Starting Radiation July 2021
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I love melatonin for sleep - interesting that a cream form could help with radiation, too.
Just wanted to respond because of your mention of antioxidants - before you do anything antioxidant-related, please consult with your oncologist. I was surprised to learn that I was NOT to consume anything strongly antioxidant during treatment! I forget the exact reasoning, but something about antioxidants actually protecting the cancer cells against treatment and potentially making treatment less effective. Like I said, I don't recall exactly why and how, but I was very surprised to be told to avoid antioxidants - so something to bring up with your oncologist!
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Eviec1, Glad I took your advice and wore old clothes. Had my first session yesterday and they put a couple of marks on me. They did cover them with the clear stickers though. My appointments are all over the place this week from early morning to late afternoon. I get my regular schedule next week sometime. I’m exhausted. At least today I was in and out in 15 minutes. Hopefully I’ll sleep a little tonight. I also was told no antioxidant supplements.
CoastieMom, how is that drive going. I hope you found someone to help with that. Mine is only 50 minutes each way and after 2 days I’m already tired of it. My son gets in Friday night though, thank goodness. I am truly blessed.
Is anyone else also trying to fit PT into their schedule? I’m supposed to go once a week but unless I can get it scheduled for just before or after my radiation, it isn’t going to happen. No way I’m driving 50 minutes to town twice a day. My therapist has a crazy schedule. She’s the only lymphedema/cancer specialist in the rehabcenter.
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Goldcity, I understand what you mean regarding fitting in the PT. My PT would like to see me weekly but I have no idea how to accomplish that with my schedule. I'm glad your son is arriving on Friday and that you can look forward to it.
Thank you Evie for looking out for me. I have been blessed to find a wonderful team of doctors. My oncologist green-lighted powdered fruits and vegetables for me. Many oncologists will steer us clear of any antioxidants whatsoever out of an abundance of caution. Here is a good general link, text below : https://integrativeoncology-essentials.com/2019/12...
Blessings,
Esther
Is it Safe to Take Antioxidants During Cancer Treatment?
Dec 8, 2019 Brian D. Lawenda, M.D.
Antioxidant Effects
The question of whether it is safe to take antioxidants during chemotherapy or radiation therapy is not a simple one to answer. Experts have been trying to definitively answer this question for many years, but it remains very controversial (REF). To play it safe, most oncologists recommend to their patients that they avoid taking antioxidant supplements during these treatments due to the concern that they might reduce their efficacy.
The vast majority of data does not seem to indicate a decrease in anticancer effectiveness of chemotherapy nor radiation therapy. However, not all data support the safety of antioxidant supplementation during cancer treatment that relies upon the production of free radicals. For example, one study found that smokers who supplemented with alpha-tocopherol (vitamin E) and beta-carotene during their head and neck radiation therapy had increased recurrence and mortality compared to those who didn't supplement. These authors found no differences in the non-smokers (REF). Furthermore, there may even be a reduction in the capability of built-in, protective, anticancer mechanisms (i.e. apoptosis) in cancer cells, to die when supplemental antioxidants are taken (REF).
In reviewing the evidence of supplemental antioxidant protection of normal tissues from the damaging effects of chemotherapy and radiation therapy, the preponderance of data supports the potential use of these antioxidant compounds for this indication (REF). In fact, the U.S. FDA approved a potent antioxidant drug (Amifostine, WR-2721 or Ethyol), for use during radiation therapy and chemotherapy to protect sensitive tissues from the damaging effects of treatment. The approval was based on an extensive review of the data, which found no reduction in the efficacy of radiation therapy or chemotherapy when Amifostine is administered during treatment.
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Thanks for sharing that, Esther - it's a very interesting topic!
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July 2021 Radiation Friends - what are you using for topical creams for redness? I started with Aquafor on Day 1, but I feel like I'm swimming in a grease pool when I use it. Tried Calendula, but feel like it did nothing. Aloe has helped, but it dries out my skin and makes it tacky. Fortunately, I found a radiation buddy (she's one day behind me) who mentioned RadiaPlex and Regenecare, both of which are prescription-only. Has anyone has success with either of those?
Other than the redness, I have only slight tenderness, and until today, had wasn't tired. I'm fortunate because I have a very short roundtrip daily, which I think that helps keep the fatigue down. I've decided to schedule a vacation day every 11 days to celebrate the completing a 1/3 of the my treatments.
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Glad to read the conversation on antioxidants. I took just a few safflower oil capsules during my Taxol treatment (probably a total of 10) -- my MO approved it -- but then I quit when I learned a little bit more. Even though she obviously thought it wouldn't hurt, I still worry about those capsules. I wish everything were cut and dry!
I had day 2 of radiation today. I've been tired both days, but I'm not sure if it's the radiation. I know I'm still feelng the effects of AC+T chemo, so it may be hard to tease out which is which. But -- I'd like to know so that I can prepare for more fatigue with radiation that I thought I'd have.
Anyone else learning to distinguish radiation fatigue from post-chemo fatigue? Thoughts?
Jennie
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I didn't have chemo so can't compare, but after 11 radiation treatments, I can say that radiation fatigue is real. I actually felt worse last week than this week, but I know there's more to come....
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JN5000, I agree! I wish everything were more cut and dry. I can't believe how much time I have spent researching about whether something recommended to me was really safe or not. At this point I am going to trust God to protect me and move forward the best I can. All of you have been such a blessing with your cautions, suggestions and great ideas.
Jenacass, how great that you found a radiation buddy to track with, and your idea about a vacation reward every 11 days. I am about to begin 35 treatments and have my Wall Calendar ready to mark the days. The wait to begin seems like forever. I haven't heard of those prescription products but hopefully someone else here has. I was counting on Aquafor!
Evie, I'm sorry about the fatigue happening already. I remember when you said you fell asleep at your computer.. that is definitely going to happen to me, too! I know they say exercise is important to help lessen the fatigue, but I wonder when the best time of day is for walking. Mornings?
Blessings, and sleep well,
Esther
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Jennie-You asked what creams people were using. At my check in with the nurses on Friday, they gave me Medline Remedy Phytoplex cream. Before that I had used an organic aloe gel. And I also bought some Aquaphor…but I agree that it’s super heavy, and at this point, I don’t think I need it. However, I’ve only had 3 treatments so far, so my opinion may change!
Evie and Jennie—I’m a bit concerned about fatigue too, especially since I’m planning to go back to teaching at the end of August. I did my chemo before my surgery and it really knocked me out…although I think a good part of that was the anemia from my super low red blood cell count and a pulmonary embolism. I can just pass on that most of my friends who’ve done both have said radiation was “a piece of cake” in comparison. But I think that also depends on the timing of your treatments and how much healing time you had in between.
Hope everyone is enjoying a lovely, restful weekend!
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Hi all,
I'm almost halfway through radiation (tomorrow will be 14 of 28 sessions) and I'm just now getting red, itchy skin. It seems to have come on rather suddenly - like, I was fine for 12 treatments with no visible effects, and now boom after 13 treatments my axilla has become quite red and sore, and I have patches of red skin on my clavicle and above the breast. I'm not sure what to expect in terms of how much worse this will get... something I'll ask the RO Tuesday but of course I'd welcome hearing anyone else's experience.
If it matters, I've been using Aveeno and Eucerin creams that the RO's office gave me.
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5 treatments down, so far so good. I finally settled on Miaderm for my radiation cream. time will tell how well it works. There seems to as many different creams and lotions as there are RO’s. None of them particularly cheap, either.
I reward myself with a piece of chocolate after each treatment. I almost look forward to the trip (my son drives) just for the chocolate.
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Fourth treatment today. My skin was sensitive, red, and itchy after #3, and I had some sharp pain and some dull aches in my breast over the weekend. I'm surprised I have these SE's so soon, but I am coming off chemo, so that may be making a difference. I will talk to my RO on Tuesday, make sure all of this is within normal. I'll also talk to the nurses today during treatment -- see what they say.
Hope everyone's doing well!
Jennie
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I’m surprised you’re having side effects so soon also. I would also be inclined to think it has something to do you with just coming from chemo. How bad were your side effects from chemo?
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Hi Goldcity
I talked to my doc today. The skin sensitivity, sharp pains, and having enough sensitivity to not sleep on my treated side, were all within normal SE possibility. The "punched" feeling I had is not expected. He checked me out -- there's no evidence of infection or problem, so he just wants to wait and see. It hasn't hurt like it did not Saturday -- so who knows.
Chemo was tough for me -- Adriamycin is pretty hardcore and I'm still fatigued from it. The doc didn't mention that as a contributing factor. Mostly I think he was surprised but willing to wait and see if the pain returns.
So -- I'll wait and see and pay attention.
Today was #5 -- only 15 more to go!
Hope all is well for you!
Jennie
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I have a maybe odd question. Has anyone noticed a higher resting heart rate than usual during rads? I wear an Oura ring (a fitness tracker that also tracks sleep, heart rate, respiration, etc) and for the past two weeks or so my resting heart rate (including during sleep) has been quite a bit higher than normal for me (fortunately still within a normal range, but it is high for me and persistently so, which has never happened to me before). I did mention this to my radiation oncologist who said there is no connection between heart rate elevation and rads (especially since I'm getting rads on my right side, so not near my heart). As smart as I know my RO is, sometimes they aren't always aware of all the weird things our bodies can do during treatment, so figured I'd ask here, in case anyone else has noticed this?
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I track my blood pressure and heart rate also. I haven't noticed much difference. A tad faster maybe. I run a little higher anyway so I don't worry about it. Could it be the fact that your radiation schedule and extra traveling, change in meal or snack times maybe make a difference? I've had to adjust my eating schedule a little. Well, a lot really. My son is in town for a month to drive me which is great, but he's also this fantastic cook and he cooks very heavy, fattening, salty meals and very rich desserts. We're not used to eating like that at all and already it's starting to wreak havoc on my body systems. And I'm already gaining weight. I can't say no, but I am eating small portions. It's still rough.
JN5000, I had woosy (sp?) chemo compared to yours and I was fatigued for about 6 months. I don't think it goes away too quickly. I did end up with neuropathy in my hands that has not yet gone away. And of course the side effects from letrozole. As to my radiation treatment, 7 sessions down, 20 something left to go. No noticeable side effects yet, but I'm expecting them to hit anytime. The radiation nurse said that although she didn't have personal experience, she has heard from patients that the fatigue from radiation is different from chemo fatigue. Not necessarily less, but different. We'll see.
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Mmmmmm I would love some homemade deserts
I am definitely starting to burn - even the radiation techs mentioned it today. Not terrible, but definitely pink. Heart rate still elevated and no idea why. I have my weekly check in with the radiation oncologist tomorrow, but my regular RO is out of town for two weeks, so will meet with a different RO. I will ask him/her as well, just in case he/she has had some different patient experience that might be relevant, because I can't think of what else might be causing it.
Has anyone had to cancel one of their radiation sessions? My daughter goes back to school soon and summer has been spent on cancer - boo! I wanted to take a day off and give her a nice day trip somewhere nearby so that she feels she did SOMETHING fun over summer before she goes back to school. Will that be a problem? I wouldn't think so since we get weekends off anyway (so missing a day shouldn't be a huge deal, right?).
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Just finished #6 today, and still feeling good. I did take a nap yesterday, but I’m not sure if that was due to treatment or staying up too late the night before! 😉. I’ve also had the experience of having my chemo before my surgery, and then having more than a month after surgery before starting radiation I really think that allowed my body to heal in between. In fact, I just had blood work done on Monday and everything was back in the “green/normal” ranges
Right now the most stressful part of my treatments is finding a parking spot! The hospital where I go has expanded immensely since it was founded in the 1800’s, and so there’s very little parking aside from the parking deck…which is not very close to where my treatments are. But, at least I’m getting my exercise in, right?
Evie—I don’t think taking a day off should be a problem I was told they’d accommodate a day off for my ovary surgery, so I think you’ll be fine
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I have had elevated blood pressure and heartrate for quite a while -- even while visiting a doc for a non-radiation and/or non-chemo appt. Last time the nurse was alarmed at my BP so she wanted to take it again. I took a minute to calm down and just breathe -- my lower number dropped from 105 to 85. Just walking to the room causes my heartrate to go up -- I'm still somewhat exhausted from chemo and I feel it.
Today is rad #9 out of 20. Feeling sore but not bad.
Have a good week, everyone!
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Good morning! I'm only on #3 of 33. I am grateful to be learning from all of you and praying as I go.
SingingWendy, I'm sorry the parking situation is so bad. Do they have Valet parking? I read from other posts about the kind valet attendants not accepting tips because they know you're going through radiation and have to be there every day. There are threads here about what kind of gifts to bring for the valet attendants at the end of treatment and I thought that was sweet.
Evie, I hope your resting heart rate is not too worrisome. I wonder if it's just working a bit more because your body is building new healthy cells for you to replace the DNA damaged ones from our treatments.
Oh, and I noticed (with relief) that they didn't schedule me for Labor Day Monday, and that will mean 3 days off, so taking one day off doesn't seem like a problem to me
Love and blessings,
Esther
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Yes, Esther, that's what the second radiation oncologist suggested when I met with him last week (my regular is on vacation so I had a "sub" for my weekly check in). He basically said while there isn't a direct link, it could possibly be the result of the body just having to deal with the radiation and working overtime to try to recover. So I'm going to assume that for now and just keep monitoring.
This is actually my last week of radiation - I'm in the homestretch now. Wednesday was supposed to be my last day, but I'm playing hooky to take my daughter on a day trip to try to squeeze a little fun out of summer before she goes back to school. Because of that, Thursday should be my last day. I am definitely burning now - not awful but definitely have some angry red spots and I noticed some peeling today around my nipple. Last week I also had an odd feeling in my throat - it felt like when you get phlegm caught in the back of your throat, but I otherwise had no congestion (so didn't seem like post nasal drip, which is what it felt most like). I also feel some tightness in my chest on occasion. Nothing terrible, but definitely noticeable. Hoping this all goes away in the next few weeks after treatment is completed. Do you all hold you breath during radiation? I have heard of that to prevent it from hitting your lungs, but was never told to do that and I haven't been. Not sure if that could be causing the problem (maybe lung inflammation?).
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JN5000 I actually have the opposite issue with my blood pressure - the more stressed I get, the lower it goes. I just checked my notes from the morning when I went in for my surgery with my anxiety through the roof:
Blood Pressure:99/67
That's what happens when I get super stressed. When I relax, it goes up to normal.
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#10 under the belt for me. Where I go they have reserved spots in front of the building for radiation patients. They give you a parking pass when you start. Without it, it would be difficult to find a space. The hospital complex is a zoo. We park and then I'm in an out in 20 minutes. No redness yet, only a little noticeable fatigue. My arm is flaming red from where I got the covid shot though. Not sore, just very red and very warm. Popped up over the weekend even though I had the shot end of last month. I don't do the breathing thing, although it is offered at the facility for some patients. My cancer is on my right side, so no problems. I feel like I'm at a resort or something when I go. Everyone is so nice and respectful. Looks like slowly but surely we're all moving forward.
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Finished #10 today…1/3 of the way there!
Esther..They do have valet at a different entrance. I did talk the the radiologist about it, and apparently they even have a system where if you are a patient and have to park in the deck you can call and they’ll come get you. But I’m envisioning that means a wheelchair and being paraded through the whole hospital, and I’m feeling too good to do that. 😉. This week has been better so far…of course now I’ve probably jinxed myself! Lol
Evie— I was going to ask about people’s positions too! I was first “simmed” on my back…and they mentioned practicing holding my breath. Then they changed their minds and I’m now getting treatment laying on my stomach. Since the breast is already away from the heart and lungs, I don’t have to hold my breath.0 -
I'm 75% done... just 7 sessions left. I am badly burned - super super red everywhere, including my back (exit path for the clavicle zaps) and RO has now prescribed me a steroid anti-itch cream and switched the moisturizer from Aveeno to Aquaphor... so now I am walking around all day like a greased pig LOL. I'm a little scared about how much more skin damage will occur - RO said the skin under my arm was definitely going to "break down" ugh. I've not been asked to hold my breath at all (is that for left-sided rads?).
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sunshinegal, I'm so sorry you're burning so badly. I did not know about the back. I know the aquaphor feeling, a greased pig is a good description. I think you're right, breathing is mostly for left rads, depending on where the tumor is. I'm not holding my breath either. The good news is, only 7 left to go for you. You're getting there. I know it's a long haul, hang in there.
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Thanks for the encouragement, goldcity. Only 5 treatments left!
I am worried about how much worse this is going to get. The skin in my armpit has cracked open so it's open & raw (ewww!) and nearby skin is peeling badly. It's painful to extend my arm over my head during treatment. The RO says this is still par for the course... I just wish someone had forewarned me about the extent of it! My mom had radiation ten years ago and said her skin just got brown, no big deal. Maybe she had extremely localized rads, though? They're doing my whole chest wall and axilla and clavicle so it's a very wide field of skin damage.
The fatigue has definitely hit me. It started a week ago, and now I am spent most days by about dinner time.
Is anyone else getting headaches? I am not prone to them but I've had headaches 3 times in the last week. Just wondering if they're related.
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I was definitely getting headaches at the beginning, but they seem to have gotten better - or at least replaced by the fatigue. If it's not one thing, it's another.
As of yesterday, I am officially done with radiation! I brought donuts and the staff presented me with a certificate of completion that they had all signed - it was very sweet and in a weird way I will miss seeing them every day (although won't miss radiation!).
After I had a meeting with nurse who warned me that the burns would get worse before they better and that it would be about two more weeks of my skin "cooking." She also said that the fatigue could last for another month and, to be on the safe side, not to shave for another month (ugh). But I can wear deodorant now - I guess I should be grateful for that lol
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Sunshinegal, lifting you up and thinking of you as you cross the finish line soon!
Evie, congratulations on being done! I know what you mean about getting a bit attached to the teams that are helping us every day. I know you were a blessing to them in return. How I would love a donut!
Blessings,
Esther
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Thank you, Esther! Four more to go!
My skin is looking a little better. I applied the steroid cream and spray Aquaphor 3x daily over the weekend and I think it made a real difference. I haven't had a headache in several days, so maybe that was just coincidence. What I've moved on to worrying about is capsular contraction, as I have a silicone implant on the rads side. Trying to take things one day at a time, though...
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