Haven't posted in a while...letting the demons run the show is SUCH fun I just couldn't stop the fun...
My tumor, which, up until a few weeks ago, was neatly tied up in a nice painful cyst on the side of my neck, has moved rather quickly down my neck and presented itself in/on/around the inner portion of my clavicle. Small swelling, <<BIG PAIN>>
Doc has decided radiation is the way to go; YUP! It seems after 5 years it's okay to re-tadiate; actually this is a bit lower, but same general area. I'm not familiar with radiation being used to relieve pain...am I just (predictably) under-educated or have I been half asleep all along?
In addition to this I'm also on two different blood thinners (coumodin as well as lovonox) -as I seem to have a clot in my left jugular. (Oh, yeah...by the way...!)This concerns me as I know so little about blood clot issues and associated problems.
I'm having to be tested regularly to make sure my blood isn't too thick or thin; it's swung WAY to both directions; and it seems that this could become a MUCH bigger problem (rather quickly!) than the tumor movement and associated pain.
Any experiences in this area would be greatly appreciated as I have learned over the years to truly HATE surprises! ;-)
-Gordon

Hi Gordon! Im glad you stopped by to give an update. I had been concerned you had been having some problems. I hope you are able to get the pain meds adjusted so you are not suffering. Nobody should have to go thru this in pain, it does not help the patient at all.

I know a little about blood clots. About 35 years ago (wow am I getting old!!!) my brother in law had a problem with his leg. He had fallen at his industrial job and it was very swollen. About a weel later, he was in agony as his leg swelled to twice its usual size, I took him to the ER. They discovered a blood clot in his leg. He has been on coumidon ever since and spent only a couple days here and there in the hospital. For the past 35 years he has walked around with a bad leg and needed to have his blood monitored every 3 - 6 months. Bottom line here is, this condition is able to be successfully managed over long periods of time. At least this was the case for him, hope it turns out ok for you as well.

Best wishes!

My husband developed deep vein thrombosis after his second chemo session and has been on Lovenox. It is important to monitor your weight as the dosage is dependent on the patient's weight. For a patient with active cancer, it is extremely important to manage the blood clots as they have the potential to travel to the lungs and that can be life-threatening.

Hi Gordon, sorry you have to saddle up for battle yet again. No wonder you don't like surprises, you've had some doozies!

I think that if radiation shrinks the tumor, that can sometimes help with pain. As Christine says though, your pain should be addressed now too.

Hang tough --

Yes, I heard radiation is used to relieve pain, as mentioned, by reducing tumor size, and with unhealed wounds, and with bone cancer, that I know of. From my last surgery I still had an open wound, but ENT said radiation will close that up. I also had radiation 3x to the same area, and is being done more often, but it also depends on the total Gy used, the area radiated, and it's maximum toxicity levels of any structures, and if new tissue was used for reconstruction from any flaps, that make it possibly to do reirridation. Good luck with everything.

Hi Gordon,

Thanks for the update and glad to hear you are still fighting the good fight. Sorry to hear about the new blood issues but with all the battles behind you I am sure you will beat this one back too! Stay well, fight hard. don

Hello donfoo, I know a thing or two about blood clot issues. As my platelets are chronically low due to HIV+ status. My platelets usually hover around 80 or so. Normal range is 180-400. my lowest count was 16 at this point just bumping into a table would cause a huge bruise. I was admitted to the hospital until they got more platelets into me. By the by that lowest reading was right after Rad./Erbitux treatment. after treatment they slowly increased to the eighties which is still very low and had to watch for bleeding or excessive bruising. This is why I had the bleeding episode after my tonsillectomy. It is easy enough to get platelet infusions, the tricky part is that they wear off pretty fast sometimes. And the more infusions you get the more likely they are to rebound back down faster. I have no experience however with blood clots.(I cant get my blood to clot very well in the first place). so that is about all I can add to the conversation. Hang in there my friend. And hears to some consistency in our blood! Shawn U.