Started Revlimid – Good results

[stacey]

Alex,

There was a thread a short while back that can give you a few perspectives about the counts. Click the search button and then search on the words “Just started Revlimid”. You’ll see a topic started 3/07/06 (titled “Just started Revlimid in February”) that might be of some help.
-Stacey

[Kirby]

Hi all,
My great response to Revlimid continues. After 4 months on Revlimid a BMB revealed blasts at <2%, down from 4.5% on 12/6/06. Fewer dysplastic cells were seen. My counts are above or near normal, Hgb=14. Platelets a little low at 110.

In 6th month on Revlimid at 10 mg/day. Side effects are negligible. I’m not -5q so my response is very good. I feel great.

I’m shooting for a long run on Revlimid.

[eve]

so glad to hear that revlimid is continuing to work for you

eve

[Russ P.]

Kirby,
It is great that some things work, PTL.
May good things keep up for you.
Russ

[AlexD]

Hey everyone,

I’m glad to see it’s doing something. My retic has been up, hovering at about .5, or there abouts. I even had one of 7.2, which must have been a fluke, although the lab did double-check it.

I did have to recently stop taking it, well about a week ago, due to some nasty side-effects that may, or may not, have actually been caused by the Revlimid. Insomnia, nausea, rash, etc..

I was wondering though, has anyone else noticed serious sleeping issues with the Revlimid? I haven’t slept a wink since starting it, and, well, it really wears me down.

Well anyway, time for another doctor’s appointment in the morning.

-Alex

[Kirby]

Hi AlexD and all,
Alex, I had trouble sleeping with Revlimid after stopping thalidomide. Thalidomide makes one sleep like a baby while Revlimid doesn’t seem to do so. I’ve been taking one Tylenol PM at bedtime, about an hour after taking the 10 mg of Revlimid. Sometimes I feel itchy and I add a benedryll at the same time. This seems to help me fall asleep.

Hope you can continue to improve.

[Frankie]

My understanding is that Tylenol PM already has Benadryl in it

[helenr]

We were advised to take revlimid in the morning to prevent sleep disturbances.

[choijk]

Thank you all for sharing your experiences with Revlimid. My father just started on Wed, Sept 19th at 10 mg. I’ve checked all the past posts regarding itching of the scalp. He is just about to get over his shingles, and now the scalp itching is driving him insane. He keeps scratching it, to the point that his scalp is red.

I’ve emailed our hema but it’s the weekend and by the time he’ll get back to me, it’ll be Monday! In the interim, my dad is just going to ballistic over his itchy scalp.

I just gave him some benadryl after reading the posts. I will also go and check out some of the other things other patients/peers have suggested that has worked for them.

I’m afraid to give my father Tyelnol PM because doesn’t Tyelnol affect the liver? (I had an ulcer two years ago and that’s what my general medicine doc said. He said to take an advil instead of Tyelnol). My dad’s ferritin is climbing and he’s on Exjade. I don’t want to give him any more medicine that he needs.

Does anyone else have any suggestions as to the itchy scalp? I’m thinking about buying some anti-itching lotion and just applying it to his scalp.

Thank you! All suggestions are welcome!

[Frankie]

I used a dandruff shampoo when I had the itchy scalp.

Tylenol is the only thing my doctor will let me have instead of Advil or any ibuprofen or acetaminophen because they could thin the blood.

Frankie

[stacey]

You might have already seen this in the past posts, but just in case you hadn’t, I would recommend scalpicin for the scalp itch. It is an over the counter product made for scalp itch that you just apply directly. I thought it worked well, and I was also going a bit crazy from the scalp itch, so I know how your dad feels! FYI – That side effect lasted about 1-2 weeks for me and then went away. Hope that helps.

And (for Alex)– I also had problems sleeping when I was taking revlimid at night and had to switch to only taking it in the morning as well.

-Stacey

[choijk]

Thanks Frankie and Stacey for your posts! I’ve read your posts and I actually wrote down the Scalpicin and the Seabreeze down. I didn’t get a chance to go today but I will tomorrow.
One question though, how long did Revlimid work for you? Or is it still working?

My father has no chromosome abnormailties but since he is considered a low risk mds patient, Vidaza may be a lil harsh. We are hoping for a good response with Revlimid. I don’t konw if this is true, but from the past posts I’ve read, it seems as though for Revlmid has worked for those patients who experienced itchy scalp?

[JoyceDee]

My husband’s oncologist wants him to start on Exjade. I have been reading a lot about it and am concerned…particularly because he has only one kidney. He is 82 years old and was doing very well until last February. Procrit did not work to produce rbc’s and has been discontinued. He has had 8 blood transfusions and an infusion of deseral during the last one.
I’m glad we found this site, and appreciate all your comments and information. We will continue to watch for more.

[Frankie]

oops…I made a mistake….doctor said no ibuprofen or aspirin.

Frankie

[choijk]

Today, my father is experiencing diahrrea with the Revlimid. Not too worried, I know that is one of the symptoms but I guess he noticed red blood. I want to take him to the hospital but hes really angry saying that he’s okay. Has anyone experienced this?

[Author]

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