Radiation October 2018
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Hello everyone, new to this forum. I have been in the chemo in aug forum. Just finished 4 rounds of tchp and will be heading to surgery in Dec. "lumpectomy and breast reduction." Then off to radiation. just trying to get a feel of what is next to come. Already bald and vary fatigued. Usually trying to deal with bad stomach and not able to eat to well, or just wiped out and need to be in bed. Hopefully I can start getting info from the radiation group here.
Best wishes to all Hughope1
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Hello ladies,
I see everyone speaking about how many sessions they get but nobody telling how many Grey (Gy) they will receive so what is the dose for each session. I understood that what a major concern regarding RT. My total dose is 50 Gy in 25 sessions so 2 Gy each session.
To be honest with you, I refused the sus and sub clavicular rads because of the extra risk about thyroid. But I will get the IMC radiation because of a tumor on my sternum. I should have one positiv lymphnode but they couldn't find it during the surgery. All the 7 nodes removed were perfectly clear, normal size (2mm) and no scar tissue even if there was one on the scan and MRI.
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Welcome, hughope!
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So, 4 treatments are done, 21 more to go. So far so good. Misstic, I am on the same radiation regimen as you. My tech told me it’s pretty standard.
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Hi, I've completed 19 of 25 treatments. So far so good. Fatigue is not a given so don't anticipate it!. I do my treatment at 7am before driving to work daily. Skin is also good, changed colour but good overall. I'm very thankful, I know some people are having a difficult time. I think what helped me gas been daily walks and keeping up with my supplements. Wishing you all a hassle free journey.
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Like you, Palesa, I did a 4 miles walk everyday during my chemo and felt really good. I just lost some weight so MO asked me to stop to regain the lost weight (which I didn't achieve). As soon as I stop my everyday walking, I felt horribly tired.
I decided to continue this exercise during the RT.
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Palesa2018 - I agree that everyone's journey is different and those checking in before RT should not necessarily expect all of these SEs. I'm through 21 of 32 and only mild fatigue, barely perceptible pinkness to skin and no other issues. I also do the 7 am and then on to work. I would say be aware of the rougher SEs that some are having but follow your ROs protocol and hope for the lightest impact possible. Stay strong ladies!
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Misstic~ I am receiving 45Gy in 25 fractions of 1.8Gy. No boosts.
Radiation tx 11/25 will be this afternoon, so far still feeling pretty good just a little tired. Skin is still okay, but my doctor said this is the week things usually start to really show up. I get swollen now after my treatments, but it seems to settle down with some Advil. I'm praying so hard that I don't get capsular contraction, but I know there is nothing I can do so if it happens my PS said we will figure it out. My Mepitel Film lasted the whole week this time so that's an improvement
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Thank you Sidalee. You are lucky with a such light regimen. Skin burning can happen after 20 Gy so after 11/12 sessions in your case. But I'm sure you will be in the 95% of women having few skin SE when wearing Mepitel.
I live in France where Mepitel is not approved by our "FDA" in case of RT because the cost for the french public health insurance. So my RO is not permitted to prescribe it to me. I have to do it on my own. He is not allowed to let me keep it during the session and I will try to put it on and off every day and see if this product is really non ablativ as written in the description product... By chance I will have a 4 days pause during the treatment because of french holidays.
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Hi Misstic- you might do more damage having the Mepitel film on and off. The idea is to have it on during the actual radiation and to keep it on for the duration. Avoid getting it wet. When it curls up the technicians trim it. I reckon you might irritate your skin putting the film and removing it daily. Just a thought! All the best.
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Hi Misstic - I checked with my RO today. I'm getting a total of 52 greys, 42 of which are the daily RADs, which she says is very standard here for my breast cancer. I'll have boosts at the end, which will bring the total up to 52.
To those who haven't started their RADs yet, I do agree with the other wise ladies, go in hoping for the best but be aware of what to be proactive about and what to be on the look out for. You are your best advocate.
Ask questions. Drink tons of water. Walk, move, stretch when you can. Rest when you need to. Most importantly be kind to yourself and be patient with yourself as well. So much is going on, emotionally and physically. It's a rollercoaster, even without the side effects, IMO.I will say that one of the best things that has helped me with the heaviness, swelling, and tenderness has to basically be living 24/7 in my compression, front-close sports bras/cotton bras that I purchased for my Lumpectomy recovery. My RO says that it helps keep fluid from building up by keeping the breast compressed. After the rough first week I had and then switching back to living in these bras again, I will agree, that for me, they have made a huge difference.
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Radiation day 9 today. Breast feels sore on and off. My nurse put a mepitel lite ( a foam bandage) that comes off during treatment and showers, on my nipple after I complained of sore nipple. It has helped a lot. The mepitel on the breast stays on. It has become quite frayed. I believe they will change it if it comes off. I see my RO tomorrow. I had missed that appointment on the schedule.
I am doing okay energy wise, I think. Little tired. Anybody else feel really parched?
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Thank you all for your information and advice.
One thing I wonder is if the Mepitel we get in Europe is the same that the one in US. First Mepitel in France is cheap, about 1,5$ the biggest size, 15$ for a box of ten (so it will be my cost for me for one week). Second, the Mepitel film in Europe is not adhesive. I did some test a week ago putting the Mepitel on my skin. When I put it off, I can even feel it.
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hello all! This is my first post but I’ve been heavily creeping the boards since my diagnosis in July:) I started radiation yesterday and will have my second after work today. So far so good although I had little zingers from the site of my lumpectomy all day. Have had throbbing every now and again from the site since surgery but I suppose that’s normal? Only other sensation that I would classify as uncomfy is the arms over my head during radiation. Everything along my armpit down feels pins and needles-y over the duration of the radiation. Anyone else experiencing this? Highlight of round one was the nurse playing “heart of glass” by blondie. Super distracting and had no idea when the session began and when it ended
. Took everything in me to lie still and not dance;). Best of luck to all you brave sisters xoxo0 -
Welcome Dreamers1989. Wishing you all the best.
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thank you Palesa2018
Question to all:
Can I ask when you started your tamoxifen? My MO said 2 weeks after rads I can begin. Thoughts
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Welcome Dreamers,
First, bless you if 1989 refers to your birth year and you are here with us at such a young age.
I've had phantom pains now and again since my lumpectomy. It's pretty normal and I believe it has to do with nerves re-connecting after surgery and is most likely nothing to worry about. That said, you should mention it to your RO anyway during your weekly visit - do not hesitate to ask about anything. They should be very accommodating. In the first month after my surgery, as soon as I stepped into a cold room I would get what I describe as "shiver pains" where I would get a shivering sensation throughout my affected breast but only the breast. Very strange. Still happens, just not as often. And now after 6 days of radiation I am suffering from what I call "Angry Boob Syndrome" (ABS) which is how I describe the backup of fluid inside my breast (seroma I believe) that appeared about 2 weeks after surgery, went down and has now re-surfaced with a vengeance since day 3 of RT. It's swollen, hard, and sore, and there is a lump right underneath my incision site that moves and gets larger as the day wears on and smaller when I sleep. My RO was kind enough to show me my CT scan pics so I could see how much fluid is in there. Nothing I can do except exercises to get the fluid to move on through. The nurse told me that they could drain it, but draining sometimes leaves even more of a cavity so I'm hoping to avoid that route unless absolutely necessary.
BTW - my "ABS" isn't a side effect of RT but rather from the surgery itself, but for some reason RT triggered its return. Fun times!
Also, I wanted to share with the group that I have been using the My Girls skin cream - haven't seen anyone post about that. It's luxurious and smells great. It's one of the approved creams on my list. I also have Miaderm bar soap for showering. And only natural deodorants. I tossed my old ones in the trash as soon as I started reading about the aluminum content. I'm still on the hunt for the perfect one but Schmidt's Rose and Vanilla serves well enough for now.
I wish I could get music! But we have to make sure I can hear them tell me when to "breathe in and hold." Sigh.
Gentle hugs to all! Do something nice for yourselves tonight ladies. You deserve it.
Michelle
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Re: Tamoxifen - I am starting at some point after rads too.
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my MO wants me to start Arimidex day after rads are done. No waiting.
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thanks for the feedback mwlimelite:).
I’m actually born in ‘81. But yes still relatively young to be battling this disease. I wish none of us were fighting this battle but as strange as it sounds to say I feel more alive than ever and more greatful for all of life’s blessings. x
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I'm an October RADS, too. I just had my first of 33 treatments today. I'm pretty concerned about a skin reaction as I have very sensitive skin and my cancer was bilateral, so I have a large area being radiated. I had a bilateral lumpectomy and SNB on August 27th and then had an allergic reaction to the surgical glue. The recovery from the actual surgery was quick (even though it was both sides), but the recovery from the allergic skin reaction took much longer. For RADS, I'm using a prescription cream that has Melatonin and Beta Glucan. My compounding pharmacist says it has given great results to other patients, so I'm hopeful. My RO said no deodorant at all until after treatment is done.
I still have to go out an investigate bra options. When I had the skin issues after surgery, I could sit at home without a shirt or bra to avoid some of the irritation, but I plan on working through my RADS, so going topless is not an option.I am very grateful that my oncotypes were 6 on one side and 10 on the other, so no talk of chemo for me.
Here's to all the October RADS!!!
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"I feel more alive than ever and more greatful for all of life's blessings"
AMEN SISTER! Thanks for the reminder to keep sight of the good things during this trying time.
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Today I had treatment 4/34. So far I have noticed that my lumpectomy incision is sore which I found surprising since they had been doing great. The skin around my lumpectomy incision is turning pink where I had a reaction to the tape after surgery. My stomach is a little off, I have noticed it feels much better if I keep a little something in it. Today I snacked on a few crackers etc and it helped. The most annoying SE I have is that it has made my tinnitus (ringing in my ears) so much worse. I haven't seen anyone else post about this but it is driving me crazy. It could very well be related to fatigue. I have noticed before if I am very tired it is worse. I do feel tired but don't know if it's the stress of this new routine and the daily worry that your going to end up a burning hot mess or the radiation. I wasn't expecting any side effects for a couple weeks at least. I have been slathering up with Alra cream and think I will try some of the aquafor they gave me tonight. I took my seam ripper and removed the underwires from one of my more comfortable bras, so far it is working well.
This is such an emotional journey we are on. I was struggling a little the first couple days. We are all such brave souls. Stay strong ladies and be easy on yourselves.
xo
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hi all
First of 25 radiation treatments today. Cancer centre is 1 hours drive away so called before leaving to check that on time -all was good but when I arrived there was a 90 minute delay! Was also given a schedule for next week but 5 out of 7 times were way outside of the ranges I gave. Radiologist said to just come when I could but that doesn't feel right and am sure receptionists won't agree ...
On the verge of refusing further treatment as I don't see who would have the time to waste 4+ hours a day on it - when exactly can I work? On top of that a headache all afternoon and feel very hot
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Re: Tamoxifen start - I'm also starting a week or so after Radiation.
I tell myself that not only did I get breast cancer but I also got a lot of perspective. Focusing more on things that matter and not sweating the small stuff.
Blessings to you all! 21 of 25 rads today.
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I started Tamoxifen on the 12th along with a monthly Zoladex shot. I have completed 19 out of 44 radiation treatments. I go 2x / day. My skin is starting to be red and sore, but my RO says it still looks good.
I am trying to work 1/2 days during treatment, but its getting harder. I don't know if my fatigue is from current radiation treatment, starting the new meds, dealing with my sick kids (my 5 year old has bronchitis), or what, but I am so tired and unmotivated, all I want to do is crawl back into bed.
I guess I am glad to still be here to complain about things....
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Hi, I had my simulation yesterday and asked my RO about Mepitel, via email afterwards because I couldn't remember what it was called (chemo brain). Here's what she said:
Thanks for the mepitel film reference. I'll admit it sounds impressive, but it's a small study, done abroad, completed several years ago and I'm not aware that that product is actually available here and now. I performed a literature search and found no other studies looking at this prophylactically. I would feel uncomfortable trying it in absence of more robust study.
I had found a reference to a study on the benefits of mepitel. I'm a little annoyed at her response, and surprised that she hadn't heard of it. Oh, well.
Re the AI's during radiation - it seems that there are no studies that show taking it during radiation is or isn't better. I started taking anastrozole in August after chemo, but I'm trying to get into a clinical trial that only permits 12 weeks of AI before enrollment, so I'm discontinuing it during radiation. Both my MO and RO were ambivalent about it.
I'm so anxious to get started and to be done!
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Golfnutt, don't give up! Take them up on their offer of coming when you can. My center works me in as soon as I get there since we are also driving 45 minutes and traffic is hit or miss. Consider the treatment could very well save you from having a recurrence which could save your life. Work around the treatments as best you can. You can always work when you are well. Hanging in there.
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Me2018 - sorry to hear that you are having a tough time. I guess life has to go on while we are undergoing treatment. I too have little ones, 6 and 3 and I'm trying to keep up with them as I go. We have had sniffles, falls, the usual. Eat well, drink lots of water, take your supplements and soon this radiation shall pass. Wishing you all the best. *Hugs*
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CarolAnnie - I'm glad you posted what you did - our experiences seem a bit similar. 1 of my lumpectomy incisions is sore, as well. (I have 5 incisions - a lumpectomy and SNB on each side and then another incision because the clip fell away from the tumor on one side and they had to go in and remove it). I am also pink and a bit "rashy" around my incisions where I had an allergic reaction to the surgical glue. I have also gotten a couple of random bouts of nausea and thought I must be going crazy. I'm sorry your struggling with worsening tinnitus. It's hard to know exactly how our bodies will react to the (necessary) assault we are putting them through. I did not expect to feel tired the first week, but I do - and I think some of it is the feeling of being overwhelmed with the thought of 7 weeks of driving back and forth to treatment every day while continuing to work, plus the concern about how my skin will do.
To all the ladies in the October RADS club - hang in there! We are in this together!
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