What to expect from treatment and ways to cope with side effects.
Posted on: Nov 4, 2019 01:52PM
I didn't see a thread for the November group. I start my 1st treatment this week and I feeled drained before starting. I think I went a bit overboard buying lotions for my skin. I also have water from Lourdes which I plan on using. My sonic boob is uncomfortable and looks a bit like a football. Hoping it withstands the treatment
Posts 1 - 30 (78 total)
Nov 4, 2019 05:41PM Spoonie77 wrote:
Hi fellow RADs warriors!
Hope you don't mind me stopping in to say hi. Hi! :)
I just wanted to stop by and wish you all good luck on your RADS journey. I finished my RADs on Halloween in 2018. Though my experience in RADs was a "bit" rough, and I ended up with Fibrosis, LE, and Rib Dysfunction (Costochondritis), many others in our Oct 2018 group did just fine and so have many other members since! The odds are in the favor of y'all having minimal SEs . :)
I was given many stretches and exercises by my Cancer Rehab PT and RO that helped me to keep from losing range of motion and manage the Breast Lymphedema that developed during my RADs treatments, which I had posted in my RADs group and I'll share here too in case anyone might find them helpful. Two rules of thumb - go slow and gentle and If in doubt, ask your team. Always.
Oh and before I forget, there's a really great link about What To Expect During Radiation from the Memorial Sloan Kettering Cancer Institute that MissouriCatLady in her June RADs thread and she was right!! it's really full of good stuff, things I wished someone had told me before I started too. Give it a look see, can't hurt.
Also, if you've not read this thread yet, List of what to do/get/pack to prep for Radiation Therapy, it's also a good place to go for tips and tricks on what helps during the next few weeks.
At the end of this post, I've shared some info/sites/videos about Gated Radiation (where you need to hold your breath). I had to do this due to my Left Sided BC in order to help protect my heart from the RADs. Some of you may need this and hopefully these resources will put your minds more at ease.
Ok, sorry to drone on. Think I'm nearly done! I sure hope all of you will sail through treatments with the minimum of SEs. This was our thread Radiation October 2018 and we discussed quite a few things that were very helpful along the way - including different creams, hydration, NAPS, exercise, etc. Maybe it might be helpful to you on your journey too.
My best advice that I can pass on, that helped me is this:
1) Start using Calendula or other creams 2 weeks prior to treatments on the area of RADs (if one breast, be sure to get up into the armpit and into the ribs as well). This is what my RO asked me to do. Continue as your team directs you, most of ours seemed to say 2- 4 times depending on various SEs.
2) Drink lots of water.
3) Walk or move as much as you can, given your own limitations.
4) Double check with your RO/team about meds you are on, as some on my list were ones I shouldn't take before AND during RADs & after for at least 2 weeks (antioxidants especially).
5) Everyone is different. Some experience SEs immediately (like me lol), others sail by with very minimal SEs. If you are concerned or experiencing pain/redness/swelling/heavy feeling/etc, don't be afraid to speak up to your team. That's what they are there for! :)
6) If you do experience SEs, one of the things that SAVED me was "Boob Lasagna" - whuch us a cream called Aloe Vesta that's layered on with special gauze and then wrapped under a compression bra. I think I would have lost my mind the last 2 weeks without it. Ask your team. Also, you can find it on page 6 of the Oct Rads Group.
Ok all, hope this will help you all a bit on your RADs journeys.
Wishing you all the best and quick healing after you get to ring the bell! Good luck Warriors! You got this! <3
Breath Holds (Gated Respiration or DEEP INSPIRATION BREATH HOLD (DIBH)
This might be something some of you will have. I did. It's usually used for left sided BC to keep the heart out of the way of the RADs.
I was afraid I was going to screw it up somehow. What helped me was asking my RADs techs about this directly. For me and the machine I was being treated on, they input thousands of data points from all my imaging info from the "setup" (plus recalibration for each treatment and a new scan each week) and other mumbo jumbo I couldn't hope to ever comprehend into the computers that run the machine and it established a "parameter" for me, a gate.
If I, through holding too much breath, not enough, or couldn't continue to hold my breath any longer for whatever reason, the machine automatically shut off in a nano second when I "fell" out of that parameter (gated) range. Hearing that made me feel a ton better about the role I played in potentially screwing the treatment up and accidentally radiating my neck, brain, foot, whatever. LOL.
Good explanations can be found here:
A couple of good videos on YouTube are here:
"Deep Inspiration Breath Hold with VisionRT System" https://www.youtube.com/watch?v=JLWaTFHkCXA (I like this one because it shows exactly HOW the computer knows WHEN to shut off the radiation!)
"Deep Inspiration Breath Hold Technique" https://www.youtube.com/watch?v=n6jXkgLnNnY
"Deep Inspiratory Breath Hold (DIBH) Treatment" https://www.youtube.com/watch?v=oU8TE0fvqMg
Hopefully something here helps ya'll get through the rest of the RADs in your plan.
Nov 4, 2019 05:47PM BAMR wrote:
I will start in November, also, but I don't have a date yet. Went in for my first visit and had a cat scan and they set up the platform. Told me they would call me when they were ready, probably 7-10 days. I'm doing both breasts and was told 33 treatments. That goes through the end of the year with Thanksgiving and Christmas in there.
Nov 5, 2019 03:42PM AnnC2019 wrote:
Thanks for sharing all this great information Spooniie77
Nov 5, 2019 04:58PM Spoonie77 wrote:
You're welcome Ann. Wish you the best. And IMO you can never have too many lotions! I had to keep buying more and due to my SEs from RADs, I needed them well until 3 months post RADs, and still must keep the boob lotioned up with my standard Nivea. If you or anyone else has questions, don't hesitate to ask. Would be glad to help anyone if I can.
How did your first txt go? Or are they still later in the week?
Nov 6, 2019 07:25PM cathy67 wrote:
I am supposed to start later this month, will have 20 rounds.
Nov 6, 2019 07:32PM AnnC2019 wrote:
I had my first session today. Is it possible to get skin discoloration after the first treatment? My lower breast looked slightly red/tan to me. I hope this doesn’t mean my skin is doomed
Nov 6, 2019 09:39PM twolutzjo wrote:
Just wanted to pop in and say I finished my rads on October 22. I had 16 treatments with 5 added boosts. I had a really positive experience with the whole process. I was told to use 100% aloe vera on my breast and underarm 3 times a day. I was given a small bottle, but I have an aloe vera plant and was told that was even better. I kept expecting the REAL fatigue to set in but it never did. I did develop a slight rash but was advised to use Hydrocortisone cream on the rash. Put it on 1/2 hour after the aloe vera. I tried to drink lots of water and I kept up my daily walking routine. Just had my 2 week check up and my skin is really good and the rash is just about gone. Started letrozole day after radiation ended and am hoping for minimal SE. Thinking positive and continue drinking water and walking. Good luck to all going through rads now.
Nov 8, 2019 05:43PM MassGirl55 wrote:
I met with my surgeon on Wednesday for the follow up after surgery last week. She doesn't feel that there is any reason to have radiation! DCIS was non-invasive at 6mm with clear margins. She is having me meet with the Oncology Radiologist to discuss in more detail but I'm leaning toward meds only; so waiting for that appointment.
Nov 9, 2019 02:41PM AnnC2019 wrote:
3 down and 22 more to go. I am lining out the calendar every day and that makes me happy to do that
Nov 9, 2019 02:49PM IAmACat wrote:
Hello ladies. I am glad to join the November thread. Best to the ladies getting radiation right now. I did my ct sim and had to get a sedative prescribed to me for the radiation, which I have not started yet.
Nov 9, 2019 04:06PM Kfmama2 wrote:
I finished 3 treatments with 17 more to go. The first one, which included breath holds and XRays was a little intense because it took about an hour, which was a long time to stay in one position. The second two were so much faster and easier.
Nov 9, 2019 06:19PM mpv459 wrote:
Glad to see everyone joining,, Makes me feel not so alone. Heres hoping this goes quickly and without side effects for us all. I had surgery first (single, right) with node dissection, then 16 rounds of chemo and cold capped, now radiation (30 all together) and then estrogen blockers. Never know where life is going to take us but here we are. At least we should be done by Christmas..
Nov 10, 2019 11:10AM BAMR wrote:
I still haven't been called to start even though my 7-10 days since the setup has passed. Surely it will be this week sometime. I hate thinking about finishing in 2020. Wanted to make all my treatments in 2019 so I could say that's my bad year.
I'm trying to decide whether to attempt to shave under my arms or not. Has that been an issue for anyone who has started? My RO says I won't be able to, once radiation starts. I don't really have much to shave, but I'm thinking I need to rather than let it keep growing out.
Nov 10, 2019 08:29PM cathy67 wrote:
I just shaved, set up will be this Thursday. My first time to shave after surgery, dont dare to touch armpit area with surgical scar.
Nov 11, 2019 06:38PM BAMR wrote:
Thanks, cathy57. RO called today and my trial run will be tomorrow, and then the real deal starts Thursday. I shaved too. My hair started growing just in the last few weeks. I was kind of hoping that underarms would be the last to come back after chemo, but no dice. Seems like it's leg hair that hasn't come back yet, for me.
Nov 11, 2019 07:07PM - edited Nov 11, 2019 09:55PM by thisiknow
Just finished two weeks of rads so half-done. The last 4 days will be boosts. Not worried about shaving. Just avoid the temptation
Nov 12, 2019 03:11AM suzee30317 wrote:
Hi, November zappees. I did simulation on November 1, and started radiation (16 + 4 boost) on November 6, so I'll be doing #5 this morning. It's a piece of cake, I have a great team who gets me in and out in just a few minutes. I am doing the breath holding technique (left side cancer) and it has been tricky to find a way to remember how much to inhale before holding. I figured out that if the little box they put on my abdomen is in exactly the right spot I can feel it wobble right when I get to the right amount of inhale, and being able to set up correctly every breath hold has saved some time and meant I don't have to hold as long. So now the techs have me place the box.
I was told not to shave. It's winter here so NBD, and honestly I am covered in Sharpie and second skin from just below my neck to my belly button, so the aesthetics of not shaving are the least of my problems. :) I'm just grateful I can wear turtlenecks right now.
So far, I am tired and my breast is a little swollen, but not painful. I did not expect tired for a while, and am unhappy that it started after just the third session, but if that's the worst of this, so be it. I do find that drinking a lot of water helps, and am trying to continue yoga and walking daily despite the draggy feeling. Also using Miaderm several times a day to try to stave off skin issues, so far so good.
Nov 12, 2019 04:32PM mpv459 wrote:
Just finished 4/30 today. I am doing the breath holding also but my cancer is right breast. I think maybe the holding is because they are also doing the chest wall?? Thanks for the tip about the box Suzee.. I will keep that in mind tomorrow. Mine are also getting faster each time which is good for me. I am using aloe vera (Fruit of the Earth), a prescription steroid and Aquaphor(which I hate because it is so greasy and never seems to absorb. Thankfully I have no hair yet to shave... Wishing everyone the best this week.
Nov 13, 2019 03:06PM AnnC2019 wrote:
Finished my sixth treatment today. I need to start using the aloe vera gel. I did add some aloe juice which looks like water to my lourdes water. After I spray my boob and chest, I alternate with Avene ciclofate and centella by cytolnat which a pharmacist in France recommended. Before bed, I douse my skin with Badger’s chamomile and calendula baby oil. That is my current regiment. Too early to tell how the skin will react. I never had really firm skin and tend to scar easily, so not holding my breath that I will have few side effects. Good luck to everyone
Nov 13, 2019 10:40PM - edited Nov 13, 2019 10:42PM by IAmACat
I did my first radiation today, with breath-holding. I had to take a sedative beforehand because I freaked out during setup. After the extensive alignment was done, I was asked to hold my breath and heard some hums about 3 times, that was it, and don't feel a thing yet. I will apply aloe and aquaphor tonight, before bed.
Nov 14, 2019 03:48PM cathy67 wrote:
Just back from setup, it was easy, and they will call me in around ten days for the schedule, will have 20 rounds to go.
However I felt very tired after a few hours, then took a nap, still tired, is it because of radiation or because of mental tiredness, who knows.
Nov 15, 2019 02:31PM BAMR wrote:
I was supposed to start on the 14th and went in for my trial run on the 13th. As the nurse was taking me to change, she apologized profusely and said that somehow my bag had gotten a hole in it and deflated and we would have to do the whole setup again. It wasn't a big deal to me; if it's a few more days until I start, I don't care. They, on the other hand, were so embarrassed by it! I bet every person in that building apologized to me. Now, I'm starting on Monday afternoon. I was hoping to finish all my treatments in 2019, and make that year my shitty year, but now I'll run over into 2020. I guess it's still no big deal.
Sounds like the creams are working for you all. Keep drinking that water!
Nov 16, 2019 08:47AM WaterTower wrote:
My lumpectomy was a success and healed very well, and I'm facing radiation starting November 20, with the dry run the day before. Happy to read some stories of limited SEs in the October group, and want to do what I can to minimize fatigue and skin damage. Lots of questions, as the setup meeting last week seemed very rushed and they didn't give me any written material about creams, clothes, etc. I did read What to Bring posts on this forum, but am confused about creams etc. Calendula seems to be full of chemicals...? I do have pure Aloe, and Dove soap. One fear I have is that the lung will be affected, as they warned me that there could be a cough from the edge of the lung being hit. I asked the RO about prone positioning, but she said no, that is mainly for those with pendulous breasts (I'm size 40C but the right is slightly smaller since surgery haha) who are getting treated on the left, so they protect the heart. Honestly I wonder if my hospital even has the prone equipment/experience. Would love to hear thoughts/reassurance about this. I'm a former smoker, haven't smoked in about 10 years, but anything that makes you cough seems like it should be avoided. Pretty low risk though, right?