The IRB approved my protocol. Now the protocol needs to be posted and printed and then Dr. Munshi will come over and consent me and then we can start.
The chemo is a 2-drug regimen. The first day I’ll get both (which is standard) and then apparently there’s some wiggle room for days 2 and 3.
The goal of this chemo is to move out all of my lymphocytes to make room for the re-engineered ones (CAR-T cells) which will proliferate.
They will watch my platelets (currently 12) and hematocrit (currently 23.4) and supplement with transfusions as needed.
I am about 90% sure we’ll start today, but it’s 10:30 and the clock is ticking…
I am so grateful for the love and support that continues to come my way. Thank you, thank you, thank you.
So, putting things in perspective I was officially diagnosed with multiple myeloma on May 5, 2014, rounding the corner to four years ago. (I only know this because I looked it up today.) I have been on maintenance therapy, post-stem cell transplant, for two and a quarter years (per Dr. Munshi, last week). I feel good. I am completely a symptomatic. My numbers look good.
And last week, Dr. Munshi told me I don’t have to go back to Dana Farber for SIX months – woot! No quarterly visits. Bonus!
I had my appointment at Dana Farber this past Thursday. And I waited to post about it until I had time to listen to my recording of it. I knew it was positive. There were lots of “yays” and even hugs at the end. So when I was asked how it went I would say “it went well”. But with cancer, at least with my cancer, I am relying on numbers and then how those numbers are translated into words to know how I am doing. Because aside from effects of the numerous treatments I have had, I have no symptoms of my cancer.
So this morning I listened to the recording and wrote down some of the words.
- With myeloma at this low level
- Light chains are great
- IgG is normal
- Standard maintenance therapy is revlimid 3 weeks on and one week off, because of your genetics (this is the genetics of my multiple myeloma) we will also do velcade every other week
- Shouldn’t cause more neuropathy
- Side effects pretty minimal
- The transplant achieved what we were hoping
- Free light chains came down quite dramatically 400-500 to 20
- Come back every 4 months then stretch it even beyond that
- We are on cruise control now
- Your myeloma is going to be gone. It’s almost pretty much gone. This (maintenance therapy) is to keep it away for years and years.
- Your immune system is actually better than it was because the myeloma is not affecting it.
So there you have it, lots of positive words, along with “yays”, smiling faces, joking around and hugs.
I don’t know why, but I remain pretty neutral, not pessimistic, but not even cautiously optimistic. I feel like I’m from Missouri – show me. Show me I’m still cruising along a year from now, 2 years from now.
I guess, I don’t want to get too high, it makes the lows feel that much steeper.
I have been feeling, well, I’ve been feeling like myself (yay!) since Monday. I’ve worked out every morning (modified a bit) this week (yay me!). And today when I went for my blood work all of the key blood component numbers are trending up and I am no longer neutropenic. So, while I still can’t shave my legs (low platelets), and I should maybe be feeling tired, which I’m not (low red blood cells), I can garden again and eat sushi if I so choose.
I am feeling very excited by the news. My body is recovering well from the treatment (or tolerating it well as the doctors like to say) even if I do not know yet how well the treatment worked, a couple weeks yet for that.
I have taken to warning whichever nurse is drawing my blood that I did pass out last week, you know, just in case… The nurse today was shocked, she said, “I would never think that Heather would pass out!” – so there’s that!