November 2018 Starting Radiation

Appyfan

I didn't see a November thread, so I thought I'd start. Just had my planning appointment today, and will start treatment with a dry run on Nov 12th, treatment starts on Nov 13th. 15 hypofractionated whole breast with 5 boosts. Tried prone, but RO didn't like the CT images, so positioning is on my back.

Curiously, no discussion of skin care, and I'm at an NCI cancer center too. I'm very thankful for these boards, learned way more here than I was told by medical professionals during my journey.

So, who’s joining me in November?

ghostie13

My first appointment with the Radiologist, planning and simulation is November 1. I have no idea yet about how many treatments or what they recommend for skin care or anything else. More than ready to get this over with. Was diagnosed the end of August, surgery in September and a month and a half of waiting for various test results.....

Appyfan

Hi ghostie13,

Glad to see you didn’t have to do chemo. You’re having your first RO consult with planning & simulation? I had the RO consult last week. Although that may be because it was my second RO consult (I’ve become quite the PITA since being diagnosed). I had one at a different center the week before, but didn’t feel comfortable with them.

I hope your planning &simulation go well on Thursday. What tests were you waiting on after surgery?

ghostie13

Yep, all at once. I was told it would be a 2 1/2 hour appointment but after that maybe 20 minutes for each treatment. I skipped chemo, oncotype 16 All the tests on my cancer were ordered separately. First surgeon ordered a FISH test and that was in the intermediate range. Then a HER2 test, also intermediate. Then Oncologist repeated the HER2 test and when those results were negative ordered the Oncotype test. Seems like a lot of wasted time waiting for results.

I am hoping they schedule treatments right away, tired of waiting, just want it done asap. Pretty sure they will think I am a pita too. No time for all this bs..

PebblesV

I’m in! Thank you for starting this group! Technically I just started radiation a couple days ago on Oct. 29th but hopefully that still counts.

If it helps, here are some tips I can offer now based on my experience and a friend’s:

1. Lotion - 100% pure Aloe Vera is recommended by my radiologist and he thinks that’s all I’ll need as I tan (don’t tend to sunburn). But just in case and based on other boards and what the radiologist allows, I bought Miaderm and Aquaphore. Both on Amazon and great reviews.

I’m not supposed to use other lotions on my breast during this period of treatment, something about it maybe interfering with the effectiveness of radiation. Also can’t put lotion on 3 hours prior but fine to put on immediately after. So I’ve been slathering on the aloe Vera right after the treatment and so far so good but it’s also only been 2 days.

2. The actual radiation treatment is super fast and “easy” all things considered. You don’t feel anything, just lay still for 10 minutes or so. They have music but I like mine better so they let me blast my iPhone tunes during treatment.

3. Make sure you get a schedule in advance! My friend didn’t get an advance schedule and had to wait longer to be called in for her treatment session. Eventually they gave her a set time but not for awhile. I got my set times during the consultation and they are very prompt so I’ve been able to walk in, do the treatment, and walk out without having to deal with the long waits that my friend had to deal with.

That’s all I can offer so far, I’m only 2 days into actual treatment but hope this helps. I’ve read other boards that say it’s good to hydrate too. Goal is to get through this with little to no side effects! #tryin

Wised

I am supposed to start this month but will probably be pushed into December because of a hematoma. Is anyone doing accelerated therapy?

Lucyred

I had my simulation yesterday.

First treatment is today, will have 16 total treatments so I'll finish up just before Thanksgiving. After the treatment the nurse is going to meet with me and go over products they recommend and give me some samples. They suggested 100% aloe and aquaphor.

I also have a set time I go in every day, which is nice hopefully it will make it quicker. They also gave me a coupon for 60 minute massage and reiki massage, said I might need it half way through as they keep telling me that I am really going to feel fatigued.

I am just ready for it to be done with already.

ghostie13

I will really need to have a schedule so that I can decide on what nights I will be able to work. I work night shifts (part time) and the drive to the cancer center takes about 90 minutes one way. So no way I can drive that after working all night unless the appointment is later in the afternoon.... Husband is planning on taking some time off at the end of the month and will take me then. Was thinking the fatigue might hit me towards the end of treatment.....

egregious

Thanks for starting a November group! I hope my radiation finally begins this month. Depends if they think I need sentinel node surgery. Working hard to stay positive and enjoy life. Appreciate hearing from you guys.

I'll be getting 15 regular and 5 boosts. Have had the initial visit but not the simulation yet. Hopefully next week. My team recommended a light cream like Eucerin for the three times a day lubrication and a spray bottle of Seven Minerals pure aloe spray that is to be kept cold in the refrigerator for if I get too red. I bought Miaderm for if I need something stronger than Eucerin. Cornstarch instead of deodorant.

Appyfan

PebblesV-thanks so much for the tips! It’s nice to have someone on the thread who has started already.

Lucyred-It’s interesting your team doesn’t discuss the skin treatment/lotions until after the first treatment. I wonder if mine would be the same, since no one mentioned it at my simultaion. I already know what I’m going to do from my own research.

ghostie13-I hope your center will give you a full schedule. Mine is set up for all 20 treatments.

DWiseley-I hope everything goes well for you. What do you mean by accelerated therapy? Is that a bigger dose for a shorter period of time?

egregious-I hope every goes well for you. Your BS didn’t remove any nodes when you had your lumpectomy

Lucyred

Appyfan - they have mentioned all the products everyone here seems to be using. They gave me a quart size bag of aquaphor samples today, like 30 of them and said if I need more just so and some coupon.

So far I seem fine. Slathered in some aquaphor and put some plastic wrap on it to keep it moist for a little while

wlo002

Hello! I'll be joining you in radiation this month. I had my planning appointment today. Simulation is the 9th and first treatment the 12th. I'll have 25 treatments so I'll finish up the the week before Christmas.

My center schedules a week at time so each Friday you get the next week's schedule. I really wanted late afternoon appointments so I wouldn't miss so much work but it didn't sound very hopeful. My company has been great about me needing time off but I have a 45 minute drive each way to the cancer center and it'll add up fast.

I was given a tube of Secura cream at my appointment so I guess it's the lotion of choice here. I was told I could use any deodorant as long as it didn't have aluminum in it.

Anyone else dealing with tissue expanders and reconstruction after radiation?

AliceBastable

I started treatments Monday 10/29, with 33 total to end on 12/13. I was initially told 21 sessions, but could be subject to change - and it did get changed, based on x-rays at set-up. I had surgery on 7/11, re-excision 8/8, an unrelated cancer surgery on 9/18 to remove a kidney, and now I'm FINALLY healed enough for zapping. When I asked about lotions or creams, I was told they'd give me what's needed based on how my skin looks, and in the meantime, to use what I want, if I want, but to make sure it's washed off four hours before.

mLghtn

I started treatments yesterday, my center (NCI) also hasn't recommended anything for skin yet, they said they would give me samples next week when I see nurse and doctor again. Supposedly shouldn't have any skin issues for first couple weeks. I bought "my girls" based on reviews and what people said on this site and I've already started using it. i'm pretty paranoid about getting burned along with other possible SE's. I will have 21 total 16 plus 5 boosts--its the hypo fractionated (so higher dose but shorter duration, less days). Also its IMRT, supposed to conform better to body shape, even though I have larger breasts, i had a lift with lumpectomy so I don't have to do it prone. My breast already feels irritated, it felt tighter and more painful and my right arm hurt to move more. They assured me today that it was from lying in that position with arm stretched overhead yesterday for longer period when they were setting up the machine--that I basically overstretched it and that it can't be the rads, makes sense. Now after today's tx it feels heavier and slightly swollen, also didn't wear a bra today for first time in a while, so maybe that irritated it too. I had pretty extensive oncoplastic sx at end of august and it was just starting to recover. Its been pretty sensitive to increase in activity wearing/not wearing bras etc. and will get sore and swell with fluid at times. PS said takes many months to fully recover. So IDK, scary if its already rads effects after 2 days! Skin doesn't seem affected though. Ok this kind of came out like a long vent, sorry. I just really didn't want to do rads after I read more about it, but was recommended to me by 4 docs, and no other good options. Did anyone else who started feel anything after the first tx?

Wishing everyone well, glad to be here on this thread

Lucyred

wlo002 - I have TE with reconstruction after rads. Hopefully you can get the afternoon appts, I am doing the same thing so I can work as much each day too.

MLghtn - my right armpit (treated side) feels a little sore/irritated after the first time. I was thinking it just me or I’m imagining it but I don’t think I am. My foob feels a little off too just can’t say for sure why it feels off.

Really really hope I don’t get to many SE but I have a feeling knowing my skin that’s it’s not going to be easy.

egregious

Thanks, AppyFan.

They didn't take out nodes in the lumpectomy because they thought it was all DCIS. The path report found invasive cancer so they're rethinking what to do next.

ghostie13

Planning appt went well today.....simulation next Monday and treatments start Tuesday. 16 treatments, no boosts. Found out today that I have a small seroma, so heat packs for that a couple times a day over the weekend. Decided today to use some of my PTO, with the drive being 90 minutes one way, weather could be changing any time and I'm just tired. Dealing with some anxiety and a high stress job just isn't helping anything....

CaliKelly

Try to locate Miaderm cream,formulated by RO worked wonders on my very fair skin, only got sunburn like reaction except on collarbone where it scabbed up a bit, Bra straps will rub this area, so go strapless or braless! Actual daily treatments go real fast, you'll be out of there in no time! Easiest part of the whole thing for me! Good luck to all!

sillyoldrabbit

Hello ladies! Joining you today after my simulation appointment. The dry run is scheduled for the 13th, with treatments beginning on the 14th. I don't yet know how many treatments there will be, but previous estimates have been 25-30. The nurse gave me 3 different lotions to try - Aquaphor, Miaderm and Calendula cream. No mention of aloe vera, though. I'll ask about that next time. We have it growing abundantly in our yard.

If you've been through this, how bad was the fatigue? Were you able to exercise normally and get your work done? Also, were you able to sleep on the treated side?

Another question. I'm looking on Amazon for Miaderm cream and see that it comes with and without Lidocaine. Any recommendations? And, jeepers, that stuff is pricey!

urdrago71

Hello everyone, I have first Met and greet with doc on Tuesday to discuss treatment. I did hear I wld get samples and suggestions. One is not to use dial soap as it drying use dove. Also heavy expenses creams not greasy oil based lotions. I will keep you updated after my appt.

I also heard about Pracasil ointment to help with irritated skin.

Happy Fall. Sending good vibes..

PebblesV

1. Hi all - I just completed my first week of radiation treatments so here's what I can offer up on the experience so far (oh an AppyFan thank you so much for starting this thread!):

1. I feel fine! I really do. And FYI I'm still working through this, just working from home. No fatigue.

My friend who went through this said she didn't feel any fatigue until the last week. She did 25 sessions.

2. Lotions and links:

Aloe Vera recommended by the radiologist:

Fruit Of The Earth Aloe Vera 24oz... https://www.amazon.com/dp/B005C28Z9O?ref=yo_pop_ma...

It's a bit sticky but does the trick

Another Aloe Vera gel I found via reviews and the boards which is not sticky at all, so I prefer this one:

Organic Aloe Vera Gel Great for... https://www.amazon.com/dp/B012YFWSUS?ref=yo_pop_ma...

Miaderm - reviews all rave about this it IS pricey so I bought just one bottle and hope I won't need more than that:

Miaderm Radiation Relief 4 Oz https://www.amazon.com/dp/B004TB9SFE?ref=yo_pop_ma...

Aquaphor - I haven't tried this yet, so far have been getting by with the aloe and I did apply Miaderm once to “prevent issues".

Aquaphor Advanced Therapy Healing... https://www.amazon.com/dp/B0107QPFBU?ref=yo_pop_ma...

3. When you have a schedule, it's very fast. They seem to be prompt about scheduled times, you go in and change and they take a few minutes to position you and then the radiation itself feels like it's 5 minutes. Seems to take longer to change than the treatment itself.

4. They make some effort to make the treatment rooms feel like a spa. Really! Wood-trimmed walls, landscape photos, music over the loud speaker.

5. My skin is fine so far but it's obky week 1 and I tan easily and the radiologist said it's fairer skin that gets more side effects, or people coming out of chemo. My friend said her skin was fine until the last few treatments, then it was like a sunburn. I've heard Miaderm helps.

@silkyoldrab... - Yes to being able to exercise normally although I heard mornings before the appointments are better, and yes to sleeping on the radiated side fine, but again only week 1. So far so good but also 5 weeks to go!

@ghostie13 - FMLA allows you to take this time off work if you want, and get paid up to a certain percent of your salary depending on the state you're in. Make sure you ask about that and know it's an option if you're work is stressful. I've been allowed to work from home and take one day a week off during this but I like my job so I choose to work still. This might be a nice opportunity for you to have some time off.

@mcLghtn - hope it starts to go better for you. Have you tried Miaderm? A lot of others with fair skin have said it's worked miracles. Also I heard staying well hydrated helps a lot.

@alicebastab - we have very similar timing, I also started Mon 10-29 and will be done mid-Dec! Just in time for the holidays.

@lucyred - free samples and reiki massage and only 16 treatments, you look to be on the luckier side of this! I'm all for silver linings and you have some

I'm in for a full haul of 30 sessions but since I can work from home while going through this, I've decided to enjoy the time at home with increasingly spoiled puppies.

kksmom3

I started Monday, Oct. 29th. I finish Nov. 26th. I just finished my first week (5) days of 20 rads. It is Sat morning and I feel super grouchy and my breast is just feeling uncomfortable. I have a very slight pink tone. I am slathering Aquaphor all over after my 2:30 treatments, but I'm wearing coconut oil to work, putting it on by 7:30 am. I like the coconut oil way better, it's not sticky like the Aquaphor. The Aquafor is getting on my last nerve. The radiologist said coconut oil was fine. It's virgin and organic.

Does anyone else use coconut oil??? I can still use Aquaphor at night but the stickiness is just gross and annoying It's my right breast and I'm right handed which maybe doesn't help either. Would Advil help me feel better?? Thank you!! Is there something else I can use??

AliceBastable

Kksmom3, we have the same start dates, but I don't finish until mid-December. Since you have a shorter course, I wonder if you are getting a more intense zap - still not sure how all these different schedules work. I have super-fair skin (one of my friends has called me Translucent Girl a few times!) and burn easily, and have had multiple basal cell issues. So far, I haven't turned pink at all, but I can feel something inside, kind of like when I was healing from the lumpectomy but about two or three weeks out - not pain, just it's announcing its presence occasionally. As a skin-softener before the problems start, I am using vitamin e oil during the week. It's a cheapie from Dollar General, about $2.25 for four ounces, contains just soy, vitamin e, and coconut oils. For the weekend, I'm marinating in Johnson's Baby Oil Gel with Shea and cocoa butter. It's an odd texture, but NICE feeling. I bought some men's thin sleeveless undershirts to protect my clothes, and I can easily wear a sport or leisure bra over one.

mLghtn

kksmom3, Alicebastable-- I also completed my first 4 of 21 this week. Its the shorter course, but higher dose per session. 16 whole breast 5 boosts. I also had an achy feeling in breast, generally kind of crappy at the end of the week. Tx s were in the am, skin was a little taught and pink by the eve and then usually better again by the next day. I use my girls during the day and then emu oil (has anti-inflammatory properties) at night and feels like it helps. I also took tylenol and advil for pain. The breast almost feels again like it did when I was recovering from the sx. And I feel the pink coloring is from inflammation within not like a skin burn on the outside. nothing horrible but definitely unpleasant and still have quite a ways to go. At least it seems better again now after a day off and I will have 3 days off next weekend and another 4 days off in a row over thanksgiving--hope it recovers a little on those long weekends...

AliceBastable

mLghtn, the only day off I'll get besides weekends is Thanksgiving. I don't have any pink yet, but it could be because I'm on the longer schedule. I keep thinking of the movie "Groundhog Day" and how this feels like the same day over and over. And that's after just one week! I already take Tylenol a couple times a day for joint issues and lingering healing issues from a kidney removal in September, so that could be why the breast twinges are mild so far. I'm limited to one ibuprofen (works better for joints) a day so I don't break down my single remaining kidney - so learning a new routine of pain management is kind of tricky.

Appyfan

Thanks for all the updates! It really helps. I need to start upping my water intake. I forced myself to drink so much water during chemo, I don’t want to do it now. It really helped, but it’s funny that it now reminds me of the yucky times.

CarolAnnieLumpLump

Hello All, I am hopping over to this board from the October one. I started rads on October 11 and have had 17 treatments to date. 17 more to go. I will finish on Nov. 29. At first my breast became slightly pink and ached around my incisions. Now I have a more pink tone with and itchy rash underneath, between and above my breast. RO says this is where the beam is glancing off your skins rather than penetrating the tissue of the breast which makes perfect sense. I am using hydrocortisone cream, zinc oxide, aquaphor, calendula, alra and aloe at different times. Just keep slathering something on.

It's not as bad as I imagine it would be. I get tired easily but nothing that you can't handle. Stay strong.

mLghtn

Alicebastabel wow I can't believe they are open for tx every day of the week at your center, that does make it like groundhog day! You are strong for going through it that way, I think I really need these says off to recover or I might be tempted to quit if the SE's get too bad. I already went through a lot with the chemo and have chronic pain issues now (from the taxanes I got) that are only improving very slowly. I don't think I can handle another major negative impact on my body--not sure how I can even go back to work in Jan and do a 12 hr shift at this point(I'm an RN).

CarolAnnie Hi, my last day of tx is 11/29, same as yours! Mine is accelerated (hypo fractionated), so 21 total. already have experienced the aching around incisions this first week. Did the aching lesson now over time? are you doing any special stretches or exercises to minimize fluid retention? It's nice to hear you are finding it not so bad.

urdrago71

mLghtn, what do you mean fluid retention? Im going to continue Physical therapy thru radiation but I also have cording so for me stretching is a must.

mLghtn

I meant fluid retention in just the breast, it seems to swell up a bit and feel heavier and skin is taut. The rads techs don't notice any size change, but I notice that it feels different and tender. This also happened during the healing process after sx, my sx was more extensive larger lumpectomy (partial mastectomy) with tissue rearrangement and lift. So it just feels like rads is aggravating it again.

egregious

Met with my oncologist today for the first time. I don't need lymph node surgery, so next stop is radiation! Will make an appointment for the simulation and then treatments start about 10 days later.

Among my many questions were lifestyle issues. The good news is my weight is ok (this might be a historic first). The bad news is that alcohol is bad for ER+ so my daily glass of wine is history. Oh well, being alive is good.