Winter rads 2014-2015

Hi Dot, I wore my regular bra for the first 4 weeks. For the last 2, I just wore a t-shirt, with a sweatshirt over it. 4 days after my last TX, I was back in my regular bra. I'm retired, so work wasn't an issue. But most employed ladies on this thread were able to continue with few issues. As we all know-everyone's experiences are different so I can only speak about my own. Others will chime in soon.

Hi dotwithkitties. Somehow I think it makes some difference whether you had a lumpectomy or mastectomy. Skin on skin is more of issue for those who had a lumpectomy especially with larger breasts. If that is the issue, a comfortable bra can help. Most sports bras wick moisture away and the band can be softer. Do what feels good for you.

Beachbum, glad to see that you are doing well! We are on the same schedule though you have 28 total and I have 30. The weekend break helped. My one small blister seems to have resolved with aloe.

Leslie, welcome! You will get through this hopefully with few side effects. We want to know how you're doing. You have found a soft place to land.

Coyote, I understand the chin thing!

Just found out my nephew's Hodgkin lymphoma has returned. Young dad with a wife and 2 beautiful little girls. Once again mixed emotions. Cancer sucks. He doesn't deserve this.

Don't stress out about the bra question. I am nearly finished and have worn an ordinary bra right through and have no painful sunburn - just a change of colour. See how it goes. My treated breast has got smaller so the bra has got looser. Others seem to have had the opposite happen.

All the very best.

Sorry all, to have been away for a couple of weeks. Thursday was number 9 of ??? treatments in the hyperbaric chamber. So far, there's no improvement in the size of my seroma, but they didn't really expect any. Because there's only a tiny drain hole, they did a breast ultrasound to determine the size. It's a 2/3 moon shape, just about the size of my nipple. There's still no infection, thankfully, so hopefully it will start to close soon. Next Thursday, they're injecting it with a mixture of my own plasma and platelets which will have been treated with a hormone to stimulate healing.

Good news for all: The terrible discoloration and peeling DOES get better after a couple of weeks! My breast is still not "normal," but it's better than I ever thought it would be.

I really wish they would do a quick breast ultrasound before signing off for radiation. They would immediately spot a seroma and could allow more time for healing.

The chamber dives take 5-6 hours out of my day, nearly every weekday. It's such a huge time drain, and could have easily been prevented...

I meet with gyno and MO on Wednesday, so I've been reading lots about Tamoxifen. I can't wait to see what assortment of SEs I draw in the Tamoxifen lottery! My plan is to have a total hysterectomy, so that I'm not always looking over my shoulder for endometrial cancer. I already have 4 other conditions that increase my risk of endometrial cancer, including fibroids, which mimic the symptoms of EC. I don't want to spend the rest of my life wondering "Is it cancer or is it just fibroids?"

Congrats to all who have finished and good wishes to all in treatment!

Hi all,

Your resident "worse case scenario" griper/moaner/complainer hasn't been here in several days but thought I would bring you all up to date.

That horrific area that just slid off my chest leaving raw meat behind is now, THREE AND A HALF WEEKS LATER, finally to the point where it is dry enough that I don't have to slather it with Silvadene and Lidocaine and keep it bandaged up all the time. It still hurts internally badly enough that I still cannot lay on my left side, and that's really old too. I would really like to get in my RO's face and give her a piece of my mind. "Like a sunburn", my ass. I think they should tell people that this sort of thing happens. Maybe not to a majority of people, but it DOES happen and I have suffered greatly because of it.

I see her on Friday and I have it planned. I have to decide if she is going to stay my doctor and she has to decide if she wants to keep me as a patient. I will not NOT NOT put up with this sort of non-information again, particularly when I specifically asked about it because I seem to be the f'ing poster child of worst-case (barring death) side effects from every cancer "treatment" I have had. SHE has to decide if she wants to keep an outspoken tell-it-like-I-see-it person as a patient. I will never be an easy patient if she's always going to follow the party line, and if she is going to do that then we just need to part ways.

Good luck to all the newbies. Chances are you will be one of the ones who does not experience the things that I did. But if you do, look me up. I'm here and I'll tell ya what I think.

JJ

Hi Ladies,

I have posted this in a few threads to raise awareness of this petition, as I think it's an important cause to all of us. But response has been slow and has basically stalled. I am wondering if many people are not seeing it, so I am now posting it in some of the active threads. I hope you don't mind me doing this. If so, I will delete it.

Some of you might be familiar with Ann Silberman's great blog "Breast cancer...but doctor I hate pink", which has chronicled her journey from diagnosis to metastasis. I know many of us share her concern that Pinktober madness does not necessarily help towards BC research for a cure. She has started a change.org petition requesting that more fundraising dollars be allocated to finding a cure rather than just raising awareness. I am posting the link here, hoping that we all can support this cause, by signing the petition and sharing on social media. Thank You !!

https://www.change.org/p/keep-a-breast-foundation-...;

jean, I am so in awe of you. I want to punch people on your behalf. And....sorry ladies. I agree with her. I do not want to bum anyone out, but do know that it is utterly possible you too will be burnt, blistered and in pain. Yes, they told me the sunburn bullshit too. See pics and make your own decision.

My own RO is overjoyed at my burnt condition. i am not. I will insert a pic under this post, and keep in mind, it was days ago. Now, it is worse. And I have 4 to go.

That being said, I just hope it works to prevent recurrence. My RO said that in 35 years, he has NEVER had a LOCAL recurrence, but there have been distant ones (stage 4). Ok then, I guess I will finish.

In summary....DO use the cool wet cloth heat removal method, and do not wait till you are purple to do it. Do not use ice packs. Get some calendula cream, use it. Walk around naked when you can, put your arm over your head as much as possible, or keep it away from your body to let heat escape.

I am fresh out of xanax, but I highly recommend it. The discomfort and mental anguish call for it, for those that can take it. I wished I had gotten more for after chemo. Hard to sleep with second degree burns.

But......I will also say that though I bitch, in the waiting room was a mag with a piece on a local philanthropist that treats late stage cancer victims and their families to a Florida vacation, fully paid and four star all the way. One lady was 39 with children. She had pancreatic cancer, deadly from the start. At least we have a shot. So.....when I look at it that way, who am I to complain? Trying to be positive. I am sure that that woman would be burnt gladly, to live.

Anyway, here is the pic.

I don't start my 30+ sessions until next week, and of course don't know how my skin/body will react. But today I had things put in perspective for me when I was at my surgical oncologist for a checkup. As I was scheduling my next appointment, a lady came to the desk to ask that her new advanced medical directive be put into her file ASAP. She was quite insistent on it being filed IMMEDIATELY. I guess she didn't think the girl at the desk understood the urgency, so she said "I need it on file RIGHT NOW how I want to die."

So, as much as I am not looking forward to the RADS and for as long as this process seems to take from diagnosis to completion of treatment, I have to tell myself, at least I'm still here and can think ahead beyond this "inconvenience". I am one of the lucky ones who had things caught early and who does not carry any of the dreaded gene mutations.

Today I am counting my blessings. I don't know who the woman was, but my prayers are going out to her and her family tonight.

Bippy. That looks very sore. Are they giving you Silvadene? Sorry for your pain.

Wow Bippy that looks very sore. I am in my second week and use the calendula cream twice a day with the 100% aloe vera gel. I will begin to use the cool wet cloth as I can feel the "heat". Thanks for the tips.

Agree JeniferE, what does good night sleep feel like. My husband bought a fit bit and it tracks your sleep patterns. It says I get about 4 hours of "good" rest a night. No wonder I am so tired. I am out of Ativan so bought some Advil PM...hum even that doesn't keep me sleep all night. Saw that you are in the East Bay too. Did you enjoy the warm weather this weekend?

Hi Annie88 ~ Welcome to the Winter Warriors rads group.  That's interesting that your RO was so emphatic about that cream preventing skin problems.  So many drs. are so ambiguous about it. 

I had one of those long drives to treatment also. It does become grueling after awhile.   It is a known fact, and should just be expected, that everywhere is a long drive in Texas.  We lived outside of Dallas for awhile, and I always had to laugh because I would ask someone how far it was to some place and they would answer in time rather than miles. Your 45 minutes comment made me smile. I tend to do that sometimes now.  I found that all the women are so very nice in Texas. 

I'll put your name on our list with a start date of  January 19th.  Let me know if I need to change it.

hi wonder woman, no offers except for calendula cream. Today it is so painful. I am going to request pain relief. Hahaha, lets see where that gets me! Calling my onc now for xanax cuz I am out from the primary. Quit taking them after chemo. Wanna bet they give me the old, you have to have an office visit line? Even though I have been there each month since July? Gee, just what I want to do, traipse down there and rack up yet another office visit fee. You know, IF they would be bothered to squeeze me in. I only have 4 left, so I cannot wait for that.

Thanks all for caring. Sometimes it helps to let it out. But please everyone know that I truly hope you come out unscathed, just pink. I feel like I was flashburned and it gets worse each day. Really do not want to finish rads. Very depressing and feel like they do not care. Wonder how they would feel of were them? Hmmmmm different I bet. Or if it were their family member---xanax and pain killers for all!

beachbum, sorry you are illing. No nausea for me from rads, but sure had it with chemo. I think I should have won a prize for it. It never, ever stopped. No meds helped, even the devils lettuce (pot) barely touched it. Fun times!

Well, just called my RO and left word for an rx. All these pillheads ruin it for people really, truly in need. Now, I feel like a criminal for asking FOR PAIN RELIEF. temporarily. From the second to third degree burns they are inflicting. I just do not know if I can finish. The RO acts like it is just a little sunburn, and told me before to use Tylenol. Yeah, tried it and if I have to poison my liver, I want something that actually works. Is it too much to ask, not to suffer?

I really feel like a buzzkill. Normally I take it in stride and try my best, but my mood is very, very dark now. I am so tired of this and all of it.

Bippy625. It sounds like you need a topical treatment at the source of the pain. People here have benefited from lidocaine and some pad. Silvadene (if you are not allergic to sulphur) and Medihoney have also soothed and healed the skin of some group members. Is there a nurse at your rad center you could talk with? In my place the nurse dealt with skin issues more than the RO.

thanks all, I did get an rx for silvadene and also, am getting a rx for narcotics tomorrow since nowadays they cant call that in, they have to hand deliver it to you. Doc was out today.....i talked to him via phone and expressed my frustrations. He is caring but I am angry with him.

I have been cold compressing and moisturizing all day. The heat coming off my body is unreal. Thanks to my sisters here, my wonderful rad techs, (who are compassionate, and gave me a lovely wet gauze pad in lieu of the bolos today), my hubster. No way can I finish without this support. And...I will finish. Only 3 to go!

Beachbum, I agree and you should have what you need. Thank you for being here and sharing.

Cassie, please do not let me scare you! I feel awful for my vents for newbies. know that my armpit area is virgin skin, therefore, really crisp. My chest is red and bearable. Also, I had lots of lymph node surgery and have learned that will aggravate in rads....so just chest maybe nowhere near as bad. I hope you all do better and have minimal effects.