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Maryvillepat
MemberAs of today, Chuck is off Revlimid. His doctor said perhaps he is a so-called slow responder, and that if he wanted to stay on it longer, it was up to him, but his advice is for Chuck to go back to Vidaza. It worked well for him, he just didn’t like the side effects. The doctor said it might not work again, and pretty much suggested that if not, the only thing left is a BMT. He said Chuck is a candidate despite his age, but I don’t think Chuck will choose that route, as it seems it’s the most iffy of all of them. It is too bad, but must be faced with grace and courage, and hope. Easy for me to say, I guess. His hgt was 7.6 after three units of blood two weeks ago. Since he had all that fluid accumulation from it, he is only take two units tomorrow,and they’re including Lasix. He will begin the Vidaza again in two weeks. Pray with me that it will work!
MemberLuann & Patti: Chuck’s hgt was 6.9 when he was given 3 units. It was his choice, but the nurse suggested it, and the doctor approved it. He is only supposed to take Lasix when he gains 3 pounds, which he hasn’t done. They gave him potassium in the hospital, but I think his second CBC showed it had come back up to normal. I agree that he must ask his doctor about taking it all the time, however. I take BP meds and must also take 20mgs of potassium daily. His ankles are only slightly swollen right now. His BP is always low, which I’d kill for! It is never dangerously low, however. How complex our bodies are! I will tell Chuck about the tinctures, however. Thank you both for your responses.
MemberDr. Azra Raza at UMass (the University of Mass.) is probably the best. Look at the website: protocols for myelodysplastic Syndrome and it will tell you all about clinical trials, including hers. Aplastic anemia and Myelodysplastic Syndrome is another website that can help. They are doing some clinical trials in Cleveland, and there is one in FL, which you can find on the protocols for MDS I gave you. A lot of hemos/oncs know next to nothing about MDS, which is unfortunate. Good luck!
MemberThanks, Patti: Chuck is going to talk to his hemo this week but probably doesn’t need any CBC, as they took a couple at the hospital and hgt was 10. Of course we don’t know how long it will stay that way. They did prescribe Lasix at the hospital, but only if his weight goes up. He doesn’t have any kidney problems that we know of, unless some have cropped up since his last tests. I guess you never know! But he just said now that the swelling has gone down even more. So we’re keeping our fingers crossed and praying hard!
PatMemberHas anyone had problems with high fluid accumulation from meds or txs? Chuck got 3 units of blood yesterday, and swelled up like the provervial balloon! I took him to the ER (a story within a story that doesn’t bear repeating), because he was having some breathing problems. They gave him Lasix in an IV, and after numerous urinations, the swellings have pretty well gone down. He is spending the night at the hospital, but the doctor who examined him after he was moved from the ER said she doesn’t approve of 3 units of blood, given that the body only has five, and not only that, they run the saline through the IV for 45 minutes after all the blood is used. She said the liquid has to go somewhere, so it was in his lungs and around his heart, not to mention his legs and stomach. The second doctor did know about MDS. The ER doc did as well, albeit not much. They also suspect the Revlimid causes swelling as well. Anyway, right now he feels fine, and we have to take one day at a time, right? He will probably be allowed to come home tomorrow.
PatMemberOur prescription insurance company is Community RX. I think our premium is $122 each per month, and we chose the so-called Emerald plan with coverage for the Medicare do-nut hole or gap or whatever. Previously we had United Health through Delta Airlines. I’ve been told by local pharmacists that CCRX is a good plan. The copays are lower on the expensive drugs like Revlimid, and a little lower on drugs such as Diovan that has no generic. But the generic drugs copays are quite low. Congrats on your high HGB. I hope it stays up there.
PatMemberChuck is getting three units of blood today. His hgt was 6.9 yesterday, down from 8.9 last week. He will talk to his doctor next week about stopping Revlimid, or lowering the dosage of his Exjade. I will be there myself to ask questions. A nurse at the hospital this morning did tell him he had heard that Revlimid takes time to act. But we’ll get his doctor’s thoughts next week.
God bless all.
PatMemberI am praying for the healing of your dad, and god’s sustaining grace to give you strength as well.
PatMemberMy husband worked for an airline, so was around jet fuel for years and years. He also used and still uses a gas chain saw to chop wood. So far the Revlimid has not kicked in, but he got good results from Thalimid and Vidaza. His hgt is his main problem, although his cbc last week revealed all time low in platelets. His health was always excellent, and, remarkably, still is, but he is depressed lately because the Revlimid isn’t working.
MemberI don’t know yet if it’s good or bad, but after days of going back and forth with our new prescription insurance company, Chuck began receiving his Revlimid again. The odds were stacked against him getting it as long as there was such an impasse, but Celgene and the insurance company resolved it between them. It sure seems like Divine Intervention, so that we’re thinking God wants Chuck to give the Revlimid more time to work! BTW, his copay–are you ready for this–is the same amount ($20 per month) as my BP meds, Diovan. I’m not complaining by any means, just can’t get over it, seeing the immense price differential between Rev. & Diovan. Chuck plans to get another iron test real soon, now that the immediate problem of getting the Rev. is solved.
MemberHi Lydia: Chuck’s Exjade dosage hasn’t been adjusted as yet. Right now he’s been tied up on the telephone trying to resume delivery of Rev since our new script insurance began 01/07. The new insurance company doesn’t do mail order as the previous one did, and Rev. can’t be dispensed through local pharmacies. Celgene told him to try specialty pharmacies where he received the orders before. Maybe today he got it squared away; we’re not sure yet! The prescription insurance covers Rev with a lower copay, and it looks as if the same one who sent the Rev will continue with it, but it sure has been an ordeal. I hope your mom continues to improve. I hope everyone does!After all this hassle, Chuck’s doctor may put him back on Vidaza anyhow!
MemberPatti & Naomi: It’s surely true about the many diseases MDS has. I think many if not most doctors are forced to go by trial and error, too. Chuck wasn’t helped by Procrit years ago at all. I think Aranespe he was on for a while last year helped somewhat, but not enough for the doctor to keep him on it. Chuck resumed the Exjade since he had to be tx-ed again last Friday. The doctor did tell him that going back on Vidaza is another option for him. But I guess all we can do now is watch and wait.
MemberHi Dottie: Yes, the disease is polycythemia. The man is 60 and has no symptoms. They told him he might not for as long as 20 years. Chuck got his CBC, and his hgb dropped to 7.6 from 9.7. He got off the Exjade for a couple weeks, but it didn’t seem to help. His doctor has not advised him to stop Revlimid, but he (doctor) did say today that Revlimid is a little better than Thalimdomide, but not much! However, Chuck was on Thalidomide for 93 weeks and did great! He got a little neuropathy from it, though. His doctor still seems to think Revlimid might work eventually. As you say, we have to keep trying. The doctor did say that Vidaza (which helped Chuck a lot) remains an option. We’ll see!
MemberCongrats to the higher hgb that I keep mistakenly referring to as rbc. Chuck is going to see how much his Friday tx took his count up this coming Tuesday. Usually the hgb come up higher than that for him. The hgb has been coming up in the 10s after tx. My understanding of chelation other than Exjade was about 8 hours of what I took to be an IV that would be done at home. Chuck’s iron counts came back to normal, which is why he’s experimenting by doing with out to see if the Revlimed will kick in. Chuck was given large doses of the Exjade. All we can do for the moment is wait and pray.I hope the hgb will go higher, although he should feel somewhat better in the range he’s in now. A Happy New Year to you!
MemberHi Naomi, Patti, Dottieb and Lydia: Lydia I sent you a private email yesterday. Did you receive it? Anyhow, Chuck has decided to stay off of Exjade for a while and see if the Revlimid will kick in. Chuck is being tx-ed even as I write. His rbc usually goes over 10 after a tx, although once it went to 11. But it is dropping at a faster rate now. He called a pharmacist at Celgene who said that since Exjade has gotten his iron counts so low (well within the normal range) it probably is safe for him to experiment a bit by not taking it for a little while to see what happens. I worry about Chuck doing things such as chopping wood, Dottie, but more than one hemo has said work doesn’t lower the rbc. It seems hard to believe, but that’s what they say. They do add not to get over tired, either. I am sorry, Patti, about your MIL, and the iron damage to her organs. We were told when Chuck went on the Exjade (his iron was 2400 at that time) that it would keep him from having to have it drawn out. If only the Revlimid would work for him as the Exjade has! But I suppose no two patient responses all the time.
Let’s keep hoping for a cure in 2007, sooner rather than later! Thanks, ladies, for keeping in touch. -
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