Starting Radiation in July 2019
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Clowdin, sorry I don't know any of the answers, but wanted to welcome you. I just finished radiation yesterday - 15 whole breast plus 5 boosts. No burning yet (symptoms sometimes continue to get worse for 7 - 10 days after final treatment. Once you get ready to start again, be sure to lubricate 3 x a day and drink LOTS of water.
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Oh my goodness, Cowdin - what a mess! I'm so sorry.
I don't have any medical advice, but I'd suggest getting a second opinion asap if you can, so you truly understand your options and are more comfortable that you are taking the right path.
Keep us posted.
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Clowdin,
Welcome and so sorry all this happened to you. Since I am doing radiation therapy in between two surgeries, I can tell you that usually radiation cannot be started immediately after the surgery, and on the other hand, surgery cannot be performed right after radiation, in both cases skin needs to heal first. Therefore I am guessing that sponge has to be removed asap, if they don't do it now it might be there for long enough, therefore doing it first and going back to radiation once everything healed sounds right. At least, as right as it gets in your circumstances?
Good luck and keep us posted.
I did my first tx yesterday, it gave me headache literally 15 minutes after, and 24 hours later it's still there. I am drinking tons of water, I feel like I spend half of the time peeing. The nice bonus was sleeping through the night, which hasn't been happening for months.
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I've been struggling with headaches as well. I mentioned them to the Dr and Nurse last week and they didn't think they were related, but they feel exactly like a hangover, which is basically dehydration. Also drinking and peeing a lot.
Completed 7/25 today and, besides headaches, no other SEs to report. I'm not even a tiny bit pink.
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Popping in to cheer you all on! I finished at the end of June, 20 treatments, 5 of which were boosts for a total of 50 greys. My skin is now tan, I still look like a violently plucked chicken and I'm still dealing with fatigue. Otherwise all's well.
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edj3 - glad you finished rads successfully and chicken's with no feathers can look tasty (just stay away from barbecues.) Sorry about the fatigue they say it will pass. Hopefully soon.
Kber - sorry you are having headaches are you eating lots of protein, I find it helps.I am now finished 17/30, I forgot to moisturise the other side of the breast bone and that is definitely pink (starting to moisturise there too. Tech said radiation like a flashlight most goes where they are aiming but there is some scatter. Good luck going forward with rads sounds like you're doing just fine (knock on wood)
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Hry all
I finished my. Radiotherapy last Thursday and since then Saturday I went out all was fine sundsy I slept.on off Sunday till went late lunch, however. Saturday I noticed. It more. Prodomomtly thet my Taste buds.could not. Taste. My lunch or Tea. Could Taste coffee stayed up all night Saturday could. Not. Settle. Only. Till had LoraZpam. Anyway yesterday Tuesday (UK time.) the radiotherapy effects and dehydraton were pretty. Horrific I was asleep. I off all. Day here in UK very hot atm. So, had lack. Fluids sleeping tablets make. Me. Drowsy (I. Had radiotherapy on neck. And skull as unfortunately I my breast csncer has spread. To bones)anyway after effects include head aches feeling sick and 8 later release. Causes effects. To. Taste buds which can make taste food bland erc anyway I felt. Lot better after water. Unfortunately inwas too weak to shower so. Mum. Assisted me. To wash myself..
Anyway this morning I felt better just sick so. Struggling to swallow. It hurt and mum noticed thrush 9n throat. She thought she would. Wait see what dad thought 8 managed bread and butter and went baxk to bed I. Had. All. Medd
Anyway dad. Noticed i was in deep sleep. Pressure built up. And I woke up. With the most excruciatingly sharp. Stabbing forehead ever so dad got. Me. Oral. Morphine which I'm prescribed anyway in our hospital. We. Can ring up anytime with advice etc is cmy dad rang up asked, advice explained. Everything and they said come. In get. Your bloods. Taken checked. Over by doctor anyway we bumped. Into. Her and she was amazing, pior dad taking. Me. He gsve me. Steriod. As. He beleove they were reduced too. Quick (he a doctor BTW) and felt. Lot better after anyway we bumped. Into. My. Clinical oncologist she checked my. Mouth talked to.my dad they know each other as dad as her boss I've got. Prescribed more. Steriods. A. Liquid antibiotics which is topical so. Covers. Inside. Mouth a pain relief. Mouth wash I spit. Ojt and a. Mouth wash which I swallow. Which numbs the throat as thsfd sore got. Long way ahead could take.few weeks needless say my. Mental health batering. As. I'm. Foodie. Enjoy. Food. Etc. Going. Out meals. Erc. Xxx
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Cowdin, how beyond frustrating (actually, negligent...)! Try to be strong as you get through this tough time, or don't be strong, vent, rant, do whatever gets you to a place of moving forward. You will get past this.
KBer - I have a headache/hangover feeling/fatigue and I'm just on day 1! I get it. Are you on hypofractionated? I'm on 2.66 grays per session (42.56 gy over 16 sessions, then boost for total of 50). I feel like 2.66 gy is a lot at once, at least that's what my body is saying right now, 3 hours after my first treatment.
edj3 - Congratulations on being just a bit tan and just a bit tired!
Daylightdancer - good luck and keep at your recovery. I'm sure your taste will come back in time.
I just had my first rads treatment 3.5 hours ago and feel lightheaded, tired (but don't feel need to sleep), headachy...like really hungover, without nausea. Boob feels a little bruised but no big deal. Areas of scar tissue from surgery feel tender - again, no big deal. I hope the fatigue feeling will get better. My body is VERY sensitive to changes in my equilibrium and homeostasis and I'm really, really in tune with my body so notice every tiny disruption. I am hoping I will adjust over time & not feel as wiped out. I've read good things about supplementing with enteral glutamine (and here), which is supposed to help your body recover better from the nastiness it's being subjected to. Arriving tomorrow from Amazon, woot. Do your own research, of course. Until then, lots of water, lots of protein.
I can't fathom how there are people who don't feel side effects (internal ones, such as fatigue, headaches, lightheaded, nausea, etc) from this!? It's a big dose of terrible stuff in your body! I know the benefits outweigh the toxicity but it's toxic, no way around that. Blows my mind people don't feel it. More power to them, for sure.
Onward!
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Giddyupgirl- I asked techs where to expect the redness (my SIL is getting married in three weeks and I need a dress), and after that conversation I started moisturizing everything and everywhere (and will get a dress that covers everything just in case).
GenX - Thank you for sharing info about glutamine, I will look into it! I did two rads treatments, and I've been having ongoing headache for 48 hours now. Typically I don't have headaches. The staff in the hospital told me that rads treatment won't cause headaches unless they radiate your brain
I wasn't mentally prepared for being unwell and tired right away, and I didn't prepare my little ones so right now there's a bit of a chaos going on at home as well. I am still hoping that it will get better.
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Julie - I was fatigued from day 1 and didn't expect that but then the fatigue became sporadic. Mondays are bad - Fridays are generally good. I don't necessarily want to sleep but don't have energy to get moving so I cook fish and about half hour later I am better. worked from 4:30 till 9:30 tonight which actually made me feel better. You will find your rhythm. Get a gorgeous dress and if it shows a little colour tell everybody you went skinny dipping. Hope things get better really fast for you
GenX - totally get the feeling off. Ever since I started rads my body just hasn't felt right. Like you I know my body well and it does not like toxic things. Good luck with your rads and I will check out the glutamine.
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I, too, wanted to know where to moisturize, etc. and the techs drew the field on my chest today at my request, then I took a picture in the mirror at home before washing the marker off. It's a damn big field, way up past my breast, given that I had a 3mm tumor at 5 o'clock! Radiation feels like it's still so barbaric...sigh.
I love the tip to bring your lotion/cream of choice (Miaderm, calendula, aloe, etc.) to rads and slather it on before you get dressed. I also love the idea of keeping some in the fridge...I think I'll try that with the aloe.
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Go you guys GO! Cheering you on as well. I finished a week ago today. 16 treatments, no boosts. I was a little tan at the end and tired at the end and that's it. Yesterday I felt really good and today as well. I am convinced the infernal heat we've been having wasn't helping. It goes fast I promise!
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Hi all!
GenX - I'm not being hypofractionated. For what it's worth, my headache also started day 1. It felt like a hangover and I treated it like one - lots of water and a couple of Advil. I think the heat didn't help either. Anyway, with water and the occasional Advil, I feel better now. I'm still early in, but no other side effects yet.
My RO said last week that if he didn't see some pink skin soon, he was going to change the program a bit to make sure my skin was being zapped. Well, I'll see him today and there is NO pinkness yet at all. Like zero, nada, nothing. So I guess he'll be adapting the program a bit. I'll keep you posted.
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Maybe a dumb question - what is the right "strategy" for armpits? I was told deodorant is fine. But I just realized that the area is no different and even more sensitive and should be moisturized too?? Since I am always going to places before and after treatment, what is the right thing to do in this summer heat?
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My RO said no deodorant in the radiated side's armpit. And honestly that was just fine by me b/c my sentinel node incision was not happy. I did and do use Miaderm on that incision. I also use cornstarch and any more I use it in both armpits b/c I like it. Just put some in a knee high, tie a knot so it stays in there and pat away.
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thanks mom2bunky - I am 18/30 and getting a little discouraged it is taking so long and d***m table is so uncomfortable that the 15mins seem to take forever. just keep going one boob in front of the other.
genx - regrettably cancer treatment is barbaric "cut, poison,burn" but it is what we have and with luck it will get better in the not too distant future (there have been a lot of changes in the last ten years but there needs to be a whole lot more)
Julie - moisturise that arm pit and sentinel node area (edj3 is right no deodorant - cornstarch works great)
Kber - maybe you should put a little blush on it (I didnt really start to get pink until round 10) before that it would be a little pink and then it wold fade in about an hour) Good luck with the RO - let us know how it is going.
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Thank you
for replyMouth seems bit better today mouth wash is working unfortunately radiotherapy isn't only treatment I'm having I'm also on hormone treatment as well which will be 3 years at least or when it stops so long journey ahead.
Xxx,
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Just got back from my session and the RO said he'd give it another week. No need to break out the blush yet!
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You all are rock stars, love you already, even though this radiation journey just started yesterday for me.
I've been prescribed 42.56 gy over 16 sessions ("Canadian fractionation") to the whole breast then boost of 10 gy over 4 sessions. I was told once my tumor was removed that since it was just 3mm, it probably wouldn't "qualify" for Oncotype DX...I asked if we could submit it anyway and, glad we did, b/c it WAS approved and has been completed. I get the results Mon, 7/29. I'm mentioning this here b/c I have every intent of asking my RO if my Oncotype score is very low, if skipping boost is an option. It may not be prudent but you never know...I'm perhaps overly concerned about fibrosis down the line, since my body so far has reacted to the boob/armpit onslaught by producing a lot of scar tissue, cording, etc. As a result, I will also be asking my RO if she can prescribe pentoxifylline at some point.
Also, I mentioned glutamine earlier - my research has also hit on glutathione as an important supplement to possibly assist the body in fighting toxicity. Sublingual is much more effective, so I've got some of that incoming, in addition to the glutamine. Can only help since I haven't discovered any notable side effects. Again, do your own research for you
Keep rocking this sh**, grrlz!
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Good job Kyber now you just have to go for is that pale pink look. Pretend you are in a tanning bed.
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Thank you for your quick and helpful responses edj3 and giddyupgirl!! So confusing, in the hospital they say no to cornstarch and yes to deodorant, and I did hear about cornstarch from my family member doing radiation therapy. Will give it a try. They marked the radiated area for me today, and it definitely includes the armpit.
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I love this thread. Thankful.
DorothyB - congrats and I hope the exhaustion wears off fast.
Cowdin I am SUPER sorry for what you are going through. Glad the surgery was right away. OY. Your diagnosis is different but my lumpectomy was April 18, and radiation was still recommended even though I am late to start. Some studies have shown it is most effective if started within 8 weeks of surgery, but my doctors felt I was still starting in time to get most if not all the benefit 13+ weeks out.
GiddyupGirl thank you for making me laugh with your blush recommendations for kber. My boob just started to get pink today, day 4/20. Good idea to mark where to moisturize - I don't think I've been doing a big enough area.
GenX & Giddyup.. I am also tired and feel a bit weird/off. It's hard to concentrate on my work.
I haven't been sleeping well so that certainly isn't helping. GenX - it does feel barbaric and I have also considered skipping the boost. (I considered skipping radiation altogether but here I am.) I'll be fine and will keep on going for now. Reading all of your posts helps. Now, to work...
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Hi all,
I'd posted about radiation treatment in this forum, not realizing that this thread was here. Sorry about that.
I started treatment on the 18th. IDC, right breast, less than 2cm, SLNB, two lymph nodes, all clear. Whole breast radiation for 16 days, 4 days boost. I am not supposed to have my lymph nodes irradiated.
I am at day 5, and my breast is tender and ever so slightly pink. I have allergies and can't use most of the products everyone else can. I bought miaderm, but can't use it. I bought camwell cream as well. Great stuff, but caused welts within minutes. I can use a product called coloplast, sween cream. It is basically a lot of artificial stuff and lanolin. The fragrance is overpowering, but it works. I also have been having that hungover feeling some people get, with nausea a few hours after treatment that may or may not go away before bed. I am worried because so many people don't have any issues until far later than 5 days. My rad onc is very defensive and doesn't like me asking questions, so I don't get much info, and I frankly don't trust her much.
The rest of the staff is kind and seems competent. I worry about the equipment though, they keep getting errors and parts don't close properly, and they mutter among themselves about it. It's a small hospital near my house, because the big, fancy, state of the art place is booked solid and much farther away. I think though, next time, I'll stay in a hotel for a few weeks and just work with the big place.
Yesterday my appointment was uncharacteristically delayed, and then they said they had to take extra images, so I might need to be under the machine for a little longer. I was pretty much okay afterwards, symptoms wise, but my lymph nodes, which they are absolutely not supposed to irradiate, now are sore, the skin above them is noticeably swollen and pink. Anyone else have lymph node issues when they were not supposed to have them all irradiated.
I asked at my appointment today about the lymph nodes, and the technician marked where the radiation fields are-- and they absolutely go exactly where my lymph nodes are. The rad onc was super vague and I suspect she is simply irradiating my lymph nodes fully, despite a form in my file saying I do not give my permission to do so.
However, I could be mistaken. Anyone having/have had full breast radiation have clear information that their lymph nodes were not irradiated? Is there a chance that I am just misunderstanding, and despite all of my lymph nodes being in the field, they are being missed somehow? Did anyone having full breast radiation without explicitly needing lymph node radiation ever get lymph node SEs, like lymphedema? Basically, if you were having breast radiation, did they clearly show you that you would have only breast tissue irradiated, or did you too have the whole rib cage on that side, from sternum to collarbone, to the back edge of your rib cage along your side? It seems like a huge fields of radiation for just the breast tissue. The rad onc is very rigid and conservative, and flatly, cranky. It makes me very suspicious. I am mid-treatment and am afraid that I simply can't get insurance to allow me a second opinion at this point.
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First, I'm sorry about the Miaderm not working for you, I know it's not cheap.
Clarifying question--you wrote that your lymph nodes aren't supposed to be radiated. Is that what your RO said or is that your choice?
Frankly I didn't care either way about the lymph nodes, not because I'm cavalier about my health but because there's a really good chance I bail on the tamoxifen if it gives me problems. So the radiation was definitely something I wanted so that stray cancer cells got killed.
But that's my situation and my perspective, not at all saying you should do likewise. More looking to understand your situation a little better.
Also I'm sorry your RO isn't a good match for you (I love mine, probably love her more than my BS and MO combined and I like them just fine).
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Calliop3 - sorry I can't help you with lymph nodes mine are getting irradiated. However I have been tired and off since first treatment. Talked to my RO she says yup it happens in about 10% of patients. Her suggestion is take it easy however when one has a job it is not so easy to do that. Taking today off because I am nauseous as anything for some reason (I'm at 18/30). Sorry you are having such a hard time with creams - allergies are annoying. I'm allergic to most antihistamines (so I try to avoid being allergic to things). Anyways sorry you are having a tough time. Is there another RO at the hospital you could talk to?
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I had whole breast radiation but was told that my lymph nodes were not to get radiation as the sentinel node was negative. I do have red under my arm, but I think that it is lower than at least most of my lymph nodes?
I had nausea pretty much every day during treatment. Just realized that I have had NO nausea today (2 days after last treatment)
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calliop3, I had whole breast radiation and my RO told me it would be unnecessary to radiate my lymph nodes. I didn't care one way or the other and would have gone with whatever she said. My radiation area categorically did not include the lymph nodes.
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Ok how is everybody doing with their rads. My daughter gave me a great explanation of radiation treatment today. She said "mummy its like you have little minions in there in hazmat suits with vacuums sucking up all the bad stuff". So next time I am in the funny machine I'll think of the little minions - if anyone else is willing to give it a try let me know how it works. Hope you all have a good weekend.
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Sooo cute, how old is she? I will be thinking about minions when I go back on Monday.
Have a nice weekend ladies, I won't miss that room for the next couple of days.
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I've completed day 3 of 16 whole breast at 2.66 grays per session, then I'll have 4 days of boost at 2.5 grays per session, so I've knocked out 3/20. I had initially thought I'd opt out of the boosts but since, like you Edj3, I am likely to skip out on the tamoxifen, I suppose I should get as much radiation as I can in. I get my Oncotype DX results Monday, so that will factor, as well.
I felt really fatigued, like a bad hangover without nausea - so headachy, tired, groggy/foggy, after day 1. I started a whey isolate & amino acids protein shake + glutamine powder right when I got home on day 2 and felt much better, even played soccer that night (3 hours after rads) - I tired more easily on the field than usual, but it felt really good to be active. Went for a run yesterday 3 hours after rads & it felt similarly good.
My skin is fine, so far, as it should be, this early. My breast feels/looks swollen & my scar tissue & scars from surgery, that had nearly healed, are all tender. I'm rocking 3x a day of Miaderm and added the Mometasone prescription steroid cream yesterday.
A weird side effect I've felt intermittently is feeling really emotional. I'm a pretty unemotional sort, so feeling easily triggered to being sad, frustrated, anxious, etc is annoying. Not a big deal, and likely due to generally being depleted by the rads/toxicity. To combat all the toxicity & oxidative stress, I'm using the aforementioned supplements (whey isolate protein shake, glutamine powder, sublingual glutathione) and also trying to juice more, avoiding alcohol, exercising daily (normal, but I'm staying motivated to continue) & feel pretty good, all things considered. I'm REALLY thankful to take a 2 day break, since I started on a Wed. We'll see how 5 days in a row goes, eek.
Keep at it, sistas!
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