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Lucy


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#1 Snowbird

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Posted 19 June 2008 - 08:27 AM

Hey Lucy

It's been a little while...are you up to 2 pills yet...and how are you handling it?
Sending good wishes your way!

#2 Lucy

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Posted 19 June 2008 - 10:58 AM

Hi Snowbird,
I am still sitting here at 1 pill a day. Soooo sad. Our Doctor went out of country for a week. So I talked to them yesterday about the dosage as well as my July 3rd appointment but they had no answers yet. I am hoping tomorrow I will here if I can stay in the Gleevec study or I am out due to my reaction? I am not feeling too too bad, but it is so tough to get around, but I am still grateful no internal involvement at this date - just the Pillsbury Doe Boy look.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#3 truman

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Posted 19 June 2008 - 07:45 PM

Lucy:

I'm sorry, don't know if you are ill or not from your post. Please drop a line and let us know how you are doing.

Linda
Tru

It is what it is...........

#4 Snowbird

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Posted 20 June 2008 - 10:01 AM

Hi Lucy

I'll PM you...but have you heard back today on whether or not they'll let you remain in the study?? I hope it works this time, especially since you were having a slight improvement even on 1 pill.
Sending good wishes your way!

#5 Clementine

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Posted 20 June 2008 - 10:44 AM

Oh Lucy, I hope you are feeling alright. Hey, we've all been there with the Pillsbury Dough Boy look! The people that love you and care about you love you just the way you are, cheeks and all.
Have a good weekend and smile! :)
Huge hugs!
Tangelo

#6 Lucy

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Posted 20 June 2008 - 01:02 PM

Hi Ladies,
I am doing pretty good right now - I am in the Gleevec study and took an adverse reaction to the drug and ended up in the hospital in a bad way. But I have been out for a couple of weeks and doing well. They put me back on 1 Gleevec pill a day instead of 4 hoping to build me up to 4 again, but an Ethics Committe has to approve and they still have not responded so my Docotr has me holding at 1 pill a day awaiting a reply.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#7 Gidget

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Posted 21 June 2008 - 06:36 AM

Lucy,
I hope everything works out the way you want it to. I am glad that the one pill is working without any adverse reactions. I still hate taking mine. It seems so time sensitive as to how it reacts to my body. I mean, if I take it at 8PM at night, I am in for a long night. If I take it a 6PM, I'll OK. Go Figure. Good Luck. Gidget

#8 Lucy

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Posted 21 June 2008 - 06:53 AM

Hi Gidget,
First let me tell you I love the explanations you give on this forum. My rheumatologist is Dr. Pope who is very knowledgable about SD and you say what she tells me in plain simple language. I loved the Bell Curve especially. I also have Diffused.
You have been on Gleevec since March 31st right? so that is almost 3 months. Have you seen or received any benefit? surely by now something should have started to work?
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#9 Gidget

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Posted 21 June 2008 - 10:03 AM

Hi Lucy,
You are right -- its been 3 months. A couple of weeks I would have told you that I thought my skin was softer and people told me my eyes looked wider but now when I look in the mirror, I think the sclero is just as much in my face as it was before. So, I wish I could say that the change as been extreme but I don't think it has been. But on the upside, it could be worse. I mean, if I wasn't taking the drug, maybe my hands would have curled more, my mouth shrunk more, etc. And maybe my hands are a little better-- I mean, my fingers are not as swollen. I guess I just need more time to see for sure. I think my body is re-adjusting to something -- I mean, one day I have lots of energy that I think this is great and it must be the Gleevec and then 2 days later, all I want to do is lay around the house. I'm sorry I don't have ecstatic news as I know we are all looking for something that will really truly work. But thanks for asking. In any event, I am glad I am giving this a try as who really knows. Have fun. Regards. Gidget

#10 Lucy

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Posted 24 June 2008 - 06:32 AM

Hi Gidget,
I got a phone call from my Doctor's office today - I am approved to stay on the Gleevec and to increase the dose to 2 pills every other day for 1 month. At the end of the month they will review and if I am still doing okay will increase again. So I get to stay in the study.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#11 jefa

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Posted 24 June 2008 - 09:47 PM

Hi, Lucy. I haven't added anything to these Gleevec threads but I have been reading. Just wanted to jump in and say how nice it is to see a picture of you.! Love your little friend.
Warm wishes,
Jefa

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#12 Gidget

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Posted 25 June 2008 - 06:21 AM

Lucy,
I am soo happy for you that you are still in the study and the dosage has been increase as I know that was what you wanted. I bet taking the 2nd pill will be a piece of cake as your body has already adjusted to some dosage of the drug. You also felt you had positive results even on the 1 pill. So good news all around. Have fun. Regards, Gidget

#13 Lucy

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Posted 06 July 2008 - 09:44 AM

Hi Ladies,
Sad to say that as soon as I went up to 2 pills a day my body started showing the same stress signs as the ones that landed me in the hospital.
My docotor has taken me out of the Gleevec study. I so had hoped this drug was my cure or at least stop the progression as nothing else has worked for me. I just feel like I want to give up the battle, I am so tired. Just a bad day.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#14 Gidget

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Posted 07 July 2008 - 11:25 AM

Lucy,
I am soo sorry to hear that you are out of the study as I know how much you wanted to continue on with the study. But on a separate note, the Good News is that you have a pro-active doctor. And there are new studies coming out all the time. For example, my husband keeps telling me that I should check out the Bovine study which simply put means that they inject you with some bovine cells. The body runs around and chases the bovine cells which are non-harmful to you and while your cells are running around chasing the bovine cells, they leave your good cells alone I.e no more laying down of collegen. So, even though the Gleevec study was not the right one for you, my point is that there are other studies coming out each month which might be the right choice for you. And I know that you felt you had possitive results from the Gleevec, but to me, it doesn't seem to be the wonder drug everyone hoped. So maybe in the long run, you aren't missing out on anything. I mean, I think I have been on the Gleevec about 4 months and I am still unsure if it is doing anything at all. So, the good news is that it sounds like you have a very good doctor which is half the battle and now is not the time to give up. If nothing else, just keep moving. I'm sure your doctor will have something to suggest again in the near future. I mean, the very fact that he even knew about Gleevec when the studies started means he is on top of his game as I think they had the mice results and within 4 months they started the initial Gleevec trials only in 2-3 locations. Now they are doing more studies but that wasn't the case 4-5 months ago -- so you are with the right doctor as you got right into the study. So, don't you give up -- we will all make it to the finish line. Regards, Gidget

#15 Guest_Sadie_*

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Posted 07 July 2008 - 02:33 PM

Lucy
I'm so sorry to hear that you're out of the study. Sounds like you have a good Dr. That is always good. You will be in my thoughts.
Sadie

#16 Snowbird

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Posted 08 July 2008 - 08:36 AM

Hi Lucy

I understand why you feel the way you do and I'm sorry to hear that you are not able to stay in the study as you had hoped. Gidget has some optimistic advice though, let's hope she's right and another door will open soon for you. Also, as Sadie has mentioned (and we know) you also seem to have the best doctor on your side...we'll hope she can find another solution for you to try really soon. I've PM'd you.
Sending good wishes your way!

#17 Lucy

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Posted 08 July 2008 - 11:01 AM

Thanks Gidget, Sadie and Snowbird
I appreciate the encouraging words I just find it so hard to stop feeling so down. There was a lot of hope with this drug and I wanted some of my life back. My skin score is 40 so I have very limited movement. My pride, dignity and independence seems to be lost more each day. I just wanted my life back and I now feel hopeless again.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#18 Gidget

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Posted 09 July 2008 - 04:07 PM

Lucy,
I cannot imagine a skin score of 40 as my is at about 18 -- but don't feel hopeless. If you focus on everything wrong, you will miss everything that is right. I mean, they told me 2 years ago that I had a 50% chance of being dead in 5 years. So, I am happy every day that I can get out of bed -- but that is not to say that life isn't a pain sometimes. So hang in there and have a little faith. You will be fine. Regards, Gidget