Summer 2015 Rads

wpmoon

joining this board from the March chemo group. I have my simulation tomorrow, then I'll probably start treatment the following week. I just filed for a medical leave of absence for work. I worked full time through chemo, training for a new job, and I can't stand the thought of going in 5 days a week for 6 weeks and working. I already have calendula cream and aquaphor, so prepared for the worst.

Hopeful82014

Welcome to Radiation Summer Camp, wpmoon. sorry you have to join us, however.

You might want to add pure aloe Vera to your shopping list as well, and check that all of these have minimal added ingredients, especially alcohol.

I've had trouble finding calendula cream without the latter (or way down on the list of ingredients) so would love to hear if anyone else has a brand to suggest.

Boron calendula is popular but 2nd listed ingredient by weight is alcohol!

Enjoy your very brief break between treatments, wpmoon. You can browse this thread to get an idea of how variable (but easy) the sim process usually is.

so-she-did

I am also jumping on here from the March chemo group. Good to "see" a few familiar faces and am looking forward to getting to know the rest of you. I just had my first rads this morning. 32 more to go! I did great right up until the moment I got home and my husband asked me how it went. I guess I just needed a release of the tension and anxiety I had of starting rads so I cried.

I was surprised how easy the sim process was. From reading some posts on here I was expecting to be full of marker and stickers and the process to take a lot longer. I was told they needed 40 minutes for the CT scan appointment and I swear I was out of there in 25. They were so fast and efficient and yet super friendly. I also have had problems with adhesives (as I see others have had) since the surgeries and chemo so they were able to tattoo me that day as well, saving me from another appointment for the tattoos and the tegaderm that I now loathe. I had one dry run on Friday and am in full swing starting today.

molly1976

I had #8 today and beyond some mild pinkness I can't even tell anything is happening. I'm ready for bed by about 9:00, though, so the fatigue is real. It's nothing like the full body & brain fatigue of chemo, though.

ksusan

My sim is on Wednesday. My place uses marks and stickers at the sim, with tattoos at the first treatment. Therefore, I've had stickers on me for a few days to make sure they don't give me dermatitis--I still have marks from a bandage from my port surgery 3 months ago!

I use Weleda Calendula Body Lotion, which MO and RO both said was fine. Does have alcohol down the list, an not vegan:

Water (Aqua), Sesamum Indicum (Sesame) Oil, Prunus Amygdalus Dulcis (Sweet Almond) Oil, Glycerin, Alcohol, Glyceryl Stearate SE, Cetearyl Glucoside, Hydrogenated Coco-Glycerides, Calendula Officinalis (Calendula) Flower Extract, Chamomilla Recutita Matricaria (Chamomile) Flower Extract, Beeswax (Cera Flava), Theobroma Cacao (Cocoa) Seed Butter, Xanthan Gum, , Fragrance (Parfum)*, Limonene*, Linalool*, Geraniol*, Citral*.* from natural essential oils

Free of parabens and synthetic preservatives, phthalates and chemical fragrances, petroleum-derived ingredients and GMOs.

Hopeful82014

Ksusan - thanks for the info on the Weleda. I have to be cautious with nut oils (bummer), too; I start to feel like I'll have to distill my own calendula oil Nothing about this is simple!

Amy, welcome to Summer Camp, too. I hope you do well. This thread was started by SweetHope, who has had great luck with her skin, so I hope that rubs off on you, too.

Hopeful82014

SweetHope - Any word on whether you can double up and finish this week??

Midgiemoon

Hi,

I just got done with my planning. It was only 45 minutes and the mold was made with a beanbag, and when she let the air out, it hardened up. It took a matter of minutes. The technician was great. And I have lovely sharpie marks on me with stickers.

I'll find out in a few days when I start.

Have a great 4th of July to all the American Ladies! We truly live in a great nation!

For our Canadian Sisters, I'll be spending some time in Price Edward Island this fall with my cousin on her farm!

~Midgie

pboi

Hi wpmoon and Amy from the March group, good to "see" you here. But sorry of course you will be part of this "summer camp"

Wpmoon...along with what Hopeful said you might want to add pure aloe vera to your list. My RO says it's all I should use now at the beginning until changes start happening. I have Fruit of the Earth 100% aloe vera gel. It contains no alcohol. I was instructed to use it after rads in the am, in the afternoon, and in the evening.

PB

klanders

I'm lurking... and learning. Last chemo is Thursday (July 2). SIM is July 10. 6 weeks of radiation start on July 27th. Unfortunately I will have to be away from home during the week and will be back home full time just as school is starting for my kids. I'm thankful that I'll be able to be home for the weekends. So, Andrea, we are about on the same timeframe. I also had a BMX and I had DIEP reconstruction two years ago. The cancer is back so this time I get to have chemo and radiation which wasn't deemed necessary the first time around.

Hopeful82014

klanders, so sorry you're dealing with a recurrence. I hope this time will be the last time for you. That's tough to be away from your family during the week; I hope we can help keep you company.

Good luck with your last chemo and your simulation, and welcome to Camp Donwannaburn.

april25

My Sim appt. was when I had 4 tattoos, sharpie marks and 4 tagaderm stickers put on. No mould. Then I had several weeks off and started treatment. I don't think there was any dry run, or maybe it happened along with the first treatment, since the first and second treatment times were longer. After that it is only a few minutes, taking longer in order for me to change and come in and lie down and get shifted around to the right position... but still around a 1/2 hour or less. All but 2 stickers were removed after the first treatment. I just had my 13th and now only have one sticker on my side with an X on it. 35 (7 weeks) total treatments.

So far no redness or tenderness. Still wearing underwire bras. I'm supposed to put on Calendula cream and Aloe Vera lotion/gel 3x a day. I couldn't find alcohol-free Calendula, either, so I'm just using it. At least the Aloe doesn't have any, I figure. I'm only managing lotion 2x a day, though...!

I see the RO once a week where he mostly just checks to see if I'm having any problems. I sometimes have to take a nap in the late afternoon/evenings... but otherwise don't have a lot of fatigue.

Still... I'm only just reaching the 2 week point, and was told most SEs start after that!

I'm not working right now, but I think I could manage to do it if things keep going like it is now -- I could easily do the treatments on a lunch break. But this is cumulative, so I expect that I'll be very happy to be able to rest a lot as treatments go on!

SweetHope

Hopeful, Yes, I get to double up on Thursday's boosts (6 hours apart), so I can be finished before the July 4th weekend.

RO and I discussed several things this week that I wanted to pass on to you all:

When finished, I will meet periodically with RO for the next five years.

I asked for a treatment summary for my personal health record. RO agreed, adding that HEPA laws can screw up access to records. (Plus I want to be in control of where record is kept. Even safety deposit boxes at banks flood...thanks Katrina).

Maybe not for you, but for me this tx is a lifetime of rads to everywhere I was treated (26 whole breast, armpit and up to the clavicle nodes, then 7 boosts). RO said if I were to have a new primary cancer in that breast (recurrence rate is now only 4%), I would need to have a mastectomy with no radiation. Surgery will be possible ..."There are ways surgeons can work with radiated skin." (Good to know, but I plan on never having cancer again.)

Many of you will be starting next week. I wish you all healthy skin and speedy treatments. Just remember the goal...no recurrence! My odds of recurrence dropped from 34% to 4%; so once I got over the initial anxiety, I was so enthusiastic and happy each day to be fortunate enough to get these treatments. And I want my rad techs to know how much I appreciate their expertise and courtesy. They see many very, very sick patients every day, so I never wanted to add to that sadness.

Next step, is hormone therapy. So I'll see many of you there.

Best wishes, Becky

Hopeful82014

That's great news SweetHope. I'm so pleased that worked out for you.

Thanks for passing along the info re: your future treatment plan, access to records, etc. It's a good reminder to be in charge of our own records as well as our care.

Good luck with whichever anti hormonal you end up on. Most of all, NO RECURRENCE.

Thanks, again, for spearheading this group and helping us see this through. You are greatly appreciated.

RV6gal

Hey Sweethope, that's great you can double up the last treatment and be done this week. I don't remember the numbers my RO gave me but the radiation does really kick butt! Great odds for NO Recurrence for sure. That's a great suggestion about your records too. I did that for my chemo but forgot to ask about my rad treatment. Good luck with the hormone treatments too. I have been on Tamoxifen now since late April. Sure hope it is doing what it is supposed to! I tell myself it is everytime I have a hot flash....

Midgiemoon - It has been many many years since I saw PEI but it is a beautiful place. A great destination for relaxing in the fall.

Happy Canada Day tomorrow to my fellow Canadians and a great 4th of July to all of you ladies in the USA as well.

sailorbev

Hi everyone. I had my CT scan today. I will have the dry run next Tuesday and start the radiation the following day, 7/8. I am all marked up with magic marker and have to be careful not to wash or rub it off. No deodorant until this is all over. Yikes! I sweat a lot and it has been hot and humid here this summer. I was told to use cornstarch but I can't imagine that will do the trick. Any suggestions on how to apply the cornstarch?

I will have to have a minimum of 4 1/2 weeks of radiation and maybe as many as 6 1/2 weeks. I am so disappointed. I was hoping to have IORT and skip the daily radiation but I ended up not being a candidate. I know I am not alone in having difficulty accepting how cancer is interfering with dreams and plans.

Midgiemoon

Hi Salirobev!

I am right there with you! I am all marked up, and ready to roll next week. It is very inconvenient, but as I sat waiting the other day, I decided that I would bring a smile every time I walk in there.

It's a tough job those techs have, and I am well enough to hopefully brighten their days. I am in for 6-7 weeks, I will know for sure on Monday... I have my beautiful PEI to look forward to when I am finished, and I can't wait to get there! Stay strong, we'll be done soon!

~Midgie

RV6gal

sailorbev, I didn't use cornstarch during my treatment (probably should have) but one suggestion I saw somewhere was to put the cornstarch in a nylon knee high and pat it on. Another thought is to buy a cheap makeup brush. I think that would work

ksusan

Get a knee-high stocking. Pour in about 1/2 c cornstarch. Knot it so the cornstarch is reasonably tightly held in the foot portion. Use this to poof a little cornstarch in your underarms. Don't put your shirt on until you're done--the method is a bit dusty.

so-she-did

Sailorbev - I put the cornstarch in a sock and tie off the end. Then I just pat it against the skin. Not the sexiest look in the world to have white powder under your arms while in a sleeveless shirt but having gained 20 lbs on chemo and being bald, that ship has long since sailed for me - lol!

molly1976

sailorbev, my RO says I can use natural deodorant as long as it's unscented (like Tom's of Maine). It's a poor substitute for the real thing but I carry it in my purse and reapply a couple times throughout the day and it's definitely better than nothing.

Hopeful82014

I, too, was told Tom's was fine. Was advised to use 50/50 cornstarch/baking soda to reduce friction. It's messy but works! I try to apply it over the sink or tub/shower to limit the mess.

Sailorbev, I understand your disappointment. It's so rarely in cancer treatment that we're told 'oh no - you can take the easier/shorter/more pleasant route.'

I was certain I'd been told 33 tx only to be told on first day by RO that it would be 35. Somehow that was really hard to take, even though it's only 2 more. My mind's adjusted to it now but we'll see how I feel when I get down to those last treatments! Good luck to you.

ORgal

Just had to post on here that I finished rads yesterday!  Even though I rarely post, reading that others are going through the same has been a tremendous help to me.  I was lucky and only had to go 21 times.  I'm doing really well, barely had any fatigue, worked full time, got red and a little swollen at the end, but no skin itching or breaks.  They said symptoms can still come for up to a week after but I'm hoping for the best.  Wishing the best for all of you in the middle or just now starting.  It's a pain to go every day, but it's a simple process to get used to and you can do it!

Metta

Really like those summer camp analogies, everyone. ORgal, congrats! I hope you don't have any reaction this week. It sounds like your skin held up really well. I finish next Tuesday, which seems like a long time from now. I think I did well, too, all things considered, but I certainly didn't enjoy it. I finally accepted it, though, and stopped analyzing it and crying about it. It only makes it worse.

Question for you all: Did you shave your underarm during radiation? I just bought an electric razor (which I think we have to use from now on, after lymph node surgery). I'm not sure how I'm going to shave such a sensitive area. I guess those poor techs will just have to deal with it. I'm sure they've seen worse.

Hopeful82014

OR gal - how wonderful!! Congratulations - and thanks for sharing your success. Did they give you a sticker for completing treatment? A gold star on your chest?? And yes, it is a simple process and one falls into the routine very quickly.

Metta, I can't believe you're so close to being done - with the holiday Tuesday will come faster than you realize.

Re: shaving: I tried shaving with an electric razor exactly once and ended up nicking myself - the one and only time I have EVER nicked my underarm. My hair doesn't grow fast in that area (fortunately) so I've only shaved once since surgery and I did that with my regular razor but I stood in front of the mirror, used a LOT of lotion on it, and watched very, very carefully. It worked out just fine. I'm not advising this, of course, but I will warn that it's just as easy to nick oneself with an electric razor as otherwise! I'd be interested to hear if anyone else is as klutzy.

molly1976

Metta, my doc said no shaving. Not really an issue as I don't have underarm hair right now anyway.

ORgal

Hopeful - no gold star, they jokingly said they usually prepare a long speech for the last day... but that was all.  Hubby and I had ice cream last night to celebrate.

About the shaving, wow, I never even thought about it and don't remember anyone saying anything about it. I've been shaving with a regular razor since about a week after surgery.  I was careful around the incision at first, of course.  I do have lingering soreness at the bottom part of the incision (please someone tell me that will get better), but not from shaving.  The breast incision doesn't hurt because it's still numb!

Midgiemoon

Hi,

I am wondering I f anyone out there has a long commute? I drive 40 miles each way, and have asked for my treatments to be in the afternoon, so I can just drive the 3 miles home. I am hoping to work full time for the first 2 weeks. I am taking a week off (for my short term disability exclusion) then working half days for a while, and then a few days off when I am finished. Does this sound reasonable? I manage 12 people and we do critical work for a government agency, so I am feeling like I need to be there for visibility, some of the time. My boss is great And wants me back while and healed (he is more worried than I am about this!).

Just curious what you all do about commuting and fatigue...

Thanks,

~Midgie

JenH2015

Hopeful82014 and molly1976, thanks for your responses on the hypo (short) versus standard protocol. I did more research and reached out to my brother (who heads a vet hospital and has contacts in the animal and human cancer worlds). After looking over the research and reading responses from several noted oncologists, I decided to go with the short course. One of my brother's colleagues mentioned something I can take after the treatment is over to reduce the risk of fibrosis. Where there have been studies, they seem to show little difference - or even slightly better results from the shorter protocol, and there seems to be some benefits to hitting the cancer harder for a shorter time, as the cancer cells (as well as normal cells) can respond to the attack by the radiation and start dividing more aggressively. The main take-away I got from the people who responded to me was that there was no sure answer and that either course was appropriate with some people saying they would stick with the longer course until more studies have been done and others suggesting a slight preference for the shorter course. All that is, of course, predicated on the initial tumor meeting very specific criteria (small, node-negative, clean margins.) A lot of the information suggested the longer course in the absence of more information, but, as the Canadians pointed out, they have been following their patients for over a decade and the Brits have similar information in their retrospective study. I would definitely not recommend any course for anyone else, but I am comfortable following my ROs suggestion and going with the shorter course. I am sure she would not have recommended it if she did not think that it was equally good. Living 110 miles from the cancer center with two teenagers at home, a shorter course will make my life much easier (I will be staying with friends in Seattle to shorten the drive during the week - but hated the idea of being gone for half the summer.) Fortunately, I have my own business and can work anywhere I can boot up my laptop.

AndreaC

Hi Midgie - I haven't started radiation yet - I will in early August - still going through chemo (only one left!) However, when I do start rads it will be in a town an hour's drive from where I live. I live in Duncan, B.C., on Vancouver Island and the cancer clinic is in Victoria. While I am having rads (6 weeks) I will be staying down in Victoria rather than commute back and forth every day. My husband works in Victoria so it's actually more convenient for him, and we have lots of family down there we can stay with. We are going to stay with my mom and see how that goes...haha!

I haven't worked since February - I'm an ICU nurse and it involves 12 hour shifts (not to mention the fact that peoples' lives depend on me so I have to be in top form to do my job properly). I admire people who can work throughout their cancer. I am fortunate I don't have to.

Andrea