New Member Dealing with Radiation and Chemo Induced Heart Disease from Hodgkin's

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MikeD

New member
Joined
Jun 23, 2011
Messages
1
Location
Farmingdale, NY USA
Hi, this is my first post. The information and discussions on this site have been a great support in dealing with my anxiety. Thank you.

I am 46 years old and have been dealing with the late effects of Radiation and Chemotherapy for Hodgkin's Disease for 26 years. I'm currently being followed by a cardioligist in the NY/Long Island area. I was told that I have developed CAD a couple of years ago, and have gone through three catheterizations and and two cardiac stents placed (RCA and Circumflex). A couple week ago, 1.5 years after my last cath, an echo showed that I have developed Aortic Stenosis with an aortic area of 1.5 cm2 (this appeared to me to be a pretty rapid development). My cardiologist wasn't too concerned. He said for me to follow-up again this coming February and to just keep doing what I do (I'm very active and add cardio to my daily routine, either jogging or using an arc trainer for an hour each day).

I think I was a little more concerned then he was. I have looked around nyc and could not find a local cardiologist specializing in my history. I have a appointment with Sloan Kettering in early August to meet with their follow-up long term care oncologists and have made an appointment with Dr Bruce Griffin (cardiologist) at the Cleveland Clinic later in August.

If anyone has any experience with Dr Griffin or some other adivice, that would be great. Thanks
 
MikeD said:
A couple week ago, 1.5 years after my last cath, an echo showed that I have developed Aortic Stenosis with an aortic area of 1.5 cm2 (this appeared to me to be a pretty rapid development). My cardiologist wasn't too concerned. He said for me to follow-up again this coming February and to just keep doing what I do (I'm very active and add cardio to my daily routine, either jogging or using an arc trainer for an hour each day).
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Cath and TEE are considered to be the best tools to determine valve area, but boy the numbers can be confusing. 2 years ago my valve area was .9cm, then a year later 1.4cm, 10 months after that .7cm and just did a TEE last week shows .9cm (valve area doesn't fluctuate like that bad math does) Screw the numbers DOC I feel like crap what gives. Like Ken Taylor said, stay on top of this. I love it when you get to the point to where you know more than most cardiologist about this condition. Aortic stenosis isn't very common and most cardiologist don't work with it as much as one would think.
 
Hi Since you've had numberous caths and echos, If you don't know, I would find out what your aortic valve measured previously. As other said your valve could stay at 1.5 for years, also usually doctors don't recomend valve surgery until the measurement is .8 or less, so hopefully you could live very long before needing AVR surgery IF you ever do.
 
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Mike - Along with what the others have said, you should also know that many patients can lead a very full and normal life at the 1.5 cm2 area. While it is true that each patient's "minimum" valve area required for their normal activity level may differ, 1.5 cm2 is still close enough to normal that most patients will be asymptomatic until the valve area shrinks a lot more. Keep track of it, and get it fixed before any damage is done to your heart. You will need a trusted cardiologist to help you know when that may be.
 
Mike,here is a thread similar to you http://www.valvereplacement.org/forums/showthread.php?37924-Post-Hodgkins-pts....need-info-on-radiat-problems-AVR-Op-and-Post-op-Healing-etc&highlight=radiation . Mike, a heart felt WELCOME to our OHS family glad you found the site most of the community are OHS brothers and sisters, there are some minimally invasive so ask away, there is a wealth of knowledge here for the future .....


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf
 
There are a lot of other folks who have had similar issues with Non-Hodgkins Lymphoma. You might want to do a search on it.

The limit at which a surgeon can do a valve replacement without undue criticism from his colleagues is anything smaller than 1.0 cm². Many cardiologists look for .8 cm². Some cardiologists are even pushing to lower the size, saying .6 cm² should be the norm for surgery. However, they deal most commonly with people who are in their seventies and greater, and tend to base assumptions on that age group. In my opinion, with a patient in his 60s or less, anything below .8 cm² is playing with fire. Younger people are more vigorous and will get symptoms at a larger aperture than more sedentary individuals.

At 1.5cm², you're not even close. That's the top end of the moderate range in most scales. If you are feeling symptoms and have no other physical problems, you might want to look at what they love to call "lifestyle choices," such as weight issues or lack of sufficient exercise. If you are in a gym, don't use heavy weights, use more reps of lighter weights. If you're having palpitations (PACs and PVCs) you may want to consider caffienne reduction. If you use energy drinks: don't.

Best wishes,
 
How often are you getting Echocardiograms?

I would recommend every 6 Months with your Radiation History as Aortic Stenosis can proceed fairly rapidly once it becomes apparent. You may want to start interviewing Surgeons so that you will KNOW who you will want to see when (NOT IF) the time comes. FYI, Dr. Lytle is considered to be the Radiation Guru at Cleveland Clinic. Dr. Pettersson is the Re-Do (i.e. scar tissue) Guru and primary proponent of the On-X Mechanical Valves should you desire that option.

'AL Capshaw' (Been There, Done That - see my member profile)
 
MikeD,

Think of it this way, You're alive now because they saved your life so many years ago and now you have a new problem and you may need a good surgeon in future. A surgeon with experience who won't be stumped by what he may find inside a person with your history.

The big clinics will offer you that and you already are working with several of the best.

I had Hodgkins in 1987. I was treated with radiation only (Stanford) and had a great active life until my aortic valve began to fail. Now I'm 11 months post op (Mayo Clinic) and RIGHT now I'm at the hotel after a long day at work. (I'm a pilot) Two days ago I played church softball, yesterday I watched my middle son play baseball, tomorrow I'll play golf and in 2 days I'm gonna visit my favorite winery to pick up my wine here in California. (It's cheaper than having it shipped)

My point is, after 11 months I feel fully recovered from the surgery. I can sometimes go for a whole day without thinking about the last year and my mechanical heart valve. It often only comes home to me each day when I take my meds before bed. I sometimes have a few other reminders too, but I have lately actually forgotten it's Tuesday and that I have to check my INR. That's a great feeling and I was thrilled the first time it happened!

Life is good. You have a problem that may demand your attention in the future, or maybe not. Live now and deal with the future in the future. But remember, life is still good even after you reach this point. This is just heart surgery, just like so many others before us have already survived!

To quote Tom Wolf, I am (again) a man in full.
 
Hi, I had Hodgkins 40 years ago; my aortic valve was at 1.5cm in 1998, here it is 14 years later that I got down to .8. That being said, I wish I had gotten the surgery up to a year earlier, or 6 mos at least, because other parts of your heart and lungs are worked harder when the valve opening is smaller. I wouldn't worry for up to ten years, but do start paying attention to how you feel maybe after 1.1 or 1cm. Also remember that in some mantle treatment patients (I was one) the radiation goes after the RCA and LCA, at their opening, blocking them with a weird stuff called apatite(sp?) like your tooth enamel; my Dr. Didn't test me for that ... And an answered prayer got it accidentally found..a nuclear scan found it and it was stented the next day,91-93% blocked. Also rad can cause fiberosity stuff when a surgeon goes in. .. Get a surgeon.Familiar with Hodgkins..but that's far off for you now.
 
MikeD,
Hi I am currently 3 weeks post or AVR, MVR and RCA Bypass I had Hodgkins disease in 1977 treated with mantel radiation I saw Dr Brian Griffin at the Cleveland Clinic and had a full work up in March at my cardio request here in Phila. I then saw Dr Bruce Lytle also at the CCF. They felt this was my window of time to have this surgery that I knew eventually would need to stay alive and not progress to Heart Failure. Both Dr's are Brilliant. Experts in their field and world class. The CCF is top notch and provided me with excellent care! If you would like to talk on specifics please feel free to call me anytime. Best of luck to you
Rachel
RZG
 
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RZG said:
MikeD,
Hi I am currently 3 weeks post or AVR, MVR and RCA Bypass I had Hodgkins disease in 1977 treated with mantel radiation I saw Dr Brian Griffin at the Cleveland Clinic and had a full work up in March at my cardio request here in Phila. I then saw Dr Bruce Lytle also at the CCF. They felt this was my window of time to have this surgery that I knew eventually would need to stay alive and not progress to Heart Failure. Both Dr's are Brilliant. Experts in their field and world class. The CCF is top notch and provided me with excellent care! If you would like to talk on specifics please feel free to call me anytime. Best of luck to you
Rachel
RZG
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Rachel, It is great you can offer advice, and are willing to talk on the phone,but I would probably edit your post to remve your phone number since it is such a public place. I noticed Mike hasn't been baack since his first post, but you might want to PM him with your phone number so you don't get tons of phone calls.
 
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