Wish I had never,never done rads, DEEP REGRETS

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  • sdianel
    sdianel Member Posts: 49
    edited October 2017

    Update: Radiation in May 2017. I am still on pain medication after 4 months. (one at night to sleep). Breast is still swollen, hot, and very sore but not so red anymore. Now skin is turning brown and has the "orange peel" look mentioned in radiation dermatitis descriptions. Infectious Disease Doctor dismissed me and said no more pain med prescription. So during the next month I will make an appointment to go back and see the radiologist. I'm going to ask for a different one. Maybe one that 1) will admit that radiation dermatitis exists and 2) knows what to do about it. Remember the first radiologist just kept saying "we never see this" Have done my own research (thanks in part to this forum). I found that some people are genetically predisposed to have radiation side effects. Has to do with connective tissue disorders among other things. I am recently trying vitamin E and L-Arginine supplement (which is supposed to increase circulation in extremities) and using Cocoa Butter with Vitamin E cream 2x daily. If that doesn't help, when I go back to the radiologist in November, I will ask for a prescription for Pentoxyfylline and ask for a prescription cream for pentoxyfylline and vitamin E combined. I am also considering hyperbaric chamber treatment but the research says there is no evidence it helps unless there is an open wound. It does help lymphedema. The problem is that the treatment center is quite a drive and I'm not sure I'm up to it because of the pain. My soreness is near the scar, under my arm and around into my ribs. At night when I turn over it wakes me up and I can't go back to sleep without a pain pill. I can only wear a bra for about 2 hours and it still hurts when I take the bra off. I do not want to continue on pain meds. I want to feel better. I've had severe soreness for 4 months. The NP in Infectitious Disease said it could take up to 6 months to resolve. I found online that chronic radiation dermatitis could occur or last for 10 years!! I would not have had the radiation if I had known this.

  • edwards750
    edwards750 Member Posts: 3,761
    edited October 2017

    You guys have been through and are still going through hell with radiation. I'm one of the blessed ones - at least for now. I had minor burning and fatigue that's it. I do know however, that lung scarring among other things, can show up years later.

    I recently went to a clinic for minor back pain. The PA said one of my lungs was not totally clear so she ordered a chest X-ray. Blood test showed negative for pneumonia. Chest X-ray showed lung nodules everywhere even in the clearer lung area which is in the area where my BC was and radiation administered. 33 treatments. She said it could be scar tissue but didn't know of course. She wanted me to go immediately to the cancer clinic because they had my records. I said I would wait for the radiologist's report. She didn't like that and said the Radiologist would agree with her. She sent the X-rays to the Radiologist who said the chest X-ray was normal and no evidence of any lung issues.

    My internist didn't seem concerned. I fully expect lung scarring from the radiation. Btw that's the only thing the RO shared with me as far as risks. I was told they were doing a better job of radiated only targeted areas.

    None of you deserve what has happened to you as a result of radiation. It should have been your choice of course but based on all the information made available to you and then you decide. I bet a lot of women would have opted out if they had known.

    Diane

  • marijen
    marijen Member Posts: 3,731
    edited October 2017

    sdianel - I sent you a private message.

  • Artista928
    Artista928 Member Posts: 2,753
    edited October 2017

    I posted this in the Femara thread regarding the importance for putting your profile public ESP FOR NEWBIES!

    I have no idea how people think they will be found out by filling out their profiles with a user name of "fish" for example leaving out location. So that doesn't fly with me. They are being disingenuous and if giving advice, unethical. Newbies do not know age matter, stage matters, ER, Her 2, etc. I know I didn't. But someone here told me to look at profile when taking in any advice. It sounds so logical but when you are a newbie, you are reading typically the negative posts like se's and not paying attention to any of us who didn't have such a bad time whether on chemo, rads or meds. I would love for someone who refuses to put their profile up to explain to me how they may be found out if they post like what I said above. I'm waiting......

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2017

    artista

    I agree with your post, but there are a host of reasons why people don't want to publicly post their dx and that needs to be respected. I think it is limiting for the poster and those responding, but it is their right to choose what to disclose.

  • macb04
    macb04 Member Posts: 1,433
    edited October 2017

    sdaniel, I had considerable improvement in the insane tightness and boot leather like skin after I had done the HBOT/Fat Grafting/and continue onward with the Pentoxifylline (400mg/tab three times per day and Vitamin E 400IU/cap three times per day) oral and Topical Compounded Prescription Cream (Pentoxifylline/Vitamin E 5%/1%) It took YEARS to get to the point where I was not activelly and continuously suffering with pain from the Radiation Fibrosis. I can not honestly say whether one particular thing helped, or whether it was the synergy of all those things in combination that finally worked. I do know that it all impoverished me, my husbands insurance hardly covered all of that.

    edwards750, I hope you stay well in regards to your lungs. Crucial to have easy breathing.

    arista, you are entitled to your view, just as I am entitled to mine. Enough said.

  • Artista928
    Artista928 Member Posts: 2,753
    edited October 2017

    Yep, indeed, enough said. Newbies, please look at profiles when taking in advice. You want to find people who are close to your own profile to connect with.

  • edwards750
    edwards750 Member Posts: 3,761
    edited October 2017

    Thanks mac - no issues with breathing thankfully. Allergies are brutal though and nothing seems to help except Benadryl. Constant sneezing and watery eyes. Internist told me to start wearing a mask when I mow the lawn. I exercise in some fashion every day.

    Diane

  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2017

    I took my dx and treatment off because of outbrain. I choose to tell people on a post when they ask. Also I will pm more details if anyone asks.

  • macb04
    macb04 Member Posts: 1,433
    edited October 2017

    This thread is a place for me to tell the real, miserable toll extracted by the radiation fibrosis, the poor care I received. Those who did well, that is just lovely for you, but your good fortune does nothing to alleviate my suffering. You may not realize that you are rubbing salt into a miserable, painful wound every time you come here and say how great and marvelous it's been, that you recovered with no problems what so ever, ect, ect, ect. Do you mean to be cruel? Why don't you start your own thread saying all that, instead of coming here? Get it, the title of this thread is Deep Regrets, not GLAD THEY FRIED THE LIVING CRAP OUT OF ME!



  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2017

    sorry macb, I like to come here to keep in touch with you. I am thankful for your warning to others about radiation. Nothing was ever disclosed to me; radiation was suppose to be a breeze. But, I did suspect when consulting with plastic surgeons, some would simply not work with radiated skin.

    The industry seems to want to silence any of the negatives of treatment. For me it was the hormone treatment and my permanent side effects that came with treatment.

    Because of your case I will never do radiation not worth the risk.

  • CanadianMichele22
    CanadianMichele22 Member Posts: 3
    edited October 2017

    My heart goes out to you. I am so sorry you have suffered these traumatizing effects. Couldn't they have stopped at 18 or 20?? Surely the damage was evident then. This breaks my heart.

    Michele

  • macb04
    macb04 Member Posts: 1,433
    edited October 2017

    Thank you Meow13 and Michele. I really appreciate your kind understanding. I get so frustrated by the ones who lack empathy, they should walk a mile in my shoes before they callously dismiss my situation.

    Meow, you are right, that the bc industry supresses the true extent of serious, negative long term effects that we never were warned about, and that we are haunted by every day..

  • runor
    runor Member Posts: 1,798
    edited October 2017

    Macb04, I only had 16 radiation treatments, but I think I'm toast. It seemed to really irritate the lymph system, which settled down a few weeks after rads. But now? Things are getting bad and I think I have lymphedema in my arm, armpit, shoulder blade, breast, side and ribs below my breast. I cannot lay on my side at night, it feels like I'm laying on a rope! Hub can't rest his arm across my side, it hurts! My rings leave dents in my fingers and that never happened before. And my bra band bites me. I wake up in the morning feeling swollen and it only gets worse as the day goes on and it hurts! Not, oh my god I'm going to die, hurt. But just a steady, dull ache that worsens as the day goes on. It's hard to be normal and active when I worry that everything I do (raking, digging, splitting firewood, shovelling) is going to flare it up.

    Add to that the joys of tamoxifen ( leg cramps, hair loss, hot flashes, night sweats, vaginal mud bog, oh and a bladder that seems to have lost all elasticity and now I'm a dripper, god forbid I sneeze!) And people ask me how I am. I don't even think that's the right question anymore. Not HOW I am, but WHAT I am. I am what's leftover after you've been terrified, poked, injected, cut open, sewed up, x-rayed 15 different times, radiated and hormone blocked. Do I look fine? WELL I'M NOT! I'm freaked out and nothing is the same anymore and it hurts to move my arm and feels like I walk around with a rolling pin lodged in my armpit, pinched, to keep it in place. Only it's swelling.

    And then there's this damn cough! The rad onc said my lung is ' crackling'. You mean as in roasted?

    Somedays I try to get my big girl panties in order and get on with life. Other days I just want to fall in a heap and cry because ... all this for continued uncertainty and fear about the future? I got off easier than many. I did not have chemo. But the terror train that we all board when we get the phone call saying " There is something on your mammogram that we want to look at again.." No one gets past that without being changed forever. This is just nasty shit.

  • hugz4u
    hugz4u Member Posts: 2,781
    edited October 2017

    runor. Oh dear your body sure has been insulted. It's so not fair.

    What your describing sure sounds like lymphedema.please post your concerns on the lymphedema thread. you say it gets worse as the day goes on. That's typical, because morn you will be less swollen as day progresses you are more active and gather fluid that can't drain out properly. We have solutions that can help you feel so much better.

    There is some relief if you take control of lymphedema otherwise it can get worse and cause more problems than what you have now. Splitting wood and heavy chores like that would make it worse.no tight bra bands or rings. This can cause fluid to back up making swelling. You need to get the swelling down and to stay down. Please do post on our thread.

    Try a extra tight Cami to see if that gives pain relief. Try to wear it as much as you can. I wear one two sizes smaller and it helps contain the swelling.

    You also need to see a well qualified lymphatic therapist who can evaluate you and get you back into feeling better by teaching you what you need to know.

    Edited. Oh I just saw you posted there in aug and got no response. Sorry. Summmer time the thread can be a bit slow as we're busy gals. Do post again. I'll watch for you! Take care

  • JuniperCat
    JuniperCat Member Posts: 658
    edited October 2017

    Runor, what you are describing sounds so similar to what happened to me... I noticed the same symptoms about five weeks after completing radiation. My surgeon said that I have lymphedema of my breast but no one wants to address the arm issue which, as you describe, is worse during the day and better during the night (could gravity being playing a role here?). A member of this community had recommended that I check out this website:

    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    Also, There is a lot of useful information in the Lymphedema Forum

    https://community.breastcancer.org/forum/64

    I believe that it's easier to manage if you address this sooner than later.

  • runor
    runor Member Posts: 1,798
    edited October 2017

    Thanks, will head over to the lymphedema forum and see if I can find where I need to be. (sometimes finding the right place to post is confuzzling)

  • macb04
    macb04 Member Posts: 1,433
    edited October 2017

    Runor, I am sorry it is so bad for you. Sounds like they fried the crap out of you badly too. I remember asking the RO how many of her patients got Lymphedema after Rads. She tilted her head sideways (like my old half blind dog) and said she didn't know. WTF? How could she not know? It is just counting how many are f*cked up with Lymphedema swelling problems when they come in for their follow-up visits. I think she just didn't want to admit how common it was to have rads cause Lymphedema, so she acted like a moron instead.

    You should go in and get evaluated for Lymphedema and see what they can do to improve your quality of life. I had swelling in my arm, and had treatment for a while, and more importantly learned how to do the Manual Lymph Drainage (MLD) myself. I can tell when it is flaring up as I get this weird aching in my arm. Strangely enough, I have found that using a rowing machine several days per week seems to keep my arm swelling issues at bay, even better than going walking plus MLD alone . Dr. Carolyn Kaelin, a doc who had bc, researched Rowing after BC treatments doesn't cause Lymphedema (she died of brain c, sad...). So hope you can get some help. That is no way to live.

  • runor
    runor Member Posts: 1,798
    edited October 2017

    Macb04, I think I am still in the early stages of trying to notice the patterns that make it worse. For a while it would flare up then ease off a bit. Now there seems to be no easing off. I am trying to figure out if activity (and what activity) worsens or improves it. SO far it seems things like sitting at the computer or crocheting, where my left arm is fairly still at my side, is the worst. Maybe it kinks off lymph passageways. I have no idea.

    I get that ache too. First it feels like the skin on my arm is too small, stretched, tight. A weird sensation although nothing visual at that moment. Those were my first signs back in July. Now it's a puffiness in the armpit / shoulder blade, lower ribcage that never goes away and increased pain in the breast. I have muck more to watch on that site and lots more to learn! I hope I can find a way to self manage it because going for weekly or twice weekly massage is NOT in the cards.

  • macb04
    macb04 Member Posts: 1,433
    edited October 2017

    RUNOR, Is there a gym near you.? I would say go and try out rowing. It really helped me, although I have to admit it messed up my knee a little bit. I also got improvement using a Clairsonic Mia, which is a handheld rechargable facial Cleansing brush. It is made by the Sonicare Toothbrush people. When this torture first began I had cording in my arm, that even the PT wasn't able to get rid of. I reasoned that my Sonicare Toothbrush uses extremely rapid oscillations to get the plaque off my teeth, so why can't a Clairsonic Mia Handheld face brush help sort of "vibrate/oscillate loose" the congealed proteins that occured in cording in my arm? Same idea at work uses shockwaves to break up kidney stones (called Shockwave Lithotrypsy).My PT said no, no studies about it being safe/done before. I just decided, what the heck? PT wasn't really helping completely, anyway. I used the Mia instead of my hands in the same way as I had been trained to do Manual Lymph Drainage myself. I began very slowly, but I could feel the cording popping loose over a few days. My PT was really surprised how sucessful it was. I still use my Mia several days per week when I shower as an MLD aid. I think we need to innovate things thst can help, and share our ideas, because in reality the bc industry is unwilling and unable to acknowledge the true numbers of us women damaged by Lymphedema. They want to pretend it is not so bad, when it is just another horrific and ongoing abuse of our health and quality of life that they have stolen from us.



    Mia 1 Facial Cleansing Brush

    • Mia 1 Facial Cleansing Brush
    • Mia 1 Facial Cleansing Brush
    • Mia 1 Facial Cleansing Brush
    • Mia 1 Facial Cleansing Brush
  • runor
    runor Member Posts: 1,798
    edited October 2017

    Now I want to scrub an egg yolk! This is something I will have to investigate, thanks!

  • marijen
    marijen Member Posts: 3,731
    edited October 2017

    I think I’ll investigate it too, mac

  • macb04
    macb04 Member Posts: 1,433
    edited October 2017

    Thanks KB870, for the reminder to have good form. Its weird, because my knee really bugged me for several months. I was even limping, and couldn't completely straighten my knee. It kind of got better on its own, no rhyme or reason, no change in activity. Really a puzzle, but so glad it got better. Rare for me to have things improve, so I will gladly take it.

    Ha! I didn't even notice that it was an egg in the video bit I quickly copied and posted.

    Here is a very interesting follow-up article about using Fat Grafting in the Axilla to help decrease Lymphedema. They did this study after one patient had good results following Fat Grafting. ( This is the link to thst article too.https://www.ncbi.nlm.nih.gov/pubmed/27151914

    I think this method is just in its very start, they plan to do more research. What seems nice about it it that it seems very safe, and seems to have little recovery involved. Fat Grafting is currently used all the time with Breast Reconstruction. Seems like it worked for half the women, and didn't cause any negative side effects. This is a more promising treatment for Lymphedema than anything else currently available, as far as I can see . I know that there are Lymph node transfer procedures, but that is worrisome to me because it could damage Lymph flow at another area.

    Cell-Assisted Lipotransfer Using Autologous Adipose-Derived Stromal Cells for Alleviation of Breast Cancer-Related Lymphedema.

    https://www.ncbi.nlm.nih.gov/pubmed/28653440

    Treatment of Breast Cancer-Related Lymphedema with Adipose-Derived Regenerative Cells and Fat Grafts: A Feasibility and Safety Study.

    Toyserkani NM1,2,3, Jensen CH2,4,5, Andersen DC2,4,3,5, Sheikh SP2,4,5,6, Sørensen JA1,2,3.

    Abstract

    Breast cancer-related lymphedema (BCRL) is a debilitating late complication with a lack of treatment opportunities. Recent studies have suggested that mesenchymal stromal cells can alleviate lymphedema. Herein, we report the results from the first human pilot study with freshly isolated adipose-derived regenerative cells (ADRC) for treating lymphedema with 6 months follow-up. Ten BCRL patients were included. ADRC was injected directly into the axillary region, which was combined with a scar-releasing fat graft procedure. Primary endpoints were change in arm volume. Secondary endpoints were change in patient reported outcome and safety. The study is registered with ClinicalTrials.gov (NCT02592213). During follow-up, a small volume reduction was noted but was not significant. Five patients reduced their use of conservative management. Patient-reported outcomes improved significantly over time. ADRCs were well tolerated and only minor transient adverse events related to liposuction were noted. In this pilot study, a single injection of ADRC improved lymphedema based on patient-reported outcome measures, and there were no serious adverse events in the 6 months follow-up period. In addition, half of the patients reduced their use of conservative management. ADRC therapy is a promising interventional therapy for alleviating lymphedema, but results need to be confirmed in randomized clinical trials. Stem Cells Translational Medicine 2017;6:1666-1672.

    © 2017 The Authors Stem Cells Translational Medicine published by Wiley Periodicals, Inc. on behalf of AlphaMed Press.

    KEYWORDS:

    Adipose-derived regenerative cells; Fat graft; Lymphedema; Regenerative medicine

  • marijen
    marijen Member Posts: 3,731
    edited October 2017

    Runor, I noticed you said you wouldn’t go to LEPT twice a week. I just want to point out that doing MLD yourself is not as efficient as someone experienced with lymphedema massage and the therapist has two hands to work on you, you would really only be able to use one of yours. It’s important to get the swelling down and the toxins moving out before the tissues get damaged and make things worse. I only went once a week and I was better each time. Mine was pretty bad. It tooka total of 15 visits to get it almost back to normal. That was over several months. Is there a reason you can’t do that? Insurance or work? Just trying to help you.

  • marijen
    marijen Member Posts: 3,731
    edited October 2017

    Thanks KB - well maybe hers isn’t as bad as mine was. That’s too bad, however, living in the country is less toxins? Or not?

  • runor
    runor Member Posts: 1,798
    edited October 2017

    Hi Marijen! I don't think my lymphedemon is as bad as yours (my new word for it, cause it's evil). Looking around on that website and learning more exercise and massage techniques do seem to have helped. I am also finally noticing a pattern of what makes it better and worse. Moving is better. Concussive force, like chopping wood, is worse. I can do hard work, just not hard jarring work. Sitting and crocheting or computering, anything that keeps my arm still and at my side, is worse.

    KB870 is right, I live up a mountain and getting to town in winter conditions is dicey. I only know of one lymphedemon therapist and KB870 was right again that the wait list to get in is months. There is likely no way I would ever be considered for weekly treatments considering that my situation would not be considered as acute as others.

    Having said that, I am a little concerned about the constant pain I'm in. Not oh-my-god pain, but just an annoying ache, mostly in my armpit. It is puffy under there. And sore and yucky. So my knowledge of what worsens and improves this, how to manage it is getting better, I think. But it seems in the last couple weeks the lymphedemon itself has gotten worse.

    I am not against going to see a specialist but know with our Canadian system, and being rural and remote, NOTHING happens fast. Nothing.

  • Carrye
    Carrye Member Posts: 43
    edited October 2017

    I had your same experience but no regrets. 5 years cancer free. I expected to be burned to a crisp. And was. Physical therapy was needed after surgery and rads. Long term side effects are not minor. So hard to know how to assess costs and benefits. Cut, poison burn...still our unfortunate choices. Best to you moving forward.

  • macb04
    macb04 Member Posts: 1,433
    edited October 2017

    Hi Carrye, I am still permanently harmed by the horrible " treatments " done to me. I will always regret that I listened to those bc industry medical morons. Seattle cancer care alliance (SCCA) was just awful to deal with. They were frequently thoughtless and casually cruel. I will never forgive them, and I will never go back.

  • sdianel
    sdianel Member Posts: 49
    edited November 2017

    update on my radiation side effects. This week severe pain in ribs and around back to spine. Cant take deep breath and hurts when I move. Have appt tomorrow with different Radiology Oncologist and appt next week with surgeon. Online research says possible pleuritis. Still concerned about Inflammatory Breast Cancer. Maybe surgeon can answer that question. Cancer Center where I’m being treated has no ER and doctors don’t seem to have admitting capability at area hospitals. I didn’t not want to go to ER at a hospital that doesn’t treat radiation side effects! Out of pain meds, can’t take ibuprofen and in excruciating pain! Tylenol not helping!!

  • macb04
    macb04 Member Posts: 1,433
    edited November 2017

    Did you finally get some help for your pain sdianel? I hope you are finally feeling better.

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