4 months on Revlimid

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• January 15, 2007 at 2:14 pm #16381
  Maryvillepat

  Member

  Patti & 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.

  January 16, 2007 at 3:08 am #16382
  Lydia

  Member

  Been working a lot so haven’t posted – just quickly read what’s been going on.

  Patti, thanks for Exjade adverse number – will get a chance to call Friday – and also will call Rev people as haven’t done that yet.

  Pat, since Chuck went back on Exjade is he trying a lower dose? Mom noticed an improvement with Rev again after being off Exjade for one month. Will check with mom on her dose (she’s 79). Hope Rev will start working for him very soon!

  MDS certainly is trial-and-error and watch, wait and see. Very frustrating and scarey. Yes, let’s pray for a CURE in 2007!

  January 16, 2007 at 9:31 pm #16383
  Maryvillepat

  Member

  Hi 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!

  January 17, 2007 at 6:17 am #16384
  patti

  Member

  Found out an interesting note today from a nurse while mom was transfusing. I was telling her about Exjade and lowering whites and reds and she said they are also finding that Vidaza can cause extremely high platelet counts (stroke range) and …… oh good grief! Ever had it on the tip of your tongue and can’t remember it??? Now I’ll have to post the other thing later. But I thought this was interesting since a lot of folks are taking Vidaza. I’m sure I’ll remember the other thing in my sleep tonight.

  Patti

  January 17, 2007 at 8:08 pm #16385
  Dottieb

  Member

  Hi Patti and all, John was tx’d again yesterday as reds went down to 5.7 and whites at 2.5. He is on the exjade every other day, low dose and revlimid twice a week. Counts are not good, thats for sure but we feel we must keep trying. He did mention, before the dr. appt. that he felt his spleen was not quite as large as before, Dr. agreed when he felt it. Maybe some good news for a change. Will be looking into the goji berries. Where would one find them, health food store? Dottie

  January 18, 2007 at 5:05 am #16386
  LuAnn

  Member

  Hi Dottieb, All medication was stopped on my dad because he has an enlarged spleen. What did John do to decrease the size of the spleen? I was told it would not go down.

  January 20, 2007 at 6:49 pm #16387
  Dottieb

  Member

  Hi LuAnn, Went to Dr. again yestersay, spleen back to where it was. Dr. and John agrees that his spleen gets soft on occassion and that softness makes it appear to be smaller. So nothing good!! I have read that some people actually to have their spleen decrease in size while on Revlimid, but it sure does not happen overnight. John’s dose is very low and not every day although the Dr. is hiking up to one more day…every 3rd day now. Had ferratin test yesterday, no results yet; am hoping for a little drop and keeping pace with the tx’s. Dottie

  January 21, 2007 at 1:08 am #16388
  Maryvillepat

  Member

  I 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.

  January 24, 2007 at 6:39 pm #16389
  patti

  Member

  I know this post started out about Revlimid but has somehow come to include Exjade because of interactions. I’m going to move my Exjade comments to the “starting over with Exjade” thread just to make sure everyone sees them. Wanted to let you guys know though because it covers quite a bit of what we’ve been talking about here.

  patti

  January 26, 2007 at 5:56 pm #16390
  Maryvillepat

  Member

  Chuck 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.
  Pat

  January 27, 2007 at 12:35 am #16391
  chuckk333

  Member

  PAT, wHAT IS YOUR INSURANCE COMPANY?

  CHUCK

  January 27, 2007 at 1:49 am #16392
  Maryvillepat

  Member

  Our 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.
  Pat

  January 28, 2007 at 1:17 am #16393
  Maryvillepat

  Member

  Has 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.
  Pat

  January 28, 2007 at 5:44 am #16394
  patti

  Member

  Pat,

  Oh yes!! Mom takes a lasix after her first pint of blood and before her second (or third if she ever gets below 6 which is rare). Everytime. Generally, if this is starting to happen it means the kidneys are not functioning as well as they should in being able to kick the fluid through the body fast enough. Mom’s is a daily problem as well but she is able to deal with that naturally by taking cornsilk and dandelion tinctures twice a day. It’s just enough to keep her kidneys flushing the fluid. It’s just not enough when she pulls in two units of blood. As for the saline running for 45 minutes after the blood – that’s nuts!! We run mom’s until the line is clear fluid (no blood showing – about 10 mins. tops) and that’s it. I would not let them do that again to him. Also, ask his doc about taking one 20mg. tab of lasix between pints next time. But NOT daily. If he needs daily help use the cornsilk and dandelion because lasix daily is bad bad bad.

  Hope this helps.

  patti

  January 29, 2007 at 4:19 pm #16395
  Maryvillepat

  Member

  Thanks, 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!
  Pat

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