Revlimid

[Rachael]

Kenneth in Virginia

I really hope your counts start to improve again. The specialist said the other day that he wished he knew how Revlimid improved our Hb and cytogenics. Even with all the advancements in MDS treatments the simple questions like how long do these drugs improve our lives for seem to be the hardest to answer.

Best wishes
Rachael

[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.

[Kenneth_In_Va]

Jim,

I have decided to go back to every other day on my Revlimid. That seemed to work well for me this Spring. That will effectively take me to 5 mg. per day and bring my platelets and white counts back in line. ( Actually I started a few days ago ).
I have another CBC due on the 29th of this month. I will see how I feel between now and then and see what changes occur on the counts. More importantly I need to find a level that enables me to do what I need to do, not get me back to some statistical "normal level". If that is effective I will suggest that we change my dosage to 5mg. instead of 10 mg. so I won’t have extra pills lying around.

Thanks for the feedback, my friend.

Gene In Va.

[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.

[Kenneth_In_Va]

Just thought I would update this thread on a change in my meds and symptoms:

Went in for my scheduled visit yesterday with my Oncologist and we spent quite a bit of time talking about any changes that I might be experiencing since I have just passed my 1st anniversity on Revlimid.

For the past 6 weeks I have been experiencing a good deal more diarrhea than in the past. It seems that every time I eat anything I am off to the bathroom about 30 minutes later. Regardless of the quantity I eat, that same quantity comes right out. This happens approximately 5 days out of the week. In the past, I would only experience a bit of diarrhea once or twice a week.

So the oncologist is suggesting I finish my normal 10 mg/day daily dose for the rest of this month. Then stop all Revlimid until mid-February. He doesn’t believe this 6 weeks off should throw my counts for a loop but I’m not as confident.

[Kenneth_In_Va]

Thought this group might like to see this issue from the MDS Beacon from the week of Dec. 26th 2010:

Title:

Revlimid Does Not Increase The Risk Of AML Progression In Myelodysplastic Syndromes Patients (ASH 2010)
by Emily Plummer

Text follows:

French researchers found that treatment of lower-risk myelodysplastic syndromes patients with Revlimid does not increase the risk of progression to acute myeloid leukemia or decrease survival compared to similar patients not treated with Revlimid.

Dr. Lionel Ades of the Groupe Francophone des Myelodysplasies in France presented the results at the 52nd annual meeting of the American Society of Hematology in Orlando earlier this month.

Revlimid (lenalidomide) is approved in the U.S. to treat lower-risk myelodysplastic syndromes (MDS) patients with the chromosomal abnormality deletion 5q who are dependent on red blood cell transfusions.

However, there was concern in Europe that Revlimid may be associated with an increased risk of progression to acute myeloid leukemia (AML).

To address that concern, the French researchers analyzed data of 95 transfusion-dependent lower-risk MDS patients with the chromosomal abnormality deletion 5q, as well as 99 patients with similar disease characteristics who did not receive treatment with Revlimid, to assess the risk of AML progression and overall survival for both groups.

Disease score, gender, age at diagnosis, and genetic abnormalities were assessed for each Revlimid-treated patient, and 71 of them were paired up with a close match from the group without Revlimid for comparison.

The researchers found that patients receiving Revlimid had a lower risk of AML progression. After four years, 9 percent of the patients who received treatment with Revlimid had progressed to AML compared to 16 percent of patients who did not receive Revlimid.

In addition, treatment with Revlimid did not decrease overall survival in patients receiving Revlimid. Patients receiving Revlimid survived for 150 months compared to 73 months for patients who did not receive Revlimid.

For additional information, please see abstract 976 on the 2010 ASH meeting website or the Celgene press release.

[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.

[mazda]

Thanks for the info…

[Kenneth_In_Va]

Good afternoon Jim,

Really great to 1) hear from you and 2) hear that you are doing quite well with your RBC, WBC and Platelet #’s. I think they are great for a guy half your age, much less for 71!

As I hinted at in a prior post I have stopped Revlimid for at least 3 months due to the high level of diarrhea I was beginning to experience. My Hemo/Oncologist is in full agreement, especially after reading the study from ASH listed above your letter that I copied into the forum.

I have had no Revlimid since Xmas day so that makes it about 3 weeks now. I am feeling great. diarrhea amount is about half of the Dec frequency. I haven’t had a CBC since the 1st week of Dec. but I did play 3 sets of doubles this morning and still have energy left now at work. I only hope it continues.

Gene In Va

[mazda]

New data suggest a offline too…..

[Kenneth_In_Va]

I thought I would update this thread with my changes in the past 2 months.

I stopped taking Revlimid (10mg/day) after 14 months because the level of diarrhea I was experiencing 5 days a week was beginning to cause a problem with my electrolytes, although my CBC was nearly normal with regard to RBC (3.66), HGB(13.8), HCT (39.4), WBC (3.9), and Neutrophils(1.4). My Platelets had dropped down to a low of 85 but I had gone to 10mg every other day in Nov and Dec and platelets had improved to 210 by the first of March.

So in early March I was feeling great, playing (singles tennis and winning) then, last week I noticed that my legs and arms were once again feeling heavy and I was feeling fatigued climbing the stairs again. I went in for my scheduled CBC on March 30th and found that my counts had plummeted back to nearly the same levels they were 15 months ago…drat.

I met with on of the Oncology Nurse Practitioners and am now back on Revlimid (10mg/day). So far, so good. No negative effects jumping back on the wagon so to speak. I’ll see how it goes. I will get CBCs weekly again, just like in the beginning to monitor counts, and make sure I tolerate it as well this time as last.

[rln]

I was on revlimid for almost 1 month and my platelets went from 29 to 4. i am currently off the revlimid until the counts increase. everything is taking about hgb but i have been monitoring hct (hemadicrit) when it 25 and above i have no symptions below that i feel tired and my face is pale.d

[Kenneth_In_Va]

Here’s another update on my progress being back on Revlimid for 8 months. At that time I had taken a few months off to let my diarrhea lighten up a bit.

I’m now nearly back to the same level I was at last December: my RGB is 3.7, Hgb is at 14, my platelets have stabilized at 132 for 2 months and the WBC normally runs around 3 and neutrophils hover around 500.

I have found that I can now control the diarrhea by having a banana at breakfast and some rice and an immodium during the day. My energy level are up and I am still playing 3-4 sets of doubles tennis every Monday (weather permitting).

Hope this note provides info for others considering this medication. I will ride this "horse" as long as I can.

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