[jimkufis]

Hey Jersey Guy. Jim Kufis here.
This transplant that you have gone through is truly amazing. Don’t expect your body to recover like getting over the flu. Recovery is going take many months as the chemo you went through effected your whole body. Being that you are still quite young I expect you will have a good recovery in time. You may move this a long with some exercise like walking every day and gradually increasing your distances. After you begin to feel a little stronger try some light wight lifting at the gym. Also, get out a little and be with other people. A positive attitude on recovery will work wonders. The fact that you are alive and improving is marvelous.

[jimkufis]

Hello Gene in VA. Jim Kufis here. Just an update on my condition. My Hgb has increased to 11.4g/dL and I have plenty of energy.My WBC is 10.6k/uL and Platelets are 176k/uL. The fly in the ointment is that my ANC is only 954/uL. My hematologist has reduced my Revlimid dosage to 5mg every third day (equivalent to 1.67mg/day). He continues to think that less is better if the Hgb is up. This month I am feeling very well and I was skiing at an 8200ft elevation last month with no noticeable energy problems. My legs did fatigue after about three hours but I think this is normal for a guy that is 71. How are you doing? Have you continued to reduce your Revlimid dosage? One concern my hematologist has with larger dosages of Revlimid is that it can cause myelofibrosis which is clearly undesirable. However, I have read some conflicting articles that indicate that Revlimid is used for myelofibrosis.

[jimkufis]

Hi Jersey Guy. Jim Kufis here. I am very pleased to hear of your success with the transplant. It appears that you have floored your opponent and now you are on the path to full recovery. Your success gives me hope that I may also have success with beating MDS.

[jimkufis]

Hi Gene in VA. Jim Kufis here.
It will take at least 4 weeks before you will notice much difference in your Hgb with a reduction in Revlimid. The red blood cells we make last for 120days typically and it takes a period of time before you will notice a change in red blood cell production. We all like to have plenty of energy but the amount of Hgb needed varies with the individual. For me a Hgb of 10g/dL is fine and at this level I have enough energy to go skiing at an 8000 ft. elevation. I have recently order my season ski pass. For some, an Hgb of 10 is truly a problem. Other than a good energy level we also need our immune system (Neutrophils) to be strong and our platelets to be adequate to protect against bleeding. Sometimes this is the compromise we must make with our medication. From the numbers you have been reporting you seem to be doing fine.

[jimkufis]

Hi Kenneth in VA. Jim Kufis here.
Based on my experience with Revlimid and your recent report I think less Revlimid works well for you. Less Revlimid may help your platelet count and white blood cell count. This is what I have experienced. Less may reduce your Hgb and red blood cell count but I find that an Hgb of 10g/dL is quite liveable. My Hematologist says that I only need to take the amount of Revlimid need to sustain my counts. He is not an advocate of using any more medication than is needed. My view is that if only the minimum that is required is taken my system is less likely to reject the medication. I have been on Revlimid (5mg every other day)since October 11,2009 and my WBC is 3.7K/uL, RBC 2.84M/uL, Hgb 9.8g/dL, Platelets 195K/uL. My ANC is 1221 which is low but is much better than it has been. Diarrhea is a regular event.

Recently I read an article about Linda Payne, age 68, who has had MDS for 22 years and has been on Revlimid for 7 years and it is still working. Here is the link to the article: http://www.aamds.org/aplastic/files/dms/MDSConnectionOct10.pdf. Revlimid can work for extended periods of time. In Linda’s case she has been on a low dosage, 5mg every other day, and it is still working after 7 years.

With regard to your Hematologist, it is not necessary to keep him happy. The person you need to keep happy and well is you.

[jimkufis]

Hi Jersey Guy. Jim Kufis here. Its good to hear from you. When you get through this fight and knock out this disease you are going to be my hero. The fight you are going through is the toughest I have heard of but due to your initial physical conditioning and young age the odds are on your side. I believe that God is in your corner and that you will be better soon. Keep your spirit up and believe that you will win.

[jimkufis]

Hi Jersey Guy, Jim Kufis here. We are all in your corner and know you will do well in this battle. I’m pulling for you to make it through this and KO this terrible disease.

[jimkufis]

Hi Gene. Jim Kufis here. I also have had leg cramps at night but these are infrequent and I found that simple leg stretch exercises cure the problem. I agree that adequate hydration will help reduce this problem and lack of potassium can cause cramps.

On another subject, I recently had my PSA and cholesterol checked and was surprised to have my total cholesterol reading drop to 94mg/dL. The last time it was measured was more than 2 years ago and the level then was 174mg/dL. I have regularly consumed flax meal for the past 5 years and this had the effect of dropping the reading from 210 down to 174mg/dL.

My PSA level was 6.5 for several years and this has dropped to 3.4. I think the Revlimid may be having an effect on this.

Have you had these measurements recently?

[jimkufis]

Hi Audrey, Jim Kufis here. I also take Revlimid and do not have the problems that you have shared with us. I do have gastrointestinal issues to deal with but not osteoarthritis. Perhaps you doctor can recommend a drug to help ease this pain. Many patience with 5Q- do well with Revlimid but sometimes the side effects are difficult to deal with.

[jimkufis]

Hello Kenneth in VA. Jim Kufis here. Its good to hear that you are experiencing good results with Revlimid. I particularly like the 14g/dL of Hgb. I have not been to that level in 5 years! As you indicated we do not have a good option for a "cure" to MDS other than the BMT and this is not a particularly good option for when your my age (70 yrs).

Currently, I am taking 5mg of Revlimid every other day and my Hgb is 9.1g/dL. At this level I am still anemic but I recently did a 5K walk in 50 minutes and I was not exhausted after the walk. The most noticeable effect of the anemia is that I am tired at the end of the day (6pm) but other than that I can do most everything without difficulty.

My WBC is 2.3k/uL which is still low and my ANC is above 650 which is low but OK. The Platelet count is 158. My hematologist thinks I should stay with this 5mg every other day for now. Apparently, his position is that if things are working and I don’t need transfusions its best not to rock the boat.

Like you, I have been on Revlimid for 10 months. My abnormal karyotype is T(3,3) which is that the long legs of chromosome 3 have swapped positions and a few genes have changed position. Revlimid does work on other karyotypes that are not 5q-.

With luck, these bright young researchers may come up with a fix for this MDS.

[jimkufis]

Hi Bob. Jim Kufis here. Ask your doctor about your cytogenics. In particular if you have any abnormal chromosomal karyotypes. This is important to determine if you have mutations of particular chromosomes. I have a mutation of the third chromosome. Many MDS patients have a mutation of the 5th gene called 5Q-. This is a case of one of the long legs (Q leg)being missing and a couple of genes being transposed.

[jimkufis]

Hello Rachael. Jim Kufis here. The Revlimid I get from India works just fine. Here in the USA it is not approved by the FDA but that does not bother me. The excessive price that is placed on Revlimid here is unconscionable and the Indian drug is an excellent alternative. This drug is a modification of Thalidomide which has been produced for more than 50 years and is easy to make. The Indian drug industry is quite safe and over 25% of the generic drugs consumed in the USA come from India. We should not need to sacrifice our financial health for our physical health.

[jimkufis]

Hello Ramey. Jim Kufis here. From the little information you have provided and your age I would suggest you go for the bone marrow transplant as recommended by your doctor. Your blast percentage is high and a good reason to get this done. For further confirmation, a second opinion from another hematologist may help.

The only cure for MDS is the bone marrow transplant and the success rate for this is higher when you are young. I think this is the best chance of getting rid of MDS and returning to a normal life.

[jimkufis]

Hello Rachael, Jim Kufis here. I just went to http://www.canadadrugs.com and entered Revlimid in the drug search box and got a quote for 30 capsules of 5mg Revlimid (lenalidomide). The price quoted was $266.15 USD. For 30 capsules of 10mg Revlimid, the price was $451.32 USD. This drug is made in India by Natco Pharma.

I have been using Revlimid (Natco calls it Lenalid)since February 23rd. My current dosage is 5mg every other day and this seems to be working OK. My platelets have improved to 137k/uL and my Hgb is 9.4g/dL. My WBC count is 1.7k/uL which is very low but improved from two weeks ago when it was 1.5k/uL.

The only bad side effect I have is occasional diarrhea which is controlled with Imodium-ad. I feel fine and I am transfusion independent since last October. My energy level is OK but not as good as when my Hgb was close to 12g/dL.

[jimkufis]

Hi Rachael, Jim Kufis here. If you have problems with the cost of Revlimid. Seriously look into getting Revlimid from Canada Drugs. You can find them on the web by just doing a search on Canada Drugs. I get Revlimid through them and 90 5mg capsules cost about $780. This drug comes from India and I have been using it for approximately 5 months. It works the same as the Revlimid from Celgene. Ask your Hematologist about it. My hematologist had no problem in providing a prescription. Last year I had PRBC transfusions which gave me iron overload. This was fixed by using Exjade from Novartis. Since I have been transfusion independent since last October, the need for Exjade was only for a few months. Transfusions are painless and you get an immediate improvement in energy. For me they only lasted for 3 to 4 weeks before I needed another transfusion. Revlimid took care the need for transfusions by increasing my Hg.

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