Radiation and pain

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Hello! I am about to complete my 23/30 rads treatment today, and thought I would ask what everyone is using for pain control. The skin in my armpit as well as under my breast is beginning to break down, and it stings like a B1+€#! My rads oncologist is very good and has prescribed dilaudid. I am a "non-converter" for morphine - my brain doesn't convert it to an analgesic. She also highly suggested marijuana tea! I've tried marihuana when I had bone pain throughout chemo, and I have to say nothing worked like that did. I also have to say I have tremendous guilt when using this! I am a mental health professional and have spent years trying to speak to youth about the dangers of this plant! This feels different only because it's "doctors orders", but I still have to wrap my brain around it. And also, I just cannot see myself walking into radiation whacked! I've read about the benefits for us in this position but I guess I'm hoping some of you will tell me that it worked for you...and to get over the guilt! If there is anything else that you've tried to get through this mess, please let me know! Also, the cancer that I have is terminal so my doc has told me that I really should get up close and personal with WHATEVER works at this stage of the game. Thanks for reading. :) 

Comments

  • Wildflowers123
    Wildflowers123 Member Posts: 28
    edited June 2014

    Um, ok now I feel like an idiot because no one has responded! I'm so sorry if I've struck a nerve or offended anyone by mentioning the "M" word :S

  • DeliriumPie
    DeliriumPie Member Posts: 1,370
    edited June 2014

    lol wildflowers the pothead. 

    My skin was toast during my last week and a half of rads. Really bad. To get temporary relief, I would soak a towel in Domeboro and let it sit for 20-30 minutes each night. This was actually to prevent infection because the skin was broken, but it felt good. I would then coat everything in aloe gel that I kept in the fridge and let the fan blow on it so I could get to sleep. Is the dilaudid working for you? Not sure how it works in that type of surface pain. Are you having boosts at the end?  I had 33 treatments with the last six being boosts to my scar line. It was amazing how quickly relief and healing came once they stopped zapping my axilla every day. I also used silvadine cream once the skin broke. It was great and I believe what made everything heal so quickly afterward. Good luck pothead girl. I'll still talk to you. Lmao

  • Wildflowers123
    Wildflowers123 Member Posts: 28
    edited June 2014

    Hey thanks for responding! Geez I was starting to get worried. Lol ok, not really.  

    I am the same as you - I have about two weeks left and my skin is a mess. Breaking down everywhere. The armpit is the worst, and Holy Mother Of God does that sting! Also under the breast in the fold...ouch! They gave me flamozine cream to prevent infection, and of course the dilaudid for pain control. I haven't taken the dilaudid yet, but my oncologist assured me the worst is yet to come, so to take it as needed. When I get up (before showering) I've been taking tramadol for the last two days. This seems to be taking the edge off so I can actually shower. After my rads appts and at bedtime I resort to taking a few drags off of a joint. I am not kidding you, this was never my thing...like never, but it really freaking works! Maybe it just takes my mind off of it (?) but I'm not questioning it...it just works, so I'm going to assume God is answering my prayers about "no pain" haha. 

    To tell you the truth, with all of us going through cancer, I thought I would get a hell of a lot more replies to my post! I guess it is still something that is taboo to talk about, but shit, it was my radiation oncologist who suggested I give it a whirl! Crazy. 

    Anyhow, thank you for responding. Made me feel better :) It looks as though we both have a tough road ahead, so I wish you many blessings on your journey here on in. 

    Xo

  • Wildflowers123
    Wildflowers123 Member Posts: 28
    edited June 2014

    Oh and yes, the last 5 treatments are boosts - with no bolas, THANK GOD! 

  • Wildflowers123
    Wildflowers123 Member Posts: 28
    edited June 2014

    What are the next steps for you now that you've completed rads? I'm not sure what to expect after I've completed radiation? I don't think chemo is an option at this point. I went through the gruelling 5 months of chemo last year, and they are really not mentioning what will happen next for me. Just continuous follow ups. I'm interested to hear about what they told you. 

  • Notbuyingit
    Notbuyingit Member Posts: 1,035
    edited June 2014

    no worries! i have seen it mentioned quite a lot in these threads!! I believe "Mary Jane" is a friend to many.

    I have to laugh because when i was first diagnosed all my daughters ( they are older) immediately said they could "hook me up" but i never received anything!! ha!! still waiting....

  • DeliriumPie
    DeliriumPie Member Posts: 1,370
    edited June 2014

    wildflower, you should ask about the silvadine since your skin is broken down. It is a really common rx during rads. It was like magic in a tube for me. Those last few days before boosts were terrible and I stayed in a daze and I felt I would never escape that hell - but the healing came quickly after. My case is a bit different because they didn't acknowledge that my lung mets were there at the time, even though they were. So based on the thought that I was stage IIb, it went like this:  neo adjuvent AC/T, bmx, rads with concurrent adjuvent Halaven (clinical trial because I  had residual active cells in three lymph nodes and 4mm of breast tumor left after neo adjuvent). Then when I was supposed to be "done" again, I had follow up scans for the trial and they finally acknowledged that my lung nodules could be mets. So I did biopsy, pet scan and the works. Then the resected my lung in two places to remove the nodules. I am not currently on any treatment. My first CT following lung surgery was clear, so I am now siting in the metaphoric waiting room every day. 

    Where are you mets?

  • Wildflowers123
    Wildflowers123 Member Posts: 28
    edited June 2014

    hey Delirium. I will definitely ask about that cream. Wow it sounds like you've been through the ringer! For me, the mets are in the skin. I'm really quite scared as to what comes next for me as they told me that chemo had already been given once (6months ago). But, they did say that they may still try another form of chemo if only to enhance what the rads has done once I'm finished. If not, well, I don't know what the heck they are going to do with me. I guess it will just be periodic scans and tests to see if the cancer has travelled further? 

    The cream I'm on does have a bit of a pain agent to it. It's a sulphur base, so maybe it's similar to what you were given. It is kind of magical, and it's in a tube as well. Haha. 

    So now you wait for more testing? Wait for the cancer to spread? I'm so naive with this stuff. I really have to start grilling my onc more. 

  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    To back track a little, I understand about the pain. Mine, so far, has mostly been inside the breast. I had a mammaplasty just about 2 mos before I started rads. So now EVERYTHING is totally inflamed. It actually grew about 2 inches, so far, from the swelling and lumpiness. And I'm only 13 of 30. Sometimes I just sit and the tears start flowing. Talked to my RO and she told me to take more Motrin. Yeah, that works for about 2 hours. Now they tell me that for the "boosts" they will have to compress my boob. Are you F#^king kidding me I can't hardly touch it. The sim for that is on Tuesday, if I get the same set of bobo's I got the first time this should be fun. Boosts may not happen didn't really want to do rads but was guilted into it

    I see a pattern of 2's here.  .    .   umm

  • Kicks
    Kicks Member Posts: 4,131
    edited June 2014

    I burned VERY severely after rads.  Thankfully the deepest of the burns were under arm where there is some nerve damage thanks to surgery so the worst of the pain I didn't feel. Oxycodone first, then vicodin took care of the pain in the rest of the radiated area. 

    I did 25 rads (no boosts - Dr said boosts were not appropriate with IBC but our Drs are all different as are we) -in early March and the last scab came off on June 29.   What finally healed me was Domeboro soaks.  None of the 'creams' did anything but as soon as I started the Domeboro soaks (Dr told me to try it), it started drying up and healing.  Silvadene/Sulfadene can not be used by anyone allergic to Sulfa drugs as I am.  

  • intothewoods
    intothewoods Member Posts: 449
    edited June 2014

    Okay I am not a pot smoker but my friends are. I am two days out from my last treatment and I am miserable with pain and itching. My underarm and upper chest are broken and weeping. I'm using Silver sulfadene and not sure it's working. Tonight I'm going to try a couple of puffs. 

    Wildflowers I had a recurrance to chest wall hence the rads and a bone met to rib. I'm on Femara for the bone met. I'm curious to hear what your treatment plan will be.

  • Wildflowers123
    Wildflowers123 Member Posts: 28
    edited June 2014

    Wow, thanks for the response everyone! Best of luck to all of you. Intothewoods I cannot tell you the amount of INSTANT relief I felt after trying a few puffs. And a few puffs is all it took (I'm such a newbie). A few puffs took the pain away for 3 hours! We also have friends who partake in this taboo regularity, so it was easy to find safe stuff. I was also told that if inhaling it bothers you, the tea works like a dream. My husband and I watched a couple videos on you tube about how to make marijuana tea, and I will try this for sure! 

    Thanks again for all of the responses. I had hoped I wasn't the only one in this position. Rettemich...Motrin? Seriously? Christ, I would have freaked out if all they told me was to take more Motrin. If they tell me they have to compress ANYTHING in that general area, I will be damn sure to be sufficiently drugged for it - and it won't be Motrin that's for sure! Best of luck in the coming days. Let me know how it goes! 

    Kicks did you find that you were irritable after the oxy's? Myself, I get "grouchy" when the 4 hours is up. No other way to explain it. I've never had to use this drug before so I knew right away that it was the meds making me miserable. They did the trick for pain, but I didn't like the need for a broom stick when they were wearing off lol. 

  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    Thanks Wildflower, I will. I was just going over my "new" schedule. And from what I can figure out it appears Now they have me coming in twice a day for a few days. I think the second is for boosts. Anyone ever had regular and boosts the same day? I know why she is doing this. I told her I may not go for the boosts. So now they are going to try and what sneak them in, Really? Looks like I will be talking to her on Monday. As conveniently our weekly is the day I am suppose to have 2 treatments, after of course. Yeah I'm a little pissed. She told me "I was the driver" yeah not so much.

  • Wildflowers123
    Wildflowers123 Member Posts: 28
    edited June 2014

    oh rettemich I'm so sorry you are feeling this way. Sometimes when the pain is overwhelming I try to think that it must be working to cause that much pain. But geez, if all they are giving you is Motrin that just sucks. I've had a bolus for every treatment (plastic on top of breast to increase dosage) and although it is uncomfortable, I just keep reminding myself that they are blasting those cells away.  At this point, the radiation is buying me "time". I would bet in your case they are just trying to prevent recurrence - which is amazing! 

    The time really does fly. I've just finished 23/30 and it went by quick. Try to be gentle with yourself. Get plenty of rest and take whatever you need to get through. Let me know how your week goes! Oh, and yes I've heard of boosts happening on same day at treatment. 

    ((((Hugs)))))

  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    Yeah, good news is they had my schedule all messed up and I don't go in twice a day. Had to get the actual scheduler to come and talk to me today. Yeah they messed up. Hopefully it's all straightened out this time. 5 boosts at the end. I'm not a druggie but the Motrin isn't cutting it. Then I read that you are not suppose to take Aspirin, Motrin, pretty much any pain reliever with the Tamoxifen. Unless Dr. approves. I guess because of the liver. Great!

  • Wildflowers123
    Wildflowers123 Member Posts: 28
    edited June 2014

    Oh I am so glad they got your schedule figured out. It's stressful when those things happen! Personally, I don't like to take meds and they often make me nauseous but when the pain gets to be too much, I speak up. I wish you all the best in the coming weeks. Keep me posted on how you are doing! 

    Many prayers sent your way. Xo

  • Lojo
    Lojo Member Posts: 303
    edited June 2014

    Wildflowers, my skin broke down at about my last treatment (around 25 out of 26), and continued to get worse for another 10 days (felt like eternity). At one point I had an open area the size of two matchbooks on my chest. The percoset worked for me (in terms of pain relief, but I also found the wet dressings very helpful (I forget what they were called, but essentially sterile gauze embedded with Vaseline that adhere to your skin without pulling the skin). They come in individually wrapped foil packages, and you just put them on your skin and they stick (though do wear something you don't care about as they stain). My RO and rad nurses kept assuring me that it wouldn't get infected despite appearances (and they were right). It healed from the outer edges in, and hence appeared to gain speed as the wound closed. By about 14 days post treatment it was mostly healed, and by 18 days, completely. I went through another two rounds of peeling, but it was superficial and painless - like an old tan. My chest is still fairly tan (where the bolus was), and my MO said there might be some permanent discoloration, but I just noticed I'm going through another round of peeling (now about 10 weeks post end of rads). I know my situation is not as serious as yours, but I hope that if you're still having trouble you can find the Vaseline dressings. (The RO said no silvadine when there were open wounds). Best

  • intothewoods
    intothewoods Member Posts: 449
    edited June 2014

    Hello everyone. I am 7 days out. I see some healing but still have several open areas. The RO told me to use the silver sulfa stuff on the open areas though.  So odd how we get completely different directions! For anyone with intense itching, I'm also using Domeboro soaks which have been really really helpful. 

  • Wildflowers123
    Wildflowers123 Member Posts: 28
    edited June 2014

    Thank you Lojo and Intothewoods. Yes, it's interesting that different doctors suggest different things for coping. I've just about had it with the pain meds - they make me nauseous. The only thing that doesn't is percocet - which makes me grouchy at the end of the four hours. I've never been a pill popper, so I think my body is saying "what the hell is THIS?". I may just have to suck it up for the remainder of the boosts - I hate nausea. It puts me into bed and I can't function with it. 

    So far, I am done on Tuesday, but my RO said she may add more boosts to the end, depending on if the skin can handle it. I was given the domeboro(?) from a friend who also went through this. I will try it for sure. 

    My fear at this point is that there doesn't seem to be a plan after rads. Not sure what the heck they are going to do with me. :( I was told that chemo wasn't an option as I completed 5 months of it from August 2013 - Dec2013 with my first round of cancer (stage 2 triple neg - same breast as the recurrence - bilateral MX). So, now I'm just sort of floating through these next few days and wondering "what now"?  

    It will be nice to be done with the rads...but I'm sort of scared to be finished if that makes any sense. 

  • Pray-warrior123
    Pray-warrior123 Member Posts: 1
    edited December 2017

    I have read you post because so similar to what my sis is going through. I hope you are doing ok. As I read your post I decided to let you know that I’m praying for you and will continue to pray. I know that everything that happens is according to his time but there is a reason he wants us to pray. I also pray for your family.

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