Revilmid is Good News for Me

[Naomi]

Hi to all:
Yesterday I went to Strong Hosp to see my hemo doc and he gave me some very good news. The revlimid has put me into remission. I still have low white, red and platelet counts, but my 5q- is gone. My diagnosis is still refractory anemia with normocellular marrow. Dr Ifthie is very pleased with my results. I will keep taking the revlimid after the trial (4 more months) is over as long as I continue to do well . Prayers and revlimid have worked wonders.

People have asked me where I have gotten my tan, but do not have one…just some blood thru my system to bring back color.

I have a lot more energy and am able to do things I hadn’t done in a long time. I even feel like doing them.

I also just returned from my daughter’s in Rhode Island. I have new twin baby granddaughters. They are identical and just as sweet as can be. It is too bad that I live this far away from them.

There is hope that we will beat this disease as we keep on trying. I am glad that I have participated in trials and that this one has worked for me. I feel it is a case “if you don’t try, you never know”. I know that not everyone feels this way, but I surely do.

I am also doing phlebomoty to reduce the ferritin and it has lowered to 2985. In Jan 05 it was up to 4950. I go in every two weeks and have had no adverse effects.
Good Luck to all
Naomi

[geebeebee]

Very good news, Naomi! Enjoy yourself,

Greg

[shirlsgirl]

That’s great Naomi!! Glad everything is going so well. Congratulations on your new grandaughters!

Take care,

Jody

[Suzanne]

Naomi, What wonderful news! And aren’t grandchildren great! I am so glad you are doing well and I think your thoughts on “trials” are right on. I know I am glad I tried the Zarnestra even tho I will probably never know whether it made any difference or whether I would have stayed in remission without it. I know both of us are just glad to be here to enjoy the grandchildren, the sunshine and the rain!And I am so glad you feel more like doing those things you like to do. Keep it going. my 5Q- is also gone and my counts are almost normal. Dance in the kitchen with me lady!

[Terri]

Naomi it is so good to hear Positive results, keep it up, continued prayers

[KATHY1]

Naomi, I’m so happy for you. I can feel your excitement in your writing. Congratulations on your new granddaughters. Wishing you continued success with your treatments.

Kathy

[sarah]

Naomi, wonderful news. So glad you are doing well. Congratulations on the twin granddaughters. You are twice blessed. Keep us updated on your progress.
God Bless,
Sarah

[Carl]

Naomi,

What a great report on the 5q- disappearing! The Revlimid (and prayers) worked miracles. I am anxiously waiting for the FDA to approve it for general use so I can give it a try.

[helenr]

Naomi

Marvellous news. Whenever we get down I remind David of your progress and we wait in hope for Revlimid to be marketed. The proposed trial in Europe and Aus keeps being postponed and I hope that is a sign that it may be approved soon. Our Doc suggested starting thalidomide but that would prevent acceptance for a trial of Revlimid. At least the desferal is bearable at present. We say that when the Revlimid works for us we are buying airline tickets to visit our son in Wales. You can only live in hope. thanks for your happy news.

Helenr

[Jimbob]

Naomi,
Hoping and praying that this bit of good news is just the beginning for you.
Granchildren are great! I have 3 and really enjoy having them over BUT it is too easy to get overtired with them around because they are so muvh fun.
Jim

[KP2112]

Naomi,

Can I ask where you came across a trial for this? I would be very interested as it is something that my father could do as he has the 5q deletion.

Kind regards,
Karen

[Naomi]

Karen:
I have been a patient at Strong Hosp in Rochester, NY since 3/2001. I have participated in several trials and this is the first one to work for me. I started it 11/2003, but had to lower the dose because of hives. I stayed on the lower dose (5 mg) and went into remission in 4/2004. Sept I came out of remission and was rechecked in Jan 05. Raised the dose to 10mg and am now in remission again. I have 4 more months to go on this trial. This being a long term (24 months or cycles) is one of the longer trials I have found.
Maybe when revlimid is approved, you can come over to Rochester and get some. You may have it prior to the US getting approval.
Hope this has helped and that your father will be able to get it soon.
Naomi

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