[Kenneth_In_Va]

Chris,

The internet is a dangerous place when it comes to doing "generic research" on a very "not generic" disease like MDS!
Much of the information is 5-8 years old. As such, the percentage and the prognoses are based on the medications and treatments available then. Revlimid, Vidaza and Dacogen were still in clinical studies then.
Make sure to only look at abstracts from literature dated in the last 2-3 years. I get updated article abstracts from http://www.pubmed.com. These are for the major medical journals but you don’t have to pay for the abstracts, only for the full articles.
Don’t let older information scare you.

Gene In Va.

[Kenneth_In_Va]

Chris,
Good to hear that the Doc. have ruled out some of the Chronic Myleo-proliferative Syndromes with the negative results on the BCR/ABL. My first BMB showed elevated marrow hypercellularity also but since I have had no enlargement of my spleen we’ve been concentrating on the MDS side of the MDS/MPD picture.

Any results from your last bloodwork yet?

Gene In Va.

[Kenneth_In_Va]

I second what g-masews said. My paperwork folder is nearly 3 inches thick. I also graph my CBC #’s. It makes me feel like I’m in control. (I know I’m really Not.

Gene In Va.

[Kenneth_In_Va]

Hey Chris,

Sounds a lot like my experience between August and October. Did the Hematologist give you a diagnosis like Macrocytic Anemia?
What are the findings from your Bone Marrow Biopsy? Are there any references to which chromosomes are abnormal? Any references to blast count?
The BMB results are the best information to go by as to what is up.
Sorry to be "meeting" you on this forum but its a great place to come for info and help. This disease can be different with each one of us because of the specific chromosomal changes each have and all the combination’s and permutation’s.

Send me some more details. I’ll help if I can and if I can’t, I know others will.

Gene In Va.

[Kenneth_In_Va]

Hey Hal,

I’ve been taking 10mg Revlimid for 2 weeks short of a year now. I work 2nd shift so I get home around midnight after eating "lunch" about 6:30 PM. I take my Revlimid and 2 dilantin with a glass of water and go right to bed. Only had one night that I couldn’t keep the pills down. Revlimid does make you dizzy so for me it’s the best time; I don’t need to be sluggish at work. Some folks need an additional pill to keep them from being nauseated by the medication. I’ve been lucky not to need it. I also never stop. Some regiments are 3 weeks on and a week off. I take 1 daily, every day.

Hope your wife makes out ok. Good luck.

Gene In Va.

[Kenneth_In_Va]

Time for an update on my CBC. Last week ended a full 12 month cycle on Revlimid. Although I still continue to be transfusion free, my system may be starting to "get tired" of the drug as my primary counts are beginning to fall. I have stayed on the regiment of 1 10mg tablet a day, every day since April. I experimented with 1 every other day for 2 cycle which had the effect of increasing my platelets and WBC and had no negative effects on the RBC or Hct. Went back to standard daily doseage to keep my Oncologist & hematologists happy.

For the past 2 months my platlets have fallen fro 121 and now at 80. My RBC has dropped from 4.2 back to 3.62. Hgb from 15.1 down to 13.1 and Hct from 44.4 and now at 38.

I am uncertain as to whether this means that the Revlimid is loosing it’s effectiveness for me or if this is just some sort of "normalizing" action. I am still able to funtion well and don’t notice any of the fuzziness or forgetfulness that I experienced at the onset of this disease and while I was on transfusions. I won’t see the Oncologist for another month but I will probably send him a note or phone call because I am feeling different and also have been experiencing an increase in the instance of diarrhea I experience.

This may be the other side of the roller-coaster, Or it may be that shoe that didn’t drop from the top shelf in the closet earlier. I guess time will tell.

Jim and Mike, how are you guys doing? We all started our Revlimid regimes about the same time last year, how are you guys doing?

[Kenneth_In_Va]

Good to hear you are doing Ok! You should have signed up for the Biggest Looser before you went into the Hospital, just kidding! Keep up the good fight. We are all pulling for you Bob.

Gene In Virginia

[Kenneth_In_Va]

Please call the MDS-Foundation or email this address for the info you seek:

Patientliaison@devmdsfound.org.php53-13.dfw1-2.websitetestlink.com
609-298-1035

They’re happy to help.

Gene In Va

[Kenneth_In_Va]

Please keep us informed, Bob. There are a bunch of us out here who a very interested in how you are doing.

Gene In Va

[Kenneth_In_Va]

JerseySon,

I have been on Revlimid (10 mg./deum)for 10 months with great results. My Red and white counts are nearly back to where they were before I was diagnosed. Platelets and neutrophils are still a little low but it’s a fair trade! I only had a few bouts with diarrhea the first month. I found I can can modulate the constipation/diarrhea thing by increasing my water and fiber intake. Has she seen a nutritionist since going on the medication…might help. I recommend not taking one pill to counteract another if it can be helped. Hope this helps.

Gene_In_Virginia

[Kenneth_In_Va]

I enjoyed reading your Blog Michael. Like others on this forum, I too was shocked and surprised to find that I have MDS. I have been an active athlete since playing Tennis in college (45 years ago) I have been lucky to find Revlimid which has returned me back to the courts. I played a set this past Saturday!

Good luck to you.

Gene In Virginia

[Kenneth_In_Va]

That’s amazing Simplistic007!!!

Keep the faith

Gene In Virgina

[Kenneth_In_Va]

Good Luck, Jersey Guy and stay mentally tough-you are in contol of that part. Let the Drs and support folks take care of the rest of it!!

Gene in Virginia

[Kenneth_In_Va]

Hey Jim,

I did have a routine PSA test a few months back but it must have been un-remarkable as my GP didn’t mention anything. I’ll ask him the next time I see him to compare the ###’s to see. Likewise on the cholesterol. I have been lucky on that as well for the last 5 years. I did have an elevated Triglyceride level a few years ago but that cleared up when I started limiting my soft drinks to 1 a day and began using honey instead of sugar in my coffee.

I’ll ask about the PSA and cholesterol levels next time to see if I had the same results as you on these. That would be nice to be able to report some positive side effects for Revlimid wouldn’t it? (I posted the results of this weeks CBC on another topic yesterday)

[Kenneth_In_Va]

Just thought I would give an update on my condition as I just finished my 9th month on Revlimid 10mg.

Got my results from the clinic today following a routine visit to the Oncologist office for a CBC:

WBC steady at 3.8
RBC steady at 3.96
Platlets climbing @ 255
Nuetrophils variable but stay between 700 and 800
Hemogobin steady at 14.0
Hematocrit steady at 40.5

I feel very lucky that the Revlimid continues to provide a great quality of life for me and sometimes even forget I have cancer.

I have been eating as healthy as I can and stay away from red meat, eat mostly fish and chicken plus as many fress fruits and veggies as I can afford.

I will continue to "ride this horse as long as I can".

I wish my fellow travelers good spirits and good health.

Gene

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