Revlimid

[Kenneth_In_Va]

Thanks for the good wishes.

I just finished my first month on Revlimid and the only change so far is that my WBC count just dropped .2 putting me into the "low white blood cell group" for the first time I know of. I can also tell my nymph node are just a bit enlarged and tender under my armpits (not meaning to be crude). Guess the WBC drop is a slight indication that something is occurring. I go in on Xmas Eve for another CBC. It’s been since the 7th since the last one and had a 2 unit RBC TXF at that time as well. Thaat’s my 5th and 6th unit total. I feel pretty good. Can climb stairs with no calf burn.

Day by day. Carpe deim as they say.

Season’s good wishes to my fellow travelers.

[mikeirbyusa]

Kenneth, hang in there. I just finished my 3 round of Revlimid and it finally brought my Hemoglobin up to 11.3. A month ago it was 7.3 so I’m thrilled to say the least. BUT it has brought my WBC down and my platelets are also down. But at least I do have some energy and feel like doing some things now.

[Kenneth_In_Va]

Thanks Mike, and Happy Holidays to you and the others out there.

I am working today (second shift Computer support 3-11pm) so that is why I am on the keyboard today.
I just had a new CBC yesterday and find that my WBC and platelettes have both dropped about 25% since the first of the month!!

I find it ironic how I am actually looking forward to "feeling worse" in hopes that it means that the Revlimid may already be kicking in. My glands are a bit swollen and the Shingles on my arm from 10 years ago is noticeable again. I believe both are the result of my immune system dropping off.

I had my third transfussion on the 7th – getting 2 units of PRBC so I feel pretty chipper. The Nurse Practitioner at the Oncology office says it’s time to start monitoring the CBCs on a weekly rather than bi-weekly basis. I plan to stay as far away from people who are sneezing and coughing as possible.
Enough of this rant…

Merry Christmas, ya’ll.

[Mary4Mike]

Kenneth,
Glad to hear that you are getting a response to Revlimid. Just how low are your whites? You really must be cautious around people now. It is obvious that your immunities are down if you are experiencing shingles and swollen lymph nodes. This is viral. Does your doctor know about this? They could prescribe antivirals that would minimize the severity, but you should get on them as soon as possible in order for them to have an effect. I would run this by my doctor or nurse practicioner.

All the best to you and stay away from sneezing and coughing…..perhaps wear a mask and don’t forget the hand sanitizer!!!!!

Mary

[jimkufis]

Hi Mike, Good to hear that you are having positive results with Revlimid. I have been on 5mg/day of Revlimid for 2.5 months and also had a positive response (7.5g/dL to 11.8g/dL of Hg)within 2 months. I have had the opposite response on WBC and platelets. Both increased with the WBC count up mildly and the platelet count up to >800 causing primary thrombocythemia. Recently, my Hg has dropped back to 10.6g/dL. Apparently many of us respond differently to this drug and it is difficult to project how long this drug will work.

[Kenneth_In_Va]

Mike,

I just got the results back from this week’s CBC and, suprisingly enough, my WBC have leveled off and altho’ the platelets are still dropping they remain in the normal range at 220. But the celebration today is that my HCt has remained steady. The last 3 transfusions have usually lasted 6 weeks with a gradual decline from 30 down to 20 or 25. Today I was still at 30.2 so I am doing my little carpe diem dance tonight.

Happy New Year to you all.

[mikeirbyusa]

My numbers are still improving, 11.8g/dL of Hg now and my WBC and platelets also improved a little. This stuff seems to be doing the trick.

Hope everyone has a GREAT New Year!

God bless you all.

[Kenneth_In_Va]

Hey Mike,

I just got some wonderful news today. (I’m on the top of the roller coaster for a bit).

I went in for my now weekly CBC. It’s been almost 2 full cycles of Revlimid since I began the drug around Thanksgiving. My hematocrit was at 31.0 today, which is 1 point higher than it has been following my PRBC transfusions. my WBC has leveled out at 3.2 (down from 4.3) and the platelets have dropped from 400 gradually down to 157. My Hct has been as low as 19.4 before my first transfusion. It sure looks like a classic, positive response. ([censored], I hope so!!) I didn’t think I would react this quickly to the drug.

I go back next week for another CBC and a meeting with my Oncologist. If things continue this way I guess he may lower the dose or the interval to keep the platelets from pushing me into a throbocytopenic condition. I am going to be very cautious when it comes to the possibility of lower extremity blood clots as my Dad had angina and died from a loose clot in his legs.

I want to rejoice but I also am holding myself back cause I know the ride ain’t over yet. I have another 2-3 months before I am scheduled for my next BMB. Carpe Diem till then.

Best to you all,

Kenneth in Virginia

[Kenneth_In_Va]

Just thought I would share the location (url) of an article on Alternative dosing schedule for Revlimid that I found yesterday while reading another article in the MDS Beacon.

I suggests that using Revlimid at 10 MG every other day may be just as effective at reducing transfusion dependence and at the time both lowering the level of side effects and cutting the cost effectively in half.

This study was done in Italy recently and used a very small size study group but it certainly does look promising.

Here’s the link:

http://www.mdsbeacon.com/news/2009/11/24/revlimid-alternate-day-dosing-regimen-shows-promise/

Kenneth in Virginia

[mikeirbyusa]

Wonderful to hear the good news Kenneth!

Go next week to talk with with Doc and might mention this every other day thing to him. All depends on where all my numbers are of course.

I hear yah about celebrating, this roller-coaster we are on just doesn’t leave a lot of room for excessive celebrating does it? But I have learned to be thankful for the small things.

Take care and best of luck to you.

[Kenneth_In_Va]

More good news today:

Hct still climbing (31.0 last week – 31.2 this week) now 8 weeks since last Txf. Also good news in that both WBC and platelets are starting to climb upward a bit! Neutropils are still a bit weak but I’m still tickled. Doc has moved me back to every other week CBC’s.

Now I’m worried about this stuff working too quickly. I don’t want to set myself up for a fall.

I mentioned the every other day doseage schedule to my Oncologist and he said: "if your current schedule is working this well I’m not even going to consider changing it!"
I bet that schedule will work tho’ and I’m going to hold that back like a wild card in poker.

Keep your fingers crossed. I’m still looking one day at a time.

Good Luck to all.

[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

[Zoe]

Kenneth,

Yeah!!! What great news! I am also encouraged by the doctors listening to your renegade views. Hopefully they wll "allow" you to continue. Say hello to the Captain for me. I haven’t danced with him for a long time, I go for the green with Jose (as in Cuervo).

[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]

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?

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