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Heart Disease and Cancer

clancytoo
Posts: 4
Joined: Mar 2008

I am 47M long term survivor of Hodgkin's Disease (1982). I have had a lot of side effects from the treatment that saved my life 25 years ago. The most difficult one has been heart disease. I have had stents put in to help the scarred arteries. The stents were defective and caused a clot which led to a heart attack. I developed several infections plus pnemonia, probably because I do not have a spleen. Now my heart is so damaged I have had a defibrillator implanted. I have excellent doctors and would be interested in chatting with long term survivors with similar problems that are looking for advice or sharing their stories.

RondaLee's picture
RondaLee
Posts: 1
Joined: Mar 2008

I'm 20-year plus survivor of my first occurance of Hodgkins disease. I recieved radiation to my chest, and also now deal with heart disease and two years ago battled breast cancer for the same reason. Now I may have colorectal cancer as a result of my second bout of Hodgkins and radiation to my lower abdomen 15 years ago. I have beat cancer 3-times so far! Every day I gained has been a gift from God. Had I not had the radiation 25 years ago,then 15 years ago. I would not have had my last child or met my 15 grandbabies. It's hard as I well know, but try not to dwell on the bad from your earlier treatments, but rejoice in the blessings you have been alive to enjoy since!

conijo
Posts: 17
Joined: Apr 2008

I'm a 30 year survivor of Hodgkins disease. I also recieved radiation to my chest and neck, actaully just about everywhere. 5 years ago I had breast cancer and now I have heart valve damage. I'm to get my valve replaced pretty soon. I'm so very lucky to even be here typing this. I thank God that I have gotten to live to this ripe age of 53. it's a down right miracle since I was on my death bed 30 years ago.

clancytoo
Posts: 4
Joined: Mar 2008

It is amazing how far the have come in 30 years. Keep the faith.

clancytoo
Posts: 4
Joined: Mar 2008

How are you doing? Did you recieve treatment for the colorectal cancer. I can't match the 15 grandbabies, but I am blessed with two girls. I thank god every day for the gifts i have received.

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blueroses
Posts: 527
Joined: Jul 2008

Hi, I am a long term survivor of NHL and had a bone marrow transplant in 1991 on a recurrance from initial diagnosis and treatment in 1989. I have many side effects from it all that have kept me on disability ever since. The one that nearly killed me a few times is heart damage from the chemo drug adriamycin. I developed atrial fibrulation from it, severely. 3 years ago I had to have an emergency pacemaker put in to save my life. Since then I have had many trips to the ER because of rapid and irregular beats. The next step for me is an ablation surgery where they go in and try and destroy the pathway that the electrical impulses are taking that is causing the problem. It can be a risky procedure so right now they are just using mega drugs to keep me under control but that is only adding to my chronic fatigue situation and so I am pretty useless. I am happy that they were able to save my life but you pay a high price for aggressive cancer treatments, that's for sure. EArly arthritis is another one, early cataracts, chronic respiratory issues, degenerative bone issues, chronic fatiuge, chemo brain (focus issues, searching for words, memory loss) dry eyes beyond repair, mucus buildup due to radiation knocking off the cillia in our bodies causing chronic infections, all kinds of fun things. Feel free to email me if you want to chat more.

clancytoo
Posts: 4
Joined: Mar 2008

Sounds like you have had your hands full. Have you scheduled the ablation surgery or is that just your next option? Did you also have radiation? I am interested in some of your side effects. I have had a degernative bone issue in my wrist but it was never related to treatment. I had radiation, but not on my wrist. Can Chemo cause that? I also have shoulder and hip issues. The fatigue is another issue since my heart problems. It has been very difficult to work full-time. I have definitely had focus issues. I take Paxil and it helps but it still a issue. How do you deal with some of your issues?

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I just saw my electrophysiologist (specializes in all things electrical to do with the heart - a specialized cardiologist. Left frustrated and feeling alone and invalidated. Sigh. You know most of my story from my other posting in here but there seems to be a conflict as to what damage the adriamycin actually caused - the type of arythmia. He said it's called 'symptomatic atrial fib' meaning I have atrial fib with symptoms - duh. Other cardiologists have called it sick sinus syndrome, others tachicardia and still others bradycardia, they all denote separate reasons for the arythmias. Pick one, no seems to be able to come to a conclusion. Anywho, in answering your questions, this electro dude I saw yesterday now tells me there are 4 other drugs we can try to slow down my heart - I already have a pacemaker so I can use medications in greater doses because the pacemaker will prevent the beats from going too low. He did not tell me there were 4 other drugs to try first before ablation so I worried that was the next step for nothing. Grrrrrrrrr. So I am going to try Sotalol each time I have a 'near fainting' attack and then when my pacemaker is checked they will look at the results to see what kind of attack it was and does the Sotalol work. This mode of treatment does nothing to help me get more comfortable with going out and fear of having an attack in the middle of wherever though. Guess I am asking for too much. Sigh. Yes I had radiation, total body radiation during the bone marrow transplant.

Before I was radiated the radiologist told me that from this type of radiation I could probably look forward to early arthritis (that's happened) and early cataracts (has also happened. If radiation can bring on early arthritis then it's logical to me that degenerative diseases become possible after radiation. They found arthritis in the bottom of my back and some call it lower back degenerative disease.

How do I deal with the issues? Hmm, shortest answer is some days better than others. I have seen psychologists and shrinks over the years to make sure I am still firing on all pistons after all the trauma of the cancer and treatments and side effects and inability to work since the transplant, lately I have felt like giving it all up with talking to the 'experts' about the traumas, they don't seem to be able to offer much. Take it day by day I guess. I now live alone and it's hard, usually I have to order groceries and meds and have them delivered but I get extremely bored. Not much to do about the fatigue except sleep when I have to which is becoming more and more often and for longer times. I truly believe that some people who have undergone cancer treatment and the illness itself suffer from Post Traumatic Stress Syndrome but try and get a doctor to admit that. Cancer is a war we wage with our body out of control, how is that trauma different than a war we fight with guns and helmuts?

Daisy19
Posts: 1
Joined: Sep 2008

Hi, I am new to this web site. I had HD at 17 YO in 1977. I now have severe aortic stenosis and atrial fib and flutter. I'm wondering if anyone has had ablation for AFib and/or valve replacement. My cardiologists tell me the radiation puts me at increased risk for either procedure. I too have heart disease and have 3 stents in my right coronary. I realize reading here how lucky I have been with no other complications but hoped someone here would have personal experiene they would share. For those without a spleen, my docs have always recommended pneumonia/flu vaccines. Thanks for any info.

DaAuntie
Posts: 1
Joined: May 2008

I am a 33 year survivor of choriocarcinoma cancer. I had mets to my lungs and received radiation treatments and 1 1/2 yrs of chemo. In 2001 I was dxd with breast cancer. Even though it runs in my family my doctor told me I got it 20 years early. My dr believes that the radiation caused the breast cancer.

Now as a 6 year survivor of breast cancer I was dxd with pulmonary hypertension. Pulmonary hypertension is high blood pressure of the pulmonary artery.

tldowen
Posts: 2
Joined: Jan 2009

I am a long term Hodgkin's survivor. Had it in '84 when I was 20 and had radiation. I am now 44 (female). I was just wondering when did you begin having these problems and what was your first symptoms? I have been concern about long term side effects and this is one that I have been worried about.

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

I am over 19 year out from my treatments of Hodgkin's Disease. One thing that I have learned, and only recently, how important it is to deal with a late effects clinic. While today, when a child, or young adult finishes treatment, they are FOLLOWED UP on. Unfortunately, for those who were treated back in the early 90's, 80's, 70's and beyond, not a lot was known about the late effects.

But there are late effects clinics at Standford, Sloan Kettering, Boston just to name a few. The experience of the doctors who have studied these late effects are what make it possible for a survivor to manage their lives with all the things that are developing. And one great thing about these late effects clinics, is that they take the time to talk to you. And it is great to finally get explanations of why things are the way that they are.

A final thought, it is definitely better to see a late effects doctor before you start getting feelings that something is wrong. I almost found out the hard way last year when I finally addressed an annoying tightness in my chest (not pain) that I just simply ignored. Well, it ended up being a "widowmaker" blockage in the main artery going to my heart. 36 hours later, I had emergency double bypass to save my life. I've been to my late effects doc twice since, and he has worked up on me, along with my family physician. I do have more to deal with now that I am aware of them, but at least I have the chance to do so. If you aren't being followed up, then please consider it. The big thing for me, is at least I know things just weren't in my head.

Paul E. (Hodgkoid2003)

chinaberry25
Posts: 8
Joined: Apr 2009

Heart trouble is the leading cause of death. How do you know that radiation caused the heart trouble that you may have gotten w/o the treatment. My husband is undergoing radiation and he had a heart attack 4 years ago. My mother -in-law had breast cancer at 75 and lived til 90 with no heart trouble. Had radiation and this affected her swalling, but her heart was stronger than mine. A kidney blockage killed her. She lived the rest of her life cancer free.

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Chinaberry,

Unfortunately for me, and shockingly to my cardiologist, when he went to do the catheterization, he was unable to do the stinting. Originally, he felt it was just going to be normal plaque blockage, but instead was shocked to see that the main artery instead was heavily scarred from radiation.

Since then, I have had numerous testing done which also confirms more issues with my torso, at least at this point which are probably related to scattered field radiation, along with a couple of the chemo drugs (adriamiacin and bleomyacin).

I would love to have this be physiological, but past experience, and a large number of acquantenances who have been battling late treatment effects, provides overwhelming consideration. This is also being confirmed by a physician who specializes in late effects in one of what I consider the top two clinics in the country... Sloan Kettering.

To be honest, I am still quite overwhelmed with all the knowledge that I should have learned long ago, had there been a long term plan for survivors.

Paul E., (Hodgkoid2003)
Lansdale, PA
HDIIIbNS
rads and MOPP-ABV
cured 19 years without a relapse
2x CABG (heart bypass) 4/08
more confirmed late effects...

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