Starting radiation March 2020
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Oh dear! My partner works in the lab of a big organic herbal company and said aloe sold out in a matter of days, and they're struggling to find more suppliers. Big box stores like Home Depot typically carry aloe plants in their houseplant department. I've also seen them at Trader Joe's from time to time. There are many natural lotions that are MOSTLY aloe based, that might work for you as well?
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I have so much fresh aloe at my house, I couldn't possibly use it all. I realize it doesn't grow everywhere, but if you have a local Nextdoor app or facebook community group, I would ask if anyone has any starts they'd be willing to give (or sell).
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Good morning all,
I had my simulation on March 9th. real thing this past Monday for the next 6 weeks daily M-F. So far doing well. Finshed up chemo Dec. 27, mastectomy with reconstruction 2/13, Doing well. Got 5 tatooes, I have triple neg breast cancer with lymph node involvement. Tumor gone with chemo, surgery all clear margins including lymph nodes. My RO suggested i use cream called Calendula 3 times a day. All natural product. The radiation clinic I go to only lets one person at a time in waiting room, dressing room and X/R rooms. They are taking precautions against Covid-19
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Hello all, I had my simulation last Monday, This Monday had the real deal. So far doing ok. I have triple neg breast cancer with lymph node involvement. Tumor gone with chemo, mastectomy with reconstruction and lymph node removal. All margins clear. Healing nicely. I have noticed from the 2 treatments I received that my armpit where lymph nodes removed (right), is sore after radiation. My RO likes the calendula cream so I been using it 3 times a day. Off to 3rd dose shortly. Nice to meet you all. Marta
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Hi Marta, my armpit (where i had nodes out) hurts right after each session too, I don't feel anything during radiation, but pretty quickly after it seems to irritate that area with little zingers. That started early for me and is still happening. I met with my RO after #8 yesterday (I meet with her weekly), I'm pretty pink already but she said my skin texture looks good, I keep it well moisturized. I just got a jar of expensive pure makuka honey which some studies have shown it reduces damage (tho it will be messy!) I'm hardly working (& prob won't work at all now that Covid-19 is tearing thru my city), so I'll be able to be topless or wear old t-shirts etc all day as needed, at least. My cancer clinic is also taking lots of precaution, screening people at the door & taking temps, techs in gowns now, chairs in waiting room pulled 5 feet apart and moved into hallway, etc.
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Session #8. No dry skin yet, but my neck is turning red now..(radiation to breast and lymph nodes) . Medline remedy phytoplex cream is what my RO gave me..they will offer aquaphor if skin gets dry. Do people like aloe vera better?
I don't suppose anything will help with red skin. Just need to keep it moisturized.
I understand they have to cut non emergency services but I am still bummed they cut out the free weekly post radiation massages . Helps so much with stress.
My clinic screens you when you walk in, only I caregiver allowed, no one under ,16. But the waiting room is the same, small and close. I will try to keep my distance. I am keeping my distance and hardly leaving the house but for treatments.
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1 / 20 today.
Fun timing to start this in a pandemic AND a blizzard!
Treatment was fine. They said it would be shorter after today.
Saw my RO. As of now, the hospital is prioritizing cancer patients. They hope to keep rads open, but obviously there are no guarantees. They have some contingency plans if treatment is interrupted from natural disasters. One option may be to have 2 treatments a day but not there yet.
I kind of had to laugh when they were asking the screening questions and asked if I had any feelings of depression.
Ya think?
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Hi all,
Wish I had found this thread sooner. I'm done 12 out of 16 treatments, and getting through it ok. I've been worried about COVID but my hospital assures me they would never stop anyone's treatment once it has begun. My RO has suspended weekly appointments though. She wants patients out of the hospital ASAP.
The exhaustion is very real, but feels like it has a different rhythm from the exhaustion of chemo. With radiation, I find it comes on a few hours after a treatment, and comes and goes, rather than being with me all the time. My sleep is very broken and I can't seem to nap.
I'm also experiencing some irritation and moodiness, but that could also be due to having my husband working from home and my daughter off school and bored!
I'm using mepitel film, and so far I don't have any skin effects, not even redness. My RO agreed to it because I'm getting chest wall radiation, which is supposed to be harder on the skin, and because I've had a mastectomy with no reconstruction, so the surface is flat, making it easy for any radiation tech to apply new film as needed. I have itchy, sensitive, rash skin and pretty terrible eczema, including on my breasts, so I pushed for the mepitel. Hopefully it will become standard of care everywhere soon.
Good luck to everyone starting (and I would definitely recommend pushing for mepitel), and congrats to everyone finishing up soon!
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I'm thrilled to say that my oncotype testing came back as "no chemo recommended." Therefore, I ran to my first radiation appointment today as they put it back on the schedule. Just to tell you all, if your radiation department doesn't do the following, request these: * Warm blanket and * Music!
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JLB - Great news!
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Just started reading here. I had my RO appointment yesterday with simulation scheduled for next Thursday. I'm sure I'll benefit from many of the postings here. Thank you ladies.
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Good morning all,
On my 5th radiation. RO recommended Calendula cream 3 times a day for skin being radiated. I've been using it. So far so good. She also recommends aquafor, and luberderm sensitive skin unscented. Calendula is a cream so not messy
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Coming back on here to pay it forward, so appreciative for those who were here for me when I needed guidance and support during my bc journey, and I was reminded of that when today I was private messaged by someone who somehow found my old post(s). I will be 55 years old on Monday. Ten years ago in March of 2010, I spent part of my 45th birthday on a radiation table getting zapped. I am a private person and suffered in silence but turned to these boards to help get me through this. So Happy 10 years to me, and wishing you all light at the end of this very scary tunnel and that you come back to provide comfort to others.
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2 / 20
Today I was handed a mask as I entered the hospital - after I told them where I was going and for what.
Rad onc dept check-in they asked me screening questions (none yesterday). They have those things like at a restaurant to tell you when your table is ready to tell you when to go back. I hope they are sanitizing them. I grabbed it with a tissue.
No going to changing room to wait. Went straight to treatment room and got changed there. When I was ready to change back to my clothes, the male tech was still in there cleaning up so I just stood there until he realized. All new for them too!
The hospital parking is normally a nightmare and it's eerily empty.
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Thanks for the update, Moxie32. So strange how different hospitals are different. I went to my second radiation treatment today in Portland, Oregon and nothing was different than when I had radiation in 2017. Not one person had a mask, changing rooms all the same, and the whole treatment was the same. I only noticed that there's no puzzle now in the waiting room and my grandkids that I thought could wait the 10 minutes for me are no longer allowed into the hospital at all. But no temperature taken, no masks, no extra wiping down of surfaces, etc. Just strange.
Has anyone heard of their treatments being delayed or rescheduled? It's hard to know if the news is mentioning one case or a trend that may be coming of delaying all cancer treatment. Has anyone delayed--by choice or not--and do ROs or your MOs have anything to say about the risk of delaying? I hope that's not going to be the case but you never know in these times.
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I'm glad my treatment is at a small uncrowded cancer center and not part of a hospital, I feel like we're more protected from contamination there and staff isn't too overburdened to take on all the new protocols. They now have someone who cleans nonstop- wipes down all surfaces, including the dressing room before I used it and after I came out. Doors are all propped open so no doorknobs or door opener buttons need to be touched. The upstairs chemo lounge always gets cleaned well, seats and tables disinfected after each person, but I assume they're stepping it up there even more, now. Guess I'll find out when there on Monday. On the positive side, the lack of cars on the road means a short daily drive there and back!
11 sessions in and I'm definitely feeling a tad tender now, and pink. I really wish I'd been able to do the mepitel film! The bolus (used for chest wall radiation for those of us who stayed flat) really amps up the skin surface dose, and it shows. Any kind of shirt rubbing the area irritates things, no matter how loose. Since I just started using manuka honey, I've been slathering that on after aloe, and covering it with "bandages" of super soft pieces of cut up fleecey winter leggings (they stick to the honey, and i wear a tank top to hold it all together) It helps so much, and feels really comforting to have the area covered and padded like that! So far the honey seems more moisturizing than any lotion, with better staying power.
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Hi All, I've graduated from the 'Starting chemo in Dec 2019' group to the 'Starting Radiation in March 2020' group. I read through all the helpful posts here. Thank you all for your tips and info.
I live in CA and we just went into lockdown as of last night. But being fresh out of chemo, I've kinda been in lockdown. So not much different. But I'm just scared to be going out now every day for radiation.
I had my simulation today and start Radiation on Monday. I'll be 4 weeks post chemo when I start so I'm still immune compromised. I'm mostly anxious about starting radiation with everything going on. I discussed this with RO today and she said the best window is 4-8 weeks post chemo. With everything going on she said it's best to get started now before things get worse. Ughhh....The anxiety and depression are real. But I'm doing my best to gear up mentally for this and practicing lots of positive thinking.
Is anyone else newly out of chemo and into Radiation?
Sending healing thoughts to you all.
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Hi havefaithtoday. Sorry to meet you here (since we wish we weren't here) but it's also a great support.
I'm not a doctor (actually I am, but a PhD kind), but I'd go with radiation after chemo. There's a reason why it's structured that way and I know there's a timeframe that's best and recommended (as I've been down that chemo, lumpectomy, radiation path in 2017). If you're concerned, I think that's a very valid concern to talk to your RO and MO about--even if it's a phone call or Zoom call. I was happy to start yesterday knowing anything can happen. Radiation killing some of those potentially leftover cancer cells now--yesterday and today-- to me is better than having them there and waiting awhile longer.
Positive thoughts--boy, that's hard some days. We, too, are on lockdown/shelter in place/or whatever else they choose to call it. Ugh.
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Have Faith, I finished up chemo end of December, had surgery in Feb. just finished my first week of radiation. So far so good. My breast is a little pink, using chemo RO recommended. My surgery went well, all margins including lymph nodes clean. I'm triple neg. Right breast
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I have several creams for radiation. Is anyone finishing up (since that's when the burning comes) and had little burning? If so, did you use a particular cream or lotion that you thought had a good impact?
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i was told it really doesn't matter which cream you use so long as you keep using it, my RO said fragrance free and gentle was all that mattered. She said some people naturally fare better or worse, but they don't know why. I looked up every clinical trial i could find, and the results say "something is better than nothing" but no cream has been proven to be "better", and even things like aloe and calendula have mixed results in trials as to whether they work any better than a lotion. It seems Aquafore is commonly recommended because it's thick and stays on well, and cushions the area a bit. The damage isn't a "burn" per se, but dna damage to the cells deep inside, that grow to the surface and are easily shed and end up raw, which may be why mepitel film helps (holds all the tissue together so old damaged skins cells aren't sloughing off, maybe?) And why Spoonie's system of thick creams "lasagna" slathered on with strips of Xeroform bandage helped her.
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Thanks, HeartShapedBox, that's helpful. I've planned to use green tea bags but when it comes to lotion or cream, I didn't if one was shown to be better than others. What you say about skin sloughing off and coming to the surface is how it was described to me as well. This explains why I was fine through four weeks of radiation in my last breast cancer and then, at the end, the skin was seriously pink like a sunburn. But after all I'd been through, just didn't seem like that big of a thing to endure. It wasn't too bad really. I don't know anything about the film you mention, but I think I'll be okay.
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JLB, thanks for the encouragement. Yes, I know this is the best window to start the radiation now that I'm almost 4 weeks post chemo. My anxiety about starting is all around the coranavirus and me still being immune comprimised. I'm scared to be out at the radiation center every day with all the people that come and go and even the staff. But I don't think it's gonna get much better if I wait another 4 weeks...so best to get started now. You're right, getting any of those cells killed now is best. I know the center is taking every precaution with extra cleaning and safety measures right now, so that's good. And you're right, we need to keep those positive thoughts going. Thank you for the encouragement. Sorry you are going through this a 2nd time. Is it the other breast?
Marta, good to hear all.is well with 1 week down. Did you have a lumpectomy? I read some posts about people saying they had a lot of soreness and restriction on movement on the side being radiated. I hadn't heard of that so I wasn't sure if it's common. Have you been able to carry out your normal activities with that side (cleaning, laundry, gardening, etc.).
Heartshapedbox, thanks for explanation. That's interesting. I got Miaderm cream and just started using it today.
Does anyone have any other tips on clothing to wear etc. In the beginning if you're not experiencing burning or skin irritation, is it fine just to wear whatever is comfortable on top? Or is it recommended to only wear cotton T shirts?
Thanks lovely ladies:)
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Havefaith, I'm sorry you're going through this and the challenges of Corvid-19 makes it an even greater challenge. Yes, I have a new primary on the other side so I had another lumpectomy on the new breast cancer side. My non-cancer side was already bigger so I had a reduction and lift--to try to make the two boobs that I'm thankful still to have--match. The lumpectomy's been a breeze but the reduction/lift side is still swollen after four weeks--also a bit bruised and not at all back to normal. That's been my biggest issue. But it is getting better every few days or so.
In my four, maybe five weeks of radiation in 2017 (with boosts, I think), I didn't ever wear anything special. This time I bought a Makemerry bra that was designed by a radiologist. It's pretty dang soft and nice. I hardly wear a bra but seemed like I should treat myself for when I do (I think insurance paid for 75% or something like that). As far as movement, I never even noticed that I was having any issues during radiation. It was really an easy trip for me. I was active, exercised, etc with no issues (wish I'd get my lazy butt up to exercise these days!).
Try not to let the anxiety and uncertainly overwhelm you. I find that a balance somewhere in the middle works best for me--a little news, a little social, a little Zoom meetings, a little white wine, a little chocolate, a little of a bunch of things but nothing over the top. And, if anxiety does get to you, just rant and rave and vent here. Best to you.
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Have Faith, I had a partial mastectomy with reconstruction. (bascially lumpectomy). Doing well. All margins and lymph nodes clear. Radiation going well. Triple neg breast cancer. Very little pain post-op, no restrictions now, able to move upper extremties without problem. I started doing exercises as soon as I was cleared, now doing weights 5 pound to keep things moving.
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Hi all, I'm starting 3/30. 28 regular and 7 boost, right side. Kids and husband are home and getting on my nerves. I miss being home alone. NJ is also on lockdown, but no talk about radiation delays yet. But I was planning on getting my ovaries out and suspect they will delay that. I have an appointment with gyn next Wed. I'm weird, but kind of like going to appointments because they get me out of the house. But I am immune compromised from chemo and need to be careful.
Baffledbutterfly7, I had some pain and throbbing in my arm before surgery, which went away after surgery. I think the cancer was pressing on the nerves. Now in the last few weeks of chemo, my arm is numb and tingly when I wake up. My RO said it's neuropathy, not lymphodema, although my chemo is not supposed to cause neuropathy. I think it's inflammation of some sort, and not neuropathy because it does go away when I get up and get the blood flowing.
JLBinPDX, I'm jealous of the man, and also have a difficult 12 yo daughter and 14 yo son.
Hi havefaithtoday, we're on the same chemo and radiation schedule. Havefaith that radiation will be easier than chemo and you will be ok regarding the virus, just don't touch your face until you get home and wash your hands. I think it is important to continue treatment.
I forget who was talking about bras. I just stuff polyester fiber fill from craft store into my sports bras that already have removeable cups and it works great and is light and comfy. Got the idea from knitted knockers, people knit prosthetics and fill them with foam and give them away for free.
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JRNJ- I also almost like going to my daily (11th today) radiation because it gets me out . Ohio just issued an ordinance that we are to stay at home unless essential. I offered my kids to drive with me and wait in the car just to get out. This is week two of husband and three somewhat older kids and me being home, as schools have been closed since last week here.
I haven't had to wear my bra (mastectomy no reconstruction yet) since I don't go anywhere else so that seems much more comfortable.
Anxiety looms.coronavirus and more. I try to find ways to relax and while it is true that radiation is not as physically hard for me as chemo (although I am still on Kadcyla) and surgery, I do find the daily regiment makes me cry - Laying there on the table getting radiated. Every day is this smack in the face reminder. Even though my stand alone center is so great and I get my warm blanket and music which is awesome. Well someone said I could rant and rave here for anxiety release, so thank you!
At the same time, i feel positive. We CAN do this!
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Flowerkid, one thing I learned about breast cancer from my first journey in 2017 is that the emotional toil is real. While the last weeks of radiation can be the beginning of the end. for many women, it's the beginning of a new phase rather than solely an end. That new phase can often be an emotional struggle. It seems that when the appointments end (or nearly), the whirlwind slows down, the chaos subsides, and the health aspect starts to settle out, some reality of what you've been through may take over. We hear these sentiments often in the very valued support group that I attend (or, not now, of course--but at least now it's a conference call). Crying on the radiation table is likely a release--maybe so you don't do it as much at home and/or in front of kids? That can't really be a bad thing. But don't be surprised if some of that lasts for awhile. But then I'm here to tell you that you put new pieces back and create a new normal--and, as I wrote prior--possibly a better normal than prior.
Just a short anecdote. On my last day of radiation, October 2017, I decided I needed something new in my life to celebrate my coming out of triple negative breast cancer. On my way home from my last radiation appointment, I stopped at a maker space and said "I want to become a woodworker." Nope, I didn't know a thing about woodworking. I'd tried some other new things in the previous year, but woodworking was THE thing. The woodshop helped me be social in a bigger way, offered mental stability in not worrying and just focusing on a project, and helped me regain my phsyical strength after my body had been through so much. Since then, I'm at a different nonprofit woodshop that I greatly value in my life. It's a professional, high quality shop with people that are passionate about what I'm still learning about. I'm commited and not sure if I'd have found woodworking if it weren't for my first breast cancer. I have another story of another gem that came out of my bc, but I'll save that for another time. Just know, ladies, that wherever you're at is okay. That place will change and morph--probably in good and great ways and some challenging ones as well--but wherever you're at is probably an okay place to be. This is tough--and more so in the virus era--so be kind to yourself and as understanding to yourself as you'd be to someone else that you love. Julie
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Wise words J - thanks.
Day 3 was uneventful. No mask handed to me today. I had the one they gave me Friday in my purse so I used that.
I sew, so I’m going to make a couple I can wear and wash. Better than nothing
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JLBinpdx- thoroughly awesome to hear about your woodworking experience! I love it!
And what perfect advice. Thank you.
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