Starting Radiation June 2021 Group
Hi all. Starting this thread for June 2021 radiation starts.
I have my mapping appt this Thursday, and then will probably start next week. I have 15-19 treatments. I told my RO I was concerned about lung and heart damage, so she said she would keep a wider margin..."because she knows what's important to me".
I had a left side 6 o'clock lumpectomy and 3 sentinel lymph nodes removed and a bilateral reduction. Finished 4 rounds of TC chemo. Looking forward to getting started so I can get finished.
Doctor recommendations-
skin care: Calendula Cream 3x/day, but not within 4 hours before a treatment.
Supplements: no vitamin C, E, A or fish oils, until 2 weeks after last treatment.
Comments
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hello,
I meet with my RO this Friday for mapping, if she gives me the go ahead. I finished up antibiotics last Friday for a post op infection. The original plan was to have started radiation early May, so I'm a month behind. And I woke up to cording in my armpit this morning! BS sending me to PT. The plan is for 6 weeks of radiation. Chemo was tolerated, surgery went well. I'm praying for continued good response from radiation. I look forward to joining this group - we are stronger than we realize!
Julie
Jujuscancerjourney.Wordpress.com
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Hello!
I had my mapping done last week, and I start radiation on 6/9. I was originally told 30 treatments but I was thrilled to find that I “only” need 25!
Looking forward to hearing/reading advice and concerns from others going through the same who can truly understand. We can ge this done and put it behind us
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hi everyone! I finished chemo in May, had mapping last week and waiting on my radiation schedule. It'll be 15-20 treatments.
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Hi. I started external beam radiation on June 2nd. I'll need 20 treatments. I'm feeling fatigue about 5 hours after treatment. Is anyone else feeling fatigue yet?
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Hi
I am following...just finished chemo and have my consult for radiation this week.. I will update later when I have more info
Best Wishes to all
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Hi, all,
I am starting radiation to my femurs (both sides) after progression combined with arthritis to both sides. Mockup today, start treatment next Monday. 10 treatments total.
Had radiation in 2004 to my L breast area (original BC) -- was about 27 treatments, as I recall. Fatigue is real, but for those of you doing chemo, nothing like that.
Good luck to all.
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I am glad someone started this thread. I just started radiation and have had two treatments. With bad shoulder arthritis it has been sort of a challenge so far. The simulation was long for the mapping and the first treatment also tedious. But today it was only 10 minutes , thank goodness. I just pray no lung or heart issues as I have L breast cancer , opted for lumpectomy, and had some chemo induced pneumonitis and had to stop the Kadcyla. That was not fun and scary. I have to have 20 total radiation treatments.
-No vitamins or antioxidants, one Rad Onc said to use creams and the other to use Cornstarch (??), they work together.
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1/25 done early this morning. It was really fast. I’m not a fan of having to reach back with my arm and really need to stretch more.The (very kind techs used a bolus for 2 of the treatments, I just learned that word and haven’t had time to look it up and understand what that does! Feel free to educate me!
I was told to have only cotton fabric touch the treated area. Moisturizing is up to me, but if I do I’m supposed to only used eucerin/aquaphor or aloe “as pure as possible without alcohol in it”. No scented soaps, no hot water warm only, no sun exposure, no tight fitting clothing, no perfume, no vitamins, no deodorant, no shaving, NO lotion just before treatment. And I’m probably forgetting a few no’s!ChefGF, I don’t know yet if I’ll get fatigued a few hours after treatment. Are you able to have a normal day? Or is the fatigue enough that you have to pause and rest?
Good luck to all!
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GreenOutdoor, I seem to have all the same "no" can do stuff as you described. I did my 4th treatment today and the positioning is still rocky and I do not enjoy the arm up in the air either. Gosh the table is rock hard! I am no wimp but thank god these treatments are about 15 min long. They told me I have to do more readjusting tomorrow to get it "perfect" and that was discouraging. I have to do 3 weeks plus a boost week. Driving home (I am driving myself) made me very sad about this journey and it is hard to stay positive. I don't know if the fatigue I feel tonight has anything to do with the start of radiation or just emotion of being fed up with all this! The aloneness of all this daily trucking back and forth to watch other cancer patients.
I would like to know if anyone has been told anything about preventing breast swelling. I have an array of creams to use and I read that breast massage might be helpful. I have been going to treatments without a bra and need to invest in a good compression bra. Has anyone read that Lavender oil or Emu Oil is good to use? I have so many moisturizing creams my bathroom looks like a cosmetic bar. My least favorite is the Aquafor and I have been using other ones I found.
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Hello All
Went for my consult now mapping is scheduled, not sure how long that will be or specific details, have a general overview...any tips or suggestions are appreciated...I will have radiation 5 days a week for six weeks..
Best Wishes to everyone ❤
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I just had #2 this morning. Racheldog, I could have written what you did about emotions, etc. Yesterday coming back from #1 I felt very emotional, almost beat. I have been saying I'm just so fed up with it all. Months and months of poking, prodding, cutting, do this, don't do that, hospital visits, hospital stays, side effects, feeling like crap, no energy, weight gain. It's catching up to me.
Then yesterday a friend sent a video of that America's Got Talent golden buzzer awardee Nightbirde. Her story made me cry. Look her up if you have the guts to watch. So moving.
The radiation treatments are so cold and mechanical. Thank God they are swift. At my cancer center the radiation rooms are called Linear Accelerator Vaults. I watched from my dressing room as these big, leaded, wavy-shaped doors shut with the patient in the vault and the techs outside in the control room. Locked in a vault...that's how I feel right about now.
I'll bounce back from my little pity party, but right now I just feel whipped emotionally.
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Hi all,
I’m going for mapping in 3 days.
I will be having Full breast radiation ( left) and Axillary radiation.Mo RO wants to do Hypofractinated
for 4 weeks. Second consult with RO yesterday and she says she is conservative and clinical trails are still undergoing for Hypofractination, she will do 6 weeks.
Any one has done research and give me any insights regarding conventional vs hyppofractination.
Thanks in advance.
I am also going through up and down emotions. At times I say the heck with this evil and live my life, go along with the professional advise.
However, the professional always wants to you make the decision and this gives so much stress.
Trying my best to hang in there and keep spirits up.
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How is everyone doing?
I just completed treatment 5/25 without any major side effects. I get tired early in the evening but nothing like chemo fatigue. No skin changes yet, but the RO warned me that the bolus they are using on me will increase skin reactions (but it will better protect me from a recurrence on the skin and especially the scar area) Anyone having side effects yet?
My appointments are early enough that I’m able to work a full day after treatment. I see the RO once a week and I get x-rays also once a week. Everyone is really nice and professional but I just really don’t want to be there!
warrior73 I’m sorry I don’t know much about the different types of radiation treatments. How did your mapping go? Did you get answers to your questions?
Heidi, my treatment room is called the infinity vault! Definitely feel trapped while I’m in there..
Racheldog “my bathroom looks like a cosmetic bar”, that’s me!! Only using aquaphor is so boring and greasy! Not fun! I’m also tired of being positive, I need to start making fun plans for when I’ll be done with active treatment. Are you able to plan something fun for when you are done with treatment?
Ab45, the mapping appointment I had was simple. They molded my correct position onto this “pillow” (not soft at all) that is used daily for my treatment. I got three tiny tattoos, one of which hurt, the other twos I barely felt. It was a lot of not moving and my arm was really sore from being stretched over my head. The daily treatments are much faster. I hope it goes well for you and that you can get started so you can get done! Also hope that you’re recovering well from chemo.
Bevjen, what side effects are you expecting from radiation to both femurs?
Juju-mar Were you able to start radiation treatment yet? Delays and complications are so stressful. My chemo was delayed by a collapsed lung after getting my chemo port, and that was my lowest point by far. I hope you are past your complications and in good spirits to start this part of treatment.
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hello GreenOutdoors and everyone else,
I had my simulation yesterday and today was day 1 of 30. I was a little nervous. But tried some deep breathing and kept my eyes closed. Now I know what to expect and will move forward with confidence! I work 7-11am from home and radiation is 11:45. So I'll have the afternoons to rest if and when I need it. I was lucky during chemo to continue working and doing my normal household things. I'm hoping that'll be the same during radiation. But if not, I can get through it - 6 weeks of treatment left. This marathon is almost over.
May we all do well with minimal side effects! And tell your body "cancer is NOT welcome to grow here ever again".
Julie
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It is so nice to hear others having the same emotions and ups and downs in this crappy hand we are dealt with. I am on Week 2 of radiation and in a few hours will have my weekly appointment with the radiation oncologist. So far the boob looks a bit bigger, maybe a bit pinker and the tiredness Is more today. Not sure if this is attributed to the radiation at all or just ALL the appointments dragging me down. I don’t know one BC patient that is not thoroughly sick and tired of appointments. Even the few that I can do on Zoom are getting old! I found a PT who specializes in oncology—rare to find. She deals with lymphedema which I do not have but thought it might be good to jump ahead and hear what suggestions she would have for breast swelling. She did have some good compression bra samples.
My gosh, I wish I could take some good vitamins. I get tired of hearing “healthy diet and exercise” will fix and help everything during cancer treatment!!! Please..
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GreenOutdoors,
You asked about side effect of radiation to my femurs. Pretty much the same as breast radiation, but probably at a lesser lever. My RO has predicted mostly possible fatigue and maybe some redness. My radiation is to eliminate any remaining cancer cells left after the surgery -- especially on my L side where they actually put the "pin" right through a lesion on my femur. Plus, my radiation is only 11 times.
Good luck to all of you who are doing this for the first time. I found it relatively easy, especially in comparison to surgery and chemo.
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Hi all, i just started radiation today after finding metastasis on my bone. I'm sorry that you all are here with me, but wishing you all the best.
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Hello everyone,I don’t usually post daily, but I’m a little tired and doing more sitting on my break than the usual walking or socializing. Hope everyone is enjoying their Wednesday
BevJen thanks for explaining this to me, the pin through the lesion part sounds unpleasant. There is so much more to this illness and it’s possible treatments than I ever imagined before being diagnosed. Hoping you get maximum results and minimum side effects.
Julie, I too close my eyes during treatment, I’m surprised how fast each appointment is. I want a bell or something to celebrate the end of this!
Racheldog, a PT who specializes in oncology sounds amazing. I keep forgetting to ask my RO for a referral to PT. I enjoy long walks (long for me, I’m not breaking any records), and I’ve noticed my fingers swell up a lot when I do. Not sure what’s up with that. Honestly I don’t really want to pay more copays and spend more time in appointments just yet.
Star2017, I’m sorry you find yourself here, hopefully your treatment goes by fast. Did you previously have radiation with a tissue expander in place? And if so, may I ask how that was and how it affected reconstruction? I’m not seeing many other people in that same situation as me. Feel free to private message me too.
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I am 5/20 done. I'm doing hypofractionated so the doses are more at once but so far so good. Not nearly as bad as chemo. I'm absolutely exhausted but I had to travel for radiation and I brought my kids with me. I am sharing a room with my 3 and 5 year old and they keep crawling into the twin bed I'm sleeping in AND waking up at 5 AM. So not sure if it's radiation, my kids or both that is wiping me out. Still so grateful to have them with me and wouldn't have it any other way.
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Hi GreenOutdoors. Actually, my PS encouraged me to get the implant placed in before radiation, if possible. He just didn't want to cut into radiated skin if he could avoid it. So I had radiation with the implant back in 2018. Everything went fine. That side is definitely "tighter" and stiffer than the other side, but other than that, it's okay. I still haven't gotten nipple reconstruction done.
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RedCanoe, if I ever feel sorry for myself trucking to radiation each day I will think about you. You poor thing having to bring your children and having to travel. I am glad these are short treatments and I am in Week 2---just starting to notice a pinker and bigger (?) breast, I think. Kind of an irritated nipple tonight? Tylenol at bedtime helps.
Yes, this oncology PT is really a special find. She works with arm lymphedema (do not have) , LE edema, etc. and does and teaches manual lymphatic drainage of the breast. Continuing next week with her. I know that another BC friend had a PT at a Kaiser who did this but may be hard to find a private one.
I have another question for the group on a topic that is ALL over the place: Vitamins and supplements during radiation. What are you all being told by your RO? Multivitamin ok? Only Vitamin D or Calcium or Magnesium? NO antioxidants? Curcurmin good or bad? This topic has polarizing opinions all over the internet. I would love to take Cucumin again (Tumeric) because it sure helps with joint pain.
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Racheldog,
I was told no Vit A, C or E during radiation. I take Vit D daily along with Zyrtec for allergies. I sprinkle turmeric on my eggs. I put flaxseed in my oatmeal. I curious to see what other RO have said. I started anastrazole after my single mastectomy and will continue it during radiation. I've heard other RO have you stop the anti hormone during radiation. Good luck to us all!
Julie
Jujuscancerjourney.Wordpress.com
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I started Ca and Vitamin D. I may start my Tumeric supplements after I re-visit this with the radiation onc next week or just do the powder into food as you are doing. Every time I read an article about supplements it is all over the place in opinions! I am down now with 2 weeks of radiation completed. I am so glad for the weekend break as my nipple is taking a beating and the team said that does often happen and can get worse. Oh boy.
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Hi every one.
Just got my first treatment today.
My RO prescribed Triamcinolone steroid cream to apply 3 times a day.
First treatment took almost 30 minutes, but from tomorrow it will be about 15 minutes.
Hoping not to have any serious side effects.
Good luck every one
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Hi Everyone
Can you please tell me what to expect from the mapping/ simulation appointment and how long this usually takes?
Thank you
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AB45,
My mapping took less than an hour. You will undress above the waist, lay on the table with your arms above your head. My right arm/hand started to fall asleep. They take measurements and at the end gave me 4 tattoos. It pinched like a bee sting but was over quickly. Mine was on Friday June 4 and I went back for the simulation Monday June 14 with true radiation on the 15th. My "zaps" last less than 20 seconds and they do it 3x. I'm in the machine less than 10 minutes. I see my RO every Tuesday for a skin/symptom check. Today was treatment #6 of 30. I use the cream she gave me a prescription for and aquafor at night. During the day I may put regular lotion on when I think of it. So far, so good. Best of luck to you.
Julie
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Thank you Julie! I am nervous but I am thinking it will be easier than chemo...I hope the fatigue allows me to still work during the radiation treatment
Best of you luck 2 u...I will have 30 treatments ..origianlly they said 5 weeks now that is changed to six weeks
Any helpful hints, experiences, or suggestions is appreciated...Positive vibes everyone
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Hi all! I've been quiet on here lately, but reading all your posts. I just finished #10 of 16, with a very low chance of 4 additional boosts. There is uncertainty because with my lumpectomy I also had a reduction that rearranged things in there, so a boost would cause more damage to healthy tissue than it's worth. I could be finished by the end of next week!
I have some redness of the skin where the tumor was, but no pain. Also I'm not really feeling fatigue, if I'm comparing to chemo fatigue. In fact I'm starting to feel almost normal energy levels.
My treatments consist of 2 initial images and then 2 treatment doses with breath holds. Takes just 10 mins or so.
Hang in there ladies. I like hearing about everyone's stories because many treatments are very similar, and it gives me some comfort knowing that. Then again everyone's experience is completely different.
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AB45,
It really is easier and so much quicker than chemo! I'm only there about 15 minutes. I got my energy back to a level I haven't felt in awhile. It helped that I had 4 extra weeks to heal from mastectomy due to an infection before I could begin radiation. I am working 2 days/week from home. And leaving today for a long weekend with girlfriends. We are hiking near the Appalachian Trail. So I get a few days off from radiation. Best of luck to you. Oh, for tips, I put the cream on immediately after radiation. And use Aquafor at night.Other than that, I am living as normally as possible 😁
Julie
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Juju-mar you reminded me I forgot to state what I'm putting on my skin. My doc recommended calendula cream, but I accidentally bought the ointment and used it a few times, then went back and got the cream. My RO said the ointment is probably better, but it doesn't feel a 'nice' as the cream. I apply the cream immediately after treatment in the morning, then at 2pm. Then at night after my shower I'll use either the cream or ointment.
So far so good because I'm just a bit red after 10 treatments.
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