Starting Radiation in July 2019
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Hi Shadow - no problem hope the chiro helped. There is a muscle on each side of your neck that splits into three and connects your shoulders to the back of your head and other places called the scalines this was my problem. There are a couple of really good stretches that help. I know the darn treatment is stressful but try to focus on relaxing your shoulders, in the words of the famous frozen song try to let it go. Hope the headache goes away quickly. Check and let us know how you are doing.
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Hiya all
Well well i had 2 separate blasts of radiotherepy back when was admitted in hospital in June was it everything is a blur since diagnosis and didn't find it too bad.
Meanwhile I'm. Home and consultant oncologist over week ago and mentioned about my beam through pain of neck and skull so they arranged me hsve a ct planning session last Thursday which went well unfortunately my mobility had got worse over seeing consultant and she checked. My mri scan and jscd csncer deposits in top. Fema. So was decided that one big blast on my hip and give sessions on skull. And neck area.
So had started thst Friday l, no side effects however Saturday no feeling sick or anything but bit. More pain as expected and I'm absoutley exhausted I haven't been sleeping well before this however sat I got up for med morning went back to bed till my sister arrived around 1isj then back to bed again.. You get the picture I just woken up now 4am British time still knackered but in pain due missing my paracetamol dose so. Going have pain relief.
If anything goes from. Radiotherapy since having on lumber and thorasiuc that has worked wonders. I won't denie slightly anxious of doing it Monday to Thursday considering how tired iam. Now like.
Sorry ramblin on
Xx
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It's a good thing my center has already established their technical competence with me, because their administrative competence leaves something to be desired. (That "something" being competence.) They have continued to move my schedule around, which causes havoc with my work schedule and is generally annoying.
Today I went for what was supposed to be an "education" visit. Well thank goodness I'm a bit of an obsessive googler, and thank goodness I'm a bit obsessive about verifying important appointments because 45 minutes before I was supposed to leave, I called to check my appointment and learned 1) that they moved it UP 30 minutes and 2) I was going to get my first treatment today and the "education" session is going to happen on Thursday!
That gave me just enough time to get to my appointment, wash away my deodorant, and be ready. Yesterday, I also proactively slipped some travel sized aloe and moisturizer into my purse, so I was prepared that way as well.
I met briefly with the office manager to politely express my desire that my appointment calendar not move after today and she agreed. She gave me a print out of my appointments which she swears in the unalterable bible of appointments from now through August 19, unless I change them myself. She also agreed that scheduling an education session after three radiation appointments was not ideal and she'd probably not do that with other patients going forward. One of the nurses hunted around to give me a quick "tip sheet" on skin care, but only after I asked.
As far as the actual zapping, it was quick and uneventful and conformed to my expectations based on what I'd read and heard from others who have walked this path before me. Thank goodness for friends, Breastcancer.org, and Google. If radiation had been my first or second stop on this journey rather than my third, I'd definitely have my head spinning right about now, rather than be merely slightly annoyed (and temped to offer them some free process redesign consulting).
And on the upside, I started a day early so I'll finish a day early, so that's a win!0 -
I go to my test run Thursday and then I believe I start Monday July 22nd. Am I the only one who was surprised by the tattoos? I thought I had read a lot, but I missed that! I didn't like it at first but each new change in appearance takes me a minute, then I'm fine... they are tiny.
I am late to start rads in part because I wasn't sure I needed to do it, and then when I decided to do it, it took some time. I live in a rural area, and the first place I went to left much to be desired... I just couldn't see driving 40 minutes to get there every day, all while not trusting the doc. Then I had to wait to see a medical oncologist who would refer me to a new RO. My last surgery was 4/18; I hope I'm not too late to receive most of the benefits.
As a former smoker, I worry about my lungs getting zapped. They have me lying supine, and I have read that lying prone helps avoid more of the lungs and heart...
Anyway I'm thankful for the space to express these things, and to read about others' journeys... it's a real gift. I wish the best for all of you starting or recently started; may we all have minimal side effects or at the very least, share the good sense of humor I see so often here.
xoxo
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I saw the doc today and he said my skin wasn't red enough! He was expecting it to begin to turn pink already.
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kber - Do you know to moisturize a LOT? I'm doing 3 times a day during the week and have been doing 2 times on days I don't have radiation. I am doing hypofractionated so 15 regular and 5 boosts. I finished 15 regular already and had the second boost today. I've been very slightly pinkish and just starting to turn redder. I'm going to start doing 3 times every day (or maybe more?)
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I'm moisturizing 2 to 3 times a day. I also think he may have been momentarily confused about how far in I am. For a moment (until he checked the chart) he seemed to think I was 8 sessions in, rather than just 3. That may have been it.
That said, I know everyone reacts differently and I found the idea of *wanting* to see pink skin a bit odd.
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kber - I am at 13/30 saw my RO and she said "oh it will get a lot worse" and then smiled. Perhaps they have to be sadists to go into this type of practice. I went down to twice a day (moisturising) and got a little more fried so have gone up to four times a day (one right after being zapped). So I don't think you can moisturize too much. Drink tons of water and when I get tired of peeing every 5 minutes I image I am peeing out any nasty little cells that were hanging around. Hope your skin stays only pink and intact.
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Giddyup - you made me LOL with your sadist observation. I agree that you can't over moisturize. Plus I'm drinking plenty of water and I cut out caffeine and alcohol for now. (OK - I didn't 100% cut out caffeine. I have 1 - 2 cups of green tea each morning, but after that it's strictly herbal teas.) I am peeing a lot! But that's how you detoxify, so yay us!
I think we've worked out our calendar hiccups, so that's good. I do like how quickly I can mark off visits. I only have to do 25 (no tumor bed to boost since I had a BMX) and, compared to chemo, it already seems like it's going by quickly.
I don't have to do hormone treatment, so this is my last stop on the active treatment train. Dear lord, I can't wait to get off this crazy train!
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kber, I get you on the "competence" issue. My very first appointment with the cancer clinic did not go well, beginning with the very new student CMA (assistant) who, being very new, didn't know what she was doing. And it didn't really get better from there. And there was a person called a "nurse navigator." When I tried to find out what role she plays in the treatment process, I found out that she doesn't. Don't know why she holds that title. I haven't seen her again, heard from her again, nor been navigated in any direction by her.
Fortunately I have confidence in the docs, and all the other nurses have been great (except one of the chemo nurses, who was not, but I'll allow might simply have been having a bad day. Oh, and the pre-surgery nurse. Wasn't impressed by her, either. "That's not my vein," I said. "Oh, I'll find it!" she replied.)
My rx won't start until August 19 now. Not sure if I've said that before.
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@kber Wanting to see pink skin does sound a bit odd! Jeez.
Laughing at the incompetencies. After a pretty horrible experience I am at a new radiation place and am much happier - they actually seem like they know what they are doing. It's important to feel safe while lying on one's back exposed to the 1980's sci fi space machine moving all around you while someone on an intercom tells you to hold your breath!
kber, DorthyB, anyone: what are you using to moisturize immediately after tx? I bought aquaphor as doc recommends but may prefer to use that at night when I get home. I bought boiron calendula cream from the health food store but... it looks a little "off" - like it has some green in it, and maybe it should be all white? .... eek.
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I use Miaderm right after (thanks to the recommendations of so many from here) helps a lot with the sting, Use it at night under the thicker cream. And yeah I think the Calendula should be all white (green makes me think of mold eeew) Good luck in the space ship (I am half way through).
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Thanks GiddyupGirl. And good luck to you. Halfway - yay!!!
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Reading about competence issues made me smile.. My initial visit with RO summary states that I had abortion which I never did, that I did ENT surgery in their hospital 12 years ago while I moved here 10 years ago, not to mention "explained skincare during radiation tx to the patient" - I probably wasn't in the room when they had this discussion with me, but whatever, Dr. Google explained it to me, and sharing your experiences here is absolutely priceless. And I have no idea why they ask about time preferences if nobody checks, but that part was being taken care of too.
So I have moisturizing-calendula-aloe-and-so-on-and-so-for lotions everywhere, and my husband and girls are ready to remind me to drink water and not to make that extra cup of cofee, and I am starting my radiation journey on Tuesday. My commute to the hospital takes about 1hr15min each way, driving plus subway, so I don't even know what scares me more, radiation therapy or going back and forth every day.
Giddyupgirl - you mentioned you're in Toronto, if you don't mind me asking, what hospital are you at?
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JLall - First, my update - I have now completed 18 of 20 total treatments. I am doing hypofractionated (so the same amount of radiation but less treatments & more radiation per treatment). I still have very, very minimal discomfort. My breast is swollen and actually starting to look red the last few days, but skin feels normal. I can feel a little heat when I moisturize.
I am part of two breast cancer facebook groups. I took the responses from people over several weeks who said they did NOT burn, wrote down what they did and tabulated the responses.
Almost all of them said they drank a LOT of water, so have been trying to drink a LOT of water every day.
Most of them used 100% aloe vera gel.
There were three top lotions - aquaphor, glycol base and can't remember the third.
Most of them started moisturizing several days before radiation started.
My radiation started a bit suddenly - I was going to wait until oncotype results were in and was told it would be two weeks after test was ordered on a Friday. However, the following Wednesday I was being marked up and radiation started the following Monday so 9 days after test was ordered. So, no real time / energy to shop for moisturizer.
As soon as I knew I was being marked up, I stared w/ aloe vera sunburn lotion and lubriderm because that is what I had. They gave me sample size aquaphor but was saving them for treatment.
Once I started treatment, my regimen is:
- I put aloe vera 100% gel in one palm. I add whatever lotion I am using and then mix w/ two fingers. Then I apply the lotion mix to everywhere that might possibly get radiation including way under the armpits almost to my back. Now that I'm doing boosts, some radiation might be coming out the back of my shoulders so trying to moisturize that side of my back also.
- in the mornings, I add glycol base
- immediately after treatment, I add aquaphor (I find mixing it w/ the aloe vera makes it much easier to apply)
- before bed, I add lumbriderm or other regular lotion since I already had that on hand
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I’m using aloe Vera gel and Miaderm. I like the idea of mixing them in your palm before applying. That makes a lot of sense. As does drinking water.
My appointments since our discussion about appointments have been one time and gone smoothly. I’m lucky that the center is five minutes from the office. As I read about some of your long commutes, I fell especially lucky and a little guilty.
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Hi julie - I am doing my rads at Southlake Hospital in NewMarket - where are you going.
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kber - I felt guilty reading about you working through chemo, right after the surgery and now through radiation therapy. You are honestly my hero!! I've been off work since my surgery, and I will be going back only after radiation therapy.
Giddyupgirl - I am in PMH. I was offered to do rads in Sunnybrook, but it doesn't change my commute..
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Julie - if I had a 1.5 hour commute to treatment, I’d have taken off too! As it happens, my cancer center is 25 minutes from my house and 5 minutes from my office. Makes a difference! I also have the option to work from home and I have a flexible schedule. When doing chemo, if I wanted to schedule a nap in the afternoon, I blocked my calendar for that time and made the time up later.
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kber - my work is strict 9-5, it includes case management and home visits. I was struggling to make it on time and I've been through a lot of stress even before the diagnosis, because of work and kids altogether... Sometimes I think that all this happened to me for a reason. All these hospital visits, procedures, pain, sleepless nights on one hand, and the other - I am trying to stop and ask myself what's next, and what my new normal will be like after all.. But you are still my hero no matter what you say
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Thanks everyone for the suggestions (and the research, Dorothy!). Very helpful. I started today so 1/20. I will add some aloe to the stickymix and drink more water!
I have an hour drive each way but have a million other things easy. You are all heroes.
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JLall congrats on your first rads hope it was easy on you. Major tip I got from my tech was put the lotion in the fridge, trust me, especially on hot days, your hot boob will appreciate it. May your skin stay soft and only pale pink. I've done 15/30 so I'm halfway there .The time will pass faster than you think.
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Hi GiddyupGirl - congrats on the half way mark! Question - now that you have 3 weeks in the bank, how are your SEs? I'm only 6/25 done and so far have no SEs at all. I'm wondering when they kick in, and when they do, is it sudden or gradual?
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Hi Kber - everybody is different. For me the fatigue kicked in early (the first week) then mostly on Mondays felt great by Friday (the TGIF syndrome) At this point I am mostly just pink (scars are darker) Some chest muscle pain started the 14/30 but did a lot of heavier lifting (stupid). So far the itching started about the 12th tx and that is mostly my collar bone (not awful yet just annoying). Mostly kick in was gradual and sporadic. But it is definitely not one size fits all. Hope you keep going with no side effects (lots of people do really well). Keeping lotion in the fridge really helps cool things down. Even if no side effects keep moisturising and drinking lots of water. if nothing else the rest of your skin will look amazing. Keep in touch
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I have my final (#20) radiation treatment today. I started having a lot more fatigue starting Friday after my 18th treatment. I've gotten very little done the last several days.
Pain still very, very minimal and redness still not uncomfortable at all.
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Dorothy - congratulations on finishing today! I hope you start to feel better soon!
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Dorothy congrats on finishing now its time to sleep and recouperate and have some fun.
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Has been 3 weeks since my last radiation and I go to the hormonal doctor for my 1st visit on Friday after my bone scan and lab work tomorrow. I am greatly concerned about the meds because of my Mom having had both knees and both hips replaced and cement put in her back because she had osteoporosis so bad starting in her 60's until she passed from a car accident at 87 that broke her ribs in 6 places. They rec-called all the implants they had done on her after she passed and the Fosimex also saying it caused bone breakage. Go figure? I am 73 and so far no problems with my bones that I am aware of - But?? The bone test is tomorrow!
My breast is getting better slowly from the radiation (not as red and the skin is peeling like a sunburn in the area they gave the most radiation to (where the surgery was at) the last week, but I still am sore inside of the breast and that has never stopped since the surgery on 4/4/19? PS my arm also has been numb like since the surgery and I get a sharp pain every once in a while with it, and I do lots of moving etc with my arm so I hope that will eventually go away? They only removed 2 nodes and I had no cancer there.
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Lady Bug don't over do moving your arm -- gentle stretches. I overdid (during radiation) and wow did my breast hurt for days where the surgery was done. They should do a bone density (really nothing to it) and that will tell them the condition of your bones. Don't worry yet. Good luck on your tests tomorrow
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Hi, I need your help as soon as possible.
About me:
IDC, Right, 4mm, Stage IA, ER+/PR-, HER2- Oncotype 20 Planned Tamoxifen after Radiation; Surgery 5/08/2019 Sectoral Lumpectomy" Negative lymph nodes 3/0, ClearMargin: Radiation Therapy 7/15/2019 Whole-breast: Breast,
Radiation therapy is planning for 15 sections +1 boost. My recovery after surgery was unusual longer more 60 days, because my incision is not healed well. However they started radiation treatment, because serome stopped dripping for more than week. After first 6 days of my radiation sections, they decided to look at my CT scan made 7/08/2019 and 7/09/2019 they have found left surgical sponge in my right breast. Radiologist directed me to surgeon and said that I will reschedule new therapy test with possible increasing days for you. The Surgeon looked at my incision, said I am so sorry and asked me about time convenient for you to do surgery. I said as soon as possible. The surgery to remove surgical sponge is appointed for tomorrow 07/24/2019. As I know from medline there is some risk of cancer recurrence after interruption of radiation therapy especially on early stage. Is this the only one way to do it? Your advice will be very appreciated.
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