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Long term side effects

GreenTeaTree
Posts: 1
Joined: Feb 2019

Hello!  18 years ago I was diagnosed with and underwent treatment for Hodgkins Disease (chemo and radiation).  I am so honored to be a survivor!  Now, almost 20 years later I am having some major health issues and the more research I do, I seem to find that there are some long-term side effects to having had cancer treatments.  I am wondering if anyone else has experienced long-term effects and what they are and how you are treating them.  I guess I was young and naive and thought that once I was in the clear, it was for good, unless another cancer popped up!  For me, I'm noticing that I am aging faster, something I'd read was possible.  I've also developed some really awful gut issues that no dr. has been able to help me out with - yet...  I appreciate anyone's willingness to share.  Sometimes I feel so alone in all of this - no one understands or seems to believe me, think I'm just passing it off as an excuse, which isn't my intention at all!  I'd love to hear from others!  Thanks!

KASLAS
Posts: 3
Joined: May 2019

Hello-

I am new to CNS. I am 6 years post treatment for Thyroid Cancer.  The long term side effects for me are...NO Speech, Swallowing Difficulty, and even Breathing Issues.

I see alot of posts for people currently going through treatment but that is not where I am at.  Please conctact me if you are interested in sharing.  Thanks!!

dareinc1
Posts: 1
Joined: May 2019

41 years since radiated for hodgkins as a teenager and the pain is inevitable and so is stomach issues and some usual stuff like tiredness, weakness etc but nothing that a good thought can fix. I used to think taking pills to fix the ailments was the answer but as we well know that only brings about other problems and more pain so I researched medical journals and read books to live with my pain and limitations without meds to fix things. Hodgkins survivors often have heart, hormone and thyroid issues late in life so keep an eye on things. I also have what they call "dropped head syndrome" my neck and upper back muscles have atrophied from radiation so I can no longer hold my head up throughout the day without holding it with my hands or resting . Despite the pain and often anger and sadness I have learned to move on and live with the baggage of  my survivor mental and physical scars. There are books out there for positive ways to live as a survivor just keep an eye out for the potential problems from the long-term affects of the cancer treatment. 

jaceliz
Posts: 3
Joined: Mar 2006

Hello everyone,

I'm a 46 year survivor of ALL.  I was diagnosed in 1973 and was part of a clinical trial in Richmond VA (Medical College of Virginia).  I had 5 years of chemotherapy only.  I'm not complaining but I am wondering if any of my health issues stem from the chemo I received.  None of the issues I've had are major and may just be the effects of aging or coincidence.  Depression (which runs in my family anyway), anxiety, a benign tumor when pregnant with my second child, underactive thyroid, bowel obstruction that turned out to be a mass of tissue constricting my small bowel, and just general feeling of fatigue and aches and pains in my back and knees, along with swelling in my fingers and feet. 

I dropped out of the study I was in at the age of 19 (dumb, I know).  So, I have no idea of what my expectations should be as far as my health.  My current doctor only tells me "just be happy you made it, live your life".  Which I have done but there's always that nagging question...is my heart going to be ok? is that ache due to my treatment, etc.

Tethys41's picture
Tethys41
Posts: 1372
Joined: Sep 2010

Sorry about your symptoms, Jaceliz.  I am a 10 year survivor of ovarian cancer, over 9 years NED.  My naturopath realized, shortly after I completed treatment, that I have Hashimoto's, autoimmunity of the thyroid.  We started treating that and my pains disappeared.  Over the years, I've learned that certain foods trigger my moods and pain, which is most likely linked to my autoimmunity.  I experienced depression a few times prior to diagnosis, but after changing my diet after treatment, I really don't go that way anymore.  Most doctors don't understand Hashimoto's or how to test for it or treat it.  But functional medicine doctors and naturopaths do a good job with it.  Good luck.

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

Hi, I am a 30 year survivor of NHL having had only one recurrence early after diagnosis and nothing after except for side effect issues that have become a long list.  Right now I am having to have cataract surgery on both eyes they say from the radiation that was diagnosed many years back but other more important side effects like heart issues kept pushing cataract surgery to the bottom of my medical priority lists.  I am hearing about issues with surgeries on people who have had a lot of radiation treatment and heavy chemo drugs like those in transplants for one group of them, and I am not sure whether to go ahead with the cataract surgery or just basically go blind I guess.  The issues seem to be that some people who have a medical diagnosis of corneal neuralgia, whatever that is, and didn't realize they had that disease who went ahead with Lasix surgery developed chronic eye pain that drove them into disability.  They were never told anything about it they said.  Also I have heard there are connective tissue issues that might prove a problem if they start digging into th eyes for other eye surgeries.  I am getting second opinions and going back to my transplant surgeon soon to ask the question if my cataract surgery is safe for me plus a neurologist I have plus GP and of course eye surgeon too.  I am still floored though by other specialties who still aren't up to date on us old time survivors and what we can expect.  Sheeesh.  Anywho suffice is to say that it continues to be soooooooooooo important that we must hep ourselves and believe in our gut instincts and then press our physicians to make sure that all possible tests are done before we are subjected to even what seems to be simple surgery for most people, like cataract surgery.  With all the radiation and chemo we have received we are anything but simple. Keep on pressing if you have gut feelings something isn't right.  Its your body, you know it best.

 

I am asking in this post if anyone else has faced this surger;y late in the survivor stages and how it all played out for you.  I went to another specialist a few years back for a then recurring bowel issue and she flatly refused to operate on me because she said the condition of my tissues would make it highly dangerous and create more problems than it was worth.  After you hear something like that turst me you really question any surgery any doctor wants to do you.  Not sure whether to go ahead with this 'simple' catarct surgery or not.  I am 69 now and have multiple debilitating side effects of treatments, pacemaker, in a wheelchair now for major mobility issues, blah blah blah so going blind, hmm, sometimes you have to make the tough decisions.  I can't think of anything worse right now than another area of chronic pain in this old body, thats for sure.  Apparently the eye pain from the cataracdt surgery if you have prior eye problems with corneas etc is not something to be taken lightly.  Just wondered if anyone has any advice on this.  Take good care all.

 

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