Anyone getting ready to start Radiation in Fall 2016?
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hi Dara: yes I totally agree. I told her that i was using miaderm L and she said "but it doesn't do anything for skin irritation " and she didn't offer a replacement. Who cares what she says anyway. I have gotten great ideas here on the board and will try all of them if i have to. Next time, we meet will be very different indeed
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Miko & Katjadvm ....sounds like you have some charming radiation personnel to deal with. WTH?? These skin issues are important issues and we are the ones living uncomfortable with them. I have had some good ones but the best advise is from our ladies.
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Cali i hear you. I was a bit demoralized by the lack of tact. I am ready with positive vibes from all of you . My sisters
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katjadvm my ro was quiet. Hed answer my questions but seemed so apprehensive to look let alone touch my breast. He's probably in his 40s but it was the strangest thing. I had my 3 month follow up and he barely touched my breast, but my nurse was all up in there looking, which I want
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Hello Ladies, I have an urgent matter that need your advice and inputs.First of all, I started taking anastrozole 11/19 and my rads started 12/13. Here are the symptoms I suffer with AI, joint hands pain which comes and go but it makes hard for me to write, and grip things. When rads came, I started to have soreness, tense in the back of my neck radiated down to my shoulder. The left shoulder gets red as rads progressed. The back of my left and right arm both are sore. I'm not sure from stretching my arm too long during rads or what?Then my lower buttocks all the way down to my legs feel like hard to walk, almost like feeling old age. I'm 52 and I'm feeling like 62. Symptoms started when I'm doing rads. As I completed the fifth week last week, my whole left chest was red, hot, and tender. The swelling, puffiness under my left armpit became darker, redder, and more uncomfortable. Does anyone experience any of these symptoms. I feel like I'm the only one. What can I do to remediate the swelling. I want to quit the sixth week of rads and go on to the boost. Has anyone done that before and what is the chance of recurrence? About my armpit swelling, RO sent me to BS and he ordered ultrasound, which came benign, BS doesn't think it's lymphedema or seeing but neither BS nor RO is saying anything about my swelling except to put on Aquafor. RO denied any of my symptoms come from rads so I don't see the uses of me telling him symptoms when I see him once a week. Other than that I don't really have fatigue or loss of appetite. Really need to hear your response before I start the sixth week. Thanks all.
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Hi ladies, I'm lost can anyone let me know what Miadern and the Lind skin roll help your skin during rads? My RO and nurse don't really help just want to move things along and dismiss the symptoms come from rads. Please advise.
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hi huston: i use miaderm L ( not greasy)my radiologist poo pooed this but it is helping since it appears i am having breast pain. It helps with muscle pain and can be used 4 times a day. So i use it during the day with an application 1 hr before rads and immediately after. Then i use aloe gel overnight. If later i start getting burns then i will start Lindi roll which I've heard is very good. Right now tho I love miaderm L. My symptoms were also dismissed. BUT i have them so, i am addressing it on my own. I am also using miaderm soap which I love, it feels good on my skin.
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Houston....I have been hurting all over as my radiation progresses ...back, shoulder, neck. I feel old and compared to you I am old but feel older. I'm at 18 of 33 treatments and wonder why mine seem to be longer than most?? I don't have the swelling but wonder what using Aquafor for swelling would do?? I once heard that the RO will deny most SE aren't from rads...even though so many have.
I bought Miaderm L and a Lindi roll....I use the Lindi roll after radiation to cool it down...I can't use after each rad since I work but if I can I use. Then Iput used strips in a Baggie and place in refrigerator to use again. I read on Amazon about that.
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Thanks Miko and Calligirl, where can I buy Lindiroll and Miaderm? Seem like wonderful ideas.
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I bought both via Amazon 👍 Good luck . I am having a ct today and i am 8/33. I too will be asking why 33 and not less
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Hi Huston: I am 8/33 and just started femara and i have swelling and neck pain following rads. I have also been experiencing nausea albeit mild. I thought maybe because i am prone my shoulder and neck hurts but my ro didnt think it was related to rads. Oh well i am not happy and started self treating and i think the nausea is from the femara. Miaderm L is my friend for muscle pain. It is pretty amazing that nobody really cares what you feel and that it is just minor and you can handle it. Well, that is not good enough for me. I am sure they (the ro) have heard it all, but, a little understanding or compassion or suggestions would help. I get all of the above on this board which is reassuring
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Hi Houston, I am also on anastrozole and finished 36 rad treatments right before new years. The anastrozole can cause severe joint and bone pain. My MO said if I suffered a great deal of joint pain he could put me a different drug, but he likes to start with that one and then safe the other two should something be needed later on. I have arthritis and have had several joint replacements, so am not always sure what's is causing my joint pain. My rad tx basically just affected the skin that was radiated and I used Miaderm L (from Amazon) until I need the prescription Silvadene. I also found I went braless as often as possible. I am now having some back issues, but I think all my muscles just atrophied during chemo and rads when I wasn't very active. I've found I learned more on these threads from the women who have been through it, than from my doctors. Like Miko, I think I experienced some slight nausea from the anastrozole at the beginning, but after about 3-4 weeks it all subsided. My only SE I still have is some fatigue, but I'm much better. You really can do this! Hang in there.
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Hi Miko, yes this board is more informative than any of my drs. After I called Monday, 01/16/17, to cancel so my skin can heal one more day, the nurse says why don't I come in early and talk to the RO first. I came there late but only nurse looked at me and suggested Dr. gives Silvadene. But my insurance didn't cover and CVS has to order it, and I won't get it until 5 pm Tuesday. Luckily, we have two pots of aloe Vera plants in the backyard. I just smear the gel all over. Too bad Miadern and Lindi roll are not in store and this is my sixth week. Next week is the boost. Well, better late than never. I think standard is 30 sessions with 6 boosts session total 36. But I wonder who determines that six weeks are more effective in killing cancer cells than five weeks?
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Hi Dara, how do you manage the joint pain, mine especially on the hands. I heard one lady says Miaderm L helps. Good thing is besides the underarm pit swelling and aches in other places possibly from rads, I don't have fatigue and still have good appetite, consider better than chemo.
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- Hi Huston: silvadene is very good for burns. I haven't used it yet BUT i did when I burned my hand really bad. It was great with great results. I was going to ask my od that question as well why 33 treatments vs 25? I hear that it is pretty much standard but not all bc is the same. I was also going to ask about the boosts, the benefits and why do it when you are already so burnt. I was sick a week ago and called to see if I should go for rads and was told unless I have a fever I need to show up. OH WELL. I am having a sharp pain just beneath my nipple where my surgery was. Miaderm L is not helping so added asprin to my regiment. I cannot imagine how I am going to be next week ( Iam only 9/33)
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ok interesting but not unexpected. I called my oncologists office and asked who decides how many radiation treatments i get. They didnt know, and told me to ask the radiologist. If he could not answer me then I should call back. Oh well, such a pain. Both ro and mo are really no help at all.
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Miko....I do wonder who makes all these decisions...with the 2 holidays off I will wind up having 7 weeks of rads. I am getting itchy, red and very tender nipple...along with my shoulder pain, neck and back ache & cramps ....I got tears last night since I was so miserable ...all this and I have to get up for work 😝
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Callie girl: have you tried stretching a little each day to help with the shoulder pain?
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ooooo Caligirl: i feel so sad to hear that you have this pain. I have almost the same symptoms except in the neck area, even asprin is not helping. I meet with ro today but I am not hopeful that anything will be said to address my issues except (let's monitor it). I also have this constant pain and occasional pinching sensation just under my nipple (where surgery was). I don't know who decides how many treatments we receive and why the amount varies. I haven't been able to get an answer. Will try yet again to ask my ro today. I cannot wait till this is over, at least the rad part anyways. I was mentioning to Katjadvm that I was amazed that the radiation waiting room as well as my mo office was standing room only. So much cancer out there it is depressing . I want you to keep up the good thoughts and bright spirit and we will get through this together. HUGGZ
Ps: I go to these appts smiling and noticing that everyone looks so gloomy (can say I blame them) i leave smiling and waving and then go home and be depressed. Lol I think I am developing a little split personality. Continuing to work also helps as it takes my mind off of the big "C".
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hi there: has anyone used Lindi skin roll? Do u apply it - take it off and reapply after treatment. Is it messy and does it require something to cover it before getting dressed? Just wondering. I also have mepitel and katjadvm helped me to use that one. I was just wondering on the Lindi skin as well
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Miko, has the Lindi skin roll been tested for radiation desquamation prevention?
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My skin is incredibly itchy. It is driving me nuts. GGGGGGRRRRRR!
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hi amusing: i dont know if it was tested,my aunt gave me 2 rolls and some mepitel that she didn't use. She is going through almost the same treatment as me and she just finished her rads. Well, i met with ro today and as I thought he said "we'll just monitor your breast pain". See u in a week. Oh well. He did answer 2 of my questions tho. 1. Who decides how many treatments one gets - the ro does, based on a formula. 2. Why is my lymph node area not being treated - the reason is that it was micro cells and the risk of treatment on my back is to dangerous for my heart and lungs ( the side being treated is on the left ) Also he expanded the area a little bit so some nodes get zapped not all. It was interesting today. I wish i could get rid of my breast pain and neck pain tho.
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Katjadvm ....yes I have been stretching and it helps some days and others I am too tense I guess. The itching is becoming no fun!
Miko....you are so sweet ...thx for the hugs!! I know what you mean I walk through the cancer center smiling and greeting all my new buddies then I get in the car and can feel kind of empty! There are so many people at the cancer center I go to also. So sad! The Lindi skin roll is to use after radiation it is just a cooling product my BS suggested and it helps. It is slippery...I apply the strips I've cutand put a towel or tank top on to keep in place for about 30 minutes. Then I rinse off strips, put in ziplock bag and put in the refrigerator.
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Cali, just a warning that your skin may continue to react. It seems the rads work from the inside out. If the skin begins to break, make sure to get the prescription cream from your RO. I don't know how much it helped with healing, but it keeps any infection from developing. My ro said it doesn't help any until the skin actually breaks down. I know you're working, but I got to a point where there was no way I could stand anything tight on my skin, not even a cami, let alone a bra. At the very end, I'd just stretch out with a cold washcloth on my breast and that felt really good.
The skin really does heal in about two weeks post tx. Cali, I used a topical anti inflammatory on my shoulder at night which helped a bit, plus a heating pad. Good luck!
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Dara....thx so much for always being helpful & encouraging. I am so happy for you as you move on and and heal. I can't wait...I just want to encourage the others.
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Putting cold cloths on the breast is excellent and part of the standard treatment we do along with the Mepitel here. Mr breastcare RT said that radiation heats up all the tissues and using cold cloths (3 times a day was what we were advised) helps cool everything down.
Dara is correct, the effects are delayed so radiation today shows up several days late in any side effects.
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tyty Caligirl: thank you for sharing the info on Lindi rolls. I hope that I won't have to use it, but, it is unlikely. It appears that the ro was expecting me to be burned by now, so i am anticipating that this will happen at some time. We will keep on trucking together 👍
Hi Dara: i have some silvadene cream which are left from a 2nd degree burn I had. Hanging on to it like gold. I am also hoping i can continue to work since I took off alot following my lumpy. Tho, i wouldn't hestitate to stay home if my burns become unbearable. Hum I love my job, but, not that much LOL
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Hi all well I think Femara (letrozole) is doing a number on me....... i am getting joint pain (neck, rib and shoulder mostly) on the side i have my rads. I also have become rather emotional.
It is a little strange i am now 12/33 my psoriasis is acting up, i have developed a cough. I feellike I am getting a little sunburn on my cheeks too ( i am prone). Hum will mention to ro but prepared to hear " lets monitor it
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Hello. Anyone know if it is okay to sauna while doing rads? I have a little portable near infrared sauna that I adore and have avoided for the last four weeks because of rads. I am really wanting to sauna tonight and can't find any good info online. Thought I would see why you gals know.
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