Update on Revlimid (good)

[Lori]

Last time I posted (May 1) I never thought I would be saying this 24 days later but my Mom has had unbelievable results with Revlimid (not 5q, MDS-RAEB diagnosed 9/o2). Her counts at that time had dropped to plt 5, hgb 6.5, wbc 0.6. This week her counts were plt 45, hgb 12.5, wbc 1.9. I can’t explain it. She looked and did pretty bad the first 4 weeks on it with bruising, extreme weakness, depression, leg aches, itching to the point of bruisig from scratching so much. Now, she looks unbelievable, out and about all day, no transfusions in a few weeks and even planning a possible trip for the summer of ’07. (might be jumping the gun but whatever makes her happy). A few tips to help while taking revlimid. Scalp itching – use Seabreeze (an astringent found in drugstore), tiredness and feeling blah – take med at bedtime instead of am, leg aches – take tylenol with revlimid, itchy eyes – visine natural tears all day and drink lots of fluids – this med will dry you up. I hope that helps someone and I will keep all of you in my prayers. We’ll be riding this wave as long as it will let us.
Lori

[stacey]

Lori,

That is wonderful news about your mom!! I am very happy revlimid has been working so well for her. FYI – I also found a product that worked great for the scalp itch over the counter called scalpicin, as I had that same side effect from the revlimid about 2 years ago. I hope your mom continues to have great health!
-Stacey

[shirlsgirl]

Yay!!! That’s awesome Lori! So glad to read that your mom is doing so well with Revlimid. Her story will give others who are struggling at the beginning of treatment some hope for better days ahead. Wishing continued success!

Jody

[franm]

Hi Lori:

When did your mom start taking Revlimid. My husband Jim just started vidaza and he took it for 7 days, last day was Wednesday but he still aches all over and is very tired all the time. Does the tired wear off or does he have that feeling all the time.

We wanted to plan a trip but the way he feels now it is inpossible to plan anything…even going out for my birthday and our anniversary which is tomorrow and Monday.

He hasn’ taken any blood transfusion yet.

Any ideas would help.

Fran

wish your mom the best of luck and health

[lucym]

Hi Lori,
Awesome news about your Mom, sounds like she is really enjoying her life. Can you tell me did your Mom have any Chromosome abonor. when she was diagnosed? I know she does not have 5q. But does she have any others? My Mom is 23 days into her chemo and numbers are not going up. Today results showed 7% blasts in the blood. Originally when she started they were 26% in the blood and chemo brought them down to 2-3% over the last few weeks but today we were at 7% and I am very very nervous we are not going to get into remission. I don’t think the revelmid will be an option because her WBC .3 and Plt 9. trying to get some more information because my Mom does not have 5q either.
Thanks……and God Bless you and your Mom.
Lucy

[Lydia]

Great news Lori. Gives all us hope.

Mom was going to start Revlimid, but it costs $2000 a month and her insurance doesn’t cover it. Like someone mentioned previously – I guess the drug companies decide who lives and dies.

Will see if we can aid from somewhere. Does your mom’s insurance cover it?

[Lori]

Thanks everyone!

Fran – my mom started the Revlimid about six weeks ago and like I said she felt and looked really bad for about 3-4 weeks. When her doctor had her start taking the revlimid at night, that really seemed to help (also, she is 82y/o but wants to feel 65). She has had about 20 blood transfusions in the past and her iron count was starting to climb -biggest concern – but they have come out with a pill now to help remove the iron (instead of the horrible infusion they did in the past) so her doctor wasn’t quite so concerned when the transfusions started coming so frequently. We always had her get a transfusion before a trip and it made a huge difference. My mom has never taken Vidaza so I don’t know much about its side effects. Good luck and I will pray for you & your husband.

Lucy – my mom has no chromosome abnormalities so we are really surprised that this is working but she has a sister who is a nun plus my mom is an angel so I think she has earned some brownie points. My moms wbc was 0.9, plt 10 and hgb 6.5 when she started Revlimid. Everything dropped more with the Revlimed. We watched her very, very closely. We were at the doctors at least once a week and at hospital getting blood &/or platelets everyweek for 4 weeks (a short time period but it was horribly stressful) She lives alone and we checked on her at least 2 times a day, got her an emergency alert system for her at home and prayed, prayed, prayed. Good luck & I will keep you and your mom in my prayers.

Lydia,
My moms insurance covers the Revlimid, she only pays $40/month. Before she started it and before we knew if it was covered, her doctors office had her fill a ton of papers out to apply for some sort of assistance from Celgene (makes Revlimid) but then she didn’t need assistance. Ask the doctors office or contact Celgene – believe me, these pharmaceutical companies want people taking this drug. The best results are with people with multiple myeloma but they would love to have success with MDS. I will keep you and your Mom in my prayers, too.

Now, if anyone knows how long this drug will work – I don’t want to know so please don’t tell me. Thanks for all of your support.
Lori

[Naomi]

Hi Lori:
If your mom starts to take exjade for iron chelation, make sure she watches very closely. I have been on revlimid for 2 1/2 yrs. Last tx 12/03.
My ferritin was at 5,000. I was doing phlebotomy to lower it, but my port started acting up and would not give back, it was removed and I started exjade. It is the most horrible stuff I have ever taken and I shuddered every day before and after I took it. (mentioned this to the cancer center drug coordinator and she said that other people said the same thing) Within 20 minutes after taking it, it caused such diarrhea and it continued all day and night after that. I was changing clothes and bed sheets several times a day (too much laundery) as I had NO control over it. I also came up with a siege of c-diff that didn’t make it any better. Cleared up the c-diff and still have the diarrhea but can control it with loperamide so far.
I hope your mom has much better luck with the exzjade, but just watch her closely. As we all say, one drug effects different people different ways.
Good Luck
Naomi

[Lori]

Thanks Naomi –
She hasn’t ever had to take the exjade because her iron levels have not hit the “cut off point” Hopefully, if she doesn’t get an transfusions for a while (hgb currently 12.5) then maybe we can avoid any other drugs. I am so sorry you had to go through a bout of C. Diff – that stuff is nasty. Take care and thanks for the good info.
Lori

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