My main problem right now is low neutrophils and suseptibility to infections (shingles, staph like boils, diarrhea of unknown cause, etc). I've been in the hospital twice now for IV antibiotics. I get a CBC every week and Granix shot if ANC is below 1.5, and it generally is every other week as it'll drop down to as low as 0.1 to 0.6 by the time I get another CBC after not getting geting one.
The shot also causes platelets to drop (currently 83) but now it's causing higher than normal other white cells and higher blast counts (currently 9%). The weeks I don't get the shot, these numbers are better. But my hemoglobin is also going in a downward trend overall, though it's a little better when I don't get the shot, too.
So now the oncologist wants to talk about starting Vidaza. I know that can cause low neutrophils so how would that even work? Can I get Granix shots at the same time?
Also, could someone who has actually gotten, or is still getting, Vidaza infusions by IV, describe what the treatment sessions are like and what the followup side effects are? All my doctor has said is that "it's not like chemo where you lose your hair or anything like that". Please feel free to answer by private message if you wish.
We also have to decide whether to do another BMB now or start treatments for awhile and do one later to see if the treatments are working. Any thoughts on this? I see him today at 10:30 but he knows I take a long time to make decisions about this stuff.
Thanks for answers & thoughts.
I have experienced IV Vidaza on two separate occasions, once for 3 months and a second time for 6 months. The sessions are pretty straight forward, you get blood counts checked, take some form of anti-nausea medication, then receive the dose over about 20 to 30 minutes.
I did not experience any nausea or other side-effects during treatment week, but the following week as blood counts got to the nadir (lowest point) I would get a little tired. I have read that some people experience changes in bowel habits either direction. One risk is that since your numbers are depressed, you may be more susceptible to infection and fatigue - but with your white counts, it may not make that much of a difference.
I have talked to some people who have received both Vidaza and Neupogen, so they can be used together.
Vidaza usually takes a few months to reach peak effectiveness, but many people see results within the first couple of months. As to how it can improve already depleted white counts, Vidaza basically tries to reform the marrow so that it can produce more and better quality blood cells.
As Dan mentioned there aren't really a lot of side effects. I agree with your doc's description in that it isn't like typical chemo. My husband is starting Round 14 next week and only had one very mild episode of nausea and has experienced no hair loss (other than what is normal for a man of 60!). He did have extreme fatigue (but that was his chief complaint anyhow, blasts weren't out of control at 6%). Yes, your numbers will 'tank' when you first start treatment. Dave's whites got as low as 500 and ANC to .1 rather than neupogen we just used extreme caution when preparing foods (avoiding fresh fruits and veggies for a while) and he did not venture anywhere without a mask. Is there a reason why your doc thinks IV would be a better alternative than the shots? Dave gets 2 shots each day for 7 days, and it takes longer to unwrap the syringes than it does for the treatment itself. When he first started treatment he would have labs twice during treatment week and once a week in between. Because he has had such an amazing response to the Vidaza - all counts have been relatively normal for the past 6 months - they only do blood work the first day of treatment. With regard to a BMB, it probably would be a good idea to have one prior to your first round, and then another one 6 months later to see if it is effective. As Dan said it might take you a good 4-6 months before you see any results in your counts. Good luck - hopefully you will have a favorable result with your treatments if you decide to go forward.
Thank you for your responses. Doc did say he wants to do the BMB first, and also he doesn't want to use Granix so he'll know any increased counts are from the Vidaza. I go back in 2 weeks to give him my decision. At this point I will say yes to BMB and starting Vidaza if there are excess blasts in the marrow. He says if not in the marrow, then the excess blasts in blood are a result of the Granix and we wouldn't necessarily need to start Vidaza.
He is looking down the road to transplant after about 6 months, though, when I'll be eligible for Medicare (I have no other insurance). He's thinking to get me as healthy as possible ahead of the transplant. He says I should do it while I'm still young (haha, his words, I'm 64 now). He wants me to meet with a transplant team between now & then, and says they may want me on Vidaza anyway. He is a general oncologist. I live in NJ and the two hospitals that do these transplants here are Robert Wood Johnson in New Brunswick and Hackensack in Hackensack. RWJ is about an hour away from me and Hackensack is an hour and a half. Hackensack does over 400 stem cell tranplants a year. I didn't see RWJs numbers anywhere.
My husband is 15 years older than me and he would not be able to be my caretaker. I don't have a large extended family support system and my grown kids have serious problems of their own. I'm currently raising one of my granddaughters so this is going to be complicated.
Gotta go to pharmacy and get another antibiotic script. Will check back later for any more responses. Thanks again. Jo
No BMB or Vidaza for now
Well, CBC last week and this week showed no blasts at all so doc says we'll stick with the weekly CBC with Granix when ANC is below 1.5. He says I really haven't had many infections since this all began so my immune system is still working but it's not really a good long term plan. He still wants me to meet with transplant team and he'll wait to do BMB because if it's more than 30 days old the team would want to do another. I get to be a real nervous wreck coming up on that test and I'd rather he do it since he did the first one and it turned out fairly easy. But I go back to see him again in 4 weeks. Don't know how long it'll take to get appt with transplant team. Now I have to decide between Robert Wood Johnson or Hackensack, which is listed as a Center of Excellence by the MDS Foundation.
He did answer questions about the Vidaza. It would be shots with a pill for anti-nausea. He didn't mention multiple shots. They have a such a hard time getting blood from me for CBC every week I'm not looking forward to more of that. Was actually thinking a port wouldn't be such a bad idea.
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