radiation treatments

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New Member

Date Joined Aug 2011
Total Posts : 2
   Posted 8/8/2011 3:41 PM (GMT -6)   
I’m eagerly seeking anyone who underwent radiation treatments for Hodgkin’s Disease or another cancer and who now suffers any of the following:

- lightheadedness
- chronic fatigue syndrome
- orthostatic intolerance
- dysautonomia
- neurally mediated hypotension
- myalgic encephalomyelitis

I went through radiation treatments for Hodgkin’s some years ago. Two years later, I started suffering bouts of severe lightheadedness and fatigue. There may be a connection. Here’s an article suggesting that radiation treatments can damage sensors involved in the regulation of blood pressure: http://jp.physoc.org/content/553/1/3.full.pdf. I seek others who share my condition so that we might benefit from one another’s experience and collaborate in pursuit of effective treatment.  Email address taken out.  Please put it on your profile page so members can click on that icon under your name.

Post Edited By Moderator (LanieG) : 8/8/2011 8:16:10 PM (GMT-6)

Elite Member

Date Joined Oct 2008
Total Posts : 25380
   Posted 8/16/2011 9:57 PM (GMT -6)   
I usually post only in the Prostate Cancer group. I underwent "old school" neck/throat radiation in 2000, after my 3rd bout of an ultra rare cancer, porocarcinoma. That radiation was brutal, and left me with permanent fatigue. Needed nearly a year in oncology rehab to deal with it at the time. It was 34 rounds of radiation totallying 35 gys.

I was dx. with prostate cancer in 2008. Under went surgery, it failed to stop the cancer. Late in 2009, underwent 39 rounds of IMRT radiation, 72 gys as a salvage treatment. It left me with chronic fatigue. Have been in oncology rehab since late 2010.  On top of that, the radiation has also failed to slow down the cancer, so now I have advanced prostate cancer with no chance of a cure.

My oncologist feels the cumlative effect of so much radiation did a lot of damage. I have been unable to work, and as the result of well documented chronic fatigue, finally got SS Disability approved as of June of this year.

I deal with this every day of my life, I have about 4-5 hours of useful time a time, usually in the morning, then I hit a severe wall of fatigue, and from that point in the day, its all downhill.

Wish you luck in your situation.

David in SC

New Member

Date Joined Sep 2011
Total Posts : 2
   Posted 9/22/2011 7:03 PM (GMT -6)   
Greeting, found your post. I'm a 18yr Hodgkins survivor with 38 days radiation to upper mantle. Recently been diagnosed with Disautonomia. First they thought it was vasal then went to NY and was told it is POTS. Posterior Orthostatic Tachicardia. What a mess... Lets talk...

New Member

Date Joined Oct 2011
Total Posts : 5
   Posted 10/2/2011 9:48 PM (GMT -6)   
I was treated for Hodgkin's disease back in 1984. I received 45 radiation treatments to the neck and chest, and had a splenectomy. I started having problems almost immediately, but the chronic Orthostatic difficulties (Pots) and chronic neck and right shoulder pain didn't get that way for several years later.
I am on kinds of medication for pain and to control POTS symptoms, now, but due to my age and constantly getting sick, I am very weak most of the time and had my first serious syncope episode that kept me unconscious but jerking for a full ten minutes. rolleyes Needless to say, life has been difficult, for I have had many, many episodes of jerking and falling down, but this recent episode was the first time I ever lost consciousness completely. In fact, that entire day is still fuzzy in my mind. This is just a small slice of my life's medical history. If I shared everything, since I was first diagnosed with Hodgkin's, it would take a book to share it all. The worse part is having strange symptoms and not knowing what is going on, or being prepared in the slightest for most of them. People that are being treated for cancer should also be prepared for future unexpected symptoms that will drastically interfere with their lives. Thanks for bringing up the subject. Angie425

New Member

Date Joined Oct 2011
Total Posts : 5
   Posted 10/3/2011 1:31 PM (GMT -6)   
Francine, you are lucky to have someone tell you that you have POTS! I have had the symptoms which started about 5 years after my Hodgkins, but have only been told that I have Orthostatic BP and tachycardia, recently. I was put on Bisopropolol, but the symptoms are coming back with a vengeance. What medication are you on? I was also told I had fibromyalgia and had a splenectomy. How about you? Angie425

New Member

Date Joined Sep 2011
Total Posts : 2
   Posted 10/3/2011 7:50 PM (GMT -6)   
Sorry to hear about all the years of "stuff". The doctors think its in our heads but its not, its in our broken down, radiated poisoned bodies.
Here's how I feel: You do your research on whats flaring up..example POTS...then you find one of the best doctors who treat what you think you may have or been diagnosed with. If they are out of state, then you call the American Cancer society 800-amc,2345 and you ask for the number to the Corporate Angel Network and they will fly you for free to that doctor.

Most important...you do not give up and loss your spirit...I'm not saying I'm perfect but when we stress out or feel depressed our bodies give off chemicals that cause us to get sicker...

it becomes a vicious circle of medical issues..something breaks- you get meds, the meds break something else in your body...over and over and over it goes...always sick with something...

Went to an old doctor at Sloan Kettering New York...He was in his 80's and said the follow: Francine, live your life and stop going to the doctors, they will always find something wrong with you... stop take tests....LIVE!!!

As far as my POTS, here is what I do: Original mix was: Midodrine 3 times a day, Toporol (beta blocker) 2 times a day, Zoloft to stay evened out, salt pill to stay hydrated, Abien to sleep. Floricef 3 times a day.

This was too much for me: I did my research; as long as your stay hydrated your symptoms will not be as sever. You must drink 124oz of water a day. Drink Gatorade as soon as you don't get enough water or starting to feel symptoms.
-A few deep breaths three times a day
-tighten your muscles from your butt down to your feet, hold for 5 seconds and release. (this will cause better oxygen and blood flow-when you can or why feeling bad.
-put salt on everything, sea salt. This will keep the fluid in your body naturally that you need.
-take a multi vitamin. Whatever your body doesn't use, it will come out.
-B12 deficient causes a lot of the symptoms, check your b12 (blood-work). Once leveled out, less pain and more energy.
-Vitamin D- same as B12.

Meds taking now by my own only two: Midodrine 2.5mg per day and Toporol 1 time a day.
-I went off all the other meds on my own and I feel so much better, I was in the same position, stayed in bed most of the time miserable, weak and sick.

-start documenting what your doing, what your eating & drinking. You will start to see what causes you to have more symptoms. These are the triggers, avoiding the triggers avoids the episodes. See what works, see what doesn't.
-You are your own "lab rat". This was one year ago ...

TODAY: I work full time, I am on the Chairperson for "relay for Life" and I am starting to exercise lightly.
I have minor symptoms sometimes but I am "my own lab rat" and know what not to do. I live with my condition and LIVE my life again!!! We are never going to be perfect however, we can be the best we can be emotionally and spiritually to keep going!

I am here if you want to chat and work on these things in more detail, e-mail me directly at francine@tampabay.rr.com. I'll be happy to help you... Hang in there!! Your a warrior!!!!!

New Member

Date Joined Oct 2011
Total Posts : 5
   Posted 10/3/2011 9:11 PM (GMT -6)   
Thanks for all the information, I will write you soon. For many years, I tried everything from acupuncture, chiropractic, joining a gym to use weights to build strength, and doing speed walking to try and keep my weight down. Having my spleen removed, though, seemed to be my downfall, for I just kept getting sick and where before I could get over a cold in just a few days at most, now I always ended up very sick and often what was a cold would turn into a serious sinus infection that would keep me down for as long as a month. This is still the problem that prevents me from working, not to mention chronic pain that is a separate issue.
I will soon write to you personally.
27 years Post Hodgkin's
Chronic Pain
Orthostatic BP / Tachycardia
High Risk Breast Cancer

New Member

Date Joined Feb 2012
Total Posts : 1
   Posted 2/25/2012 8:35 PM (GMT -6)   
i'm 72 - thirty four years post mantle radiation for hodgkins.

when radiation hits our hearts and neck, over time the long term effects of radiation creeps in.
our radiated coronaries develops plaques that lead to heart attacks. our heart valves get stiff and constrict blood flow.

if we survive the heart attack, and if there is enough good heart muscles left, we are not necessarily fine and dandy.

our radiated sensors for heart and blood vessel functions deteriorate. these sensors are found in our neck vessels (carotids) and the
major artery coming out of the heart (aorta).

normally, if we exert efforts, our heart responds by beating faster (tachycardia). since when our hearts beat faster, it has reduced time
to fill up with blood coming from the rest of of the body to the right side of the heart, and from the lungs to the left side of the heart to pump out.
when this happens, with less blood pumped our by our heart, our blood pressure would go down if it were not for our body compensating for this by constricting our blood vessels to raise our blood pressures. This happens when our sensors are healthy. simply stated, with exercise, the heart rate goes up and the blood pressure tends to rise to get enough blood to our big muscle groups that need the blood.

unfortunately for us radiated bunch, with our sensors poorly functioning, we can still respond to exercise (and for those with really poor sensor functions - just getting up from a sitting or lying positions is enough exercise equivalent) with tachycardia but our blood pressures go down. bad combination, right? tachycardia plus hypotension.

what to do, what to do?

till next posting (if i can find this site again) - my wife is calling. i have to feed our two small dogs.
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