[Kenneth_In_Va]

Audrey-

I also have 5q minus syndrome (with a t(2,11) kicker as well. I have had deep muscle cramping off and on for a few years. I wasn’t diagnosed with MDS till last Fall and think they began waking me up at night when I turned 55 or so. I’m 63 now.

I have found that my cramps are proportional to the amount of water I drink during the day! If I have at least 2 full grasses of water during the day I don’t have leg cramps at light. I also try to eat at least 1 banana every morning for the potassium and take a children’s asprin (80mg) daily as well. Those 3 things have pretty much put an end to my leg cramps at night and I don’t believe they would be harmful for anyone to try. That said, check with your Docs to be sure before you try my remedy.

Hope this helps some.

Kenneth (Gene) In Virginia

[Kenneth_In_Va]

Hey Jim,
Good to hear from you, as always.

Glad to see the alternate day regiment is also working for you. I don’t think there is much literature defining the half life of the drug but, obviously, your and my experience indicate that it is longer than 24 hours. So between us we can say that 100% of our population (2) has seen no detrimental effects ( and it effectively cuts the price in half as well) ;~}

I hope your WBC and ANC will rebound a little with the change. I am not ready to change to 5 mg as yet. Cost is the same as far as copay is concerned. Now when I retire (if ever) and go on Medicare I will probably switch to Canada/India and look into cost differences then for 5 vs 10. I think 10mg was $466 for 30 was abt $250 or so for 5 will be closer to what I am paying now in deductibles.

I take heart watching the chemical trials for new potions and especially in the area of histone deacetylase (HDAC) inhibitors – compounds designed to reactivate genes that normally protect against cancer but are turned off by the cancer process. There’s a good article on that in "MyeLyloma Links" this week.

Keep fighting the good fight, good sir and I will "look for you on the flip-side".

[Kenneth_In_Va]

Hi FSEOER2010,

I’m guessing that you are directing your question about the T(2,11) to me as I think I’m the only one is this thread with that and Del(5q) so I’m responding.

The last biopsy showed that the chromosome abnormalities had disappeared from 6 of the 20 specimens studied. Those 6 were normal! The remaining 14 specimens still showed the same 2 abnormalities: deletion of portion of the long arm of chromosome 5 between q22 and q33 and trans-location of p21 and q23 between chromosome 2 and 11.

Most literature I have read indicates that the response for the Del(5q) is somewhat normal but I have not seen references to the fact that other anomolies like my additional trans-location can also be affected by the meds.

I hesitate to use the word remission, because it hints at a temporary cure" but if you can define remission as a positive change and return to felling no fatigue… I will agree to that. The other definition gets my hopes up and my oncologist is quick to remind me that the only known cure for MDS is a BMT.

On my CBC 2 days ago my hemoglobin was 14.0, WBC was 3.8 and platelets were 122. This is 8 months since I began Revlimid. I feel great. Thanks for asking.

[Kenneth_In_Va]

Rachael, I am really glad to read that you have gotten approval from your insurer to assist with the cost of the product!! YiPee.

Now hope it works for you as it has for others of us on the forum.

By the way, Celgene, and Diplomat Pharmacy (speciality phamracy that supplies Revlimid for me) have financial assistance funds that can offset part of the cost for co-pays, etc. Unfortunately I couldn’t qualify due to income level. Wife and I both still work. But you should look into it. Also there is assistance available from the Leukemia Society. Both Celgene and the Luekemia Soc have surveys and forms to fill out but there is help available there.

Have you heard anything on the BMB yet?

Good luck with everything.

[Kenneth_In_Va]

Hi,

You mention that your Red count is 9.2. I’m gonna guess that’s Hemaglobin. I know when I was first diagnosed, mine went down to 8.5 and I had no energy, poor short term memory and was very grumpy. I was, and still am, working 8 hours a day. I can’t imagine 12 hours at that level. You have to keep in mind that the average age for folks with MDS is retirement age or higher. I was 62 then. I think your younger age is really helping you out.

Like Jim suggests, BMT is the way to go especially at your relatively young age. Have you had a Bon Marrow Biopsy (BMB) as of yet? If so what were the results?

Good Luck with the Donor search.

[Kenneth_In_Va]

Rachael,

I just finished reading an article from the MDS-foundation stating that 40% of all people with MDS experience anemia. That’s what got me to the hematologist in the first place last year. I didn’t have reason to believe that any of my other blood counts were low as well until I began feeling short of breath. I had a BMB following the first CBC at their office and that’s where the del(5q-) was discovered and the Revlimid followed. Looks like Jim has responded well to it and I have, too.

Jim has been getting his thru a Canadian Pharmacy, I believe. My insurance pays all but $200 a month. I think I remember the price through one of the online pharmacies in Canada was about $250 per month (not sure of the concentration as to whether the price is for 5 mg or 10mg). Hopefully you will be able to use one of those because the stuff is currently being billed to my insurance at $11,600/mo. after my $200 co-pay.

Good luck on the Biopsy. I found that if I joke my way through them they don’t hurt as much! Plus it confuses the Docs 😉

[Kenneth_In_Va]

Jim,

Got my 2nd BMB results back this week. Prior results show both the 5q- and t(2,11) on all 20 samples profiled. This time 14 were that way and 6 were normal (both the q leg and trans-location have disappeared on those 6 samples).

Needless to say I am in good spirits. I have an upcoming appointment with the oncologist/hematologist to discuss the alternate day dosage at 10mg. He is conferring with his peers as well. That meeting is scheduled for end of June. I will maintain daily but you will be interested to know that since I have gone back to daily dosage first of April my platelets have once again fallen and are now at 99 whereas they had climbed from 110 to 160 between mid-Feb end of March.

Have you had your 2nd BMB yet?

Gene in Virginia

[Kenneth_In_Va]

Hey Rachael,

How did it go with your visit to the specialist at the end of February?

Drop us a line with an update.

Kenneth_in_Va

[Kenneth_In_Va]

Thanks Zoe,

The biggest suprise for me was that with respect to the 6 samples that came back normal is that not only had the long arm of chromosome 5 "grown back but that the trans-location between 2 and 11 had also "disapeared". This may have positive implications for others who are considering Revlimid but don’t have the classic del(5q-) syndrome. (I don’t because of the added complexity due to the trans-locations.)
Perhaps there will be more trials with non-5Q patients as well as more trials with patient’s having complex karyotypes.

[Kenneth_In_Va]

Thought I would send in an update on my results and response to Revlimid after 7 full cycles. I received the results of my 2 BMB today from my Oncologist.
My system continues to tolerate the Revlimid. I did go back to 1 10mg cap daily back at the start of April.
Previously everyone of the 20 specimens tested had the same karyotype. This time 6 of the 20 were completely normal!! I am really tickled. There is also less fibrosis. My counts are now Hct of 45, WBC of 4.6 and platelets at 99.
The Oncologist is contacting some of his peers to seriously consider "allowing" me to officially switch my doseage to every other day as my "renegade trial" doing that between mid Feb and April resulted in my platelets returning back into the normal range.
I will do a short dance with Captain Morgan tonight 😉

Best to all,

Kenneth In Virginia

[Kenneth_In_Va]

Hey Jim,

I missed seeing your reply for the last week until tonight. Certainly didn’t mean to ignore you.

I wonder, have you had a repeat to the BMB since you went on Revlimid in October? I have a repeat scheduled for the first of next month. If you have, were there any changes in your karyotype?

I will be interested to see if Revlimid is just suppressing the condition or is changing the #’s… Most studys just say "transfusion independent" if the drug is sucessful but don’t go any detail that I have found.

Thanks and good health to all,

Gene in Va

[Kenneth_In_Va]

Mag,

Our ailments are nearly identical. Except for the extra t(2,11) in my karyotype. I just turned 63 last month but haven’t updated my profile. (Guess I will do that tonight.

Interestingly enough, My wife is an NP and my mother was an RN for 50 years.

Has your heme/oncologist mentioned Revlimid/lenolidimide as a next step for you?

Gene In Va

[Kenneth_In_Va]

Mags,

You’re a genius!

So you have the textbook 5q syndrome. I have the trans-location from 2 to 11 as well. Due you have any reference to fibrosis inn your chart like I do?

Gene In Virginia

[Kenneth_In_Va]

Zoe and Mags,

Thanks for the urls. No luck. All I seem to find is cp20 shown at the end of a karyotype listing but never a definition. I have asked my oncologist/hematologist 2 times and he promises to ask the pathologist. Maybe he’ll remember when I see him next month for my 2nd BMB.

Mags,

I will have my 2nd BMB the 3rd of May so will then have comparison numbers. The initial BMB did not list the # of cell and the %. But I think it did say all showed the same results.

Thanks again,

Gene In Virginia

[Kenneth_In_Va]

I just got back from my last CBC (monthly now). I will have another BMB on the 3rd of May. Still improving. Hct now 14.0, WBC at 4.0 and Platlets at 247. I switched my Revlimid from 10mg daily to 10 mg. every other day 1 1/2 months ago and my whites and platlets started to increase instead of decrease immediately. I was very concerned about the platlets which were down to 132 in Feb. from my pre-diagnosis level of 350. My father died from a blood clot in his leg while taking cumadin (sp?)years ago (1981) and I have worried about that kind of thing ever since.

I feel great but my oncologist is not pleased that I changed my dosage. He has called a meeting with me on Fri. I feel that the results speak for themselves but I imagine he will bring up the agreement with the drug manufacture that requires strickness and no fooling around.

Jimkufis, I think we have something in common here. I remember you telling someone that you weren’t a model patient either, is that right?

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