Starting Radiation July 2017
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oldenough- I had 20 treatments. It's a shorter time period but doses are higher so from what I understand you still get the benefit of the longer treatments, but don't need as many appointments. It's a 200 mile round trip for me so it worked out good for me this way. I had 0 lymph nodes and clear margins. Tumor was 1.8cm, I didn't have to do chemo but radiation was never really in question. Everyone on my team recommended it. Are you not having chemo? I was told that if I had lymph nose involvement, or if my tumor would have been 2 or more cm, or if my oncotype score would've been 18 or higher that I would've had to do chemo as well. I felt very lucky to come under on all of those. Maybe age plays into it? I'm 41, which they consider young, even though I'm a grandma! Lo
Dizzy- my skin broke down really bad. The last week was pure agony, no sleeping, fever, blisters, rawness, etc. after my last treatment the pain continued at that rate for 4-5 days then plateaued. After a week it was improving and now at ten days out I feel so much better. Still have healing to do but nowhere near the pain I was in before. Hang in there! You're almost there!!
Congrats on being done, Joanie!!
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Had my last radiation this morning!!! My skin and my body are very glad. I have a nice sunburn, some swelling underarm, and a little tender. My RO told me things may get a little worse before better, but if not improving within 7 to 10 days to call him. I am to continue using the Radiaplex 3 times a day. This week the fatigue has hit me hard, but part of that has been getting my 3 kiddos back into school and having to be up so early. And of course, seems we have gone out every night for additional school supplies. Ready for a long nap!!!! It is interesting how each RO has different opinions. Mine isn't a fan of aquaphor. I see my MO next week to start Tamoxifen.
So sorry some of you are having such a rough time! Prayers and hugs for all of you!
Oldenough - so sorry, sounds terrible! I was told not to use any oils ... coconut, etc. My RO said it intensifies the burn. Again .... they all seem to differ.
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I'm asking this here, even though my radiation just started this week, hoping that some of you who have finished will enlighten me. I've had exactly two sessions. Both days, within a few hours, I've had an episode of tinnitus. This is not something that I have usually had, maybe once or twice in my life. Is it related to radiation? Also, feeling a new sensation in my leg, below the knee, on the radiation side. Like burning in the vein, but not painful. This is also kind of scary. I run a lot, so think my leg muscles and veins are in pretty good shape. What the heck
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ML- Congrats on being done!!! Such a good feeling.
Hap- my RO encouraged me to use aquaphor and Vaseline intensive care with Aloein it. He said to use it at least three times a day, but not before the treatments. Obviously we are all different so there's no way of knowing for sure if that intensified the burn but it didn't seem to help!
I never had tinnitus but after almostevery treatment I had a strange lightheaded/foggy sensation that would set in about thirty minutes after treatment and last a few minutes. I never mentioned it to anyone cuz I figured they'd say it was in my head, andyes, it was! Haha
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Christinarose -I see you have started the Tamoxifen. I start next week. How is it so far?
I know I had weird what I called zaps and zingers during treatment. More towards the last two weeks. My guess is it is related to the internal swelling going on and pressure on nerves. I at times feel like someone is sticking a needle right thru my nipple and then I get zaps down my inner arm. Never mentioned it either as it isn't all the time and comes and goes. And thought the same thing .... they will say it is in my head. And this surely can make you crazy:)!!
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I have only had 4 of my 28 so far but I too one night got ringing in my ear on treatment side thankfully it went away i also had an irritated throat and slight pressure center chest like I was getting a chest cold all have subsided but when I mentioned it was told symptoms dont show up for 3 weeks and I must be getting a cold,No im not ... but didnt argue.. I am a rare bird in I had no recon so my chest is flat and with that bolus thing spreading the rads who knows? Dont they realize we are all different!?
So glad I can touch base with all of you
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I think it's odd that while all of our radiation oncs have different advice about lotions and whatnot, they all seem to be in agreement about denying certain side effects which obviously are pretty common from all the reading I've been doing on this and a few other boards. I was reading through some of my medical papers this morning and after my last treatment the RO wrote that my side effects from treatment were fatigue and "some skin irritation". Call me a drama queen but my breast was at least two cup sizes bigger from the swelling and I was blistered, peeling, bright red. Some skin irritation just doesn't seem accurate to me but what do I know?
ML- I need to update my settings. I was supposed to start the tamoxifen right after rads but when my MO saw me she decided I needed a month to heal and then I'll start. She gave me a big bottle of hydrocodone instead of tamoxifen- not gonna lie that was a nice surprise
I am really nervous about starting it but of course the thought of not being here for my kids and grandson (and hopefully future grandkids) makes me believe that it will be worth the side effects. 0 -
it looked different every day but this is part of my breast on day 18 of 20.
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Christinarose....I too am having horrible issues but my RO has been on the ball. She has proposed stopping for a healing period twice and also ending a few sessions early but I refused, gave her my reasons so we've been muddling through. My last day is MONDAY I made all 35 sessions. I got so burned my skin peels off black, I have very dark spots, brown, purple and red and have had blisters and one large area that has not healed since my boosts go through it but I needed to just be finished. As of today though I see healing on the edges!!
The pic below was last week
I
This is today. Look at that pink skin top right!!!
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oh my goodness ! Mguara and christinarose!!
Did either of you use a bolus??
You gals at least have breast tissue!! Im flat to my ribs !! Lord help me ! Im only on 4 !
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HapB, my RO also say put nothing on during the treatment just no underwire bra. I finished 15 out of 20 session. So far so good just a little pinkness. I normally have sensitive skin felt itchy occasionally but it doesn't border me
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No bolus for me. 16 whole beast sessions and the 4 boosts to the cancer bed, which was right above the nipple.
Hap, I did take whole breast pictures almost every day for the last couple weeks. Not sure if I'll confront my RO. He's young and arrogant and I'd just as soon not be talked down to by someone like that. I could be wrong, but I think he is somewhat ignorant. I am very fair skinned, which you could obviously see just by looking at me. At my consult before starting I told him I was worried because I have really sensitive skin and I burn quickly in the sun even when using sunscreen. He brushed my comments off as not concerning, and then he told me that he actually sees more radiation skin reactions on black and Mexican women than fair skinned women. Everything I've read online contradicts that. I would have switched to another RO but we are rural so I would've had to drive 3 more hours each way to the next closest cancer center.
I started putting aquaphor healing ointment on twice a day one week prior to starting radiation. I continued that but added Vaseline intensive therapy with Aloe at least twice a day when I started treatments. These were both recommended by my RO. I showered every morning before treatments and never applied the lotions until after treatment. A week before I was done I was given a lidocaine/aquaphor mixture to help numb the burned areas.
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Almost forgot, I also started using bacitracin and neosporin on any part of the breast where my skin was raw. I was very scared of infection so I took extra care to keep the area clean and covered with antibiotics
mqara- I'm glad you're starting to heal. I have been really happy with how fast the healing process has gone for me.
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mamaOz- I didn't mean to scare you. From what I understand my reaction is not common. I honestly don't know anyone with skin as sensitive and easy to burn as mine. I have to wear a hoodie with the hood up in 90 degree weather just to keep my skin from burning while I'm watching my son play baseball. I buy really strong sunscreen and apply it every twenty minutes and still burn. I never go out in the sun anymoreunless I have a good reason.
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I asked my MO for silvadene and she said it's not good to put it on open wounds so she didn't give me an. One more issue that seems to be really inconsistent among our providers...
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Silvadene is for open wounds?! The purpose of it is to prevent infection on burns where the skin has broken.
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HapB, while I agree with you about the damage to skin not necessarily being about skin sensitivity or the fairness of the skin I respectfully disagree with you about the reaction to topicals that are used. To many RO's recommend and have even developed products that can help and too many people have used them with great success. You've posted several times that your RO said to use nothing and that's his recommendation and I would never say he was wrong, that's your RO's medical opinion and I'm sure that works for people. Having said that, I'm sure that there are things that shouldn't be use be used.
Sending healing thoughts to everyone!
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mqara, that's what I thought too. My onc nurse told me I should ask my MO for it and when I did that's what she said. Thankfully I'm healing fine without it but I'm definitely confused by all the different medical advice from our doctors. It's not like breast cancer and radiation are new to the medical community.
Hap, hopefully I won't go through this again but if I do I will definitely make the trip to a different RO.
On the bright side the healing process has been fast for m. The redness has faded to a light pink and all but about two inches of the open wounds are completely healed. There is still some swelling but that's down quite a bit too.
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My RO said that unfortunately there really aren't any good studies as far as skin care during radiation. He feels that if you are going to burn, you are going to burn - and then others hust simply don't. He prescribed Radiaplex Gel for me .... it is aloe based and used for 1st and 2nd degree burns, partial and full thickness wounds. I did get pretty red, but I do believe this helped. Silvadene is for 3rd degree burns, but my RO said there was some controversy over whether or not it helps with radiation burns. Bottom line '- I think they just aren't sure. Praying for quick healing for all!
Christinarose - are you back to work yet?
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So happy for you HapB and so sorry this is your second time thru this.
Yes - that is correct that they are not technically burns, but not sure what else one would call them. I was very well aware what was happening to my 4 year olds brain internally when he was going through radiation for a brain tumor. But as a nurse, I can say that that is how they document what is going on with your skin and they typically will say if it is 1st, 2nd, 3rd degree burns. My son had 3rd degree burns on his ears .... it was heartwrenching. He was treated at a large cancer center for children. We paid out of pocket for a new cream that had just been found to be helpful for women going though radiation for breast cancer (insurance would cover it for breast cancer patients, but not for children .... which sadly is the case often for our precious children). All I can say is it was worth every penny because his ears began to heal and were so much better during the remainder of his radiation. And guess which cream I was prescribed - yep, you guessed it ... the same one we had used for him. I think there is no way to know. Some of us will have skin issues, some will not. I guess the only real way to know would be to radiate both breasts at the same time ..... one with cream, and one without. Think I will pass on that
. I have known women who use the same creams ..... one is a little pink, one has 3rd degree burns. Thankfully and hopefully we are all healing .... one day at a time. Prayers and hugs all around. Thankful for you amazing warriors!
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HapB - so glad you are almost finished and sorry you have had to take this journey again.
Yes - that is correct that they are not technically burns. I think most call it that as it looks and feels like a burn. The radiation is destroying the bad and unfortunately the good cells as well faster than the skin can heal itself, thus the sunburn type reaction. I am very well aware of what is happening internally as I watched my 4 year old son go through radiation to his head for a brain tumor.... not a fun thing to have to stand back and watch. His ears were badly "burned", painful, and peeling off in chunks. It was heartwrenching. They had told us to use aquaphor, but it was a sticky mess when he laid his head on a pillow. They finally told me abt a gel that had great promise for women undergoing breast cancer. I had to pay out of pocket because insurance wouldn't cover it for use for children. It was amazing and he began healing for the remiander of his treatment. 10 years later I was prescribed that same gel for my treatment. My RO doesn't believe it will keep you from having a skin reaction .... but he said it definitely does relieve some of the symptoms. I just think we all respond differently. I have seen ladies who used creams and barely even became pink ...... just one of those unknowns and obviously no two drs feel the same about it all ot seems.
Christinarose - my RO did say that those who are more fair skinned and who are more likely to burn, have greater skin reactions/"burns". Glad you are healing.
Prayers for healing and hugs all around.
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ML , oh I do hope your son is doing ok.
I see the little children going in and just breaks ones heart
but please share ..... the mystery gel ?? Is??
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My last radiation is later today. 28/28 I couldn't be happier to have this part of the journey over. I am miserable! I have a lot of redness, swelling, burning, itching and quite a few blisters. Ugh! I swear it is the last five treatments that did me in. Some of the ladies I met at the center only have 20 treatments and they are not accelerated. They breezed through them will only redness and a little itching...I am so jealous. I still don't understand how they determine who gets what dosage. I know one of the ladies said she has lung problems.
DizzyGirl
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HI Folks,
I've been away from the boards for a few weeks. I was overloaded at work and ended up with some time-sensitive writing responsibilities. I didn't have brain power left to read; let alone to write. I haven't yet checked all that I missed but I hope that folks are doing well.
Today I had one of my last radiation sessions. I'm having 30 sessions (25 whole-breast and 5 cone downs or boosts). So far, going smoothly. Yes, I have a pink area, especially one under arm circling around to my back. It's really ok. I try to keep that area away from friction with skin or with fabric. I use the one-arm diva stance or the two-arm "Super Girl" or "Wonder Woman" approach. I'm being careful to wear only 100% cotton. I cut up large t-shirt strip to put between my skin and my 100% cotton bra. During the last weeks, I have been wearing a 100% cotton (or is it 95% cotton) cami between my skin and the cotton bra. Fortunately, I've been finding 100% cotton shirts that are presentable enough to wear to work. I'd never paid attention to fiber content but I find the 100% cotton items so much more comfortable. It feels soothing. Like most of us, I was told not to put on cream within 4 hours before treatment. After my (early morning) treatments, and 2 - 3 times more I apply a layer of medicated cream with a layer of Aquaphor on top.
I think HapB asked about "boosts." Assuming that these are the same as "cone downs," then I had the planning one yesterday and the first regular one today. Here's what I experienced: The planning one involved measurements with comparisons to the measurements the RO, radiation physicist, et al had done for the whole-breast treatments. They marked some dimensions using felt markers and temporarily they placed a measuring guide on my breast. Once things seems aligned, I was given the "zap." After that, staff took a photo and did more measurements/assessments of radiation levels. Today, I had one "cone down zap," during which they attached a device to record the level of radiation for checking by the radiation physicist. The actual "zap" was much more brief than the whole breast "zaps." It was in only one direction. I was in the same position as for the whole breast treatments. The one thing the technician warned me about as I was leaving the room to get changed was that the marker might mix with the creams and might smear my clothes. Fortunately, I had one of my cotton t-shirt large strips so I placed that over the skin, between that and the cami, and then I put on a bra. I realize we all have different experiences but I hope that this helps someone.
Question: Any ideas about gifts for staff as I complete treatment?? So many have been so very patient and helpful. I think there must be c. 20 or so there. I was thinking of either a basket of fruit - should it be organic to avoid extra toxins? - or a box of "healtier"-type snacks. I saw something on Amazon.com.
Sending good wishes for all.
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Bareclaws.. I got tinnitus also, after 20 treatments! I got ringing at least once a day. I think there are various side effects of the rads that aren't considered as side effects.. but of course I'm pretty sure it was the rads as I'm now five days out and have had no tinnitus episodes for three days. Hang in there.. I believe it will all resolve once it's over with.
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JoaniePA, thanks for letting me know that. Did you have chemotherapy? I read on another site that a study is about to be done on chemo-related hearing loss and tinnitus. Apparently it's a thing. Great. I'm not looking for trouble, but it seems to find me anyway.
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joanie I agree on the doctors not acknowledging other possible side effects. I had bmx no recon they put a bolice on my chest and im in a machine head first to my waist. Arms over head.. im concerned about my head and neck! But they insist the rad beams are focused on they're target but...
ive had 8 treatments so far and at times have a scratchy throat they insist isnt from rads. Also anyone get prickly feeling like pins being stuck in your arms and facewhen out in sun ? Ive felt this yesterday while walking and today after rads walking from my car ( in hot florida sun) to the store... kinda was freaking me out..
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thanks for your input hapb
I will ask my dr today as I will see her after my radiation and report her answer.. geez it leaves you feeling so helpless...
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Radiation affects everything!! I have more neuropathy and arthritis which settled and calmed down after chemo.
I get short but unbearable scratch throat which my RO denied. I have more freckes. And my head is tilted to my left during radiation. The area on my head above my right ear is definitely pinkish while its counter part is not at all. And Bolus!!!
I am really trying to suck it up. I spent almost $80 on organic aloe gel enough to last me for the entire duration. Aint easy!
Thank you sisters for letting me vent..
Mimi
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Today is my last radiation. Similar to HapB, I haven't use anything on my skin except water. The technician said my skin is in good condition just pinkness. Waiting to see RO at the moment might ask her to suggest some cream to put on the reduce the dryness of skin
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