I have so very much to tell you that I know I’ll run out of steam before I finish, so this entry will be in 2 parts. Part 1 and Part 2. Today is part One. My last “real” entry was written on Monday August 3rd, except for my little blurb yesterday, on 8/15. So as I left off in my previous entry, I told you we had decided to once again do my “self experimentation” of taking the Revlamid with the IV chemo Velcade to see if I was again going to develop a fever (ie raised temp as MM world says a REAL fever is 100.5.) So……place your bets now, before time runs out! Well, gee whiz, guess what? I take the Rev on Sat. nite and I start a fever of 100.6 on Sunday. I take it again Sunday nite and ….boom….again run the same temp on Monday. So I issued my own cease and desist order and stopped taking the rev…..so again, gee whiz, no temp on Tues. Wed or the rest of the week for that matter. So it still looks like it’s an issue of taking the Rev daily while still having the Velcade in my body. Those 2 together, IN ME, are just not cooperating, which as I’ve said before, really just blows me away for a number of reasons. Firstly, I have never had a drug reaction ever to anything, and secondly, from all the research I have done, the 3 drugs I am on show the most promise for a complete remission, so the frustration is at crazy levels for me, seeming not to have the ability to take them both. Which then brings me to my visit with Dr. Ben who is an MM specialist at Moffitt Cancer Hospital in Tampa, where I had my bone marrow transplant. Dr. Nair wanted me to see Dr. Ben for a consult on my current status as well as getting his input into what we are doing now (which obviously isn’t working) and perhaps he could develop a protocol that would work.
So Mom and I left early Wed morning and made the 2 hour drive to Tampa for my appt. I also brought the results of my last bone body scan and the results of my bone marrow biopsy that showed that I have 55% multiple myeloma cells in my bone marrow. (very very sucky, by the way) :(
To make the meeting with Dr. Ben short and sweet…..he reviewed all of my blood work, results etc and we went over what chemos I am taking and when and how much. I told him about researching that the current chemos I am on seemed to be what was working the best for most people, and he agreed, saying I was on the right meds. I also told him about running a temp and the other issues I was having. He excused himself to “look up some things”, and was gone quite a while several times over our visit (Mom swore he was seeing other patients…LOL), but the last time came into the room saying “I think I have figured out the problem”. AHHHHHHHH..music to my ears. He said he felt I was getting too much of some and not enough of some but mostly the SCHEDULE I was taking them on needed to be changed. Again, music to my ears. He gave me a sheet of how all my chemos were to be taken and……lordy, lordy……it would be difficult for a rocket scientist to figure out! There is no way I can keep this schedule in my poor little chemo brain, so the day after we got home I sat at the computer and got it all down on paper so it made some sort of sense. Just for instance, to give you an example, the IV chemo is to be given on Days 1, 4, 8 and 11 on a 21 day cycle. (and given in a 3-5 second IV, to be immediately followed by a flush) and then the Revlamid is to be taken days 1 thru 14 every 21 days and the Dex is to be taken on Days 1,2,4,5,8,9,11 and 12 every 21 days. Now this is only for the first 4 cycles and then there are some changes for cycles 5-8, and then a completely different way once I reach maintenance, hopefully on cycle 9. I am so visualizing and praying I get to cycle 9 with no issues. Wouldn’t that be wonderful?? This is a complete departure from the way I was getting my chemo, so I see Dr. Nair this upcoming Thurs and will review what was done at my visit with Dr. Ben. I can’t imagine that he would make any changes to this new schedule as that is why he sent me to Dr. Ben and Moffitt in the 1st place, to see what changes needed to be made. SO if all remains well, I will be starting the new chemo regime a week from tomorrow (on Monday the 24th). If you’re wondering why I didn’t discuss this with him on the Thurs I got back, is that Dr. Nair is on vacation for 10 days, so the next time I see him will be this upcoming Thurs. What I haven’t mentioned thus far is that even though I ran the temps on Sunday and Monday, I didn’t feel good AT ALL on Wed, or Thurs or Fri. either, so I went in to have my bloodwork, CBC, done on Friday and found out WHY I had been feeling so shitty. My RBC were so low, not even a shot of procrit would work (what I usually receive when reds are low, but not dastardly so). My levels were so low that I was being so severely anemic, that I would require a blood transfusion AGAIN….just had one in JULY…..AAAAARRRRRGHHHHHHHH! But it makes sense, with my symptoms of extreme fatigue(blood not carrying oxygen throughout my body), off balance, easily out of breath, etc etc.
Oh yeah, one more thing…..my WBC, for which I was giving myself shots in the belly of neupogen, were at a normal range, so I will continue to hold them until we see the need to resume the shots. So now that I’m leaving you with “having to have a blood transfusion”…..I will resume with Part 2 tomorrow.