Starting radiation September 2017

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  • FridayYet
    FridayYet Member Posts: 45
    edited December 2017

    Well here I am, 3 months after my multicatheter interstitial brachytherapy still fighting an infection that got down in my catheter holes. It goes away with a round of antibiotics, then comes back a few weeks later. Slightly painful, but more annoying than anything. Next step is an infectious disease consult and IV antibiotics. Ugh.


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  • deedledee
    deedledee Member Posts: 63
    edited December 2017

    (((FridayYet))) Keep fighting one step at a time. This journey is certainly full of unexpected surprises and not in a fun way. My surprise has been continued fatigue and some depression. I have been seeing a lymphedema PT just for managing the risk. It's really made a difference. She's also been working on the scar tissue under the lymph site. I had no idea there could be relief and help for what I thought was normal effect and would just have to live with the tenderness for a few years. The radiation really did a number on me there. I highly recommend seeing a lymphedema PT even if it's to learn MLD and how to take care of yourself given our risk. Hope you feel better real soon.

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  • VLH
    VLH Member Posts: 1,258
    edited December 2017

    I'm sorry to learn of your complication, FridayYet. When I developed a nasty infection related to having a seroma at my sentinel node biopsy site drained, I got a PICC line and was able to administer my daily IV antibiotics at home. Keeping the site dry during showers was a bit inconvenient and I had to sleep on the "wrong" side; however, compared to a 45 minute drive to the specialist's office every day, it was a good solution. Good luck!

    Lyn

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  • FridayYet
    FridayYet Member Posts: 45
    edited January 2018

    Thank you Deedledee and VLH. I was out of town over Christmas and am just getting back to the forums.

    Tuesday I am scheduled for an ultrasound guided aspiration trying to get some fluid out for testing so we can figure out exactly how to treat it. Both my BS and my MO think it could just be a severe radiation reaction with some fat necrosis surrounded by inflammation OR it could be an infection. No use slamming me with random antibiotics if they can't identify an organism to treat. So keep your fingers crossed that hey get a good enough sample to test!

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  • shelabela
    shelabela Member Posts: 584
    edited January 2018

    Welcome to 2018! Let's hope we all start to heal this year!

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  • deedledee
    deedledee Member Posts: 63
    edited January 2018

    Clink (with organic sparkling apple juice). Good health and happiness to all!! Certainly happy to have 2017 behind me.

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  • carmstr835
    carmstr835 Member Posts: 388
    edited February 2018

    HI everyone. I thought the radiation experience was overwith. However, I have had severe chest pain and hospitalized back in November, just before Thanksgiving. ABout 1 month after my radiation treatment was completed. I had a fever and severe pain could not lie flat it caused severe pain. In 2 1/2 days the pain and fever went away and I was discharged. No diagnosis. They did see a new lesion in the upper lobe of my right lung. My right side was radiated as well as my sternum and collarbone and underarm because of the positive and extrnodal extension of my lymph-nodes on the right side. Nothing was done. I had another episode a few days later, but assumed it would just go away. And it did. They followed up with a pet scan that was negative (lesion was small, only 9mm) and cancer marker tests, also negative. They wanted to follow up again this past week and the CT scan showed opacity and my RO says it is pulmonary fibrosis due to radiation damage. This new diagnosis obscures the ability to see the previous lung nodule (actually there are 2 nodes now, they missed the 2nd one -it was visible in the CTscan from November.)

    My question is

    has anyone had such an experience with radiation damage? I am thinking I might want to see a pulmonary specialist to get to the bottom of these lung nodules. I have had 3 lung CT scans

    one in May (no evidence of nodules or lung issues )

    one in November (found the nodules)

    one in Jan (diagnosed the pulmonary fibrosis, but obscured visibility to the nodules)

    The current plan is to rescan in April. I think that is way too long to wait to see ifthe nodules are growing.

    ANyone have any suggestions?




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  • Anna-33
    Anna-33 Member Posts: 192
    edited February 2018

    Unfourtenately I have heard about other women with fibrosis after rads. I feel episodes of «heavy breathing», but nothing is found on my earlier scans...

    I am feeling pain in the radiation area now, months after rads...Anyone else?

    Waiting for a new CT-scan?

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  • shelabela
    shelabela Member Posts: 584
    edited February 2018

    i would all for a specialist to test. I've also heard of some getting sick months after. Keep us posted and thoughts are with you

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  • deedledee
    deedledee Member Posts: 63
    edited February 2018

    (((Hugs)))) September 2017 Rad sisters. I pray your healing gets better really soon. I had some mild breast and trunk lymphodema but they got right on it. Still doing mld and watching it. Last appt just a couple weeks ago. I think of you all often.

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  • SuzyFL
    SuzyFL Member Posts: 29
    edited February 2018

    Hi Sept Rad sisters! It's been a while since I have been here. Went to my 3 month post-radiation appt today to make sure all is good with my skin and I am healing nicely. My Dr ordered my next mammogram and ultrasound. Has anyone had one since their radiation treatment has ended? I am nervous! I will probably make the appt for Feb or March (I think it's supposed to be 6 mo after radiation is completed?). So nervous but will be looking forward to getting it done so I can have that feeling of relief afterwards if all is ok. I hope you are all doing well and hanging in there! Remember, Feb 4 is World Cancer Day!

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  • shelabela
    shelabela Member Posts: 584
    edited February 2018

    I did not have to have another one. Defiantly won't miss that

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  • shelabela
    shelabela Member Posts: 584
    edited April 2018

    hey lovely ladies, how has everyone been? What are your plans for summer coming to take care of your "new" skin? I was told not to get any sun on that area, well dang they radiated my whole left chest area. Guess i better buy stock in sunscreen

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  • deedledee
    deedledee Member Posts: 63
    edited April 2018

    Good to hear from you Shella. I almost said Hi in the post last week, but didnt know if you would remember me. I am going to use sunscreen but no paba. Have used baby sunscreen with zinc oxide. The zinc oxide for sunblock is supposed to be better for us. Have you had a mammo since first diagnosis? I have not though its scheduled for June. Kind of worried about squishing the Bc breast. Still somewhat tender at times

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  • shelabela
    shelabela Member Posts: 584
    edited April 2018

    i remember you. Comment in the other posts.

    I had a BMX, so i never have to have one again.

    I will get some baby sunscreen, that's one thing i never thought of

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  • deedledee
    deedledee Member Posts: 63
    edited April 2018

    Have a wonderful summer. This year has to be better than last year.

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  • Anna-33
    Anna-33 Member Posts: 192
    edited April 2018

    Wow... it is nine months since I started this tread. The only new thing here is that I am included in the Pallas trial... Hope you all are doing fine?!!!

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  • deedledee
    deedledee Member Posts: 63
    edited May 2018

    Glad to hear it Anna. What is the Pallas trial?

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  • Anna-33
    Anna-33 Member Posts: 192
    edited May 2018

    My prognosis is not very good because of progesteronenegativity and lots og positive lymphnodes.... So I am happy to join a trial even though it is lots of sideeffects. They give me a palbociclib (cyclondependentkinase inhibitor) for 21 days and then 7 days break... The goal is to do this for 2 years... Hopefully it will better my prognosis...

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  • deedledee
    deedledee Member Posts: 63
    edited May 2018

    I am very happy you found the trial. Sending positve vibes your way and thinking of you.

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  • shelabela
    shelabela Member Posts: 584
    edited May 2018

    glad the trial should help. Keep positive thoughts for you.

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  • MamaOz
    MamaOz Member Posts: 432
    edited May 2018

    hi Shelabella! Hope you and all the others are well

    I like you had a BMX no recon.. im doing ok with my inserts.. was just looking at swimsuits...

    Hope your doing ok with the hormonal treatment

    Im on arimidex so tolerating hoping my bones hold up

    Have you had any scans since finishing? My drs say no but its tough assumming alls ok. If you know what I mean.

    Good to hear from you!

    Mamaoz

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  • Canela
    Canela Member Posts: 26
    edited May 2018

    Hi everyone! I had my reconstruction a couple weeks ago. Haven't even thought about summer skin care this year...I need to get on that baby sunscreen. I've always been obsessive about sunscreen use because of my pale skin (I was concerned about skin cancer, go figure), but I hadn't considered changing brands because of ingredients.

    I'm also on the pallas trial but was put in the control group, so just aromasin for me.

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