Fall 2015 Rads
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thanks Kbee. bbl
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littleblue: don't worry, I wasn't bent out of shape! all I knew is that if telt the same to me.....
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Queenmomcat I am finishing my regular radiation Monday and starting my boost on Tuesday. I just learned today that my boost is different and requires a different machine electrons rather than protons as Littleblueflowers said. First I heard of the difference was today. I knew I was having a boost but that is all I was told.
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Brutersmom: Huh. I was on the same machine the whole way through. Shrug. Maybe they did mention it to me, but it got lost in the morass. Thank you also for chiming in.
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Queenmomcat. It is a bit overwhelming. The techs went over my schedule because they keep moving my time around and I work. That is when they told me that I would be a different set up and in a different room.
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A bit overwhelming? Drowning in a sea of information was more like it for me.
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I haven't posted in several days but I have had the worst pain so far in the last few days - I now understand what "moist desquamation" is all about and it is awful. KBee - I can't believe you have that much of a raw area - my raw areas are between my breasts, down the thin skin along the breastbone. I still cannot sleep on either side because it pulls and tears the area. I can't stretch my arms far, and I started hunching over when I stood as it was tearing it when I stand up straight. Of course, I am making myself stand up straight but I wince.
The descriptions of the pain were very colorful (road rash, etc). I would say it is one giant paper cut that keeps tearing and also feels beaten. Even my left breast and nipple, which did not get radiated directly, now hurts internally. I have taken KBee's suggestion of alternating advil with tylenol and I put on either Silverdene (to prevent infection) or Recticare (to numb it) and I use the frozen gel packs, especially to fall asleep.
I haven't heard anyone else saying their burns are between the breasts - not sure if it from the prone position or from sweating when I hiked - I know they cautioned against getting sweaty as that could make the skin bubble up, etc.
Anyway, enough complaining. Tomorrow morning we are heading north for the weekend to Acadia National Park in Maine and I am going to sit on the cliffs and stare out at the ocean - this was my "happy place" I envisioned while getting radiated each day.
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Enjoy your trip, Goofy!
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GoofyFoot: enjoy Acadia National Park for me too (DH has family in Maine---Tenant's Harbor) I can well imagine that that would be your happy place during rads. But at least I bet it'll be cold enough at this time of year that you won't be sweating overmuch.
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Goofyfoot, The best thing in the world for me were Mepilex dressings. I only know about them because my nurse navigator saw me in the hall when my entire axilla was moist desquamation and told me to ask for them. My RO never mentioned or offered them. When I asked, they told me they really don't stay put, but I could try. They gave me one and wrote a prescription so my insurance would cover the rest. I had to get them at the hospital store; pharmacy did not have them. You can get them on Amazon, but make sure you get the ones WITHOUT the adhesive edges. They are crazy expensive, but you can use it for a few days and it is worth every single penny. They immediately bring relief and knock my pain in half. You do have to be creative to get them to stay, but I cannot stress enough how much relief they brought, and I do think they really sped up the healing process. I do not know why these are not standard of care, other than they are not creative enough to get them to stay put.
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Goofy foot so sorry to hear you have moist desquamation. I know the pain can be horrible. My RO eventually gave me a prescription for Percocet. I could take 1-2 every six hours. I was taking one and not every six hours. I saw the nurse a week later and the pain was getting worse each day. She told me to definitely take 2. Then the pain was unbearable and I finally started taking 2 every six hours. I don't know how I could have survived with out doing that. I had to keep ahead of the pain or pay the price. I'm 9 days post rads and felt some improvement today!
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Hello. Add me to your list for starting October 19th for 6 weeks.
I was supposed to have my last chemo Oct 19, but I started to get neuropathy in my hands. Since my chemo was prophylactic, my MO and I agreed to stop and go on to rads. My blood count is fine and I feel good, but am I giving it enough time between chemo and radiation???? My MO said 3-4 weeks after last chemo, and the RO said, "Monday will be 3 weeks, so lets start and you'll be done by Thanksgiving!" Honestly, after chemo, I'm ready to get on with the next step! I had my CT scan for my dot placement today. I'm doing prone position (because the tumor bed is on my left side and I'm trying to protect my heart). The tech said it's normal procedure to do a CT prone, supine, and then one for the boost. I feel that I have had sooooo many CT scans, that I declined the CT in the supine position. So, I sure hope the physicists can get the correct angles.
I've been reading what you all have been posting in addition to reading the "what to do before radiation" thread. Let's see if I have my list right:
Over-sized bra, cami's for underneath bra and for goopy creams, cooling towel, CVS after sun aloe Blue gel with lidocaine OR "recticare" (normally a hemorroid product but has 5% lidocaine!),Spand-gel Hydrogel Sheets or Mepilex dressings, aquaphor, AVO or Eucerin, only Dove sensitive soap, Tom's Deod., no supplements, lots of water, and maybe an ibuprofen 1/2 hour before radiation.
Anything else you recommend? You guys are too funny, but if it works, right?!! Naturally, I'll check with my MO before I buy any of this stuff and try to figure out what works best for my skin.
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Sloan15 start with the dove. I bought cotton sport bras and they have worked well. My docs had me using Auqaphor from day one to keep my skin from drying out. My skin has only turned pink. I have had 14 treatments so far. I am doing the accelerated radiation 16 treatments plus 4 boost. Everyone is different and reacts differently. I take ibuprofen 1/2 hr. before my treatment because I was getting dizzy afterward. It worked for me. So keep that list handy you won't know what you need until you need it.
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Sloan: you're on the list. I'd say "start by asking your MO and RO." but all those things are useful! (wryly) I'll admit that CT scans were a snap after the multiple MRIs I had.....but glad to be shut of them myself.
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So what are the cooling towels? Washclothes? I like the cami under the bra thing. I cut and paste this stuff for when it's my turn. Thx everyone and Sloan for listing. Add Silvadene and Emu.
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cooling towels are made of microfiber so they do not get drenched like a wash cloth; they just feel damp. They are very soothing. I got mine at a sporting goods store
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Thx! i know I'm going to need those towels
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What size towels please?
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I used a Polar Pad. I live in the land of no shopping. 132 miles to the closest Walmart. I got mine on Amazon. Search for them there and they'll give you a good description. You can probably get them locally.
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Ok I'll check Amazon, I hate scavenger hunt shopping. Five stores to find one thing
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Marijen...I had some discomfort. By the end of week 3, I was using my aloe with lidocane twice a day over my entire radiation area. Once in the morning (before work) and once after I got home. I did rads after work. My routine was to go home afterwards, chill with my cooling towel for about 30 minutes to draw out the heat and then hit everything with the aloe/lidocaine. Anytime during the day if I felt tingling or pain I would immediately apply my aloe w/lidocaine on the painful area. The lidocaine stops any mild pain. I kept some in my drawer at work and sometimes used it 2 or 3 times a day.
My worst time was week 4 and 5. That was when the area under my breast starting breaking. I ditched my bra after I got to work and just wore a light jacket to hide the droopy girls. Heat, sweat and skin to skin contact equaled bad things. This was South Florida in August. I didn't run. I didn't bike. I didn't walk. I scuttled between air conditioned spaces. Did it disrupt my life? Of course. But hey, that's the way it is. In the big scheme of things, it was only for a few weeks. Before you know it, you'll be the veteran telling your story to the next set of newbies.
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Another good piece of advice. Save your receipts so you can return the items you don't use. I bought a lot if things I didn't use, but wasn't organized and couldn't find my receipts to return them.
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keyz-plez, I found polar pad at Amazon. Do you have a preferred brand of aloe with lidocaine? Size and price. Filling up my cart. Will keep receipts. This is a great help. Guess I'll be lucky to be doing this in the winter except more kayers needed.
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My rad tech specified CVS Aftersun Aloe Blue Gel with lidocaine. My CVS store was out of stock so I got Walgreens brand. It looks the same. But the list of ingredients is different. Aloe is way down the list on the Walgreens stuff. Aloe is #1 on CVS. Plus Walgreens had more unpronounceable stuff in it. My rad techs were right.
So I got the CVS brand. I should have kept the Walgreens receipt. ;0)
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Checking with all you lovely ladies! I hit the halfway point today. 16 of 33. Other than having to get up at the Crack of Dawn to drag myself into the city for a 7:30am I have had remarkable few side effects. So far I'm not even pink. It's amazing to me how variable this can be.i should mention that I still can't eat...and my RO still says it's not rads.
I bought Delta Burke soft bras at Marshalls one size bigger. They come in a two pack in black and white and have a small insert in them that is removable. They work great.
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make sure whatever aloe you get does not have alcohol in it!
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Wow, alcohol in aloe? That seems kind of nuts, doesn't it? I need to buy some Dove. I haven't bought anything so far.
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When I was buying my Aquaphor CVS had buy one get one 50% off. So glad i bought two. I'm half way through on my second jar!
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Hi ladies,
I had my dry run yesterday and will have my first treatment next Tuesday, Oct. 20th. I'm scheduled for 18 WB treatments plus 5 boosts. Hoping for smooth sailing!
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why in the world wouldn't you grow aloe??? it's easy to grow under incandescent light inside. I have huge 40 year old plants but never get around to using them, that is the problem, easy to use prepared food & medications & cosmetics & essential oils. not so easy to use home grown herbs & such
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