Hodgkins Strikes Back!

so here's the deal: in 1975 when I was 19 years old, I was diagnosed with Hodgekins Lymphoma (stage three B,mixed cellularity, for all you amateur oncologists out there) and treated with both radiation (400 rad upper mantel) and chemotherapy ( four drug protocol based on CCNU). Been in remission ever since, though I have had to cope with some problems (GERD, shingles, etc) resulting from either the disease or the treatment. Four weeks ago, I had a mechanical aortic valve (Medtronic) installed. I have recovered very well from surgery, and am exceeding expectations in rehab. Due to go home tomorrow (well, to a hotel; I am living and being treated in Switzerland, due to return to the US for good in the coming month). The cardiac oncologist who is tracking my case says that the heart valve damage was almost exclusively the result of the radiation and chemo, and that as a result I am "different" from all other patients undergoing similar procedures, specifically in that I cannot hope for a full recovery. I had a heart ultrasound a couple days after surgery, and my EF is still right around 30%; not good from everything I have read, most folks say if you're at thirty, get to a hospital immediately. Due for another round of tests (stress EKG, another ultrasound) followed by a consultation with the aforementioned cardiac oncologist(who will also arrange a referral to a contact in the US) in a week or so.

What should I ask him? Is there even any point in asking about a prognosis? Best case, I still have a million questions about living with warfarin, which I am not even on yet (the Swiss use something different).

I am new here, but I have really appreciated this candor and humor of this site. Thanks.

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Comment by shutterlab . on May 17, 2014 at 20:37: Lots has happened, starting with our return to the US for good, and first meeting with NYc big-deal cardiac oncologist. He was not encouraging, and at one point had a bit of the meltdown ( thought I was not sufficiently respectful and compliant).Swiss dr's said the EF had improved; he was not impressed. They encouraged exercise; he said only massive drugs can keep you alive. basically I am on beta blockers and aspirin (as well as anticoagulant, currently warfarin) , as well as ACE inhibitors and diuretics, for life. His lab screwed up the blood tests, so I had to return and donate another vial; that did not inspire confidence. I will be dealing with the nurses, not with him directly. I get an INr test locally Monday and give them the results . They will tell me how much warfarin to take. Contrary to what I had been led to believe, no one had any experience transitioning a patient from Swiss to US drugs. Bottom line is that the damage was done by chemo and radiation years ago, and I should not hold out hope of complete recovery.

I am a fighter, not a quitter, a factor they refuse to consider, but I may well find a different cardiologist. This one is too much of a downer.

Comment by shutterlab . on April 27, 2014 at 16:40: Thanks, Graeme; I shall (ask, that is) and I will--- keep you posted. keep your fingers crossed: the Dr.s who released me from in patient rehab said they were confident I would see better results at the next test, both because the first one was so soon after surgery, and because I did so well in rehab , which they could not imagine happening if my EF were really that low. let's hope.

Appreciate the support.

Comment by Graeme on April 27, 2014 at 12:57: Shutterlab

Frankly don't know where to start or what to say..Yes, ask for a prognosis!!And, keep us all posted cos you are a very lucky man in many ways and life has a habit of keeping us on our toes with all sorts of (positive!) twists and turns... !!

cheers

Graeme

Hodgkins Strikes Back!

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