Revlimid

[SusanJ]

We just came from the doctor with my daddy. We went prepared to talk about starting Vidaza, but the doctor suggested Revlimid first because my dad has the deletion 5q chromosome. Could someone please explain this to me and how Revlimid works? My dad’s platelets dropped from 51 2 weeks ago to 39 this time. Thanks for all the information you can give!

[Brenda P]

The del 5q is a mutation found in the bone marrow that is associated with MDS. If your dad has ONLY 5q deletion that is a good sign–he has a better prognosis and Revlimid is the best choice. If he has other chromosomal mutations (“complex cytogenetics” they call it) that is a worse prognosis and I would consider Vidaza, because Revlimid has not been studied very much in these “complex” cases.

I can’t explain how the drugs work offhand (pretty complicated stuff about how they inhibit the bad cells from growing, but do it in different ways.) But you and your dad may want to consider the treatment plans for both drugs: Vidaza is IV so requires hospital visits; Revlimid is a tightly controlled substance because it can cause birth defects so you need to order by mail from a certain pharmacy and talk to a pharmacist phone counselor every month. Good luck!

[SusanJ]

Brenda,

Thanks for the info. I am so sorry about your dad. Did he develop all those conditions due to taking Revlimid?

[Dennis]

Just to clear up a few points about Vidaza:

1. Current route of administration is subcutaneous — that is, injection just under the skin a bit. In its clinical trials, it was used IV as well, and in fact they are trying to get approval to administer it IV in addition to Sub-Cutaneous. But at this time, it is sub cutaneous.

2. It can be administered in a non-hospital setting. I get mine at my oncologists office.

While it is a relativly easy drug for me to take, not everyone gets off so easy. They do pre-medicate you for nausea and fever (pretty common practice with any chemo drug) and it can cause injection site soreness and discoloration. Of course, everyone is different.

I know of people who do get it in a hospital setting (at the OP clinic) but for me, it’s a stop on the way home from work every day for seven week days — they don’t give it on weekends.

Now, Dacogen, the new MDS drug, is administered IV. I don’t know much about that one.

I’m one of those lucky individuals with the complex cytogenetics. Barely human, it seems. After 8 months on Vidaza, the cytogenetics had not changed, but the other factors in the biopsy had improved.

If your dad can take revlimid, it would be the easier way to start — it’s a tablet, so he would be spared 14 uncomfortable shots a month. It’s been known to give some pretty good results.

D

D

[SusanJ]

Dennis,
My dad has complex cytogenetics as well as the 5Q also. I still am not sure what all this means, except to say I am scared to death!

[Dennis]

Susan,

Take it from someone who lives with it every day — it is scary at times. But I’m not dead yet, in spite of the poor prognosis. If you go by IPP scores, and all the existing literature, I should be dead by now. But, by God’s grace, I’m not — in fact, I feel great.

There are currently 10 pages of clinical trials going on regarding MDS. The age limit on transplants is pretty much moot nowadays. They even have a vaccine in trials. So, complex cytogenetics be damned, until there is no more life, there is still hope. I have every intention of surviving this.

It is a truth of life that none of us will live forever in this world. None of us are promised any certain number of days. I think any one of us has a greater chance of death on any given day from traffic than from MDS. But for whatever time we are here, best to live it to the fullest, no matter what. That’s what I want to do. Sometimes, I fall a bit short of that — but overall, I do ok. And so will you, and so will your dad.

Don’t fear for tomorrow. Live fullest for today.

Hmmm. I think I should probably get a plaque with that on it. It couldn’t hurt.

D

[Cindy]

Susan,
I am currently trying Revlimid. In my case, I had both low platelets and low neutrophils about 14 days after taking the drug. I was taken off the drug at that time to allow time for both to return to a level where I can try a lower dose of Revlimid. My platelets have returned to a level where I can try the lower dose of Revlimid. But the neutrophils haven’t reached that point yet. I hope to be back on the drug within the next two weeks.

One starts at 10mg and after the side effects, (which are different for everyone) they go to 5mg in different configurations depending on your numbers.

Look at the Revlimid web site – It is very informative – just google Revlimid.

Cindy

[shirlsgirl]

Hey Dennis,

You have such a great outlook! I’m sure that will help you beat this!

By any chance, do you have the philadelphia chromosome? The reason why I ask is…my mom also had complex cytogenetics including half of the philadelphia chromosome. Her doctor put her on Gleevec which has worked to eliminate most of the abnormalites. Her doctor explained that one abnormality can sometimes cause others ,so if the major abnormal chromosome is removed..often the other abnormal chromosomes are also.

I’m glad you are feeling well with the vidaza! Keep up those positive thoughts!!!

And Cool plaque idea btw!!

Take care,

Jody

[shirlsgirl]

Susan,

Best of luck with your Dad. Revlimid sounds very promising. I hope it works wonders!

Cindy,

Hope your neuts. come back up soon. Best of luck to you!

Jody

[franm]

Hi Dennis:

It is me Fran. Jim had a very bad day today. He went to Del Webb Hospital and had 2 shots. One was Procit and then other was something to raise his WBC count. By the way his WBC counts is 1.3 and his Hemoglobin is 11.8, hie Hematocrit was 33.3 and his Platelets were 52. I really do not understand all this but all he wants to do is sleep. He won’t eat or drink anything.

What should I do?

Please help me.

Fran

[Dennis]

Fran,

Any chemo can tire you out. One of the shots he got today was probably neupogen or neulasta (for the WBC) and that can cause discomfort, flu-like symptoms, and bone pain. Check with your doc, but my doc has me take claritan D (brand Name stuff, not off brand) for that.

I’ll be home tomorrow evening if you need to call. Be patient with him. This is a lot to take in all at once, and a round of Vidaza is not a picnic — especially when you know another is coming.

As far as the eating, will he drink stuff like ensure? The eating will come back.

It’s going to take a couple days to recover from the round of Vidaza, and a couple rounds to bring the counts up. His hemoglobin isn’t too bad at 11.8 — I think 13 is low normal. He’ll come back.

D

[Dennis]

Jody,

Don’t know about any Philadelphia chromosome — it hasn’t been mentioned. You mean there’s an abnormality I DON’T have?

More likely, I have the New Orleans chromosome — something’s always sinking somewhere.

Here’s the numbers from the report:
42-49,XY, ?add(4)(p12), -5, -7, del(10)(p13), del(11)(p11.2), add(13)(p11.1),-15, +del(16)(?q13q22), del(17)(q24),-18, -18, -10, add(21)(p11.1), +1-8mar[cp8]/46,XY[12]

BINGO! What do I win?

D

[franm]

Hi again Dennis:

Well, Jim is in the hospital. He white counts was very low and he came down with a cold. I took him to ER and that was at 5pm…it is 10:00pm now and the Onc. wanted him to be admitted and she wants to start him on Antibiodics. I think he will be there for the rest of this week.

I am seeing my heart doc. on Friday, because the pacemaker he put in a year ago is not working and he might have to take it out and put another one in it’s place. I go into Boswell hospital on Monday the 5th.

Will let you know the outcome next week.

Fran

[Jerry]

Dennis …

The way I read that is that you are 3 over par …

Jerry

[shirlsgirl]

Hi Dennis,

Oh my goodness. You have quite a smorgasbord!!The philadelphia chromosome is t(9:22)..I wonder if Gleevec would work on other complex abnormalities?

Take care,

Jody

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