Radiation for HL

lmack

Hello,

I had Hodgkin's Lymphoma and have had 6 cycles of ABVD.

Tomorrow I'm going to get another PET scan that will hopefully be clean. That will mean no more chemo (they didn't have me schedule any more yet.) I hope to be moving on to radiation. I was told I'll have to go for 30 days (every day except weekends.) Has anyone had radiation yet? The remaining mass was located near my left lung and I'm curious to know how long the treatments lasted and what it felt like, if anything.

Thank you,
Laura

Michele23

Radiation
Hi Laura,I have NHL and had 32 radiation treatments to neck then at another time 12 to eyebrow/forehead area.It took more time setting everything up then did the treatments themselves.My guess would be a half hour or less depending on all that is being radiated.It's very tiring running everyday and I was exhausted.Took daily naps.They burned my skin pretty bad on the neck but that was in 95,things have changed a bit.When they did my forehead it didn't even get red,only soreness.{Weird}Clothing bothered me when it touched the neck so get some soft and comfy things to wear during treatments.Good luck hope they go well for you.Take care,Michele Dx95Low grade follicular stage 3

allmost60

Best wishes...
Hi Laura,
I've never had any radiation, just 6 rounds of CVP-R chemo.I just wanted to pop in and wish you good luck on your scan tomorrow... I'll say a prayer for you. Hope you will come back and share the results. Best wishes...Love, Sue (FNHL-2-3A-6/10)

medsec

radiation
Hi Laura, I too, had Hodgkins Lymphoma, I had the Chemo (ABVD) it made me tired, and a little nausea but it wasn't as bad on me as the radiation, but we are all different and our bodies respond differently so I am hoping yours will not be as bad. Mine was concentrated on the lymph nodes in my neck, where as, you say yours is in your lungs so the radiation will be centered there. Mine being on the side of my face and neck it made my throat sore, I could not eat anyhting but jello and soup. it also made my new little crop of hair that had just begun to come from the chemo come out again. But it is all back now and verry curly I love it. ONe thing the doctor did not mention was the damage it would do to your teeth. I don't know that my being informed would have changed anything but I feel we have the right to know. I had just spent a small fortune trying to get my teeth fixed before the radiation so I would not be bothered with dental issues during radiation, only to find now that the saliva glands are damaged now and my teeth are all decaying. I dont think that will be a issue for you if it is in your lung. But I do feel you might want to at least ask your radiologiest about it, I like knowing before hand what the effects are. I hope everything goes good for you I beleive educating and communication is one of the greatest things wee can do to fight this awful disease. It is great having this support group, they have been so supportive and no one should have to go through this alone. I am doing fine now my Pet Scan was clear..May 1st wil be 6 months...Hang in there you can do it..

lmack

allmost60 said:

Best wishes...
Hi Laura,
I've never had any radiation, just 6 rounds of CVP-R chemo.I just wanted to pop in and wish you good luck on your scan tomorrow... I'll say a prayer for you. Hope you will come back and share the results. Best wishes...Love, Sue (FNHL-2-3A-6/10)

Thank you!

Thank you!

lmack

Michele23 said:

Radiation
Hi Laura,I have NHL and had 32 radiation treatments to neck then at another time 12 to eyebrow/forehead area.It took more time setting everything up then did the treatments themselves.My guess would be a half hour or less depending on all that is being radiated.It's very tiring running everyday and I was exhausted.Took daily naps.They burned my skin pretty bad on the neck but that was in 95,things have changed a bit.When they did my forehead it didn't even get red,only soreness.{Weird}Clothing bothered me when it touched the neck so get some soft and comfy things to wear during treatments.Good luck hope they go well for you.Take care,Michele Dx95Low grade follicular stage 3

That's pretty much what I
That's pretty much what I have been hearing, that the actual treatment sessions don't take long but the initial appointment does. That wont be fun for me if just wearing a shirt bothers my skin. I don't have a lot of choices if they radiate in my lung area! : ) I hope to be able to get the treatment after work, so if it does make me tired hopefully it will just put me out for the night. Thank you!

lmack

medsec said:

radiation
Hi Laura, I too, had Hodgkins Lymphoma, I had the Chemo (ABVD) it made me tired, and a little nausea but it wasn't as bad on me as the radiation, but we are all different and our bodies respond differently so I am hoping yours will not be as bad. Mine was concentrated on the lymph nodes in my neck, where as, you say yours is in your lungs so the radiation will be centered there. Mine being on the side of my face and neck it made my throat sore, I could not eat anyhting but jello and soup. it also made my new little crop of hair that had just begun to come from the chemo come out again. But it is all back now and verry curly I love it. ONe thing the doctor did not mention was the damage it would do to your teeth. I don't know that my being informed would have changed anything but I feel we have the right to know. I had just spent a small fortune trying to get my teeth fixed before the radiation so I would not be bothered with dental issues during radiation, only to find now that the saliva glands are damaged now and my teeth are all decaying. I dont think that will be a issue for you if it is in your lung. But I do feel you might want to at least ask your radiologiest about it, I like knowing before hand what the effects are. I hope everything goes good for you I beleive educating and communication is one of the greatest things wee can do to fight this awful disease. It is great having this support group, they have been so supportive and no one should have to go through this alone. I am doing fine now my Pet Scan was clear..May 1st wil be 6 months...Hang in there you can do it..

Medsec - One of the
Medsec - One of the annoying little things about the treatment is that it does affect everyone differently. I wish it was all more cut and dry than it is. But, that's why I like to hear about everyone's experiences. I didn't lose all of my hair on the chemo, it just thinned out a lot, and it the ABVD made me tired a few days after I had it. Otherwise, it wasn't too bad for me.
That's interesting about the teeth, I'm making a note of that to ask my Dr. I have spent a lot of money teeth over the years, I'd hate to damage them! Congrats on your 6 months! Celebrate!

cathyp

lmack said:

Medsec - One of the
Medsec - One of the annoying little things about the treatment is that it does affect everyone differently. I wish it was all more cut and dry than it is. But, that's why I like to hear about everyone's experiences. I didn't lose all of my hair on the chemo, it just thinned out a lot, and it the ABVD made me tired a few days after I had it. Otherwise, it wasn't too bad for me.
That's interesting about the teeth, I'm making a note of that to ask my Dr. I have spent a lot of money teeth over the years, I'd hate to damage them! Congrats on your 6 months! Celebrate!

rads
I had mantle radiation in 1989, a long time ago, I'm sure things have improved. Most of my fellow patients breezed through rads, I did not. My throat was severely burned and I ended up w/esphogitis. There was no nausea meds so that was a huge problem for my raw throat. I was hospitalized for 2 wks, nothing by mouth, treatments delayed. I did lose the hair on the back of my head in a horseshoe pattern, it grew back.
Fast forward to 2011, I'm hopeful you will have all the benefits of all the docs learned along the way. Are they able to block your heart from the rads?
All the best to you along your journey,
Cathy

HD 1989 - RADS
HD 1994 - ABVD
IDC 2008 - DBL MX