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Pain from lymph node removal

mruczko
Posts: 110
Joined: Jun 2011

Just joined - please, if anyone out there has had the same problem I have, I need your help. Had 6 months chemo, lumpectomy left breast, lymph node removal, followed by radiation. Surgery was last May. I have persistent pain under the arm, spreading down the rib cage and towards the back. Burning sensation under the arm and just plain pain. In March a cyst that had formed under the arm got infected and I had a long incision to remove it, traumatizing an already traumatized area. All the doctors seem to be able to do is to increase my dosage of Neurontin. Got neuropathy as well from chemo in both legs and hands. Finally went to a pain guy who told me I had not reached my "therapeutic" dose of Neurontin, but I feel like a zombie already. He requested a compounded ointment to make up the difference, its very expensive and my insurance refuses to pay. The pain guy suggested a nerve block for the area below the arm pit, but says it's risky to do a nerve block directly under the arm, I might not be able to move my arm or fingers! Please, if there is anyone out there with the same problem, let me know what you are doing to cope. Thank you so much.
Marlene in Houston

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

I do not have the same situation you are asking about but I did want to say hello and welcome. You have come to a good place to have questions answered. I am sure you will hear from some of the sisters who have had the same problem. I am sorry you are going through this and hope you find some relief soon.

Hugs,
Georgia

mruczko
Posts: 110
Joined: Jun 2011

Georgia,
Thanks for your reply and many, many hugs to you too.
Marlene

BMS's picture
BMS
Posts: 127
Joined: Feb 2011

Hi, Marlene. I did chemo, lumpectomy in right breast, more chemo, surgery for an infected incision in my right armpit where the 11 nodes were removed, then radiation. My entire pit area and partially onto the underside of my right arm is completely numb. I have ocassional jolts of pain, which I was told was the nerves regenerating after all of the trauma. I was also told that the numbness may never go away.

As for neuropathy, I had it in both hands and feet. The hands are back to normal but I still have it in both feet, across the toes, and I had finished chemo on March 24. Not sure how long this will take to clear up. It's at its worst in the mornings after lying down all night. I have to sit at the edge of the bed and dangle my legs over to get the blood circulating before I can attemp to walk. Fun times...

Keep posting and shout out with any questions or to vent.

Bonnie

mruczko
Posts: 110
Joined: Jun 2011

Bonnie:
My problem is that it now has been over 13 months since surgery. I was told about numbness never going away and the possibility of lymph edema, but no-one mentioned continued pain. I finally found research on the internet about Post Pain Therapy Pain Syndrome, which describes me down to a T. It gives a number of options for the pain, Neurontin, etc. and discusses Sentinel Lymph Node Dissection, which is less agressive, but my surgeon refused to consider this, because of the nature of my cancer and lymph node removal. So, here I am.... Neuropathy, I attend a support group and this seems to be quite common for those of us who had Chemo. It seems that in many cases it disappears either completely or to a large extend after about 1 year. When nerves regenerate they fire on all cylinders, which I have been told is a good thing..... No, mine is not worse in the morning. For a while I could not hold a pen, this has improved. The right side is better than the left. I am limping slightly on the left. Neurontin helps some. My friend has severe neuropathy, (not caused by cancer), she takes Lyrica, 2 at night, one in the am. Maybe that would help. Isn't it fun? I am doing water aerobics, that seems to help with balance. Take care, my dear
Marlene

cinnamonsmile
Posts: 1042
Joined: Dec 2010

I had a BMX with SNB on 1/11/11. I was riddled with pain that was so severe and thought it was normal until I was well enough to get online and read about other women's experience with post mastectomy pain syndrome/post breast therapy syndrome.I had one occupational therpist for a month last winter, but she was inexperienced with breast cancer patients. I did ok for awhile, not getting any better, but not any worse until April. I have been on 1200 mg of gabapentin per day with vicodin as needed for more acute intense pain. I still can not use my arms normally for everyday stuff, bathing is still hard for example. I have numbness, pain,feeling like I was beat with baseball bat, tingling, shooting/stabbing pain, electric shocks, aching, soreness,sensitive to temps (i can not have the car air conditioning blow directly on my upper arms because it feels like I am being burned),my armpits are numb but can ache so bad (shaving feels yucky and when the hair grows out it feels like I have a cactus under my arms).I finally found a wonderful occupational therapist that I saw today with experience and insights into this problem. July 1st, I see a specialist at the pain clinic, who may or may not have any other ideas. I was told by the surgeon and the occupational therpist that some of these symptoms may never go away, specifically in the armpits and the underside of my arm. Nerve regeneration is not an exact science and varies from person to person. The only thing I know is that in time it may diminish or disappear completely but until then I have to just figure out the best things to do for me now.If insurance denied your claim for the cream, try and have your dr's fight for you on your behalf! And boy do I know about being loopy from the gabapentin (generic form of neurontin). I rarely drive anymore and if I do, I skip my morning dose.Good luck with your treatment, I sure sucks to be left with all this crap doesn't it?Keep in touch and let us now how you are doing!

mruczko
Posts: 110
Joined: Jun 2011

Hi:
I knew there had to be women out there with the same or similar problem. I complained and complained and got nowhere, vague comments like - it will get better with time. Actually I got a little better until I had the infection and cyst removal - a very long scar and I was back almost to square one. No problem with a/c in car, have a fairly good amount of movement in my arm. Did the best I could after surgery with exercise at home. After my year long treatment with Herceptin was over last Nov. I went back to my Athletic Club where they have a number of classes specifically designed for the older adult. Lots of stretching. Also started chair yoga and a few weeks ago the water aerobics. I think this helped with movement. I also believe it helps with pain. No hair problem, nothing grows under the armpit! Will see the pain guy again July 14 and discuss the next step, also my insurance problem. Maybe he will be able prescribe something else. I'd be prepaired to pay out of my own pocket, if necessary, but this ointment was so expensive, I couldn't do it. Next Monday I'll have another PET Scan, so very scared, and then see the oncologist. Trust his judgement and I will ask his opinion on nerve block, I am not sure about this, don't want to have another problem. I strongly feel that the medical profession has not paid enough attention to us. The study found that there is a big discrepancy between complaints by younger and older women. They came to the conclusion it's because older women suffer in silence - well not this old woman! Take care and lots and lots of hugs!
Marlenr

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