Hodgkins Lymphoma Question on heart palpatations after radiation please help.

bluerose said:

Familiar
Hello to a fellow Canadian, I live in Ottawa but had my cancer protocol designed at Princess Margaret in Toronto, where you probably go. Great hospital and you are very lucky to be living in the Toronto area for support groups they have at Princess Margaret as well. I had non hodgkins lymphoma 23 years ago with one recurrance a year after initial diagnosis and treatment and have been considered cured since. That's the good news. The bad news is that I have had many side effects from treatments and one of them is Atrial Fibrulation or Afib. My Afib they feel is from one drug in particular that I had in my chemo mixes and that drug was adriamycin. Check to see if your chemo included that drug.

When I started to feel little palpitations the docs said that was normal during chemo, but remember that was years ago and they weren't that sure of many of the side effects back then - they do know more now. The irregular beats got worse over the years but slowly and finally for me it got really bad. I am not going to go into it all because everyone is different and today they have better monitoring and are quicker to act BUT you have to take the lead and follow through with a cardiologist on this. DON'T WAIT. Afib from adriamycin especially if very common in cancer survivors but the severity can vary greatly depending on what your doses of the drug were and with what other drugs you had contact. I am not sure about the effects of radiation in it all, I had total body radiation back then plus localized to abdomen and pelvis. I had a bone marrow transplant and convestive heart failure while in isolation during recovery from the treatments at that time.

Like I say today I think they monitor adriamycin more closely. Did you have PET scans during your treatments? I didn't when I was treated and now they use them I hear to monitor the effect of treatments and vary drugs accordingly or at least that is what I have heard.

You need to be vigilant in your monitoring of your own symptoms and don't take 'don't worry about it or it's nothing' as an answer. YOU KNOW YOUR BODY BEST and you know when something isn't right - demand the help you need. I got very light headed and dizzy with almost fainting many times and winding up in ambulances with the afib more times than I can count. I wound up with an emergency pacemaker having to be inserted in the ER one time when the afib was at it's worst and I nearly passed out.

Like I said, everyone is different as every treatment is different as every cancer is different so don't think that what I have had happen to me will happen to you. I am just replying to your post to let you know that you are not alone in having this kind of side effect from treatment and that you need to let your doctors know that this is something you want to pursue in diagnosis and treatment - they have just come out with a better drug that helps with the side effects of afib.

There are cardiologists who specialize in the electrical systems of the heart, afib is part of that system, and they are called electrophysiologists. Say that fast with a mouth full of marbles. lol. Anywho seek out one of those cardiologists so that you know that you have the best care in your specific type of heart condition that is possible. Of course first off you have to be diagnosed with Afib but even having said that I think it would be a good idea to get a diagnosis from an electrophysiologist/cardiologist. If you can't get that specialist right off the bat then any good cardiologist will run tests and you will get your diagnosis that way. I have two cardiologists, one for regular heart checkups and maintenance and the electrophysiologist for consults on the afib alone. I just remembered that when I was diagnosed with afib it was through a regular cardiologist but I asked for a consult from an electrophysiologist as well and that is how I got to see that specialist. Also I was told by that specialist that he does not have regular patients that only see him, he just treats their conditons as needed but they have a regular cardiologist who manages their day to day heart issues. I just remembered that is how it went for me and since you are in Ontario that might be how you will have to go about it. Sorry I have chemo brain too as a side effect and just realized you might have to go down that path too, a regular cardiologist first and then once you are diagnosed then ask for a consult with an electrophysiologist too to monitor the afib, if it turns out that is what you have.

Tara, I don't know if you know it or not but Princess Margaret has a website like this one online. It's called Caring Voices and it's run right out of Princess Margaret hospital. It started out to be a breast cancer site only but has progressed to dealing with all kinds of cancers and like I said is very much like this site. The chatrooms there however are not used much, most post on boards like this on that site.

The great thing about Caring Voices though is that they deal with some Canadian Cancer issues like funding and insurance for our country plus the really super thing is that they hold online meetings for anyone who wants to attend online, and offer many subjects relating to cancer. The meetings are hosted online by professionals from Princess Margaret like technicians and even an oncologist comes in now and again and hosts meetings. In those meetings you can ask these professionals whatever you like in real time. It's great. Go to the Caring Voices site and register and take a look at their meeting calendar for what you might be interested in. They have radiation specialists in and chemo specialists and talk about other matters pertaining to the cancer journey. It's a fabulous resource, you have cancer specialists there to talk with for almost a whole hour. Doesn't seem like the word is out too much about these meetings, which is a shame, but the upside of that is that if you go you get some of these professionals to yourself or to just a few survivors/patients so you can really get some questions you might have fully answered. Give it a try, I think you will find it interesting.

Anywho I hope I have been of some help to you in your journey. I am usually around the site here now and then. If you want to chat at any time leave me a personal message and I would be more than happy to help you if I can.

All the best and remember that you have to many times in the journey be your own advocate and push for your own care. Long waits are happening in Ontario as you well know, make sure you aren't lost in the shuffle. You know your body the best, fight for it.

Oh by the way, have you looked into Wellspring? It's not far from Princess Margaret, they are a great resource too for cancer information and support. Lots of help and validation out there so don't be afraid to reach out for it, if you are experiencing an issue with you cancer you can bet that others are having the very same issues. You aren't alone, remember that.

Blessings,

Bluerose