettering hospital in NYC. We got lots of information and I had lots of tests. So lets see how much I remember and how much Kristy does…

I had lung and heart function tests, a chest x-ray, bone marrow biopsy, cat scan, lab work (25 vials!), and I did my first stress test - all were fine.

I felt a little concerned meeting Dr Koehne for the first time having come so far along the road to having the transplant – what happens if I look into his eyes and I don’t trust him.. Well I’m happy to say I like him, and he answered all our questions. He tells it how it is no beating around the bush or sugar coating – just like Dr McGuirk, so that is good!

So I asked him about the 20% mortality in the first year that I understood from our preliminary meeting with Dr Giralt. He thought it was more like 10-15%, which seems to be going in the right direction.

Writing this down tonight I have forgotten most of what was said over the 45 minute meeting, however my general feeling is that I have a better chance of coming through this in one piece than what I thought before the meeting. So leaving I felt better and more confident about my future.

And here are the details of what she remembered….

Dr. Koehne walked in the room and warmly shook my hand.  He had very kind eyes and immediately put me at ease.  He started the conversation by addressing what Dr. Richardson had suggested with a medication management scheme and then went on the explain the difference in a t-cell depleted allo txplant vs. a conventional allo txplant.  He explained that the GVH (graft vs. host) in a t-cell depleted txplant is significantly reduced so much that some people never even have any GVH.  He said that many years ago it was thought that having some GVH was good for keeping away the disease, but that actually there is a “graft versus tumor” (GVT) effect, which is all you really need to keep the disease at bay.  In a t-cell depleted txplant, the t-cells are given in very small increments at 5, 8, and 12 months so that they can monitor for GVH vs. GVT effects.  If the t-cells at 5 months cause some GVH disease in the patient, then the 8 month t-cell infusion is either not given or is delayed.  During this time they also monitor frequent labs and have specific things they’re looking for in order to monitor the GVT effect.  He said that Dr. Richardson does not recommend this at this time simply because he does not know enough about it because it is not widely published (because it’s still a clinical trial) and also because a conventional allo txplant has many more side effects and risks, which are not in the best interest for patients with myeloma – but that this type of transplant will be the way of the future.  He said that in their experience at Sloan Kettering, one t-cell depleted txplant works better than 2 autologous txplants.

We asked several questions about statistics and survival rates, etc.  He said that he honestly didn’t know all of the statistics behind everything.  When we asked him about a cure rate he said, “Well, that’s hard to say because what is a cure?  I consider a patient cured when they die of something unrelated to their disease.”  He’s been doing transplants for a long time but has only been doing t-cell depleted txplants for about 5 years.  He did say that he has several myeloma patients who are still in complete remission, with no evidence of disease, after 5 years.

He also said that for those patients whom the transplant doesn’t last as long, one thing the transplant does is to “reset” the immune system.  One way this can be an advantage is because if their myeloma is resistant to a particular chemo (such as how Brian’s myeloma progressed despite Velcade and Revlimid), then oftentimes their myeloma is once again susceptible to the drug after transplant.  So what he is suggesting is to do the allo now, followed by medication management in the future if needed.


So that is what we remember. I'm tired now and it is late - so that's it for now.
All in all a good trip.