Consultation was finally scheduled this past Wed where much information was presented in an informative, concise and knowledgeable manner. And it was all greatly welcomed. Several options were laid on the table surprisingly starting with the 2 Chemos I've had. Wow, this had never been presented. I would likely be fine for a year maybe two. But alas my aggressive leukemia would indeed return. The following option: Donor Lymphocyte Infusion (DLI) mentioned in an earlier post. I agree, weeks ago I agreed that DLI looked very attractive. Discussed (here in layman's terms): less toxic, low intensity, reasonable survival rates projected, not nearly the degree of caregiving post-procedure required. Not nearly the degree of potential organ damage. That being said there is a higher potential of Graft vs. Host Disease (GVHD) including the desired Graft vs. Leukemia effect (GVL). DLI, as mentioned earlier, is typically used as a "rescue therapy" after disease relapse. Usually a year to perhaps 3 years post-transplant. In my case - unchartered waters - the heart of the issue: why would my donors T-cells work once again if ultimately the Leukemia blast cells broke thru/returned after a 7 year remission ? The thought is; after having a long 7 year healthy remission it is hopeful, optimistic and very likely - with the success they have already seen with DLI - that I would simply need a RE-infusion of Bruce's T-cells to (in simple terms) regenerate an equally long, potentially longer, remission. There are indeed DLI patients out there 10 years post-DLI and still going. Therefore still extremely attractive. That is, DLI Alone.
The next option was presented in the possibility of adding on a chemo drug post-DLI. THIS has always been the deal breaker for me. However it was presented as only a cycle or two, 3 months post-DLI, after we've had time to assess the presence/severity of both the GVHD and GVL effects. I would then be very closely monitored. Okay, understandable, and perhaps still attractive. Not so attractive was the potential of taking it a year.
The chemo med was discussed in much closer detail and though perhaps a tad less toxic than many, it still unfortunately includes the usual toxic side effects of vomiting, nausea, diarrhea, immuno vulnerability, etc, and yes, alopecia (hair loss). All of which are Quality Of Life altering issues. Some handle it physically better. Some handle it worse.
Last option, and what most would think was the no-brainer: Transplant. 2nd time around. Much to my own shock I would not be a candidate for another Myeloablative Transplant simply because my marrow may just not repopulate again. Period. The transplant protocol discussed would obviously require a new unknown donor, was not a "mini" but rather a slightly lesser intensity albeit fully toxic one. It would include 4/5 chemo meds for the "cocktail" and TBI (total body irradiation, aka: radiation). This rather freaked me out as MDS is often linked to prior chemo radiation treatments (ie: tv personality Robin Roberts) and my leukemia has always started off as rare high-risk MDS. This transplant protocol would bring with it all the horrors that transplants bring both during the treatment as well as after the "procedure" itself. Mortality rate, 3+ months of 24/7 caregiving, mucositis, TPN tubal nutrition, a significantly higher degree of GVHD and all the medications; anti-rejections drugs, immuno suppressive, pain managing, steroids & anti-steroid damaging treatments, as well as potential liver, kidney, pulmonary damage, and countless other complications. Need I say more. Above and beyond all, who's to say this new donor's cells would even work (!). And if they didn't...DLI would NOT be an option so soon after transplant (!). A frightening scenario that would open a whole new can of worms.
Ultimately, as Diane said, the Aha-moment, well the gold star of several Aha's, was that the overall survival rate of this transplant option was the same/similar to the DLI choice.
Thurs afternoon I chose DLI.
Friday morning I called Bruce. In the middle of explaining all of the above, something both he and his lovely wife have been equally awaiting information on, I quietly stopped....and tearfully said: Bruce ***** , would you please be my donor again.... ?
He replied Of Course.
4 comments:
K, thanks for taking the time to brief us so thoroughly.
Yes! Your course is charted and Bruce is willing. Sending healing energy and prayers.
You are really in my thoughts, Kristina. This explanation of your choices in treatment is so detailed that it is much easier to understand what you are going through, yet I cannot imagine being as strong as you are.
Kristina, I've read through your blog today and I am feeling so many things. I'm sad to hear of your relapse, yet optimistic and confident that you will stay so strong through it all. It only took meeting you once at the Regatta Cup to get bowled over by your energy, passion for life and your determination. It is obvious, plain as day, that you are a true fighter and warrior. I'm proud to know you and I send my prayers and best wishes for your treatment. You inspire me with your attitude and openness and bravery. Keep on keepin' on. Erin and I are thinking about you lots. Much love. -Stephen
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