4 months on Revlimid

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• December 28, 2006 at 4:01 pm #16366
  Lydia

  Member

  Pat, the results are in – mom STOPPED THE EXJADE AND THE REVLIMID HAS STARTED WORKING AGAIN! She has had a tx every 2 weeks for the last month when Exjade kicked in. It took a few weeks for Exjade to get out of her system, and, of course, everyone is different.

  I’ve called the Revlimid people with her results in case it will help someone else calling – since Exjade has not been tested in people over 65. They cannot really give medical advice – hope they can relate others’ experiences.

  NO MORE EXJADE!

  Thank God for this forum. Hope everyone who needs it finds it.

  P.S. Forgot to mention her white count went down after starting Exjade and never had problems with it before. Now they’re okay after stopping Exjade.

  December 28, 2006 at 6:45 pm #16367
  Naomi

  Member

  Hi Pat & Dottie:
  I am in a low funk. My platelets have really been giving me trouble. I have had to have several txs and my hct went down, so yesterday I had to have plts and rcbs. I see the doc on 1/3, so should have a better understanding of what is happening. I still cannot go back on revlimid, as my counts are too low. I have no energy and do not like feeling like this, so just plug away one day at a time. Hopefully 2007 will be better for all of us.
  Naomi

  December 29, 2006 at 12:57 am #16368
  Maryvillepat

  Member

  HI Naomi & Dottie: Chuck has to have a Tx tomorrow, but only his rbcs and hct (24 today) are low. His platelets and wbcs are okay. He feels slightly lightheaded, but mostly now he’s discouraged from having to take so many Txs. His energy level is fine. After reading Lydia’s posts, he went of Exjade and has been off it a week. After reading Lydia’s latest posting (good news indeed) he’s going to stay off it for a while to see if his rbc goes up. Yes, we must keep our hopes up, and I’m hoping for the best for you.
  Chuck: 75, diag 2000, no response to epo. but was on thalidomide and did well for over two years, also did well with Vidaza. Today’s counts: WBC 2.8, Hgb 7.9, hct. 24.1 Plt. 147., 2nd week for 15 mg. Revlimid

  December 29, 2006 at 4:10 am #16369
  Dottieb

  Member

  Pat and Naomi, John has had a couple more transfusions. Tomorrow we go for counts again. Last counts have finally gotten the rbc to 7.1, has not been that high in nearly 2 months. Don’t know how many units of blood it has taken but it is way to much. The wbc is down to 3.1 and the platelets are bouncing between high 20’s and low 40’s. The iron is a problem and since he is over 65, I don’t know what the answer is. From reading the posts exjade clearly is not the answer so I’m not sure what the alternative is. Dr. doesn’t seem anxious to try anything. Will get my 2 cents in once again when we see him next week. John had a good day today, raked a few leaves, cut tomatoe plants down. I know these are not things he should be doing…..but!!!Anyway will let you know what the counts show tomorrow, hopefully something good. Dottie

  December 29, 2006 at 5:01 am #16370
  patti

  Member

  I’ve been following this post on Exjade with great concern because we have also noticed a drop in my MIL’s white cells since going to 500mg from 250mg. We have decided tonight to go back to the 250mg of Exjade and as soon as we see the doctor will be switching to desferal put in throught her picc line. Seems it should be more tolerable that way then having to poke herself in the stomach at night (which she wouldn’t do).

  For my MIL there doesn’t seem to be a good answer. Because her organs are already badly damaged from the iron she really can’t be without chelation. On the other hand, having her ANC’s at 300 isn’t good either. Very frustrating trying to decide what to do.

  Thanks for the good discussion on this.

  patti

  December 29, 2006 at 5:20 pm #16371
  Maryvillepat

  Member

  Hi 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.

  December 31, 2006 at 3:11 am #16372
  Dottieb

  Member

  Hi Ladies, Johns counts are actually up. Finally got the hgb up to 8.1, wbc 5.5 platelets at 41. This was after a 2 unit tx. Normally the counts just don’t move. I know it is time to attack the iron problem as his counts are much the same as your husbands Pat, maybe a little higher. I know the exjade is not the answer now as I believe there is a little kidney problem. I will look into the desferal and see what that is about. Someone said something about a needle in the stomach, is this similar to giving yourself a shot or something else. Appreciate your help. Dottie

  December 31, 2006 at 2:41 pm #16373
  Maryvillepat

  Member

  Congrats 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!

  January 11, 2007 at 5:26 am #16374
  Dottieb

  Member

  Hi Pat, Just reread your last note and your neighbors disease hit a cord with me. Could it be polycythemia. John started with this, boy do I wish we now had all the blood that was taken away at that time. Finally got started on the revlimid, because of the low counts, only small dose twice a week. Guess that is better than nothing. Also started on exjade and from reading some of the letters I am concerned about it knocking down the revlimid. Small dose also every other day. With the iron count so high I feel we have to try. Dottie

  January 11, 2007 at 6:01 pm #16375
  Maryvillepat

  Member

  Hi 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!

  January 11, 2007 at 6:33 pm #16376
  patti

  Member

  We saw mom’s onc. on Tuesday and came up with a game plan everyone feels comfortable with. With mom taking 250mg of Exjade her iron dropped 349 pts. in 4 weeks. She had two tranfusions during that 4 weeks and each tx tends to add about 250 in iron. So the Exjade at 250mg does a pretty good job of holding the iron in check. We’re going to wait two more weeks at 250mg and if her ANC’s come back to 400 or higher we’ll stay on the Exjade at the much lower dose. If not, we’re going to switch to desferal 3x’s a week through her picc line.

  Mom’s doctor figured this kind of stuff would start coming out once Exjade was in greater use. She said most of the testing done was on people with thalassemia (sp?) and sickle cell anemia. Her feeling was that in people with already compromised bone marrow diseases that the Exjade further damages the cell lines that are still functioning (however little that function might be).

  Mom’s doc asked that we call the FDA and let them know of the adverse reaction because without that information the pharma. comp. is not obligated to put warnings on the use of Exjade for other people. So, you can either call your prescribing pharmacy (which is what I did) and they will fill out the paperwork, or you can call the FDA’s adverse reaction line. Have no idea what that number is. I would encourage people who’ve had a reaction to do that because it’s the patient experiences that bring change as far as warnings, etc. I just explained to the pharmacist I talked to the trend that mom’s white and red cells have shown. I gave specifics regarding the correlation of Exjade dose to her ANC’s. For ex. at 125mg. of Exjade mom’s ANC’s were 500. At 250mg. the ANC’s were 400. At 500mg. of Exjade the ANC’s were 300. Etc. etc.

  Patti

  January 12, 2007 at 12:19 am #16377
  patti

  Member

  I got a call from Novartis this afternoon. They are the maker of Exjade. They asked that I post their adverse reactions phone number so those who’ve had reactions could report them. The number is: 1-800-882-6577. They will want a lot of information. They asked me for dates that mom started the Exjade, the corresponding dosages vs. her blood counts, etc. Some of the info. I couldn’t give him and they were going to contact the doctor directly. He said that being a new drug they are very concerned about any reactions folks are getting. Doesn’t matter if it’s a direct result of the Exjade or that two drugs won’t work together (ie. Exjade and Revlimid). Would encourage those of you with incidents to call and chat with them. They were very nice. Hopefully it will help others in the long run.

  Patti

  January 12, 2007 at 4:08 am #16378
  LuAnn

  Member

  Hi Patti, my dad was taken off all medication and turned to taking chinese herbs and teas. He saw a difference. While his HGB did not go up he does have more energy. However we found out that he will be starting Revlimid next week and I was wondering if he can continue with the chinese herbs. Is your MIL on herbs and Revlimid?

  I appreciate any info you can share.

  January 12, 2007 at 5:16 am #16379
  patti

  Member

  LuAnn,

  There should be no interaction between the herbs your dad is taking and the Revlimid however, it would be a good idea to ask whomever is prescribing his herbs. Since I don’t know exactly what he’s taking I really have no way of guranteeing it. Generally speaking, few herbs interact with medicines. The main ones I can think of off the top of my head are blood thinners. If someone is taking blood thinning herbs (garlic, onions, etc.) then they have to be careful taking things like coumadin. Check with his chinese med. doc but I don’t think you’ll need to worry about any reaction. The only think my MIL takes is neupogen and there is no issue with it and the herbs.

  Incidentally, it took my MIL’s HGB 8 months to maintain 8. Prior to that she always had a low of 6’s before transfusing. Now, her HGB doesn’t go below 8 no matter how low her HCT gets. That ends up being nice because she generally has no shortness of breath, heart pain, palpitations or anything like that anymore because her HGB is staying higher. Glad to hear your dad is feeling better on the herbs.

  Hope revlimid works for your dad!

  Patti

  January 14, 2007 at 4:35 am #16380
  LuAnn

  Member

  Patti,
  I’m hopeful the herbs and tea will kick in after a while. Right now, dad is feeling more energetic since he started but I think he is getting tired of the regimen, 18 capsules and 3 cups of tea a day and acupuncture 3x/week. But I encourage him to continue going. I’m hoping the herbs/tea will reduce his spleen so he can resume taking the Procrit again. Before the dr. stopped the Procrit he was being xfused every 2 weeks. Now it’s once a week.

  In reading this line there seems to be some controversy about the interraction of Revlimid and Exjade. Dad is on 2000 mg a day of the Exjade and it’s holding his iron level so the dr. doesn’t want to decrease it. I’ll speak with him about this for his opinion. Hopefully dad will start the Revlimid next week if his numbers ar OK.

  Thanks for your input and I’ll keep you posted. This disease has so many issues it’s difficult to make a decision. Thank God for this forum and everyone on it!

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