Radiation to Supraclav node..?

jml · 02-17-2008, 07:58 PM

Hi All~
Just wanted to get your feedback/opinion/wisdom, etc about getting radiation to a supraclavicular node?
Here's a little background:
I was dx'd Stage IV liver mets in May 2002.
Lots & lots of chemo (81 weeks), but finally
Liver resection - December 2005, liver NED ever since

February 2006 - local recurrence to L breast, where original primary tumor was.
December 2006 - L mastectomy + reconstruction in March & August, 2007
October 2008 - recurrence to single supraclav node, L side of neck.
Resumed chemo - Gemzar/Herceptin - 4 cycles to NED

, but completed a total of 6 cycles.
To date, I have had 93 chemo treatments in the past 51/2 yrs & am THRILLED to have successfully responded again!!!
But now my docs are suggesting radiation to the node & I really, really, REALLY don't want to do it.
I heard radiation to the neck (&all parts) is pretty brutal - per my infusion nurse who has treated many lymphoma pts.
And I'm just confused about a STAGE IV patient having radiation for a local recurrence after successful chemotherapy?

Any words of wisdom/experience are much appreciated!

Keep the Faith~

Jackie07 · 02-17-2008, 08:56 PM

My mother had lymphoma about 10 years ago. She was 74 at the time. She was at first quite frightened and delaying her surgery with any excuse she could find. I flew home (ca. 20 hrs. including transfer time) and tried to persuade her along with 5 other siblings. She finally had the surgery and all the treatment (chemo and radiation) She is 84 right now and going 85 this summer. She complained more about the chemo than about radiation.

Cathya · 02-18-2008, 09:04 AM

Hi;

My onc found a tumor in my supraclavicular node just as I was beginning chemo so following the chemo I had radiation to my supraclavicular node...left side as well. In this site a tumor is inoperable so, along with chemo radiation is the best option to be sure it is gone. I still have broken veins in the area from the radiation but the treatment itself wasn't so bad. I carried around a cold, wet baby facecloth in a baggy for a while so that if it started to burn I applied it, along with a cream and it really helped. The bigger problem with having radiation to this area is the radiation spray effect. I ended up with damage to my teeth and had to have caps put on those teeth. There is also the risk of osteoradionecrosis which is similar to osteonecrosis caused by biophosphonates but caused by radiation. I would talk to the radiologist about having a protective pad placed to protect your jaw and head during treatment. I really don't know why they didn't do that with me and I didn't even think of this potential side effect so didn't ask. If you need any dental work done (teeth extraction, etc.) I would have that done before treatment just in case. Really that is the biggest problem with radiation to that area in my view so if you get a handle on that it should be fine.....and it is always better to remove a tumor when possible in my view.

Cathy

Patty F · 02-18-2008, 09:09 AM

Cathy
Did you have any problems with a sore throat during your treatment?

Cathya · 02-18-2008, 09:31 AM

Patty;

Not that I remember. I don't believe so.

Cathy

Sheila · 02-18-2008, 05:46 PM

I do know someone who had radiation, and has had limited success...it is being combined or I should say followed by chemo. I had mine surgically removed (the first time) and was NED for almost 3 years, and then they returned with a vengence. So yes they can be surgically removed, and yes they can be radiated, although many oncologists don't like the radiation approach. My friend fought long and hard to get it. Mine are maintained now by chemo.

chrisy · 02-18-2008, 06:23 PM

I'm sure she will see your post and respond on it.

Lolly · 02-18-2008, 06:28 PM

I've had local/regional recurrences to skin and lymph nodes, including supraclavicular, on both left and right sides. Although I've had radiation to the chest and axilla areas (after chemo), I've never had the clavicular nodes radiated; they've enlarged and shrunk several times based on chemo response. I did have a lot of radiation to my right axilla, after chemo, for a very stubborn tumor in the nodes there. It shrunk significantly, but has since returned and now we're back to treating it with chemo. The problem with radiation, in my experience, has been scarring which has been causing other problems. So Cathy's suggestions are very good, really discuss with your rad onc the possibilities of "fall-out" from radiation, and don't be afraid to refuse it if you're not sure. My onc was pretty open about saying we were "thinking outside the box", which sounds like the territory you're in.

<3 Lolly

Cathya · 02-19-2008, 11:15 PM

Patty;

I have been rethinking your question about a sore throat. I think I did have something going on with my throat....a cough or something. I can't really remember but I asked my mother and she reminded me that I did complain for some time about this following the radiation. I do remember being worried about it being more serious than effect of the radiation.

Cathy

Joanne S · 02-20-2008, 02:38 AM

I recall I had a terrible sore throat for weeks when I was getting radiation. It is very common. I went away about 10 days after completing radiation.

I did not have radiation to supraclavical, however, getting radiation was a piece of cake. At the last 5-6 treatments I started feeling sore in the neck, ribs, sternum., but not painful. It is still tender/sore to the touch.

Jo