So I've finished my rounds of chemotherapy and 17 treatments of radiation therapy. I'm now in the 6-8 week waiting period before I can have my evaluation PET scan that will determine whether I'm in remission or not.
I got through radiation fairly smoothly - my skin was burned and sensitive, but is slowly healing. The day after my radiation therapy was complete, I had incredible pain (like a solid 9 on the pain scale) when I tried to eat anything, and couldn't tolerate anything that wasn't room temperature. I was taking carafate, as well as liquid vicoden and a pain patch called fentanyl. I wasn't on any of these except the carafate for very long. The pain began April 18 (the day after my treatment concluded), and faded away almost abruptly on April 24. I know this pain came from esophagitis.
My problem is that on the same day that the pain finally went away, I found I was having difficulty breathing. I am unable to take a full, deep breath. When I inhale, I can take in about a normal breath's worth of air, and then my throat closes. I can feel that my lungs can take more air, but my throat refuses to let more air through. This has gotten worse, not better, over time, and now I also have an unproductive cough.
I had a chest x-ray done, and it was clear of scarring. Has anyone else encountered a problem like this? I have never had asthma, and I'm just mystified. After so many months of treatment, and so many ups and downs, the thought of living the rest of my life (I'm 26) unable to take a deep breath, and with a chronic cough, just makes me cringe. I'm not getting any conclusive answers from doctors...
Hi Stratafied: I am sorry cannot give you any input since I haven't had radiation yet but I want to ask you some questions so I'll PM you... Hope you feel better soon.
I got breathing trouble after the radio, but it began with a really nasty chest infection. I also got oesophogitis. I take Omeprazole and spell it the English way and it's under control.
My doctor told me I had pulmonary fibrosis. It isn't easily treated, and my breathing was still better than the level at which he would intervene. It felt terrible at first, but he told me I would adapt quickly. And I did. I was never really an athlete but it doesn't stop me doing anything.
I hope your problem isn't the same. If it is, it is not the end of the world.
My husband had a very similar occurrence after the radiation. The onc said it was pneumonitis(not sure of the spelling) caused by the radiation and treated with steroids , usually prednisone. He said it is common and if treated, usually not permanent. I would check in with your Doc, though.
I have the same problem. I finally went to Mayo Clinic in Rochester and they discovered Trachealmalacia. Don't know how common it is but radiation does do this. Also you can get fibrosis from the radiation (scar tissue) this leaves you more susceptible to infections.....so I would refer you back to your MD. Good Luck!
The last breathing trouble I had was diagnosed after a CT scan as bronchiectasis. It responded to a steroid spray, but is not good news for the longer term. Still, if I hadn't had the radiotherapy ... Get any breathing troubles that don't clear up in a few days looked at.
Breathing problems are a normal side effect after radiation. Some people recover from it rather quickly while other have a longer duration from it. So, it is "normal" in Hodge land. If it gets to be too much, or too uncomfortable, I would call your doc and see if there's anything they can do to help you.
heyyyy. Breathing troubles don't just come from radiation. I had 6 cycles of ABVD and my breathing is VERY different. I have shallow breathing and get out of breath very easily. If you had ABVD... then you should know the toxicity off "B" Bleomyicin. It's known to damage the lungs. A lot of people don't know but Lance Armstrong was ordered to have it, but declined it because he wouldn't ever be able to bike the way he used to, because of it's damaging effects to the lungs. My doctor says it's normal, so just ask your doctor.
I guess I would never say side effects are normal...they can be an expected iutcome of the treatment. And the side effects can affect you a lifetime! I am living proof of what radiation can do at an early age. BUT I am still here too!
Like you, I got the fibrosis, and that seems to be the foundation for a lot of other lung problems. I remain upbeat, and think that whatever happens, I got rid of the Hodgkins. Each episode of trouble seems to take longer than the last to get sorted, and leaves me maybe a half-notch lower down than before.
I still, however, fully expect to live to at least 120, if only to get full value from my pension. If, at that age, I am shot from behind without warning, by an enraged husband, my life will be complete. If it works out differently, well, it was still pretty good.
I agree, love the humor. At this point there's nothing we can do to change it other than stay away from crowds, wash our hands and eat healthy! Take Care...