Hi Dan,
I realize your post is about 5 years old, but I wanted you to know my brother is dealing with heart and lung issues in the hospital as I write this.
When he was 16 he had Hodgkin’s disease which was treated with radiation. Now 40 yrs later he is dealing with heart and lung damage amongst other issues. He was diagnosed with asthma and diabetes, both of which were caused by radiation. He has a dropped head due to lack of neck muscle strength and cannot get stronger in his traps. Last July he had titanium valves put in his heart and a talc pleurodesis along with lung decortication in April. His chest cavity kept filling with fluids so he’d get 2 liters drained about every 5 weeks. Painful! Now, we are here in the hospital because he still couldn’t breath. Turns out his other lung was squished up and covered with a scar tissue. So, this time he had the talc pleurodesis and decortication on the left lung. This was done robotically and was so much better for him. The doctor peeled the lung and was able to reinflate it fully. These late side effects are real and he had to educate a couple of his doctors.
Hi @phillee21, I’m so sorry to hear your brother’s back in hospital and still fighting through so much, all these years on. That sounds exhausting and frightening for both of you.
What you’ve described is why we take late effects seriously as a topic - knowing what to look out for really does help people, and their medical teams, catch and manage them sooner rather than later. We’ve recently updated our information on late effects after blood cancer treatment, which covers the kind of impact on the heart and lungs that your brother’s experienced, and our page on monitoring and follow-up after treatment ends talks through what ongoing checks should look like.
Lymphoma Action also has a good page specifically on late effects of lymphoma treatment, if that’s ever useful alongside our own information - particularly as it touches on people treated at a younger age, which is relevant to your brother’s situation.
Finally, if it would help to talk any of it through, our Support Services team are there for that - 0808 2080 888 (option 1) or support@bloodcancer.org.uk. It’s staffed by our wonderful blood cancer nurses, so they can offer clinical advice as well as more holistic support.
Take care, and let us know how your brother is getting on.
Ceri - Blood Cancer UK Support Services
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Thank you for this information. They took his chest tube out this morning and I get to take him home sometime this afternoon. It’s a 5-hour drive home. Then I have another 5 hours to my own home. I will definitely share this information with him. However, at this point I think he could write a book that would help others.
Thank you!
Karin
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