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Follow up with oncologist and a question about pain.

Posts: 21
Joined: Sep 2012

Hello everyone,
My husband just had his bi-weekly visit with his oncologist and research nurse. Some background: He had his left kidney and part of his bowel removed last December. He has three hilar lymph nodes that are affected and the lymph node on his neck has a 5 cm tumor on it. He is currently on his 9th cycle of Xeloda, Gemzar, and Avastin.
In my previous post, I mentioned he has serious back and side pain and has been seeing an acupuncturist for it every other week. It helps some, but has been progressively getting worse causing sleepless nights and pain throughout most of the day. His oncologist can be vague with the details of how his progress is going in regards to the lymph nodes in his chest, but I think we are responsible for not asking all the right questions as well. So we were questioning if the pain was caused by more cancer.
What he found out today:
Over the course of his chemo, the lymph nodes in his chest have gone down from 3 cm to the largest being only 1.7cm, so they doubt that the pain is caused from them. In regards to if the pain could be a side effect from the Xeloda, they said they have never heard of this side effect. They think that the nerves could be regenerating from his nephrectomy. Has anyone had this same type of pain or heard of this happening?? They prescribed Tramadol after he told them the Tylenol was not working and he did not want to take hydrocodone.
Thanks for letting me pick your brains!

Max Power's picture
Max Power
Posts: 60
Joined: Sep 2012

I have right hilar nodes affected but no pain at all.

I'm not any kind of pain expert, but it seems some oncologists are not either. A friend ended up going to a pain doctor and is amazed at what they come up with and how much they know. They seem to be a special kind of empathetic doctor. If your onc fails to deal with it, you might want to try one.

Posts: 21
Joined: Sep 2012

I had totally forgotten about the pain specialists. Thanks for reminding me!! You are right about the oncs- they have some knowledge, but for the most part they throw out different pain meds and try and see what works. And if that doesn't work, they just up the dose.
Thanks again!

Texas_wedge's picture
Posts: 2803
Joined: Nov 2011

Yes! Do you have the same Statesside as I benefit from in Scotland - when in hospital, regular visits by the specialist pain team on their regular rounds. They helped me enormously with dose alterations and switching of meds as appropriate.

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