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Biomarker for Diffuse Scleroderma skin has been discovered!


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Having Radiation treatment with Scleroderma and PAH

radiation chemotherapy

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#1 Penelope

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Posted 01 December 2012 - 08:04 AM

I have been diagnosed with an aggressive lung cancer for which I have already had 2 rounds of chemotherapy. It has shrunk significantly and now they want to add radiation in conjunction with the last 2 rounds of chemo. The radiation oncologist is worried about the increase in side effects of radiation due to scleroderma. She says there isn't a lot of information written about the subject. Can anyone give me anything?? I fully intend to have the radiation because I have to get rid of the cancer but I do want to know other survivor stories.

Thank you for your help.

#2 Joelf

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Posted 01 December 2012 - 11:05 AM

Hi Penelope,

It's lovely to hear from you again, but I'm so sorry that it's because you have had to have treatment for lung cancer.

I've included a link from our medical page about Radiation and Scleroderma which I hope you'll find helpful and informative. You could perhaps print this page off to give to your radiation oncologist. I've also included a link on Lung cancer and Scleroderma.

Although I'm unable to give you any first hand information, it's quite possible that we will have other members who will be able to help you further with your enquiry.

Please do update us with news of your treatment and let us know how you're faring.

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#3 Penelope

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Posted 01 December 2012 - 05:57 PM

Thanks so much - yes, it has been a while - after the initial diagnosis you want to read and learn everything and then you go on and get on with life. Your info was great and I will share it with my doctor. It supports the way I feel, too. I have survived everything else. I remain grateful for a life full of love and support, headed up by infinite grace and love. I know I will survive radiation and be able to help others who seek peace and resolution. A life without fear is one fully experienced - trials and all. Have a wonderful weekend and thank you for all you do to help us as we travel this journey!

Penny

#4 Shelley Ensz

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Posted 02 December 2012 - 10:59 AM

Hi Penny,

I am very sorry that you have aggressive lung cancer, on top of scleroderma. I just want to reach out and give you a great big warm hug. You are setting a great example for all of us with your faith and pluck.

Oh dear me, I just read up on dictionary definitions of pluck! I am not referring to an alternate definition of pluck as, "The heart, liver, lungs, and trachea of a slaughtered animal especially as an item of food". Oh gross!

I am referring to a less commonly used definition of it, which according to Mirriam-Webster is, "Courageous readiness to fight or continue against odds: dogged resolution."

It means a lot that you are facing this head on after reading and learning everything you could about the illness. That is entirely different from sticking your head in the sand and relying only on blind faith. To still have faith and an uplifting attitude with your eyes wide open, that is pure old fashioned pluck, of the sort that makes people willing to stand in a long line in hopes of being your friend.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Penelope

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Posted 03 December 2012 - 07:45 PM

What an awesome post Shelley!! Thanks so much - just seeing this before bed but will write again - I like the definition!! :)

#6 Shelley Ensz

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Posted 11 December 2012 - 05:10 PM

Thanks, Penelope. :emoticons-thankyou:
:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.