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rileysmith1's picture
rileysmith1
Posts: 4
Joined: Apr 2012

I am new to this site but am very interested in what everyone has to say.As my 16th anniversary approaches from my horrific battle with non-Hodgkin lymphoma I am looking for some answers to try and relieve my constant cough and breathing issues. At the age of 29 (1995-96)I had Stage IV type B large cell non-Hodgkin lymphoma.After 3 rounds of CHOP I experienced heart issues and they switched the next 3 rounds to ICE. By December of "95 I was in remission~very short lived, 2 months later it was back and was now extremely aggressive-the tumor was massive.After 3 rounds of very high chemo I had a stem-cell/bone marrow(autologous)transplant followed immediately with 28 doses of radiation. Absolutely overcame the odds and am still hear to talk about it but I am frustrated with having a continuous exhaustive cough and breathing issues.I have scheduled an appointment with a pulmonoligist at Beth Israel in NYC to explore a procedure they are now doing on severe ashtmatics called Brochial thermoplasty.I have no idea if this is something that could help my situation but Im excited to find out.My appointmentis April 27.Has anyone else looked into this option or have opinions on this.I know Im very lucky to still be here but would be so grateful if my quality of life improved.

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

Hello Riley and conratulations on your survival/success!
Unfortuantely I don't have much to offer you in the way of
experience/answers to your question but wanted you to know
we are listening here :).

I read a little on the Brochial Thermoplasty procedure and it
certainly looks interesting/promising. I'm sure others will
chime in soon and hopefully someone with some answers for you.

I wish you the best and please keep us updated. Good luck on your
upcoming appointment as well!

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
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miss maggie
Posts: 929
Joined: Mar 2010

Dear Riley,

I am so sorry you have to be here. Especially, after your
long and horrible battle with NHL.

I am in remission as of Jan 2011. Treated only with Rituxan. There are so many who have reached remission. To
know someday there might be consequences in the near future,
is frustrating and depressing.

I also have asthma, and yet to have symptoms. I suppose because I was only treated with Rituxan.

Riley, I did not have your DX. I certainly did not go through all you did. What I can tell you. Beth Israel is a wonderful and high rated hosptial in NYC. I live outside of NYC, suburbs of the city.

Please keep us posted and what you learned from your appointment.

Blessing and Prayers your way. Maggie

DX Sept 2009, stage 1, low grade marginal B Cell NHL. Subtype: extranodal marginal Zone B cell Lymphoma. remission Jan 2011

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

It may be beneficial for you to see a Long Term Followup Specialist at Memorial Sloan Kettering Cancer Center in NYC also. They have seen it all in terms of the side effects we survivors encounter years later as a result of out treatments.
Hope you get your answers soon,
Cathy
HD 1989
HD 1993
IDC 2007

rileysmith1's picture
rileysmith1
Posts: 4
Joined: Apr 2012

Thank you for the responses and support. My treatments were done in Syracuse NY (SUNY Health Science Center). I have to be honest I am very thankful for the wonderful care I received.I am now 46 yrs old-cancer free for 16 yrs and have been blessed to see my 3 children grow up along with my wonderful husband which at the time I dont think anyone expected me to.Yes I do believe in miracles and shear will. I work full time,do spinning class and yoga 3xs a week. Im very active but everyone knows when Im approaching because I cough so much.Spinning class is continual coughing but it is a gym Ive worked out at for years and people have been very kind about it.Im just at a point where Im exhausted from it and Im very excited to maybe have an option.
When I was diagnosed at 29 I was a married mom with 3 small children,a vegetarian, and worked out 2 hrs a day-very fit.My illness was misdiagnosed for months so when I was finally diagnosed I was a mess.Ended up in the ER in critical condition.My journey was hell but my wonderful Drs were very aggressive with the treatments as they knew after my relapse it was due or die.The reason I share that is i noticed several of you are newer survivors and I dont want you to think down the road you will necessarily experience problems.The treatments have come so far over the years.I also know they really had to beat me up because my survival rate at the time was less than 20%(and that was if they could get me in full remission before the transplant-which they couldnt)My situation was very extreme.the nice part is at this point people are always shocked to learn I went through so much-it isnt obvious except for the cough.I have never smoked a cigarette in my life but I sound like a smoker.
Cathy do you have the name of a Dr at Memorial Sloan Kettering Cancer Center-it is only a 5 hr drive for me to the city and my oldest son lives and works in Manhattan so its no big deal to go there.I have been blessed beyond words but am looking for any quality of life suggestions.I appreciate your responses~ Ellen Riley-Smith

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

I see Kevin Oeffinger, MD at the Adult Long Term Follow up Program in MSKCC. I'm sure any one of the physician's there would be wonderful as Dr O is the director. When I was there for a check up, he was seeing a patient who flew in from the west coast as the patient needed a doc familiar with their unique side effects from treatment for a rare cancer.
When I needed to see specialists and get 2nd opinions for my second cancer, it was comforting have Dr O. He was able to use his resources and knowledge to get me to the best. Also, for my cardiac followups, a cardiologist who has studied radiation effects of the heart is in the room with me while I'm on the treadmill. So I'm sure the pulmonologist at Sloan have seen many patients, maybe many similiar to you, with chemo and/or radiation induced complications. Finally, seeking a second opinion may reaffirm that you were led to a good doctor at Beth Israel. In any event, have Dr O on my team has taken away a lot of the worry for me.
Best wishes, please keep us posted.
Cathy

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