[jimkufis]

Hello Gene. Jim Kufis here. I am very pleased to hear that you are doing well with Revlimid. With regard to the platelets, a reading of 99 k/uL is OK and not a big problem. My current platelet count is 97k/uL. Reducing your dosage of Revlimid to 10mg every other day may be OK and this may increase your platelet count. You may consider changing to 5mg a day. I am currently taking 5mg every other day and sometimes I can not remember if the day is an or off day.

My hematologist says that I only need the amount of Revlimid necessary for red blood cell production and that this amount varies substantially from patient to patient. The major concern is not only production of red blood cells but the unfortunate side effect of Revlimid on Platelets and white blood cells.

In my case my WBC has droped to 1.5k/uL and my nuetrophils have droped to 18%. This is a problem. The lowering of the Revlimid doesage has caused my Hbg to drop to 9.2g/dL which is lower than I like but the drop in Revlimid dosage is to try to get the WBC up. If this does not work. Our next thought is to use Neulasta to kick up the WBC and increase the Revlimid to 5mg evey day to get the Hgb back up to the 10g/dL level. If the WBC does recover at the 5mg Revlimid doesage every other day and the Hgb stays low, the plan is to keep the Revlimid doesage at 5mg every other day and use Aranesp inconjunction with Revlimid to get my Hgb back up. Of course this may or may not work.

I have not had another bone marrow biopsy but I will ask my hematologist about this. He apparently does not think this is necessary at this time. But if I ask about it he most likely will do it. The other concern is that the Revlimid may stop working. I have read postings from MDS patients where the Revlimid has stopped working. I do not know if the cause of this is due to a progression of MDS or the immune system rejecting the Revlimid. On the bright side I have also read reports of patients having continued success with revlimid after 5 years of continued usage.

[jimkufis]

Hello Lynn. Jim Kufis here. You can get information on Danazol by visiting Wikipedia and other sites on the web. Or just do a search on Danazol.

[jimkufis]

Hello Lynne. Jim Kufis here. Last October I was on Exjade for two months and very good results. The side effects were a little difficult to deal with as the diarrhea was rather sever but controlled with Imodium a-d. Before I started with Exjade (1500mg/day)my ferritin level was approximately 2800. This level dropped to under 900 after less than two months. I have been off of Exjade for 4 months and the ferritin level is now under 800. I have been tx independent since last October due to Revlimid (5mg/day). According to the literature I have read on Exjade my response was on the exceptional side.

[jimkufis]

Hi Gene. Jim Kufis here. I have not had a repeat BMB but I see my hematologist next week and he may recommend another BMB. I feel OK presently and I am TX independent. From what I have read the Revlimid makes the missing q leg of chromosome 5 reappear. I have not read any reports about it affecting other chromosomes but I think it must have some effect on other chromosomes as I do not have the 5q- condition and Revlimid has improved my condition. It will certainly be very interesting to hear the results of your next BMB.

[jimkufis]

Hello Kenneth in VA. Jim Kufis here. From your CBC you seem to be doing great. You are correct in that I am not the best patient but I keep my Hematologist informed and we work together. He realizes that a lot of the treatments are trial and error in nature and we are just trying to find something that works. After I started Revlimid (5mg/day)in October my GI track become a problem and I reduced my Revlimid to 2 days on and 1 day off. This solved my GI issues and my Hgb went to 11.8g/dL and the WBC went to 9.7k/uL and the Platelets went to 854k/uL. I switched back to using Revlimid every day and after about 5 months my CBC gradually changed. The Hgb is now 9.8g/dL, WBC is 2.1k/uL, and the Platelets are 116k/uL. My Hematologists had me switch to 2 days on and one day off for the 5mg/day of Revlimid due to the low WBC.

On another point, the cost of the Revlimid charged by Celgene is extremely high. I get mine from Canada Drugs for $266 for 30 5mg capsules. The drug is made in India but seems to work the same.

I think we just need to keep a positive attitude and keep looking for a solution to this disease. I truly believe there will be cure and hopefully in our life times.

[jimkufis]

Hello Colin, Jim Kufis here. I tried Exjade for iron overload and found it to be quite effective. You can get this drug through Canada Drugs for a fraction of the cost in the UK. I take Revlimid and the cost in the USA is $11,000/month. I get this drug from Canada Drugs for $266/month. These drugs are generics but they are as effective as the name brand drugs.

[jimkufis]

Hi Kenneth. Jim Kufis here. I also have had seizures due to epilepsy since I was 37. I used to take Dilantin for this but the drug had the side effects of making my responses slow. In 1991 my neurologist changed my medication to Tegretol and I had no side effects and no seizures. After being diagnosed with MDS I discontinued the drug and the seizures have not returned in more than 3 years.

[jimkufis]

Hello Emily, Jim Kufis here. I am 70 yrs old and I was diagnosed with MDS 3 years ago and my hematologist projected I had about 3 yrs of life left. I am still here and doing OK. I have had 10 blood transfusions (tx) and 6 months of shots with Aranesp and Neulasta. The shots helped a little but not enough to make me tx independent. Last October I stopped the injections and began taking 5mg a day of Revlimid. This drug did improve my red blood cell count (RBC) and I have been tx independent since October. MDS is typically not curable but can be manageable. I do not know the type of MDS you have or the injections you are getting but your hematologist can fill you in on these points. You can visit some of the web sites on MDS and become more informed on this disease. Do not let MDS get you down. I think one of the best defenses is a positive attitude. You may be around for many more years than you think.

[jimkufis]

Hello Zoe. Jim Kufis here. I am 70 and have had MDS for 3+ years and my MDS is currently "controlled" with Revlimid. This is not a cure and is only supportive. The bone marrow (stem cell) transplant is the only known "cure" for MDS and works best with young people such as your self. It is a procedure that takes some courage but it potentially can provide exceptional results. Ask your doctor to fully explain this stem cell transplant procedure so that you are fully aware of what lies ahead. Also, if you have a low white blood cell count (WBC)would injections of Neulasta help improve the WBC count for your condition which may be refered to as Neutropenia. White blood cells are also called Leukocytes.

[jimkufis]

Hi Mary,

Mike is doing exceptional well with a hemoglobin reading of 16. Most of us with MDS have low readings. I wish Mike the best on defeating this disease.

Jim

[jimkufis]

Hello Mary. Jim Kufis here. For Exjade I suggest you look into Canada Drugs on your browser. You can get Exjade through Canadian pharmacies for a LOT LESS than the $35K co-pay you indicated. I am getting my lenlidomide (Revlimid) through Canada Drugs and this truly makes the drug affordable without insurance coverage.

[jimkufis]

Hello Fran, Jim Kufis here. I have had RA MDS for at least 3 years and do not have the 5q- condition. I have an abnormal karyotype of chromosome 3. I tried Aranesp and Nuelasta for 6+ months with only minor help. Last year I was transfusion (tx) dependent and in October of last year I stopped the Aranesp and Nuelasta and began taking 5mg of Revlimid (lenalidomide) daily. Within two months my hemoglobin increased from 7 g/dL to above 11 g/dL and I have been tx independent since then. This bone marrow disease is very complex and these drugs have varying results dependent on the patient. As you may have read, the drugs may stop working after a period of time due either to our immune system counteracting the drug or the MDS progressing to another stage. Revlimid does not cure our MDS it is only supportive in over coming the symptoms of MDS.The only potential cure for MDS is a "bone marrow" transplant and at my age of 70 this is not a good option.

[jimkufis]

Hi Colin, Jim Kufis here. I had 10 tx of PRBC (20 units) last year and my ferritin level rose to 2800. After a couple of months on Exjade the ferritin level dropped to the 800 range. I found this is quite an effective drug. The drug is not without side effects but it does work.

[jimkufis]

Hi Rachel. Jim Kufis here. I have had MDS for at least three years and last year I had 10 packed red blood cell (PRBC) transfusions (tx) for my anemia. Each tx was 2 units of blood and this take approximately 6 to 7 hours. The tx are painless and they did improve my RBC count and energy level. For me they lasted 3 to 4 weeks before I felt anemic again. With regard to Revlimid, I have been on Revlimid since last October and I have had a very positive response to this drug. Tx independent now. I do not have the 5q- karyotype but I do have 3(t,t). You can get the generic version of Revlimid from India via Canada Drugs. It cost approximately $266 (US) for thirty 5mg capsules. From my web investigations, Revlimid has been quite successful for people with 5q-. You may speak with your hematologist about this.

[jimkufis]

Hello Friend of 5q. Jim Kufis here. I have been on 5mg/day of Revlimid since early October 2009. My first month I had sever side effects of diarrhea, gas, and acid indigestion. To alleviate the symptoms I skipped a Revlimid every third day. After a month these side effects subsided and I am now taking the 5mg capsule every day with minimal side effects. Side effects seem to very substantially from patient to patient and it is best to try and adapt to the drug if it is fixing the anemia problem.

With regard to the cost of Revlimid, I was told that price of 28 of the 5mg capsules has increased to $11,000. I suggest looking into Canada Drugs which can provide the generic version of Revlimid for a fraction of the price.

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