What to expect from treatment and ways to cope with side effects.
Posted on: Nov 11, 2015 01:32PM - edited Apr 9, 2016 07:12PM by mdoc524
My name is Mary and currently finishing 16 Rounds of Chemo and will be starting Radiation sometime in January - no definite date yet! These forums have been such a significant source of support and strength for me. I noticed there is a Fall RADs group and wanted to get a thread started for anyone who may be starting Radiation in the upcoming winter months. If you want to join this group please comment and share details on your Radiation Plan if known yet - I will create a group list as folks join. All are welcome ..
Looking forward to getting thru RADS together! We Can do This!!
RADS Tips/ Shopping List:
Posts 1 - 30 (2,574 total)
Nov 11, 2015 01:40PM KCinMN wrote:
I'll join you!
I'll start rads most likely December 14th, and will go until the end of January. I've met once with my RO, but won't go again for a Sim until early Decemver. Right now I'm just resting up after surgery last month, and a long summer of chemo.
I've been reading the fall rads postings lately, trying to get a feel for how it all goes... Sounds like aquaphor, calendula, and cooling towels are all helpful!
Nov 11, 2015 01:54PM octogirl wrote:
I am on the Fall Rads group but will straddle winter, with a likely start date of December 7th (sim is on December 2nd) with six weeks....So will join this group as well. Looking forward to sharing tips and support.
Nov 11, 2015 05:18PM Peabrain wrote:
I'm in. I am tentatively scheduled for 5 weeks of rads starting Jan 4. I see the RO next week to confirm.
Nov 12, 2015 06:38AM Zuwali wrote:
Add me in. I don't know definite dates. Probably will start Rads sometime in early December.
Nov 12, 2015 09:38AM mdoc524 wrote:
Hello All - Thanks for joining ... I know none of us chose to be here but since we have to be we can go thru RADs together .. I have participated in Surgery threads and Chemo threads and found both such a great source of strength. Nothing like talking directly to folks (new friends) going thru the same thing..
I have updated the top section with what you all shared as of now .. any updates or if you want it to look different - let me know. I have always liked previous threads that use the top section to show the group names and any other pertinent info .. If there is anything you want to see at the top that carries over on each page please let me know here or pm me ..
I plan to add a RADs Tip list too as we get any shareable tips so if you have any please share.. I have been reading all the RADS related articles here on BC.org and also reading some of the previous RADs threads so will start to grab some tips from those sources and add them here..
Nov 12, 2015 12:19PM KCinMN wrote:
Mary - thanks for doing this! I'm looking forward to connecting with this group!
9 year old twins?!?!? How are they holding up?
I have an 8 year old and 9 year old. It was really hard at first, but they've been holding up fairly well...
Nov 12, 2015 01:01PM Twnkltoz wrote:
I'll be starting rads in early January and will probably have 33 treatments.
Nov 12, 2015 04:31PM KCinMN wrote:
emmiejohns- how is it going so far for you
Nov 12, 2015 11:19PM courtleboo wrote:
I don't have RADS in winter, I just finished on Nov. 2. I found the fall rads ladies incredibly helpful. And many of us are here from Chemo in July. Good luck to all!
Nov 13, 2015 09:13AM mdoc524 wrote:
KCinMN - thanks - definitely hard on the kids at first - asking a lot of questions - I had BMX surgery first a few weeks after diagnosis and that was hard on all of us at first .. thankful for my husband or don't know how I would get thru all of this - such a long journey! My twins are boys and into sports and video games so they have been pretty good hanging with Dad especially during 2 hospital stays I had over chemo complications - fingers crossed no more hospital as I finish chemo. An 8 and 9 year old - I wonder which is harder - twins same age or your two a year apart .. I love that they have a forever friend. I am a twin (brother) and we are best friends!!
Twnkltoz and Emmiejohns - welcome to the group and Emmiejohns you will most likely finish before most of us get started so any tips please share and let us know how you are doing - hugs to you!
Courtleboo - Congrats on finishing RADs - thanks for popping in!!
Nov 13, 2015 12:20PM - edited Nov 13, 2015 12:20PM by Emmiejohns
KCinMN - I haven't been checking these board very often, so sorry for the delay in responding.
Yesterday was treatment 5 (I think). The actual process, after they get you set up and "marked" up (my first 3 tattoos! - but I can't see them. I asked for butterflies, but no - just tiny dots). And after you start, your breast looks like a runway with all kinds of marks that they don't want you to wash off - look like black sharpies. That's so they can line you up correctly each time.
The actual radiation treatment is easy, so far, but my breast is shrinking and turning a little brown (I am English-Irish white and have never tanned in this area before). At age 64 I feel like these young women who are the techs think I am a little addled, because they tell me the same things over and over. I wish I saw the doc more, but after the first (consultation) appointment I haven't seen him much.
Every time I mention a symptom I (think I) am having, "the girls" tell me that it's too early. But I have had irritation in my arm pit (they tell me that's because of the cut nerves due to the sentinel node therapy). I also feel some irritation on my upper arm (not there, they say).
Anyway, as I said, the treatment is easy. Since my car has broken down, getting there is the biggest issue (that happened yesterday on the way to). 6+ weeks seems like a long time.
Sorry to run on, but this is how it is for me right now.
Nov 13, 2015 12:24PM - edited Nov 13, 2015 12:25PM by justmaximom15
Count me in even though I don't have a definitive date yet, I'm pretty sure we'll begin the first full week of January. I finish chemo on 11/25 and have my appt with the RO on 12/3 to discuss planning. However, since I'm going on a trip in mid-December and then the holidays start, I'm not sure he'll want to begin me until we can do the full week at a time.
Last plan of attack was 6 weeks / 5 days a week.
Nov 13, 2015 12:24PM Emmiejohns wrote:
courtleboo - How did radiation therapy go for you? What kinds of side effects did you have? Congratulations on finishing (and, by the way, isn't it nice we finally got some rain here on the west coast?)
Nov 13, 2015 12:38PM courtleboo wrote:
Emmiejohns: RADS went smoothly for me. I only had 21 treatment. My skin held up nicely up to week 3 then my armpit area skin was getting thin and sore I used Curel ultra healing, Jergens and Aveeno the first 3 weeks. Aquaphor week 3 and 4. Right after treatment. Now that I'm 2 weeks out I've been using Aloe Gel from Trader Joe's and it's been great. As of now my armpit and nipple are peeling. But it is a dry peel, like sunburned skin.
And yes, the rain here has been glorious!!
Nov 13, 2015 12:39PM marijen wrote:
I feel like I'm either treated like I'm addled or like I'm 40 something and should be on top of things. But I do hate when they repeat over and over like you have a memory or hearing problem. It really gets me that each visit to each specialist does a mini psychology analysis. If you're not cheerful and smiling, your depressed. If you are careful to answer their questions thoughtfully you are slow and flat. Really? I have to be "on" when I'm not feeling well? It's true the irritation in the arm is from cut nerves. Hoping they find each other and reconnect : ))
Nov 13, 2015 01:10PM LMC826 wrote:
Please add me in this group! I should end chemo mid December, and hopeful to start sometime early January
Nov 13, 2015 09:06PM KCinMN wrote:
Emmiejohns - interesting to hear how it's going so far. When I heard about the tattoo thing I was really bothered at first. I don't know why. Lol. I guess because it just seemed like another way to disfigure me or something. But I know it's just dots. What's another mark/scar/needle/etc?!? Right?!?! And kinda funny about the symptoms... OF COURSE ITS NOT RADS! Whatever...
Courtleboo - I remember seeing you post a pic of that TJ's aloe... I tried to pick some up last week, and they were OUT! Must be good stuff! :)
Mdoc - I'm glad your boys have been troopers! I think kids are pretty resilient... But I know it's hard still. My 8 and 9 year olds are best friends and best enemies. Boy and girl. LOTS of questions! My daughter loves to tell everyone that I am a survivor now, since the cancer was removed during surgery and a scan after came back clear.. It's sweet to have her loving support! :)
Marijen - the psychological analysis... Ugh! I love when I go in and they ask me every time to rate my overall health and how im feeling. Last time I refused to circle a number and just wrote in "Im being treated for cancer, what do you think?!"
Nov 13, 2015 09:13PM marijen wrote:
Way to go KCinMN!! I have found that when I find they report misconceptions they will correct what's in the history, but I really miss the good old days when you could discuss what you were feeling without it being input word for word in the cloud forever and for who knows how many eyes to see.
Another good question is when they ask "why are you here today?". : P
Nov 14, 2015 11:34AM mdoc524 wrote:
Welcome Welcome justmaximom15 and LMC826 - sorry you have to be here but glad you are joining our group!
Emmiejohns - thanks for sharing how your 1st 5 days went and how the setup went - did not know about the tattoo's - fun! Stinks about your car - hope you are able to find rides; And I love how DR's and Nurses tell you what symptoms you should or should not be having when they are not experiencing it themselves.. same during chemo. My Dr finally said to me that I am the type of patient that if there is a reaction or side effect that could happen it most likely will to me - yeah!
Courtleboo - thanks for sharing - I added your tips to the top .. glad it went so well for you!
KCinMN - I hate those forms especially the rate your pain and what level can you tolerate .. I am going to steal your phrase and use it LOL ..
Marijen - totally agree - this past week I wrote down all of my SE's from chemo and specific questions and went 1 by 1 thru them with my MO and she really listened and went thru it all with me ... felt much better after (mentally) - physically chemo is kicking my butt and she finally recognized that.. and never tried to tell me what I should or should not be feeling .. even my husband said well that was different! Like her but never felt until now that she truly understood what I was experiencing even though she admitted me 2x to hospital for complications - both stays 4 days
All - as you get firm info on treatment start date and # of treatments just let me know and I will update the top section ... and if there is anything you want added to the top section please let me know
Nov 14, 2015 11:51AM Emmiejohns wrote:
KCinMN - The tattoos are no big deal. I can't even see mine. As for the other marks, they will wash off once treatment is over. I have always been anti-tattoo for myself (I admire and appreciate tattoos on other people, but I just can't see it for my old bod - the less attention, the better). When they said "tattoo" (so casually, like I should know this already) I tried to joke with them, but unfortunately these techs are "all business". I did ask for butterflies, though. That didn't even get a comment. Really???Have a great weekend!
Nov 17, 2015 05:33PM queenmomcat wrote:
(waves hello to those getting rads over the upcoming winter) Thank you for starting this list, mdoc. And for the (potential) list of tips. I finished rads in September.
Nov 17, 2015 05:35PM mdoc524 wrote:
Thanks for popping in queenmomcat - Congrats on finishing Rads - if you have any tips that worked for you please share!
Nov 17, 2015 06:23PM queenmomcat wrote:
I see others from the fall list have posted here as well; hopefully, they'll have suggestions as well.
I'd hesitate to give specific advice, even having been a list doyenne. So much of this does come down to "It depends on how YOU react." Crazymaking, isn't it?
What I wish I'd been told ahead of time: be clear but concise with your RO about what your concerns are that HE/SHE can address. The staff may not have the time to discuss, say, the finer points of sports bras vs. camisole tops. but if there's something important to you, mention it! (In my case, it was swimming at the Y--chlorine's a common irritant, and many ROs fuss about it. Mine said simply "You're good to go unless you get skin breaks. Then we'll renegotiate." (I didn't.))
What I didn't know: chemo is physically much more difficult, but rads is psychologically stressful. (I didn't have chemo.) You have to go in every single day, and lie alone on that cold table. But that said, we will get through this. And the lovely board participants will be here for you, with support, and food porn and tissues.
Lists of what to get and when are a grand idea....but we don't have to rush out to buy everything ahead of time. (How convenient is a big-box store to you? Do you have the time to run out to Target/Walmart when/if you do find you need scooshy bras?)
Nov 17, 2015 07:05PM biscuits wrote:
My last chemo will be a few days before Christmas, so I imagine that I will start the rads process sometime in January. I do know that I will be doing 33 treatments, 5 days per week. I am happy to see that we will have a place to come and support each other
Nov 17, 2015 09:00PM - edited Nov 18, 2015 08:22PM by Jabe
Nov 17, 2015 09:41PM - edited Nov 18, 2015 11:57AM by Shopgal2
hi, hoping to join you all for winter rads. I already see some from the septchemo boards here. I will be starting rads Jan 18th for 30 sessions, 6 weeks total. I still have 2 more DD taxol and finish chemo 12/9.
Mdoc thanks for starting this. I see you are from pa like me. What hospital are you at if you don't mind me asking? I also follow the July and August boards to pick up chemo tips. You ladies have been a great help.
Nov 18, 2015 11:35AM - edited Nov 18, 2015 11:41AM by StefLove
Hi ladies! I posted in the fall rads group but since I'm starting so close to winter I'll straddle both groups. I go for my simulation on Tuesday the 24th, and then rads start Nov 30th, the monday after Thanksgiving. I'll be getting 25 treatments plus 6 boosters. Radiologist also said that I'll be on my back with my arms over my head. He tested my mobility this morning since I feel a little tight after my second lumpectomy and node removal a few weeks ago and he said I'm good to go. Told me to keep exercising and stretching as much as possible every day.
The nurse that went over everything with me also said no try not using aquaphor only because it's so messy. This office swears by Medline Remedy Nutrashield. Anyone use that? Thoughts? :) I'll be picking up some later today if I can.