Starting Radiation November 2019

Water Tower - Re creams, I used some calendula that was recommended by someone on this site called "MJ's Herbal". It is only calendula, olive oil, and something like beeswax - no chemicals. You can get it on Amazon just by googling it in the search box. My center gave me a calendula cream, but it did have a lot of chemicals in it, so I opted not to use it and went with the one that someone who posts here recommended. It's expensive for the amount you would need, but worth it given the situation.

Toward the end of my sessions (I did protons, not photons), I actually stopped using the calendula cream though, and switched over to a cream with boswellia (frankincense) in it. Boswellia is an anti-inflammatory and toward the end I was starting to get quite red and itchy, so I put some on - alternating with the calendula at first. The boswellia cream seemed to dampen the intensity of the itch and redness of the radiation dermatitis, beyond what the calendula was doing. Because of that I decided after a few days of alternating the two creams, to just go with the boswellia. It has been fine. It is actually much less greasy than the calendula, but I do get a feeling sometimes that my chest has been encased in beeswax, as it seems to almost "harden" a bit after several applications and before a shower. (Both creams contain beeswax and both have their own "messy" properties and can ruin clothes.)

A word of caution about boswellia creams: Most are made for arthritis and joint stiffness and contain all sorts of other things like capsacin (sp?) and more. The only one I have ever found with none of these other ingredients - and hence useful for this radiation purpose, is one by a company called Bianca Rosa. The cream is called something like "70% Boswellia." I had never heard of this company before and was a bit wary, but went ahead and ordered it (Amazon of course) and it has been fine - expensive in the quantity needed to get through this process, but I have decided to continue using it until I have healed. I am now in that two week phase after treatment is finished, when they say it will get worse before it gets better. So far, after about 6 days into this phase, I have not really gotten worse. It is not healed yet, but the itch and redness is no worse than it was when I only used the calendula. I think that is a sign that the boswellia might be working better. Who knows, and I suppose I could still get worse, over the next week, but so far, so good.

As an aside about boswellia - it is being studied for anti cancer properties also. While the chest redness is not specifically about cancer cells, I did want to note that boswellia/frankincense is also showing anti cancer activity in the lab, and I think in rodents, when taken internally. It's use in the radiation context is about it's topical anti-inflammatory abilities though. There is also a study or two out there that shows that it did have some positive effect on radiation dermatitis when compared to other creams or no cream at all, etc. Again, you can find that by googling something like boswellia and radiation therapy for breast cancer. Only a couple of small studies or so, but with encouraging results.

Hope this is helpful. I cannot speak to the other issues you ask about, but hope you find answers.

Above where it says my post "has been removed by the Community" is just because I mistakenly entered the original one twice, not because it was shocking or offensive or anything.

ThreeTree ...you shouldn't have to explain at all why your double-post was deleted, and "has been removed by the Community" makes it sound like your post was so offensive to everyone they had to remove it.

I wonder what they'd find wrong with it just saying "Sorry... double-post." Then those who post won't have to feel so bad about their double-posts.

ThreeTree ...moderators always walk on a high-wire of sorts, trying to please the community while also doing what must be done to maintain the Forum. I just wish they'd give some attention to working out problems like these since it looks like they're so easy to solve. But it's been my experience that common sense doesn't always win the day. Let's just hope that maybe in this case it can. Do let us know how your situation ends.

Lung involvement is pretty rare - did they tell you to expect the cough, or that it could be a side effect? Hopefully the latter - there are lots of rare side effects to warn about (neurological damage, heart damage, etc., one more reason why cancer sucks) but most of us will never experience them.

I do want to urge you to advocate for more communication time with your RO to ask these questions. Do you have a medical email system where you go? Or could you ask for an appointment with him/her or the nurse or NP? You should be part of the decision making team, and that means your questions need to be answered!

Hi Suzee, it was just a possible SE. Someone in the waiting room said they would give steroids for a cough, but I sure want to avoid that. You're right about advocating for more answers. My RO is good about answering the electronic portal, and I'll see her again on Tuesday. The big problem so far has been chaos in the clinic. On my first radiation day, I got there at 7:15 AM after a one hour drive in the rain, and they said the whole computer system was down and the machines wouldn't work. So they sent us home unradiated. The next day was successful and I saw the doc briefly afterwards. In the afternoon, I had an unrelated routine colonoscopy and endoscopy! Radiation + starving, oh boy. The second day of rads, yesterday, they were running more than an hour late. So the folks in the waiting room had fun complaining together. OK, not that much fun. Everyone is VERY nice who works there, and once I'm in the Trilogy room it just takes 3 minutes. But the hallway layout is super disorienting, so I find myself wandering around like the confused old fart that I am. Seems like there should be a bit more, uh, patient oversight. Generally the attitude is that all this is no big deal, very relaxed and cheerful. In many ways that's a good thing, but at least for the first 2-3 sessions, there should be more explanation. For example, no one ever said "The radiation itself is completely painless." I do a lot of research so I knew that, but what about the folks who don't, and are afraid it will be a burning pain from the machine? In fact, the reason they were running so late yesterday is someone was kind of freaking out not wanting to go in there. But seriously, that part of it is easy. Small bit of advice, wear the eye mask they offer, or bring one. Very bright lights.

I was told to use aluminum free deodorant and no cream four hours before treatment. I usually moisturize early morning and then after treatment. Today was my 14/25th treatment.

@Hope_Floats2, even with Miaderm 4 times a day, no soap, cotton bra, and all the other things they told me, the radiation has taken a toll on my skin. I'm at 15 of 20 visits today, and am now on a steroidal (prescription) cream plus a huge overnight dressing that helps calm it. Although some women don't experience these problems, if you can try to avoid them just in case, that's way better! Talk to your radiation team about how to prevent the skin problems, yes. Deodorant isn't a problem, but antiperspirant can react badly with the radiation. Just make sure you're using one that isn't labeled antiperspirant.

I started proton radiation in October and finished in November. I just wanted to add to the general body of knowledge here about my progress in hopes that it will help others. I am about 2 1/2 weeks out from the end of the full radiation and about 1 1/2 weeks out from the end of the boosts. The area that hasn't been zapped for about 2 1/2 weeks got pretty red, itched, and was sore and one small area of it (where I have a lifetime of previous sun damage) seemed to peel just a little bit. I think they call it "dry peeling". That area has almost healed up at this point. The area they continued to zap for the boosts is still red/pink/tan and in a couple of small places is itchy and sore. There is also some modest "dry peeling" going on with a spot or two in that area also. Other than that, I have not had any trouble. I have read so many awful stories about others who had all that moist desquamation (sp?) and weeping/smelling, it broke my heart, and I am just glad that nothing that bad has happened to me. It ain't over 'til it's over, but I think I am going to make it through with only fairly moderate troubles.

Like the previous poster, however, I have been hit with pretty bad fatigue, and also like her, it hit rather suddenly. Mine is both physical and mental. Just going to the store can be "the big event" for the day and very tiring. I also find it difficult to "think straight" a good deal of the time. I have read many posts on this site that I mentally would like to respond to, but am just too fatigued to collect my thoughts and type. It is morning now, so I have a little energy. It will be gone by this afternoon and I will be completely dead by tonight. I too was told that if the fatigue did not lift in 2-3 weeks it could be months before it goes away.

While I have no idea what actually helped or didn't regarding the level of radiation dermatitis that I have experienced I can offer that I did use creams 2-3 times a day, primarily calendula, then boswellia, and now Shikai borage dry skin lotion. I used pure aloe a handful of times, but not as the main daily thing. Additionally, I have been taking turmeric with black pepper and I stuck pretty closely to the foods recommended for radiation treatment on the Foodforbreastcancer site. That is a really interesting site overall and I would recommend it to anyone. Everything recommended there is supported with studies. She notes foods to try to focus on for all aspects of treatment and cancer types, ER+, triple negative, during chemo, during radiation, etc. She does not advocate supplement use due to the fact that safe dosages have not been established, and because some supplements are actually looking like they cause harm, so encourages people to get these substances/nutrients from food. In spite of that I have been taking the turmeric mentioned above, and internal boswellia - both for their anti cancer and anti inflammatory properties. Also, as before I used the boswellia cream externally for the anti-inflammatory effects on the radiation dermatitis.

Hope this is of some value to someone.

Happy Thanksgiving to all!

Later this morning is my first visit to the radiation oncologist. I had a lumpectomy Oct 24 then had to return Nov 14 for surgery because of a very large hematom/seroma. It is healing up this time (last time the swelling never went down and there was massive bruising - the breast surgeon said she had to remove lots of clots and old blood). So I am worried because I already have edema in that breast - the incision is above the nipple at 12:00 and I guess the lymph is trapped on the inner side because I have the large pores (orange skin) and my bra makes indentations which take 15-20 minutes to go away. Also its kind of lumpy. The BS didn't seem to understand why I was worried about what radiation would further do to it so I guess I'll see what the RO has to say. I haven't met him yet - I talked to a different RO right after the biopsy just to get an idea of possible options.

I had micromets in the one sentinel lymph node and slight LVI so they are recommending whole breast radiation and regional lymph node radiation. No chemo though, since my Oncotype was only 4. Also they haven't said anything about starting hormone therapy yet - I'm post menopausal so it will be AI eventually.

Anyway I have my list of questions to ask the RO all printed out - thanks to this forum I have a lot of specific things to ask!

-M

Day 17 today of radiation. This is the first day I felt a minor itch on my chest, so I guess all hell might break loose very soon.

Thanks for the validation on the fatigue, @ThreeTree. I am finding that as long as I drastically curtail anything physical or hard (a slow one mile walk is a huge event - I was doing 30 mile bike rides not long ago!), I can manage OK for now. I can get through work (at home), watch a little TV, and go to sleep early, but still maintain my cognitive ability and even my sense of humor most of the time. My husband drives me almost everywhere (I generally like driving more than him, so this is a switch) and has been doing all the shopping because that's a huge energy drain and also handling all the yard work I'd love to be doing. No social life or fun outside the house, sadly. Our daughter is coming over for a few days for the holiday, but it will just be about watching movies and eating (she's cooking, hooray!)

my RO said not to take antioxidants because they could interfere with the radiation. He cleared me on Vitamin D, magnesium, and B1

Thank you, Seattle. I never heard of that but it sounds exactly what I need. I've been looking at nipple shields in the nursing section, but most of them stick on and I certainly don't want that!

Oh thank you Giddyup. They haven't been telling me to hold my breath. Mine's on the right, so it wouldn't hit the heart, but I'll ask them tomorrow about the lung. I'm at 9 out of 19 so almost halfway. Starting to get some dark blotches all over and some speckles underneath (C cup), but not too bad yet. I use Aloe in the AM and Aquaphor at night. And no fatigue yet, in fact I have been more peppy! Don't know what that's about, but I'll take it.