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After Radiation

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Comments

  • FireKracker
    FireKracker Member Posts: 5,858

    GmaF.your drs dont know shit about the LE...none of them do unless they are a LE specialist and they are so hard to find......a good one will not argue with you but help get it under control.I went to 4 different Lana LE therapist...even with having stage 0 i had lots of problems.I know you remember that...I complained all over the board but i found one that made it last on my list of problems.I wish you find one.

    I did get your pm and i answered you.

    Carolyn thank you for your help.......

    I told you ill be watchin you!!!!!!!!

    grannydukes

  • Alicethecat
    Alicethecat Member Posts: 77

    Hello ladies

    I finished 12 rounds of radiation on November 1 2012 so I do know what it is like trying to recover...

    Very sorry to hear some of you are feeling down and tired. From what I can remember about my recovery, that unfortunately seems par for the course for a bit but...it does get better!

    In case this is helpful, what I found was that every day for a month or so, I seemed to get fatigue that lasted for about two hours. Had to lie down straightaway and rest. Then it disappeared.

    It used to start at 2pm every day, then 3pm, then 4pm, 5pm and so on. After about a month or so, if the fatigue happened, it must have happened overnight because I didn't notice it anymore.

    Pleased to say that I don't get fatigue much at all now - and if I do it is for half an hour, no longer than that.

    Hope you are not expecting too much of yourselves!

    Happy healing.

    Alice

  • gmafoley
    gmafoley Member Posts: 5,978

    AliceCat, thanks for the encouragement - unfortunately, I'm going on almost 2 years post radiation and the pain didn't get better and the pain management doc is suggesting an implanted stimulator to help with all the nerve pain.. I can't afford the surgery even if I decided to go that way and get off all my pain meds so maybe the brain fog would go away.. 

    Don't get me wrong, it makes me happy that some of us are lucky and feel better everyday.. not working for me... Smile - I try to smile. Today, I'm not.Undecided

  • new2bc
    new2bc Member Posts: 254

    Hi everyone,

    I have been reading your forum for a while. I understand that some of you are suffering greatly after your diagnosis. I hope all of us will have enough strength to continue this long journey. I have a favor to ask anyone of you to give your honest opinion. I understand that we do not have a crystal ball to know exactly what will happen in future. I am in a dilemma where I can not decide if radiation will benefit me or harm my other organs such as heart and lung. I asked my question a week ago under another forum but nobody answered me. Here is my situation:

    I was diagnosed with 3 different areas of cancer (IDC) plus an area of pagets disease in my left breast. The largest tumor was 9mm. I am stage 1b grade 2, ER+, PR+, HER2-

    They did SNB which was clear and 2 lymph nodes were taken from my left underarm which were clear. My oncologist did not recommend chemo. I had double mastectomy with no reconstruction. I met with my RO and he suggested I do radiation for 6 weeks because I had scattered areas of cancer + pagets on the left breast. The radiation is not going to involve my underarm. I get scared sometimes when I read that it can cause damage to my lung and heart. I asked my RO and he said that is why he is doing a CT scan to map out where things are. I also asked him if the chances for lymphedema is being increased because of radiation and he said he is not going to radiate my underarm so that should not be an issue. I just would like to get your opinion to see what you think. I need to make a decision fast. Do you think the benefit of radiation outweighs the complications that may cause? My oncologist did not recommend chemo but wanted me to take Tamoxifen afterwards. Thank you for your help.

    GmaFoley,

    I hope you are feeling stronger now. Hang in there! It looks like you have very good sisters in this forum very concerned about you. My emotions are all over the place. One minute I feel strong. The next minute I am crying in despair. But we have no choice to hang in there and be strong.  

  • ptdreamers
    ptdreamers Member Posts: 639

    new2BC, I would ask what kind of radiation machine they are using. The newer one cause much less radiation damage if any to the heart and lungs. Have your radiologist show you the field they are going to irradiate. Good luck.

  • FireKracker
    FireKracker Member Posts: 5,858

    New to bc....welcome to the best thread there is!!!!!!

    i have a major question for you...you dont have to answer it but to me AGE is the biggest factor

    Like if you are old like me I didnt have to do chemo but i did the rads and it wasnt that bad.I will not take the 5 yr.meds cause of my age BUT if i was younger damn i would hit it with everything i had.

    I finished the rads 3 yrs.ago and started this thread.You should start from the begining and really see these wariors all sizes,shapes and colors and we all did things kinda together.

    And yes i did rads on the left side....Im still goin strong....

    BTW i got a clean bill of health to go to do my stomach surgery.Goin to the surgeon on wed.

    Please keep us posted...We care.

  • new2bc
    new2bc Member Posts: 254

    Hi grannydukes,

    First of all, I am very happy that you have a clean bill of health to do your surgery. I hope it goes very well and you can get back to this forum soon since all the sisters need you. 

    I am sorry I forgot to mention my age. I am 50 years old. I do not know what kind of radiation machine they are using. RO told me that the CT scan will map out where things are. There will be a simulation before the treatment. He said it will take 5 min everyday (M-F) for 6 weeks. Should I ask them any other questions besides showing me the field they are radiating?  

    ptdreamers,

    Thanks for your quick response.  

  • FireKracker
    FireKracker Member Posts: 5,858

    newtobc---you are only 50 yrs old? damn you have everything to live for sooooo if i were you i would listen to your dr.....only if you love him and trust him.We will be here for you to answer any questions.If we dont have the answers we will find it.Most rads machines are very modern now.

    Yes the rads tx.is like 5 min.the max.its like a machine that quickly scans the breast gives it a zap that you will never feel and bingo you are done.....

    ask your RO if you are getting tattoos.i got i think about 5 or 6...another zap 1-2-3 and its done.Some drs, use the magic markers but not mine.I got the real thing.They want things perfectly lined up.

    There is a saying that rads are a walk in the park....yeah for some sistas it was....everyone is different.

    You dont have to enjoy it you just have to show up....

    You can do this and we will be there holding your hand.

    xoxoxo Grannydukes

  • LindaKR
    LindaKR Member Posts: 1,304

    Gma - I know exactly what you mean, pretty much in that same place.  I'm getting a referral to you pain guy!  Excited!!!  Take care and you're in my prayers.  Maybe we can have coffee when I come over for my appointment.  I seem to spend my at home time crying or sleeping or just staring at the wall - so tired of pain, fatigue, fighting for my disability, being disabled...... 

    I'm putting my happy face on now and heading off to volunteer at the cancer infusion center Cool  It actually does help me when I go, puts things in perspective.

  • gmafoley
    gmafoley Member Posts: 5,978

    It will nice to meet you when you come my way.  If you need a place to rest, we have an extra room!  Just let me know.

  • LindaKR
    LindaKR Member Posts: 1,304

    Thank you Gma - are you doing any better today? 

  • gmafoley
    gmafoley Member Posts: 5,978

    I'm trying - we had a young couple from church come for dinner yesterday.. that helped.. Just feel so drugged from the pain meds and if I stay still I feel ok, but soon as I get up to walk it hurts again.. Pain just eats at you and also makes the LE worse - my breast feels like it is the size of a cantalope instead of an orange.. Undecided  Got to stay on top of any pain.. just a bummer. But we do have a little sun coming out at the moment - a break from the rain.. It is really hard to stay positive... 

  • FireKracker
    FireKracker Member Posts: 5,858

    GmaF---- just put 1 foot in front of the other and do what ya gotta do.

    you can do it!!!!!!!yes you can.....

    big hugggggggggg

    grannydukes

  • new2bc
    new2bc Member Posts: 254

    Hi GmaFoley,

    I hope you are feeling better today. I am new to this forum and don't have too much information about every individual sister. But from your picture it looks like you are not alone and have at least a lovely family who could support you.  I am just wondering if you are paying attention to your nutrition these days since pain plays a major part in your daily life. Have you been in pain since you were diagnosed or did it start after the radiation causing lymphedema? I was diagnosed 2 months ago and have been trying to research this disease whenever I can. I came across some videos on youtube regarding how to massage your body if you have lymphedema. If you do a search on "lymphedema massage" on youtube, there are several videos. I don't know if you go to physical therapy or not. Anyway, try to be positive and eat right and look into massaging to see if it helps. 

    I decided to go ahead with radiation 2 days ago. Today was my 2nd treatment. I hope it will work out for me.

  • gmafoley
    gmafoley Member Posts: 5,978

    Thank you new2bc.. Let me share some background on me and share a few tidbits with you.

    You have to watch which utube video you watch.. If you want info on lymphedema go to: http://www.stepup-speakout.org/ and go to the Lymphedema topic here - GRRRRR....I hate LE is a good one for information... I have been to a licensed LE therapist and he taught me the MLD - Manual Lymphatic Drainage technique.. I do it every night.  I also have started the Lebed dvd - lymphatic exercise. but I have to watch it and do only a few minutes for now.  I've done every thing I can that I know of... My LE is in control, but any slight swelling in my breast and the nerve pain gets worse, hence the walking issue.. I walk, i tend to swell and then the nerve pain gets worse..  

    As far as nutrition, our oncology center makes you go to an onc. nutritionist.. so I doing every thing I can there too..  

    The pain is just part of my daily battle with post-BC and I can only do what I know to help. Right now, I made a promise to my DH not to jump off a bridge.. I don't break my promises.. 

  • new2bc
    new2bc Member Posts: 254

    GmaFoley,

    It looks like you already know what you are doing. Thanks for the information you gave me regarding the dvd. I will look into it further. Is Lebed DVD also good for preventing LE? My oncology center did not provide me with any information regarding nutrition. I have tried to find information here and there. For example, adding tumeric and black pepper to your food is good for inflamation and cancer.  

  • FireKracker
    FireKracker Member Posts: 5,858

    New 2bc--you gotta go to the I HATE LE THREAD...

    Binney and Kira are the best of the best when it comes to anything with LE.

    They have all the answers and will help u step by step.

    but come back and tell us what is goin on.

    We do care

    hugggggggggggs grannydukes

  • gmafoley
    gmafoley Member Posts: 5,978

    Sleep study is in:

    The Primary doc sent me a message that my CPAP should be set at 7cm H2O. That is all he said. They sent me the report, thank goodness! 8-[ 

    What that actual report said:

    "This patient had a severely disturbed sleep secondary to OSA and Hypopneas associated with oxygen desaturations...."
    Hey - I don't see anything that puts me mild or severe - does this statement above put me as severe? 8-[ 

    AHI was severely increased at 53.5 events/hr
    AHI during Stage R sleep was 66.0/hr
    AHI supine was 84.7/hr
    Minimum oxygen saturations during sleep - 79% - mean was 92%

    Once CPAP therapy was initiated AHI was decreased to 7.1 events/hr with most respiratory events being central apneas occurring sporadically. Oxygen saturations remained above 90% once therapeutic pressures were reached... There were central apneas on the high CPAP pressures."

    There was also a note that my pressure should be set a the 7cm H2O but if increase is needed, I should be closely supervised to confirm that central apneas do not disturb sleep.

    I have found the APAP when I wake up has been above 7 at 11-15. Is that why I feel so rotten in the morning. :-k 
    At least I know now I know..

    Stages for diagnostic part:
    N1 19 minutes - 13.2%
    N2 54.5 minutes -38.0%
    N3 50 minutes - 34.8%
    R 20.0 minutes - 13.9%

    Total sleep time - 143.5
    Sleep Efficiency - 67%

    Sleep Latency in minutes - 14.4
    Total Stage Changes ( After sleep onset ) - 84
    Awakenings (after sleep onset) - 21
    WASO - 56.1

    REM Periods - 1
    REM Latency in minutes - 165.5
    REM Latency less wake time in minutes - 117.5

  • walley
    walley Member Posts: 195

    GMA foley  Sounds confusing to me :)Glad you got your results.Good luck!

  • gmafoley
    gmafoley Member Posts: 5,978

    Walley bottom line - Use my CPAP or bad things can happen.

  • Kay-in-NH
    Kay-in-NH Member Posts: 9

    Hi new2BC - I'm 54 years old, had a lumpectomy on my left breast for a 1.2 cm tumor and 6 nodes removed (all clear, thank God).  I didn't undergo chemo, but on account of that, the Doctors including an expert at Dana Farber in Boston all agreed that radiation was a must!  I too had a CT scan and mapping, and asked to see the computer simulation where it clearly showed how the radiation beams were customized so they grazed over the very top part of the left lung, but missed the heart.  I tolerated 8 weeks including a 5-day boost of radiation extremely well, the fatigue lingered for about a month, and then went away.  My chest muscles felt very tight from the radiation (the Doctors say this is a normal side effect), and so I stretch out my arms periodically to keep the muscles limber.  I viewed Radiation as a small inconvenience but a VERY GOOD LONG TERM INSURANCE Policy.   I take the same view with Tamoxifen, and the damned hot flash side effects.  I know of a co-worker here in our office who had a similar situation as you (mastectomy, but no radiation), and I'm sorry to say that after 5 years, she developed another malignant tumor.  She had that removed, and is now undergoing radiation, and regrets that she did not undergo radiation during her first episode.  Hopefully, this will help with your decision.

  • new2bc
    new2bc Member Posts: 254

    Hi Kay-in-NH,

    Thank you so much for your response. I have started radiation and I am in my 2nd week. After this, I will try Tamoxifen. I really appreciate you sharing your experience with me. Did your coworker take tamoxifen or AI after the 1st diagnosis?

    Grannydukes,

    I don't know if you already had your surgery or not. I hope you are doing fine. You are one strong lady. We need you back!   

  • walley
    walley Member Posts: 195

    grannydukes    How ya doing?Hope you are feeling better:)

  • gmafoley
    gmafoley Member Posts: 5,978

    Walley - not sure but Granny is having surgery soon - she had her preop yesterday?  - she said she would peek in when she can.

  • walley
    walley Member Posts: 195

    GHma foley        thanks ,I was thinking of her.Thanks for the update:) have a good weekend.

  • FireKracker
    FireKracker Member Posts: 5,858

    My surgery is March 12th.

    went to internist and she did not like my cardiogram.now i have to go for more test with a cardiologist or she wount give me medical clearance.

    bummer.

    Ill keep everyone updated.....

    I think i need some prayers too.

    hugggs Grannydukes

  • gmafoley
    gmafoley Member Posts: 5,978

    You got prayers. If you want I will put you on the prayer chain at my church.

  • FireKracker
    FireKracker Member Posts: 5,858

    Yes i want to go on any prayer list i can get on.Thanks GmaF.xoxoxo

  • torigirl
    torigirl Member Posts: 748

    Granny...have you on my prayer list...as I do everyone of you..

    A very hectic last few weeks...I feel overwhelmed, but I hate to complain because things can always be worse...so, just sucking it up

    and doing my thing...

    new2bc-granny is right...we will be here for you every step of the way...you are stuck with us!  :)

    Tori

  • walley
    walley Member Posts: 195

    grannydukes   sending prayers :)Will be checking in to see how you are doing

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