After Radiation

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited July 2011

    Granny I love you too and thank you so much for starting this thread.  It has been a fun one.

    gmafoley, I am like Jo and have the burning radiating pain that goes from my SNB scar down into my breast and behind my nipple I have this terrible stabbing pains.  My is also permanent nerve damage from rads.  My BS put me on 25mg of Amitriptyline.  I also take Celebrex for my hip but notice it helps with my breast as well. I cannot go without the prilosec with the Celebrex.  I think Jo takes 50mg of the Amitriptyline.  If it continues you might want to ask them about it.  It is not harsh on your stomach.

    Pennyforyourthoughts-have you heard anything on your test?

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  • jo1955
    jo1955 Member Posts: 8,543
    edited July 2011

    gmafoley - I do take 50mg amitripyline and I got it from a pain specialist.  My RO was such a moron I wouldn't go back to him if someone paid me.  That seems to work really good for me.  It is not addictive but does have a sedative effect so it is taken at bedtime.

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2011

    Sherry and Jo - I'm really sensitive to amitriptyline - it ended up on my allergy list - not sure why but I think I couldn't wake up when I took it... Seemed to remember something about waking up 3 days later?? Any other suggestion?

    I am getting the brush off now that rads are over - It seems they want me to go see my pcp for all my aches and pains even though the rads caused the pain??? I'm so confused on who to ask for things now... 

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited July 2011

    gmafoley- there are some other drugs in the same catagory that you may be able to take one is nortryptiline.  Or you may be allergic to all of them.  then there is neurotin and Lyrica but I think they have more SE than the tryclide drugs do.  I would ask your MO or PCP about it.  Yes it seems most RO's once you are finished they don't want the responsibility any longer.  Go figure, we have long term SE's from rads and they don't want to follow us.

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  • Pennythoughts
    Pennythoughts Member Posts: 81
    edited July 2011

    Gma - I have similar pains going on in my breast and underarm and my doc told me that if it persists and I think I can't handle it, she would put me on Gabapentin - widely used for pain and especially for neuropathic pain. Is anyone else on this drug for the nerve pain?

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  • jo1955
    jo1955 Member Posts: 8,543
    edited July 2011

    gma - Perhaps a referral to a pain specialist is in order.  You can discuss your specific drug allergies and he/she may have some other options for you. 

    I saw my RO once for a "skin check" one week after I finished rads and I have not seen him since - that's okay with me - I really hated that man.  I got my referral for the pain specialist from my BS.  He did most of my testing and referrals to other specialists.  My primary doctor is now writing the refills for the amitriptyline since this is going to now be a life time drug and doesn't necessarily need constant follow up with the pain specialist.

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited July 2011

    Gabapentin is the generic for neurotin.  I know of someone else that is taking it and is doing OK with it.  My husband takes it and in low dosages it works pretty good mixed with a trycyclide, but if you get too high a dosage it makes you function like you are drunk.  The neurlogist said you can't take to much of it, it is a med you cannot overdose on but she failed to tell him that he could have SE's like drunkeness.  I think the biggest SE from it is dizziness and wobleing when you walk.  I know several people that cannot walk a straight like with it. But I do think it is worth a try if you can't handle the pain

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  • Jwatrlily
    Jwatrlily Member Posts: 211
    edited July 2011

    Thank you all for your kind comments and support with my dilemma with my friend.  I did tell her to give me time and space and I've not heard from her since and if I know her as well as I think I do after 55 years, she is out there telling all our friends about the awful, hateful email she got from me.  I know this because it happened this way once before when as kindly as I could, I tried to tell her she could no longer try to look to me for her happiness, and I was careful and considerate with my words and she told everyone that she had gotten the most hateful letter from me.  You can't win with her.  I'm so tried from trying too.

    I'm pretty shook up tonight because I just saw an article about our own Dr. David Servan-Schreiber who wrote "Anti Cancer:  A New Way of Living" passed away Sunday night in his town of Normandy.  His brain cancer had come back in May of last year.  This really shakes me up.  If he, someone who did everything right with diet, exercise, meditation, yoga, etc. could not ward it off for his lifetime, how in the world are we to continue to live?  I mean, he is someone who had the education and knowledge to study this monster and know how to fight it and he still died from it.  I'm just totally depressed!  Sorry to be a downer for all of you.  This just scares the crap out of me that he died.

    Hugs,

    Juanita

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited July 2011

    Juanita I am reading his book right now.  I hate to hear that about him.  Glad you told your friend you need your space and so what if she says things about you that are not true.

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2011

    Juanita.. I haven't read his book but sometimes people that research and write books don't follow what they tell other people... It might not have worked for him...but that doesn't mean it won't work for us...we can only do our best that we know to keep healthy...

    I will pray that your relationship with your "friend" doesn't get blown out of proportion and maybe she will finally have to fend for herself and give you a break... you deserve to heal and not stress..

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  • Sandeeonherown
    Sandeeonherown Member Posts: 1,946
    edited July 2011

    romansma- i know abou tgetting back in to the swing of things full tilt then feeeling frustrated that yo cannot do it rig tnow...I have to remimnd myself that i had two surgeries and radaition and that it is ok if i  feel slower...4 months post heart attack...but soososososo hard!

    Gabbycal- the arm muscle and breast bone and ribs hurt...it has been almost a year for me btut the pain under the arm and along the ribs did not start until after radiation...so doing physio stretching esercises to ehlp untighten it...works.

    jo- thanks for the site on lymphodema...if yours won't work in surigcal units neither will ours:)

    As for boob and rib pain, I am doin gtarget massage...find a spot that hurt, go a bit deper ( I know you don't want to) and hold it there while counting to twenty...then move to the next spot....I hav ehad a lot lett pasin in  the past two weeks....

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  • Omaz
    Omaz Member Posts: 5,497
    edited July 2011
    Hi, I am dropping in again!  Anyone else have a numb breast?  Did I ask that before??  Anyone know how long it lasts?  I can't feel much on the skin especially in the'boost' area.  I finished mid-Feb.  Anyone else?
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  • Maybe484
    Maybe484 Member Posts: 170
    edited July 2011

    Well, I'm officially a member of this thread now.  My RO and I had a long discussion today and have cancelled my boosts.  I did skin care by the book and still got wet desquamation in my axilla, so I'm not doing the happy dance yet.  It hurts too much.  But I'm looking forward to dancing . . . .

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  • Omaz
    Omaz Member Posts: 5,497
    edited July 2011
    maybe - congrats on being done!!
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  • juliet62
    juliet62 Member Posts: 3,412
    edited July 2011

    maybe congrats on finishing, lets hope your skin heals superfast so you can happy dance

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  • sagina
    sagina Member Posts: 1,219
    edited July 2011

    ouchie Maybe484 - I can't even pronounce what you wrote! But I get the picture - so heal fast - and congrats!

    I have a seroma in the lumpectomy area - surgeon says - "you're pretty lucky it fills out the breast nicely"  - but it sure makes all the area super tight so indentation might be nice? lol.  Gotta laugh at men sometimes....

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2011

    Maybe - hope you feel better soon... my RO said it would get worse before it got better - it looked worse the week after but once it started healing...things went fast... 3 weeks out and outside of breast is healed. Now working on the nerve and rib pain.

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  • Mouse6
    Mouse6 Member Posts: 246
    edited July 2011

    Omaz...everyone is different, but I finished radiation last august and I still have many numb areas. But my biggest issue is that I feel like my chest is so tight...like it's baked onto my chest wall...and my muscles ache badly in my shoulder and shoulder blade, and axilla is still so sore. Mind you, when I had my mastectomy, surgeon removed my fascia as well, which I think probably contributed to these symptoms as well.

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  • jo1955
    jo1955 Member Posts: 8,543
    edited July 2011

    maybe - Congrats on being done with rads and hope you heal real soon.

    Omaz - I can't help you but I hope you find some answers soon.  (((HUGS))) 

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited July 2011

    Maybe so glad you are finished and hope you heal quickly and then we can do the happy dance for you.

    Omaz I finished rads the end of Jan and 1/2 of my breast is still numb.  The other 1/2 that I can feel is where I have my permanant nerve damage at.

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  • Omaz
    Omaz Member Posts: 5,497
    edited July 2011
    Thanks - sounds like it's pretty normal to have numbness - I shouldn't complain, so many have more serious problems.  I am still stretching each day and I have noticed that the tightness in the muscles and general area have gotten much better.  My rad onc, who I saw  last week for 1 year checkup said that we won't know how the breast will finally look/feel for at least another year. 
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  • Mouse6
    Mouse6 Member Posts: 246
    edited July 2011

    A lymphedema specialist that I saw last week told me that as a general rule, how you are feeling 2 years post-treatment is a good indication of how you will continue to feel. So...good to know there's still lots of time!

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2011
    Mouse: that is nice to know... called my PCP today being I'm getting the "pass the buck" from all the other oncs at the moment...I need to try something else for the nerve pain, so I can function at work...

    Ok found out today - that my health insurance company can garnish my whole paycheck until I pay back my back dated premiums from when I had my surgeries ... I so wish I didn't need the "lapse of insurance" issue covered... I would quit this insurance.

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2011
    Mouse: that is nice to know... called my PCP today being I'm getting the "pass the buck" from all the other oncs at the moment...I need to try something else for the nerve pain, so I can function at work...

    Ok found out today - that my health insurance company can garnish my whole paycheck until I pay back my back dated premiums from when I had my surgeries ... I so wish I didn't need the "lapse of insurance" issue covered... I would quit this insurance.
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  • FireKracker
    FireKracker Member Posts: 8,046
    edited July 2011

    soooo glad things are moving right along here....another day and still more and or different issues....

    Maybe----glad you are done now...congrats.....

    Juanita my sista---I too am so sorry about Dr.Schreiber.I have read his books and looked at him as some kind of hero...IMO his time was up.In the final analysis it is up to GOD..Yeah im scared too.real scared.we are all.if it can happen too him where do we stand in all of this....CANCER SUKS.....we do the best we can and PRAY.sending you a big hugggggggggg

    Omaz----nice to see you again....sorry you are still havin issues...we finished tx.the same time and i too still feel numb in certain areas of the breast.Under my arm and around the outside of the breast still aches too.And its real sticky under my arm too....

    thinking out loud----this is gonna be the new normal!!!!!!!me no like this.

    huggggggggs everyone....God bless us all fighting this giant monster.K

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  • Omaz
    Omaz Member Posts: 5,497
    edited July 2011
    (((grannydukes)))) Howdy back to yah!!
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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2011
    Guess what Sherry!!! - the PA at my PCP's office  gave me a script for some Gabapentin. She said I shouldn't even be on aleve if it is killing my stomach... and she also gave me some lidocaine patches that i can cut up and put where the pain is... not sure I want to put it on my scar though - but maybe on my ribs where I'm getting lots of pain.. They thought that would work better for when I'm working..
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  • Sherryc
    Sherryc Member Posts: 5,938
    edited July 2011

    gmafoley glad you got something to help out.  I think you will find more relief with it.  In the beginning of my pain I used a lidocain cream that I had left over from rads and it did help.  then my pain dr put me on a compounded ointment that has gabapentin, an analgesic and an anti inflammatory in it.  I have to get it at a compounded pharmacy and I understand it is very expensive but I do have good medication coverage.  It works great.  The lodocain patches should help.

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  • GabbyCal
    GabbyCal Member Posts: 277
    edited July 2011
    Juanita - Thanks for letting us know about Dr. Servan-Schreiber's passing. I hadn't heard the news elsewhere. Very unsettling, but good to know. Just shows again that even if you do everything possible, sometimes it's not enough. I'm still following the advice of his book. His was the single voice I've trusted.
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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2011
    Sherry - so you have the gabapentin as an ointment - not a pill?

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