The next steps, more or less.

Last friday was some hard news. Both my doctors gave me a pretty short time frame, but after talking with them both earlier this week, I feel that they are not throwing in the towel yet. Statistically, at this stage, even if we get this most recent relapse into remission, it is unlikely to stay in remission. So there is a sequence of the lymphoma being brought into remission, some time goes by, it relapses, and then they try to bring it into remission again. In theory, it could go into remission and never relapse again. That would be "cured". However, in practice, with agressive lymphoma, my current relapse makes the chances of that happening are infinitesimal.

At some point, we will not be able to get the lymphoma into remission. It could be this current relapse, or it could be some relapse in the future. Each time is more difficult because the treatments are pretty hard on the body, and it limits what treatments we can use to fight the lymphoma.

I currently believe, and I think that my doctors both believe that we can get this current bout into remission. I do appreciate that they are straight shooter and did let me know a likely time-frame if we can not get this into remission.

The current plan:

I received a call from Dr. Meehan yesterday to go over my new treatment plan. What he would like to do is a T-cell infusion from my donor's lymphocytes, along with a pill called Revlimid. This is a new drug that has just been approved and looks pretty promising in cases of refractory mantel cell.

HOWEVER, we can not do the T-cell infusion, or the Revlimid while I am on my immune suppressants, so I have a new schedule to taper off the remaining suppressant as fast as we dare. The danger, of course is Donor vs Host Disease, where my donor cells decide that all my cells are foreign and attack everything. This can be a deadly disease, so we are monitoring closely for any signs of this. Also, because the Revlimid is an immune booster, it will help the donor cells, so I can not have even a touch of DVHD before I go on the Revlimid. Normally, after getting off the immune suppressants, one would wait 6 weeks to make sure there are no signs of DVHD before going ahead with the Revlimid treatment. In my case, we are going to wait a week. Perhaps not even a full week.

The T-cell infusion has the same restrictions - because it is an infusion of my donor's cells, if I have any DVHD, they will join the donor side and I will have serious problems.

I am tentatively scheduled to get the T-cell infusion and start the Revlimid on the week of the 22nd. My taper ends on 7/15.

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I did have a good talk with Dr Meehan about hitting the current relapse with a chemo regiment. We know that the last Chemo that I did was very effective against my lymphoma, and brought it down to the point where it was in complete remission. The counts low enough that they were not showing up on any test.

My thought was that I am in pretty good shape, and unlike last time, I do not have a raging infection, so I would think that the chemo would be less dangerous to me than it was last time and with my lymphoma knocked down to nearly zero, my new donor-assisted immune system would have a fair fight. Dr. Meehan believes that any chemo that I have at this point will do much more harm to my new donor immune system than to the lymphoma. The donor cells, are still settling into a damaged bone-marrow matrix and it is like tending a new garden. We were not worried about destroying my bone-marrow cells during my last round of chemo because we knew that I was getting ready for transplant. This time, we do have to take that into consideration, and because the donor cells are still filling in, repairing the bone matrix, and in an unnatural environment (ie my body instead of my donor's body), they are much more sensitive to chemo than the lymphoma. A chemo regiment would probably wipe them right out, and not bring my lymphoma into remission.

Dr. Meehan and I are also looking into the possibility of enrolling me in a Phase IV clinical study for a drug called Ibrutinib. It seems reasonably promising for relapsing mantel cell. It may be that by the time that it makes sense for me to be on Ibrutinib, it may be out of clinical trials altogether, which would mean that I would not have to drive to Massachusetts or somewhere for the drug. There are rumors that it will be approved in the spring.

I am planning to talk with another doctor to get a second opinion, because I can not see that being a bad thing. But overall, what Dr. Meehan and I discussed sounds like it makes a lot of sense. I know him to be a careful, thoughtful, and experienced doctor. My trust level in him is pretty high.

I don't have much information on T-Cell infusion, so if one of you wants to look that up and give me a summary, I would appreciate it. I know that any statistics you might find do not apply to me, but I am curious about how this treatment might have worked for other people with refractory mantel cell.

Other than that, I am back in a pretty good head-space. Feeling more or less upbeat. Enjoying one day at a time. My fatigue is not too bad - I can get in a walk, answer some emails, do a little bit of drafting on our cabin.

Tonight we are headed up to Sebec, and will see my brother and his family for the Forth, and then on Friday, we will be in Brooks for a relaxing weekend at the Jackson camp. I hope to get the canoe out and drift around the lake a bit. It should be pretty nice.

Leif