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Need help in finding some answers


BarbaraFi

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The radiation I got while on chemo in 2007 has caused scar tissue to be so massive in my chest that I now have occlusions of my left vena cava and innomiate veins. My symptoms hoarseness, facial and neck swelling, trouble swallowing at times and sob sometimes, they put me on coumadin

which has helped some. But I am not finding much on the subject on the internet to be very helpful. My family doctor has cautioned me with getting stents and said it could cause me more problems. I go back to my onc. at the end of the month and want some feedback on anyone who has develop this condition and what if anything was done and did it help. I am feeling like the cancer is not going to get me it is the treatment for it that is. Very discouraged.

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Hi, Barbara, welcome to the group. I know what you mean when you say if the cancer doesn't get to you, the treatment will. I haven't had radiation, so don't have anything to offer from that perspective, but I do have a suggestion.

Please visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. The GRACE faculty can't give specific medical advice to someone who is not their patient, but the docs there (which include a radiation oncologist) have a knack for laying out all the considerations in a way that's very helpful. Best wishes and Aloha,

Ned

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Hi Barbara, glad you found this site but as we here are fond of saying, sorry you had the need to find us. I second Ned's suggestion. Dr West's site was a valuable resource for me together with this site in the earlier days after my dx. Maybe someone will still come in here with relative experience but, in the meantime, cancergrace is the place to go.

Good luck and keep us updated.

Judy in Key West

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Hi Barbara,

I hope you've gotten some answers and ideas over at GRACE> Please post and let us know what you learned over there. Please keep us updated on you. We continue to be here for you.

HUgs

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Hi Barbara, My situation was similar, I think. I had 100% occlusion of my Right Coronary Artery which was, guess what, just adjacent to my radiation field. They warned me when I had radiation that it could cause heart problems later down the road. Also, radiation to the mediastinal area is well documented to cause possible heart problems.

So I had the stents put in. Easy procedure. It helped my breathing right away.

So far, so good. But I am on blood thinners (Plavix) for last three years. These are expensive drugs for long term use.

Because my stent run was 6 cm long, I will be on Plavix a long time. The problem there being that the extra bleeding puts me at risk in the event of a car accident etc. Even just a routine colonoscopy is a big deal because I have to stop my blood thinners for a week before in case they need to cut out a polyp.

I am sorry this happened to you. It sounds like your situation is different though because it involves the large veins in the chest instead of just the heart. We've been painted into a corner now because of LC treatments.

Barb

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I went to my onc yesterday, they have referred me to a specialist on which I have an appt this coming Monday, the plan to see if the scar tissue is not a greater risk with putting in stents. I hope they can as they told me all my symptoms would be gone within 2-3 days, I appreciate everyones reply especially Barbs as I was in doubt about the stents. So we will come Monday see what if anything this doctor can do. I will keep you posted. Thanks again EVERYONE....

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Hi Barbara, Here is interesting article about radiation and heart problems.

http://content.onlinejacc.org/cgi/content/full/42/4/750

I'm not sure how they will put in your stents. They inserted a tube into top of my right thigh in the femoral artery and then ran a wire up my arteries until they got into the heart. From there they were able to plant two stents, each 3 cm long, in my Right Coronary Artery.

Some of the risks are possible stroke if they knock some plaque off and it lodges in the brain. I watched the whole thing on a TV over my bed when they did it. It is not much different than going to the dentist.

I had to stay in the hospital overnight to make sure my leg stopped bleeding. I had to lay on my back and was not allowed to move or get up all night. They released me the next morning. I was out hiking in Yellowstone a week later.

Good luck with your doc appointment Barbara.

Barb

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