No, I've not shut down the blog, although from time to time I think about doing so. I just think you are all tired of hearing about "the scoop on Dan." This has gone on for six years now (on March 23rd). But John Sadwith threatened me with physical harm when I mentioned shutting this down, so on we go.
I just returned from MDAnderson. I have now completed the vaccine trial, having received my third vaccine shot on Monday. They will do the full battery of tests in a month to determine its success. I'm not optimistic about those results, because my IGGs and M protein started rising dramatically about 6 weeks ago, resulting in my going back on maintenance revlimid. That seems to have put a hold on the rising numbers--actually bringing the M protein down from 3.1 to 2.6. My doctor at MDA tells me they will be looking at much more than just the M protein and IGGs to determine the success of the vaccine in a month.
But always being a few steps ahead of my docs, I've already started pressing them for their thoughts on the "long term plan." As always there is no long term plan because it's impossible to predict what condition I will be in down the road. But there are many options available now, including the vaccine made from my M protein, another infusion of Mike's cells, and at least two new drugs that are well on their way to FDA approval (pomalidomide and carfilzomib). The most positive aspect of these discussions is that they always seem to find a drug that I respond to.
With ailments we seem to develop a mindset that generally they can be fixed, we will recover and go on with our lives. That often happens even with some cancers. Then there is this nastiness called myeloma, which gets knocked down but then pops back up--just like me. Hmmmm. Is this a coincidence? For now it doesn't feel like crisis management and that is a relief not to have that hanging over us. Those periods elevate the family's stress level, particularly Susan's. As I think back a year ago, we had just arrived in Houston for the transplant from my brother. That was crisis mode, as my counts were still battered from the Arkansas treatment and a donor transplant (allogeneic) brings many risks. When forced to decide whether to go through with the allo transplant, it really wasn't a choice, as I don't know how to give up. Fortunately, we've navigated those waters for now.
Right now we're dealing with an abysmally low white count (1.7) and a similarly depressed neutrofil count (.9)--these are the really really good white cells that fight disease. So no revlimid for the time being as that is what caused the low counts in the first place. I'll see Rifkin tomorrow and we'll make some decisions about the path forward.
I'm anxious for spring as I don't handle the cold very well. This is the first time in three years we've been in Denver for the winter, although our last two winter vacations to Little Rock and Houston left a lot to be desired.
Best wishes to everyone and thanks for hanging in there with us. We continue to be very grateful for all our family and friends. We love you.
Dan
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8 comments:
NO...!!! do not shut down your blog!!! I learn so much from you. I was freaked out about my WBC number getting down to 20! After 2 blog buddies, you included, I have relaxed about that (both counts below 2). Now I can relax a bit and feel good about where I'm at right now. I'm glad you still have options but let's not give up home on the Vaccine. You are a trail blazer and that has it's own set of blessings.
OK... I was having a stupid moment. I'm still learning what these numbers mean and need to picture in my mind what numbers mean in what context. My WBC is 3 not 20!!! Sorry I will check more before I post next time.
Dear Dan,
Glad you posted your blog before our departure to Sicily in an hour! I was hoping to hear about the Houston results, but I guess I have to wait with you for a month before you get those! In the meantime, hang on in there. Bises, Sigun.
We ARE NOT tired of reading about you and the longer you write, the more hope we have to be blogging ourselves in 6 years(it's 4 for us on 3/8). We may not always have something to say in the comments, but we are reading and interested. My husband's sis is a match for a donor transplant so your cutting edge treatment is very important for us to know about. I just ran into an allo patient at our support group meeting 2 weeks ago.
I may have mentioned his case before on your blog. He did not go into remission at first, also had no GVHD either. He was put on Rev. He eventually did go into remission and told me that after 3 years, he got a flare up of GVHD in his gut this past Thanksgiving.
It is controlled, though he likes to know where the mens' rooms are when he's out, but the good news is, he remains in CR. Hoping your vaccines and Mike's cells put the kibash on this MM nonsense! Jersey is counting the days 'til spring too, though for us, I think it will be a mud season from all the snow melt.
Even those of us who may not know exactly what the numbers mean want to know "how is Dan doing". You are most entitled to be tired of it, but we appreciate having a way to keep up with you.
Cousin Dave
I'm just a stranger in Arizona who prays for you regularly, but I think about how you're doing often and would also appreciate if you wouldn't shut down your blog!!! =) I started reading your blog when my dad was diagnosed with MM in 2009. Hang in there.
Jill
Of course since it is your blog you can do with it as you wish, but like other 'posters' I get good information which might be useful for my relative with MM who has completed an allo with a sister and seems to be doing pretty well - one year out.
I continue to pray and intend for good things coming your way and look forward to the updates.
Ok, Dan, looks to me as if the thought of ending your blog is a BIG "NFW"!! For those of us that personally know you, we all look to it to find out how you all are doing. For others that are dealing with this disease, the comments are self expanitory. You are a guiding light for all of us. We love you. Shawn
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