[Maryvillepat]

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

[Maryvillepat]

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

[Maryvillepat]

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

[Maryvillepat]

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.

[Maryvillepat]

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

[Maryvillepat]

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.

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