[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.

[Kenneth_In_Va]

Jim,

I have been away from the forums for several months, really since Spring.

I wanted to see how you were getting along?

Drop me a line or respond here if you wish.

My private email is gene@ntw.bz

Thanks, Gene Milburn

[Kenneth_In_Va]

Hey 2109,

As "Mary4Mike" said (I’ll paraphrase) the same treatment does work the same on everyone. There are many variations of both MDS and MPD. I also have the 5q variation and had mild MPD as well on my first biopsy. I have been on Revlimid since October of 2009 but did take a break from it between Dec of 2011 and March of this year because of lowered platlet counts and increased diaherea (sp?) level.

Since I am one of the "lucky" ones with 5q that Revlimid is usually prescribed for I will say it has helped me maintain a good quality of life. I still work 40 hours a week and get in a few sets of tennis once a week. My "by-line" has all my count and diagnostic info in it. I’m just riding this train as long as I can until things change.

Initially this condition can sure get your attention but don’t believe all the gloom and doom on the internet, The data there is as much as 10 years old and much progress is being made in this condition. Check out the MDS foundation newsletter and even the Facebook page.

Good Luck,

Kenneth in Virgiinia

[Kenneth_In_Va]

Hey Sally,

I thought I would pitch in my "2 cents" with regard to what can and cannot be accomplished with this condition.

Of course, as this forum reflects, MDS in general is a highly variable condition effecting many of us in different ways.

I was diagnosed with the 5q syndrome variety about 30 months ago. (I also have an additional chromosomal abnormality to the 5q). I have been very lucky in that my health had been great up to the time I was diagnosed. I have also been lucky that my condition has responded very well to Revlimid. I have been able to work continuously throughout these last 30 months. I have a "desk job" as a Network Analyst.

My Red series counts are 3.23 for RBC, 12.5 for Hgb and 37.2 for Hct. My platlets run around 120 and neutrophils are ususally abt 700.

I wish you good fortune and caution you against reading anything about MDS that’s more that 3 years old as great progress has been made of late.

[Kenneth_In_Va]

The same article was referenced in the "MDS Beacon" this week. They call it the Penn Study.

Quote:

An approach similar to the Penn method could be used to treat MDS, although it would need to be modified so that the T-cells target MDS cells. Dr. Steensma said that the optimal way to target MDS cells is not yet clear. He also cautioned that a target needs to be carefully chosen, or the engineered T-cells could launch an autoimmune reaction against healthy cells too.

“Only with the more widespread clinical use of [engineered] T-cells will we learn whether the results…reflect an authentic advance toward a clinically applicable and effective therapy or yet another promising lead that runs into a barrier that cannot be easily overcome,” wrote Drs. Walter Urba and Dan Longo from the Chiles Research Institute in Portland, Oregon, in an editorial about the Penn study.

[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.

[Kenneth_In_Va]

I think you’re right Maggie.

Let’s send all the cancer to the mean people.

Gene_In_Va

[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

[Kenneth_In_Va]

Chris,
This syndrome is a blessed roller-coaster ride. Least it has been for me so far. Keep your sights focused as far down the tracks as you can in order to not focus on the hills and valleys along the way.
I am really happy that you have found two perfect matches. Let’s concentrate on them and the hope that that brings. Stay mentally tough. Keep focused.
We’re with you on the ride. Remember that fear is just the body’s way of focusing your attention!!
Let us know how your BMB turns out. Guess you have about 4 weeks to wait for those results or is your center quicker?

Kenneth_In_Va

[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.

[Kenneth_In_Va]

Chris,

That’s almost as bad as my Revlimid: 28 capsules are $11,600 per month. That’s $414.26 per pill! Luckily my copay is only $200 per Month.

Hope the new health plan doesn’t negatively impact that for either of us.

Gene_In_Va

[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]

Great to hear of your success and good health.
Merr Xmas to you and yours,

Gene Milburn,
Gene_In_Virginia

[Kenneth_In_Va]

Matthew,
Sounds like fatigue to me. I know that anytime my Hemoglobin or hematocrit drop below the normal range; my thinking gets clouded; short-term memory goes to pot and my feet, legs and hands feel heavier. I also feel like I’m in some kind of time warp or out of phase with those around me. Generally a change like that is gradual and I don’t notice it at first until my wife or kids say " Earth to Gene…"

Any of that sound familiar??

What’s your diagnosis?

Gene In Va.

[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.

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