Nov 20, 2018 03:35PM Lcc2663 wrote:
Yes! Just finished chemo yesterday and go for my radiation simulation dec 3rd
What to expect from treatment and ways to cope with side effects.
Posted on: Nov 20, 2018 03:28PM
I don’t think anyone has started this group yet, so here goes. Anyone else doing this over Christmas?
Posts 1 - 30 (512 total)
Nov 20, 2018 03:35PM Lcc2663 wrote:
Yes! Just finished chemo yesterday and go for my radiation simulation dec 3rd
Nov 20, 2018 08:46PM PurpleCat wrote:
Hooray for being done with chemo!
Nov 20, 2018 08:46PM PurpleCat wrote:
Hooray for being done with chemo, Lcc2663 !
Nov 20, 2018 08:55PM ghostie13 wrote:
I start November 26 and finish up December 17. Marking and Simulation done, be glad to be finished with another step of treatment....
Nov 21, 2018 08:42AM PurpleCat wrote:
Me too, Ghostie13. I've known for over 2 months that radiation was ahead, and am so ready to just get on with it.
Nov 21, 2018 03:40PM Lcc2663 wrote:
thank you! I’ll be going in for the 4 week protocol
Nov 21, 2018 06:54PM Britspeech wrote:
I finished # 6/16 sessions today. So far very easy. Not even pink and Im British and light skinned.No fatigue either as yet. Ive been using Aquaphor after each treatment and it seems to be doing the trick.Good luck everyone and Happy Thanksgiving!!!
Nov 21, 2018 08:10PM Salamandra wrote:
Me! I had my simulation yesterday. December 5 will be my first day of radiation. I wish it could get started sooner but they said that was actually a pretty quick turn around time.
The pharmacy said there's apparently a complete block on the supply of the steroid cream the oncologist prescribed. He thinks it'll clear up by the first of the month though. I was told just steroid cream and regular lotion.
I want to start reading about and ask pentoxifylline and vitamin E for fibrosis. Someone mentioned it on a radiation thread here and I see there are a couple of older threads about it. Has anyone's doctor mentioned it to them?
My radiation oncologist was supremely confident about 'zero' radiation to lungs and heart, and minimal chance of any side effects. So I'm not sure what his take on this would be. But it seems harmless and potentially helpful...
Nov 22, 2018 11:10AM PurpleCat wrote:
Britspeech, I'm glad to hear it's not too bad. I've already stocked up on Aquaphor, and also aloe. My team advised both.
Salamandra, if you look at my signature, we're almost twins! I start the same day as you. Glad to hear that you were told this turnaround time is normal. I feel like it's taken absolutely forever to DO something about this cancer (except for the surgery) and am starting to get anxious about what might have started to grow in the meantime. I guess it's reassuring that there is no apparent hurry with this diagnosis, but it was a bit of a blow after dealing with this since early September to find that I wouldn't be done by Christmas, or even the new year. At least I get a break on those days!
Nov 23, 2018 10:28AM - edited Nov 23, 2018 10:34AM by DeeBB
I have my dry run 11/29 and start radiation 12/03. Looks like it will go in to the new year but only a week or so. I will be getting 22 treatments.
I'm a little concerned though, I think I may have developed cellulitis being the holidays my MO's office is closed, however I called the office and they took a message with my concerns and MO happened to be working at the hospital today and called in an antibiotic for me to start.
Nov 24, 2018 11:34AM - edited Nov 24, 2018 11:39AM by egregious
Doing over Christmas: raises hand
Grateful you have started this group. I've had my simulation and will begin daily rads Thursday. Eek
My sister suggested doing something nice for the tech team on Christmas eve, little present or coffee gift card, that sort of thing, to help feel positive instead of being sorry for myself. She knows me pretty well :)
Sometimes I feel brave, and sometimes I'm tired of feeling brave. Will persevere.
Nov 25, 2018 12:48PM - edited Nov 25, 2018 01:00PM by Motheroftwinkies
I will start hypofractionated radiation in Dec too. Pretty worried about it as I had mastectomy with tissue exapnder filled with saline solution. Hope the radiation does not do too much damage to the breast.
Best of luck everyone.
Nov 25, 2018 05:48PM PurpleCat wrote:
DeeBB, I hope your cellulitis is much improved! That sounds like just about the last thing you need to add to this misery!
Egregious, I like the idea of bringing something for the radiation team. I think my treatment center is closed on Christmas (and also Christmas Eve) so they don't have to work. I'll be glad of the break, although chafing at the bit to be done.
Motheroftwinkies (great name!) mine is also hypofractionated, 16 days of whole breast and then 4 targeted to the tumor area, I'm told. My coworker who had this several years ago said she had to go for 12 weeks! So glad treatments have improved since then!
Nov 25, 2018 08:48PM Tigerlily318 wrote:
Hi everyone! I had my set up on 11/12 but have to go back on Tuesday to redo it. The RO was not happy with the results/plan but she said she is a perfectionist. Not sure if anyone else has had this experience. I am supposed to start on 12/3 and hopefully this redo does not delay anything. I have started preemptively moisturizing and raking powered glutamine for fatigue per a recommendation from my naturopath doctor. I finished chemo on 10/31 so still battling some fatigue.
Nov 25, 2018 09:40PM Wised wrote:
I'm going to jump in this thread too. I started radiation last week, 11/19/18 and will finish on 12/11/18, if all goes well. So far, my treated breast has gotten really tender and a bit swollen. The treatments are easy, but I've been nervous every time I've gone.
Nov 27, 2018 06:25PM mamina5459 wrote:
Hello everyone. Starting in December: Hand raised! I had my set up 11/29 and begin rads on 12/3.
Motheroftwinkies, I too have expanders filled with saline solution and have been wondering if and how much damage may be done.
Thanks ladies for sharing. I will try to keep up with the forum, especially with things to share.
sending you all positive vibes!
Nov 27, 2018 06:45PM - edited Nov 27, 2018 06:45PM by egregious
Welcome! Hope your treatment goes well.
Nov 28, 2018 12:45PM Dani444 wrote:
Hello all hope you are all doing well. I had my planning CT today so I have a few sharpie marks and stickers covering them. I guess they do more markers after the planning is decided? I start "sometime" next week. I am getting chest wall including axillary nodes at all levels, subclacivular, and part of the intramammary chain nodes. He is sending me to PT for measurements prior to treatment. I assume that is for lymphedema? I am usually better at clarifying with a doctor but he really has a super awkward bedside manner and is really difficult to understand. He seemed surprised I was going to work during treatment. He first said he will let PT decide if I will have a lifting restriction, but then followed up with "I usually say 30 pound limit". I am going to email his nurse navigator to get some clarity on some things. Thank goodness she is amazing.
Sorry for the long post but I just need to say how emotionally draining it was. I am getting treatment at the same hospital I work at so folks I have worked with for over 20 years got to see all my business today. They were very careful to keep me covered but this is what I have been dreading, going to the same place I work for the radiation. When I had my first consult with the RO shortly after my diagnosis I sat down to get registered and the clerk I know vaguely was crying about me having cancer. WTF I don't need your emotions lady. The next closest place is at least 45 min drive each way and I work night shift. I do not think I will know the actual techs providing the treatments so hopefully it will be fine. Do you do some sort of registration or check in everyday that you go? I am going to reign in my rant. I am to the point of tears and just needed to get all that out!!
Nov 28, 2018 02:21PM PurpleCat wrote:
Oh Dani, I can't imagine how awkward that would have felt! It's too bad the clerk wasn't able to maintain a more professional demeanor. Sounds like the last thing you needed! As for working, my RO said that many (most?) of his patients who work full-time continue to do so during treatment, which gave me confidence that it wouldn't be so bad but also has made me feel pressured to just blast on through. I'm already part-time, so will mostly be able to adjust my schedule around treatments. I haven't actually started yet; CT scan was last week, simulation tomorrow, then first treatment (finally, FINALLY!) on Monday so am not sure how it all works yet. Hang in there ... it's yucky to have to do this at all, and especially over the holidays, but it won't be forever ... at least that's what I keep telling myself.
Tigerlily, DWisely, and Mamina - glad you signed on, and see you around!
Nov 28, 2018 03:23PM - edited Nov 28, 2018 03:29PM by Spoonie77
Dani - I feel for you. It was hard and very emotional for me going to RADs, and I didn't have to deal with the extra stress of having to have my treatments/experience along with my co-workers! You have my sympathy and am sending best wishes that you won't have to interact with too much going forward with those you know most.
As for going to PT, I was also sent to Cancer Rehab during my first week of RADs in order to get a baseline of range of motion, mobility, and address/evaluate anything that was already an issue due to surgery, scars, adhesions, and so forth. And yes, for the main part, the first visit I had with her, was to discuss Lymphadema, risks, treatments, and signs. I'm very thankful my RO and MO insisted on this process for me, as during my RADs treatment I developed significant SEs nearly immediately. Even though I finished active treatment on Halloween, I'm still dealing with RADs issues, including being diagnosed with Radiation Fibrosis and Breast Lymphadema, and awaiting a Dermatology consult on MOnday, as my RO has never seen what is currently going on with my skin near the RADs field. Le Sigh.
I hope going forward for you, things will even out a bit and that the PT visit will be helpful and reassuring for you. Oh, and yeah, about checking in daily...I was given a little card that I ran through a computer scanner when I arrived for treatment. Also, I had to stop at the front desk for a ID bracelet and patient stickers each time. All in all, quick and painless. It really took me longer to change and wait for the tech to come get me than it did for my gated breathing sessions. 4 breaths in about 10 mins or less, and I was out of there to change and head home. Too bad my drive to and from was 45 mins one way.....uggh. That was such a pain.
Anyway, the first few sessions are IMO the longest and most emotional....well, maybe the last 2 or 3 were pretty emotional too as I was really on empty. Other than that, once a week after RADs I'd see my RO. And also weekly, usually on Monday, my team would run new x-rays to evaluate any changes that might have taken place and adjust the weeks treatment based on that.
Hang in there!
Hugs and healing....and wishing good luck to all who are starting their RADs this week.
Nov 28, 2018 03:36PM AliceBastable wrote:
At the hospital where I'm going for rads (33 sessions, started late October, ending mid-December), I had to check in at radiation registration the first few days, just popped my head in the door and gave her my last name. Other than that, I have to go in there at the beginning of each month to do a brief re-registration for insurance purposes. One I'm in the actual treatment area, after changing into the wrap robe, I stop at the tech area every day to give my name and DOB before walking through into the Chamber of Zaps. It's a required verification even though they know my name, and they told me I'd be doing that when I first started. It seems to vary a lot from one facility to another.
Nov 28, 2018 09:35PM Dani444 wrote:
thank you everyone for the encouragement. Purplecat, you are right it isn’t forever...It sounds encouraging that your RO says that most of his patients continue to work. I am single so I really do need to get back to work!!!
Spoonie. I am really sorry to hear you are having so many issues after rads. I hope the dermatologist can solve the issue with your skin. Is it the cancer rehab that will help you with the lymphedema? I hope things get better, it does suck that we have to do this at all. Sounds like the check in process will be quick so I hopefully don’t have to deal with that very often.
Sending good vibes, gentle hugs and prayers!!!
Nov 29, 2018 01:00AM PebblesV wrote:
I'm jumping in too! Hello to those of us also on the November thread, good to see some familiar faces here also.
I started in November and finish Dec. 11th like Dwisely.
The good news - I'm 21 out of 30 sessions done and my skin is fine, so no visible side effects. Miaderm and Aloe Vera Gel are my new best friends - anyone new to this, I suggest you look these up! I lotion morning and night with AloeVera, and immediately after radiation with Miaderm. I will probably up the Miaderm now that I'm heading into the final sessions as I heard that some people who did not experience side effects like me got them in their final treatments, so...
I AM worried about one thing but I don't know if it's caused by radiation or unrelated. I have asthma and my wheezing has been a lot worse since starting the radiation treatment. I am worried about whether it impacts my lungs, but also I'm in southern CA and not far from the Woolsey Fire in Malibu, so it could be air quality. And I've been working from home through this so it could be lack of sleep. Any reassurances or concerns re: radiation hitting the lungs?
We went through this a little bit in the Nov. thread and we all followed up with our docs who provided some reassurance, but thought I would put that out there in case anyone else has a similar experience or just some thoughts / reassurance / advice. I plan to finish up the sessions so it's not like I'm going to stop, plus other than that I haven't really had side effects. Still... a little bit concerned...
Nov 29, 2018 03:03PM egregious wrote:
Leaving within the hour for my first radiation treatment. Scared. Not sure why. I'm not afraid of hospitals, I understand the technology and the need for treatment, and I like and trust the medical team.
Well, here goes!
Nov 29, 2018 03:37PM Dani444 wrote:
egregious, I hope everything went well for your first treatment. Let us know how it went. I don't blame you for being scared! I too am anxious about starting. You got this!!!!!! gentle hugs and positive thoughts coming your way!
Nov 29, 2018 07:32PM egregious wrote:
Home from rad #1 - it was ok. I was soooo anxious before going in, but once I got there things went smoothly. They explained everything, sometimes twice, so I knew what to expect. It was necessary to hold still for a super long time while they took X-rays and then again during the treatment.
It was challenging to hold my breath long and deep enough, but they explained if I didn't do it enough the beam would cut off automatically and they would give me a little break. They offered me a blanket which was excellent. They marked me up with quite a few little black marks.
After the treatment I met with the radiologist and the nurse to talk about possible side effects and what products to use and not use. I've got eucerin and miaderm which seem to be on the approved list. I will expect some fatigue and cross my fingers on skin issues. I have to do range of motion exercises every day so things won't feel too tight in my shoulder and chest.
They changed the number of treatments to 16 and took the boosts out because of the small size of the invasive piece. Feeling very grateful for the reduced number. Looks like I'll be done before Christmas. The treatment area is larger than originally planned, to include my armpit, because they hadn't done sentinel lymph node surgery.
All in all I'm relieved and exhausted. Once again tomorrow!
Nov 30, 2018 12:55AM - edited Nov 30, 2018 12:56AM by PebblesV
egregarious - the good news as well is that subsequent treatments will all be quicker than this first one! They only do the X-rays on the first and I think at the halfway point. So tomorrow you will see how it's mostly like without the X-rays and it's super fast.
As you know, I've been using Miaderm right after treatments and aloe vera morning and night. I am 22 out of 30 sessions in and, assuming the asthma is actually due to the fires and not rads, then so far I have no side effects. And that's with more sessions than you have on your plan so hoping this will be a smooth ride for you
Nov 30, 2018 11:29AM egregious wrote:
It certainly is a relief to have the first one out of the way. Now I'm in the sweet spot where it's short visits and side effects haven't kicked in yet (looks around for wood, knock knock knock)
Nov 30, 2018 11:36AM Tigerlily318 wrote:
Good afternoon all nice to meet you and thanks to the "old timers" for popping in and saying high. I've been reading the Nov group to get a sense of what to expect. I'll have a radiation buddy as my first cousin is starting a week after me at the same hospital. Different diagnosis but yet we'll end up in the same place.
Is anyone getting their radiation via lying on their stomach? I told the plan would be lying on my back and doing the breathing method. But they didn't like the results so I had it redone and am doing it on my stomach I believe (will confirm on Monday when I start). I don't have to do the breathing thing, which I think is good, but I plan to ask why they don't do stomach in the first place, especially when it is on the left side.
I hope everyone has a nice weekend!