4 months on Revlimid

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• December 12, 2006 at 10:23 pm #16351
  Maryvillepat

  Member

  Hi, my husband was diagnosed with low risk MDS n early 7 years ago. He was on Pro Crit (did nothing), then in clinical trials with Dr. Azra Raza in Chicago for almost two years, when he took thalidomide. His count came up, but it stopped working. His thyroid also stopped functioning, so he takes Synthroid, and he had mild neuropathy. He took several Vidaza treatments and went into remission three times. But he kept wanting to try Revlimid. He’s been on it 4 months, and they keep telling him at Celgene that it might take 9 months for it to kick in. He has a defective 5 q chromosome, which is what Revlimid is really supposed to help, but he keeps needing transfusions. Today his hemo said he’d up the dosage to 15 mgs. BTW, he does very well on Exjade, with no side effects. Too bad MDS meds don’t work as well! My husband is 75, in otherwise splendid health, ran about 21 marathons, but now runs very slowly. We keep wondering if yard work and running lower his rbc count. Some say yes, others no. Fortunately for him, he has no other health problems, such as high BP, high cholesterol, or cardio problems. He also doesn’t have arthritis, or any other chronic diseases that we know about. He said he’ll trade me his low BP and cholesterol, for my high rbc counts. Too bad it doesn’t work that way!

  December 13, 2006 at 5:44 am #16352
  patti

  Member

  Pat,

  There is a thread on here where someone mentions running and there was some discussion about it. You might look it up. I believe it was started by J.Claire. I believe there are also some links posted there that indicate distance running can exacerbate a problem that already exists with anemia.

  Hope this helps.

  patti

  December 13, 2006 at 8:19 pm #16353
  J.claire

  Member

  Dear Pat&Patti, I am glad that the topic of mds and running keeps coming up. I love my runs, but sometimes I get this nagging feeling about the longterm effects. I wonder if it could be because running boosts the immune system and some mds is caused by an overactive immune system. Pat, is your husband hypocellular or does he have low cellularity? I wonder of Dr. Raza has studied this. I will be seeing her in the next few months after I am finished with the workup at Dana-Farber. I have done lots of web searches about this but haven’t found much. Pat, has your husband ever dealt with irritable bowel or colitis or stuff like that? Just curious. Feel free to not answer if I am being too personal. Thanks again for bringing up this topic. I have acutally, for the first time in many years, decreased my daily 6-mile run to a 3-mile run/walk. It’s not easy, but I thought I needed to see if it changes anything. My counts are stable for now.

  December 15, 2006 at 10:06 pm #16354
  Maryvillepat

  Member

  Hi J. Claire: Thanks for your quick reply. The only problem my husband has is rbc anemia. His white cells, platelets, etc are okay. The low rbc of course lowers his hemotocrit. He had colitis many years ago, when he was much younger but not for probably 35 years. Dr. Raza, as you probably know, is now at UMass. Chuck went up there in July hoping to partipate in another trial, but it would’ve entailed going from East TN where we live to MA once a week for treatment, frequent bone marrow biopsies, and he decided against it. She had previously touted Revlimid but did not think it would work for him, despite it supposedly being effective for missing chromosome that he has. You have reason to be full of hope with such a good reading. Chuck was diagnosed when he was about 69. His rbc was 14 once while he was on Vidaza. He might go back on it again, as it did help him. But they keep telling him the Revlimid takes longer to kick in with some patients.
  Latest reading: WBC 3.3, HGB 8.5 (before blood transfusion), HCT 25.0, PLt 184, don’t know about the hypoplastic marrow or cellularity. Those are new terms for me.
  PS – To Patti: Dr. Raza is doing some clinical trials with CQ 10, cinnamon, and other natural supplements, but she wanted Chuck to try to chemo she is currently working with. His objection (and mine) in addition to the travel involved is the costs of biopsies, not to mention that in addition to plane fare, it’s expensive to get from Boston to UMass, although there is free lodging for Dr. Raza’s patients once you get there.

  December 16, 2006 at 3:02 am #16355
  Lydia

  Member

  Pat, mom was on Rev and was tx free for 3 months. Then she started Exjade and Rev stopped working. Don’t know if this is just a coincident. Someone on the forum suggested the Exjade flushes Rev, etc. out of your system. Anyway, she stopped Exjade this week and we’re waiting the see if Rev starts working again. We’re keeping our fingers crossed and praying like mad. Will let you know in a few weeks (or months) if Rev starts working again. Iron overload is a non-issue at this point since mom is now high risk for tx’s because of all her antigens.

  Hope it starts working for your husband soon.

  December 17, 2006 at 9:20 pm #16356
  Maryvillepat

  Member

  Thanks, Lydia. I hope your mom will benefit from the Revilimid without the Exjade. They did tell my husband at Celgene that Revlimid helps flush the iron out. So Chuck is going to ask his doctor about it. It was kind of you to email so quickly. Please keep me posted about your mom’s condition.
  Thanks,
  Pat

  December 19, 2006 at 4:34 am #16357
  Dottieb

  Member

  Hi Pat, Am interested in your comment that Celgene says the revlimid flushes out iron. Did you call the company or was it in a leaflet or something of that nature. I have a letter on trying to start revlimid with low counts on Dec. 10. Long story, Dr. on the skiddish side of trying the drug again because of the counts. Just don’t see anything else to try, maybe Vidaza? Dottieb

  December 20, 2006 at 1:57 am #16358
  Maryvillepat

  Member

  Hi Dottieb, Chuck’s doctor doesn’t agree that the Revlimid helps flush the iron out,and I don’t know if a pharmacist originally told him or not. He makes so many calls trying to get more info and make more decisions. They definitely told him at Celgene that it might take nine months for the Revlimid to kick in, and others there told him six months. Chuck’s doctor has increased the dosage from 10 to 15 mgs, but there again, someone at Celgene said increased dosage didn’t seem to matter, so you don’t know who to believe. Vidaza worked well for Chuck, and he thinks he might end up going back on it, but he is going to stick with the Revlimid at least for another month. Vidaza put him in remission three times. But Revilimid was so widely touted that he wanted to try it, and in fact it still is given good reviews. What they don’t tell you is that the results could be slow. BTW, they’re saying good things about Dacogen, too. I believe it is injected just like Vidaza. Good luck with whatever you decide. It is very hard to make choices. Hint: If you decide on vidaza, urge the nurse to really shake it up good, because we found out from direct experience that it lessens the side effects.

  December 20, 2006 at 3:23 am #16359
  Dottieb

  Member

  Pat, thanks. Every little bit of info is appreciated. John had blood today as his counts were rbc 6.3. Dr. is amazed at how well he looks and functions. Of course that count is doing the body no good. Fri. we will go and get counts again and see whats what. He rreally wants to try the revlimid but at this point I think vidaza may be a better choice. He did Dacogen for 4 cycles but at that point he was also diagnosed with myloma. Dr. gave him high doses of revlimid and that really tanked the counts. Have not recovered. I do believe the dacogen was working but with the newest problem guess the doc felt he had to go a different way. Whose right or wrong, guess we will never know. Anyway thanks for the info. By the way, John is also a young 69 and is having a hard time to make sense of all of this. Dottie

  December 20, 2006 at 9:43 pm #16360
  Maryvillepat

  Member

  When Chuck was first diagnosed, all they had available was Pro Crit, which did nothing, so that his counts really did drop. But several doctors said that the body adjusts, and he took his first transfusion (I think c. 2000) when it finally dropped all the way down to 5. That’s the lowest he ever was, and also, for a couple years he was virtually transfusion free. The doctors say that he can wait longer for transfusions if he chooses, because he has a strong heart. But when he’s getting transfused these days, the counts seem to dropping faster than previously. Today after a transfusion last week, his rbc was 9.5. He took his first 15 mg. dose of Revlimid today, and maybe it will bring the count back up. I guess we just have to wait and see. We were at least hoping for 10. I don’t think anyone can really make sense of such a weird disease as MDS. They’re calling it cancer now at some websites, yet Chuck’s hemo insists that it’s not. I have read from several sources that Revlimid works well with myeloma patients. I am sorry to hear that John has it, though. The problem is that each patient seems to respond differently, so everything has to be played by ear. Chuck’s doctor said Chuck has responded so well to everything that he feels optimistic about the Revlimid, but in the final analysis, he will probably go along with whatever Chuck’s decision–whether or not to stay on Revlimid–will be. How high were the doses of Revlimid John’s doctor gave him? I think 25 mgs. is the highest dosage. Please keep me informed of John’s condition, and BTW, have you heard of Dr. Azra Raza? She is dedicated to finding a cure for MDS and no doubt will sooner or later (hopefully sooner). It is hard to say Merry Christmas with a disease like MDS hanging over one’s head, but they keep saying we have to stay positive, and I guess that’s the best route. You and John will be in my prayers.
  Pat

  December 21, 2006 at 4:06 am #16361
  Dottieb

  Member

  Pat, Thanks for the reply. John is not feeling very well today, did get himself out in the backyard and tried to do a little walking. Ate a little dinner and is now watching college basketball. His dr. gave him the full dose of revlimid 25mgs for 7 days and when the counts dove so far and fast, he stopped. Right now he is on nothing. Day after Christmas we see the dr. again and go from there. In the meantime we go for a cbc on Fri. and I’m sure Sat. will mean another tx. Not exactly the way we planned to spend the holidays. Dottie

  December 22, 2006 at 12:21 am #16362
  Naomi

  Member

  Hi Pat and Dottie
  I have been on revlimid for 3 years. I had an episode this past spring and it sent my counts haywire. My doc had to get special permission to give me 15mg of revlimid. I wonder how you got larger doses. I have been off it for the past month because all of a sudden my platelets have dropped and we are working to get them back up. Nose bleeds do not help. Never had them in my life before.
  Naomi

  December 22, 2006 at 4:14 am #16363
  Dottieb

  Member

  Hi Naomi, John got the larger dose of revlimid because of the myloma…I believe that is the standard dose for that disease.. John is also having blood from the nose today. He is sure the platelets have fallen again. I would like to think it’s because the air is dry in the house as we had to turn the furnace on….very cold in So. Calif. Dottie

  December 23, 2006 at 6:15 pm #16364
  Dottieb

  Member

  Hi Naomi, Posted on the 21st. got in late so my letter was bounced to the 22nd. Guess you did not see it. I am in So. Cal and I guess I should post earlier. Anyway as we figured John would have to get blood today. Saw another doc and he was definitely amazed as how well John functions. That does not really help matters though. The reason John was put on the high dose of revlimid was the myloma. Believe that is the standard dose. His platelets have fallen a little more, had some pretty good clumps of blood out the nose yesterday, today nothing. Go figure because I truely do not understand. I am beginng to see why a cure is so elusive!! Dottie

  December 24, 2006 at 1:40 am #16365
  Maryvillepat

  Member

  Hi Dottieb & Naomi: Chuck just started 15 mgs of Revlimid. His doctor didn’t say anything about needing special permission. We are hoping it will get his rbcs up, as he doesn’t have problems with anything else. Chuck has had nosebleeds from time to time throughout his life, but never serious ones and doesn’t have them now, either. He just seens to need tx oftener. Naomi, how high did your rbcs go on Revlimid? I hope the higher dosage will help. I’m very sorry about John, Dottie. I hope he will have a turnaround. You know, ladies, our neighbor had a blood disease I can’t spell, but his bone marrow makes too many rbcc!?? There is only one drug, which is a chemo one, that they occasionally try. Otherwise there is nothing. It is a slow progressing disease, however. So far he feels no symptoms. They might have to remove blood if his rbc gets too high. It’s all very weird, but we must try to keep positive, as I truly believe that’s at least half the battle. Do keep in touch, both of you, and I’ll be praying for you. Perhaps 2007 will be the year there is a cure for MDS!
  Pat

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