Pain in recurrence location

[lolam]

I finished my treatments for recurrence in the lymph nodes in my neck and chest in April 2003. Been on maintenance herceptin every 3 weeks since. I get painful spasms in my neck. I told the onc. about it and he said I probably turned my head wrong. He didn't even want to talk about it, dismissed it entirely. I didn't connect the timing until today. I had herceptin today and spasms this evening. As I remember, I rarely have this phenomenon a week before my next treatment. I wonder if it is possible that the pain is from herceptin killing the cancer cells that continue to congregate at the recurrence site. My onc. did tell me last year that a second recurrence often appears in the same place as the first. I wish I knew if pain indicates that cancer cells are really active. I have never had a pet scan and am wondering if that is the only way one can know if you have a congregation of cells anywhere in the body. Herceptin must be killing them at any rate as I am considered NED. My recurrence was not indicated by tumor markers so the onc. no longer has me on any blood tests. I am having a routine chest x-ray next time. Also, my muga scan went from 66 to 56 in 6 mos. time. I wonder if that will just get lower each time. I really hope that is not the case. Hopefully it just fluctuates for no reason.
I have been reading your posts. I am routing for all of you to see good results from all the treatments you receive. God bless you, Lola

[Lolly]

Hi Lola,
I'm sorry that you don't feel your concerns are being taken seriously; one way I have kept track of symptoms and whether or not there seems to be a pattern is to keep a daily log, especially around treatment time, then I'm able to show it to my onc. I make a list of questions to ask before I go in. Do you have someone who goes in with you? That can help give validity to concerns if they're echoed by your companion.
Hope you can get to the bottom of this, and hope it's not what you fear.
Hugs,
Lolly

[Steph N.]

Lola wrote:
I wonder if it is possible that the pain is from herceptin killing the cancer cells that continue to congregate at the recurrence site. My onc. did tell me last year that a second recurrence often appears in the same place as the first. I wish I knew if pain indicates that cancer cells are really active. I have never had a pet scan

We all want to remain optomistic, but I can certainly see your reasons for concern!
First of all, I wonder about the tumor marker situation with you. I cannot BELIEVE than an oncologist would discontinue any kind of blood tests. There are more than one kind of tumor marker tests for breat cancer. My doc has TWO tests run for me every month. We have found that the CEA is quite accuarate for me, with the CA2729 also a good indicator if I am off all chemo and boosters such as Neupogin.
Have you asked your oncologist just HOW he would recommend checking for cancer cells running rampant other than a new lump? Lumps cannot be easily felt in many organs.
Your pain could be a result of other problems musculo-skeletal. I have those and am learning to discern those and what to do.
I ALSO get spasms in my neck! They come as a result of my deep tendon reflexes toasted by all the taxol and other chemo. I had no mets anywhere near my neck.
Last of all, if you are NOT getting any blood tests, I would insist on a PET scan.
Hope you can get some relief from all the worries and that your doc will not keep pooh-poohing your concerns.