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It's been a while...


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#1 RobinAustin

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Posted 23 March 2009 - 04:42 AM

Hey everyone! I haven't posted in a LONG time. I think I was in a bit of denial and reading about how bad it has gotten for some of you just scared me. I have now completed a 6 mos course of cytoxan along with a huge dosage of prednisone along with other various meds for GERD, blah, blah .... I still managed to lose 36% of my lung function despite all the proactive treatments, so ...

I find out this afternoon whether or not I will be doing another round of stronger chemo or going on the lung transplant list. I had a bronchoscopy/lavage/biopsy last Wednesday. To say that I am no longer in denial is an understatement. I am scared to death and hope I am strong enough to handle whatever I hear this afternoon. I knew that things weren't going the way my doctors had hoped they would when my arms starting itching and burning again only a few months after my final cytoxan treatment. I was having more and more days where it felt like I was breathing through a wet rag and the pressure in my chest was becoming constant but yet I still had hope going in for the follow up PFT a few weeks ago. I had hoped the symptoms were from the meds (and subsequent weight gain) and not the scleroderma again. My pulmonologist said 20-25% would have been significant ... 36% was not good.

Wish me luck...

Robin

#2 janey

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Posted 23 March 2009 - 04:58 AM

Welcome back Robin,
It has been awhile! I'm so sorry to read about everything you are going through right now with no positive results. Cytoxan is bad enough, but then to add high doses of prednisone on top it - WOW! You would think you would be seeing something making a move in the right direction. Hopefully a lot of your symptoms right now are the meds.

Please let us know what you hear this afternoon. I'll be keeping my fingers crossed for you. And Yes Darlin' - you will be able to handle whatever life throws your way. You've fought it this long so keep going girl! Stay close to family and friends (that includes all of us here at ISN) for support. We all need it in tough times.

Lots and lots of hugs and positive thoughts sent your way,
Janey Willis
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#3 Jeannie McClelland

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Posted 23 March 2009 - 06:10 AM

Robin, I'm wishing you all the luck in the world! I'll be looking out for your next posting. Janey's right - all of us here are pulling for you.

Warmest wishes,
Jeannie McClelland
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#4 susie54

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Posted 23 March 2009 - 07:18 AM

Hi Robin,

You hang in there. This has been a rough go of it and I am sorry you are having so many lung problems. Try and find some small comforts that make you happy through all of this. I will be thinking of you. Susie54

#5 jaxs

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Posted 23 March 2009 - 08:06 AM

Hi Robin,

I too find it so hard to deal with at times. I've been dignosed 3 years in July. I have limited systemic sclorosis and am getting better trying to deal with it since reading the posts. Even tho' I find it scary, I take one day at a time. I think it helps me to read about other people's experiences - I don't feel so alone. :rolleyes:

I'm sorry to read you're not dealing with this and hope you're feeling alot better than this morning. My thoughts are with you,

Warm hugs,

jaxsxx
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#6 Amanda Thorpe

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Posted 23 March 2009 - 09:18 AM

Hello Robin

One way to help cope is to post on this forum and I am so glad you did but sorry it's not good news. I think the ability to cope is endemic in people with sclero as whatever it throws at us we keep comin' back for more! You will too because that's our nature and it's also our nature to share our experiences, however traumatic, to help others as well as ourselves.

This is the place I learn about sclero and how to live with it, I learn by reading posts like yours.

Let us know what you find out "this afternoon" so we can do our best to support you.

Take care.

Amanda
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#7 ozzy69

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Posted 23 March 2009 - 09:36 AM

Robin,

I hope everything works out with you. Good Luck!! I am sorry you are going through so much.

Lots of hugs,
Nina Lynn

#8 Peggy

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Posted 23 March 2009 - 10:10 AM

I'm glad you came back but I'm sorry you are at a worse place than you were. I have some limited lung involvement and I think I'm lucky that the Cellcept is working right now for me. I do though have a lung nodule that's 4 x 5cm that worries me and I'm anxious to see what the oncologist that I see in April thinks about it.

I so hope you get some good news and I really hope we are able to be there for you and not scare you. I have found that the information that I have gained here has been so very helpful in what I'm hit with day to day with this disease. It has provided me a place to go to and vent and also a great place to ask questions and share concerns.

Warm hugs to you,

Peggy

#9 RobinAustin

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Posted 24 March 2009 - 03:35 AM

Thank you SO much for all your kind words ... my appointment went well. The percentage of inflammatory cells has dropped from 30% to 11% which apparently is good and bad. The good news is I am not at the point where I need a transplant :o) The bad is, I think, that with such a low percentage of inflammatory cells, it reduces the efficacy of medications like cytoxin and cellcept? My pulmonologist wasn't 100% clear on what everything means so I have another appt today at 4 with my rheumatologist who will hopefully be able to explain it all a bit better. My pulmonologist is great, he's just not a scleroderma expert so he admitted he didn't want to say anything that might be completely wrong so was deferring to my rheumatologist... blah. I guess I'll know more later today :o)

#10 razz

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Posted 24 March 2009 - 07:03 AM

RobinAustin,

I'm glad to hear you're back! Thanks for letting us know how your appointment went. It's helpful for us to hear what your doctors say because it might benefit someone in the same situation. I am especially glad you don't need a transplant. That's the best news! We take the good with the bad, we'll just keep working on the bad. I'm rootin' for you to keep getting better.

I agree that I feel better myself when I'm helping someone else.

Wishing you the best luck,
Razz
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#11 debonair susie

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Posted 24 March 2009 - 09:40 AM

Hi RobinAustin,

I hope that you were able to get better information from the rheumatologist this afternoon.
We have spoken alot about how off-putting this is, when doctors can't seem to give us enough information. I still contend that because most of us are our own advocates and are already quite informed when we walk in to our doctors offices, they really have to be well-informed themselves!

Like everyone here, I will be anxiously awaiting what you were able to find out!
Special Hugs,

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#12 RobinAustin

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Posted 24 March 2009 - 01:30 PM

My rheumatologist was very upbeat about the results of the biopsy/lavage BUT, she did admit she needs to do some research before committing to any new treatment so she upped my cellcept to twice daily (1000 mg total) and I made a follow up appt for April 28th. She also gave me a referral to Dr. Maureen Mayes and if any of you are from Texas you will be familiar with her name. She is THE scleroderma specialist in this area ... hopefully, if my rheumatologist doesn't know where to go next, Dr. Mayes may ... I'll keep everyone posted ...

Thanks again for all the well wishes ... it really helped when I was overwhelmed last week.
XOXO
Robin

#13 Sweet

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Posted 25 March 2009 - 04:49 AM

Hi Robin,

I'm impressed at how thorough and careful your rheumatologist is being. Sounds like you are in GREAT hands. Wow, Maureen Mayes?? I'm impressed. I read her book all the time. I have another friend who is going to see her as well. Let us know how that goes!
Warm and gentle hugs,

Pamela
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#14 bookworm

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Posted 25 March 2009 - 07:13 PM

Hi Robin,

I am from Texas and my rheumatologist consults with Dr. Mayes, too. I also have her book on Sclero.

Hang in there. I'll bet Dr. M. can help! My thoughts will be with you.

Mary in Texas

#15 LisaBulman

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Posted 26 March 2009 - 01:37 AM

Hi Robin,
Welcome back to the forus! Boy you have been through a lot. I'm glad you came back and you can see we are all here to support you. The good news is that you clearly have doctors that are interested in treating you properly by doing their research and reffering you when necessary. It is a good sign that they are keeping close tabs on you. Please keep us updated on how you are feeling and your upcoming appointments go.

Remember we are all here to support you!

Hugs,
Lisa
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