[jimkufis]

Hello Kenneth, Jim Kufis, here. Thanks for your posting. I do not have the 5q- that you have. My abnormal karyotype is t(3,3) which is a transition of the q legs of chromosome 3. Hopefully, we both will have long term good results from Revlimid. My blood test of today was about the same with the high platelet count continuing to get a little better (512 K/uL).

[jimkufis]

Hello All. Jim kufis here. I am very pleased to report that Revlimid is working well for me. I have had RA-MDS for three years and my Hb has been as low as 6.5g/dL and RBC as low as 1.8M/uL until I begin taking 5mg/day of Revlimid last October.I am now tx independent and my Hb is 11.9g/dL and holding and RBC is 3.94M/uL. The only negative is that my platelet count went as high as 854K/uL but has subsided to 545K/uL which is tolerable. Occasionally in life there is some sun shine. I am enjoying the sun shine for now and I went skiing in December. Keep the faith and good things can happen.

[jimkufis]

Hi Mike, Good to hear that you are having positive results with Revlimid. I have been on 5mg/day of Revlimid for 2.5 months and also had a positive response (7.5g/dL to 11.8g/dL of Hg)within 2 months. I have had the opposite response on WBC and platelets. Both increased with the WBC count up mildly and the platelet count up to >800 causing primary thrombocythemia. Recently, my Hg has dropped back to 10.6g/dL. Apparently many of us respond differently to this drug and it is difficult to project how long this drug will work.

[jimkufis]

Hello Plantcollector. Jim Kufis here. I have been on Revlimid (5mg/day) for 2.5 months and initially the side effects were very hard to deal with. I also was taking Exjade due to iron over load from PRC transfusions. The Exjade was very effective and I have now discontinued Exjade. To further reduce the side effects of Revlimid, I skip Revlimid every third day. This drug seems to be working fine as I am now transfusion independent and my hemaglobin level is above 11g/dL. With my current dosage of Revlimid the side effects are very tolerable. I tend not to be a very good patient as I frequently make my own decisions on drug use. I do keep my hematologist advised of my drug usage. For me, the one negative effect of Revlimid other than the usual side effects has been to increase my platelet count (>800)such that I now have primary thrombocythemia.

[jimkufis]

Hello Gini, Jim Kufis here. I have had MDS for 2 to 3 years and have not used Eprex. From a quick review of this drug it appears to be similar to Procrit. Both drugs provide erythropoietin (EPO) to the bone marrow to enhance red blood cell production. Typically, this drug is not effective if ones kidneys are already producing enough erythropoietin. If the kidneys are not producing enough EPO Eprex may help. A better drug is Aranesp as it has a half life of 49 hours vs. 6 hours for Eprex. The cost of Aranesp is approximately 10X of Eprex. Aranesp can also be used with Neulasta which may make the Aranesp more effective. These drugs do not work for everyone and its best to consult with your Hematologist on these matters.

I have tryed Aranesp and Nuelasta for 6 months and had some positive response from this therapy but not enough. I was receiving 2 units of packed red blood cell(PRC) transfusions every 4 weeks. This caused Iron over load (Ferritin level of 2800) and I started taking Exjade (1500mg/day) as chelation therapy to remove the iron. This drug was very effect for me and I am now off of Exjade. My hemoglobin veried from 6.5g/dL to 9.0g/dL. The higher level was after recieving 2 units for PRC.

I have stopped the Aranesp and Neulasta and now take 5mg/day of Revlimid. This is working as my hemoglobin is now above 11g/dL. This drug is only successful 25% of the time with patients that have chromosome mutations other than 5q-. I have a chromosome 3 mutation. Living with MDS is a challenge and you need to be proactive and do research on MDS and become more knowledgeable in this disease to better understand your hematologist.

[jimkufis]

Hello Kenneth. Jim Here. From what I have read Revlimid is quite successful for the 5q- condition. For many patience the missing long leg (q) of chromosome 5 reappears when using this drug and the anemia dissipates.

I have an abnormal karyotype of chromosome 3 with a transition of the long legs. I have been on Revlimid for 6 weeks and have had positive results with my hemoglobin increasing from 7.5 to 11.0 g/dL. The downside of this drug for me is the side effects. I have gastrointestinal problems from blotting due to excess gas and occasionally diarrhea.

[jimkufis]

The only drug I know of for low platelet count is Neumega. You would need to check with your Hematologist to determine if this drug would apply to your situation.

[jimkufis]

Hello Chuckk333. Jim Kufis here. I am 70 and also still a skier. I have had RA MDS for more than two years and was transfusion dependent for a year.

All of the injections, medication, transfusions, and doctors visits have been quite costly. I am on Medicare and with the exception of Neulasta injections most costs were covered. I am now through the "donut hole" of part D and pay 5% of my medication costs which total about $453/day. My cost is about $23/day. These costs seem very high but fortunately for me the drugs are working and I currently do not need a transfusion.

I have read that there are some drugs that may help your thrombocytopenia (low platelet count). Your hematologist can advise you in this area. However, my experience is that these drugs do not always work on everyone.

[jimkufis]

Hello Maureen. Jim here. I have RA MDS for more than two years and in the last month tried Revlimid and Exjade. The Revlimid was originally for 5q- but can be used for other abnormal karyotypes. Mine is a 3q abnormal karyotype. After 3 weeks of Revlimid my Hb increased from 7.5g/dL to 9.9g/dL. My Ferritin was 2800 and after a month of 1500mg/day of Exjade it dropped to 711. These drugs have worked well for me in the early stage of medication and I hope this continues.

[jimkufis]

Hi Carson. I have visited your web site before and it is a nice presentation. Based on the prognosis on your web site for an abnormal 3q karyotype I should have already been out of here. So much for prognosis. This last month I have experienced substantial changes. Not only has my Hb increased with Revlimid to 9.9 from 7.5 but I also started using 1500mg/day of Exjade and my Ferritin dropped from 2800 to 711. I have reduced the Exjade dosage to 500mg/day. I will keep you posted on future results.

How is your experience with Vidaza?

[jimkufis]

I’ve been on 1500mg of Exjade for one month. The only side effect was diarrhea the first few days. My starting ferritin level was 2800 and the latest test was 711. Exjade appears to be working well for me.

[jimkufis]

Hello Hunter Bob,
This is Jim Kufis and I have just started taking Exjade. The first dose of 1500mg taken water gave me diarrhea and a mild headache. The second two doses have not caused diarrhea but have given me a little nausea. This has passed within a few hours. I take the Exjade when I get up in the morning and wait 30 minutes before having breakfast. Dissolving the Exjade tablets in water takes a few minutes and it is not bad tasting (not great either) and it can be drank down easily. Given the alternatives this is an acceptable solution to getting excess iron removed from blood due to transfusions. I have had 9 transfusions (20 units PRBC)due to RA MDS. I am 70 years old.

[jimkufis]

Hello Pam,

I am 69 and have RA MDS. Sorry to hear of this AML development that you must fight. I pray that you will recover from this terrible disease.

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