Winter rads 2014-2015

meanmomto3

Wow, ladies! I am grateful and humbled by your outpouring of support. The whole eye thing was just too much, on top of everything else. It's called Stargardt, and it's the bad kind. No treatment yet, although there is a new trial in Sweden. I have a strong faith, and I just keep reminding myself that I'm never alone in this journey, no matter how I feel.

CoyoteNV: The suggestion to look at the Fall rads board was exactly what I needed. I also talked to my RO today. Apparently, it's just an extreme-looking reaction, but will not be permanent. It really looks horrible, but I can live with it for a while longer.

Bird girl, Cath57, Sandylovelucy, MagicalBean, Nomatterwhat: Thanks for sharing your experiences. BC involves SO MANY decisions and the learning curve is steep. I love my RO, but I do think she downplayed the effects of rads, just as I think my MO is downplaying the side effects of Tamoxifen.

When I start taking tamoxifen, I will experience my FIFTH "menopause." In my twenties, had three different hormone suppression therapies for endometriosis. I dealt with real menopause a couple of years ago, and now will get the experience the hot flashes, night sweats and crankiness all over again. The good news is that I feel like I know what to expect -- all too well! lol

I'm normally pretty positive, but the non-stop burning is really bugging me. They gave me 3 new creams to try today: RadiaplexRX Gel, Regenecare HA, and Medline Nutrashield. When the skin starts having open sores, they will use something called "honey patches." I have a rads clinic friend who is 6 visits ahead of me. Same RO, same breast, same treatment. She's only had minor discomfort. It's just my sensitive skin. I'm obsessive about applying the creams. I think my breast would look like raw meat, otherwise.

Thanks again to all of you for your kindness. Reading your words was uplifting. Just what I needed!

Jlynn13

LMVerna congrats on being done and I hope your skin recovers quickly. The RO said it is standard procedure for women who have mastectomies so that they can treat the skin better. I was told I will have it every other treatment and it can cause the skin to be more red but they will stop it if my skin starts to peel etc. I'm hoping I don't have any problems. I finished # 3 of 30 today.

Jlynn13

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Completed #3 of 30 today. Here's to praying the rest go quickly and have minimal skin problems.

MarieBernice6234

I was directed here by Pontiac Peggy, she said to look for LINKY

Hi All -

My lumpy area is finally starting to decrease in redness. My hair follicles are less burned or damaged as before. I have a question though. Some of the areas that have started to peel looks weird. If any of you have seen the ad on social media about the woman who is 70 years old and peels the skin off her face to look younger underneath. It really looks weird. Has anyone else had this experience? I can't quite explain it - sorry about that.

MarieBernice6234

CoyoteNV

This is our list of Winter Warriors as of January 3, 2015 - I'll do my best to keep it current. Let me know if it needs a change. 

October / November Start

MeneK – Oct 24............................. MagicalBean - Oct 28......... Mmtagirl - Nov 3

MarieBernice6234 - Nov 4  ... Hope50 - Nov 5 ..................  dennyvol - Nov 5

CAS4 - Nov 6 ........................ Beachbaby65 - Nov 4 .......... CoyoteNV - Nov 10 

Lush61 - Nov 13 ..........................  Rosa54 - Nov 13 ........................  Yikes1 - Nov 17 

Beachlady28 – Nov 17 ................ Nomatterwhat - Nov 17 ................ LMVerma  Nov 18

katieC12 – Nov 18 ............... Lorrilynne - Nov 18 ....................... Gongshow18 - Nov 20 

Birdgirl11 - Nov 23 .....................  Perfectlyimperfect39 - Nov 23 ....... Singsing1020 -

December Start

Pita119 - Dec 1 .................. SandyLovesLucy - Dec 1................ AnasNana - Dec 1

 HockeyCat - Dec 3 ................... .CanuckMom Dec 4 ........................  MeanMomto3 - Dec 4

JustJean - Dec 5 ....................... runningcello - Dec 9 ....................... carynbrit - Dec 10

eileenpg - Dec 10  ..................... ForHisGlory - Dec 10 ..................... Davida58 - Dec 10

SCMom - Dec 11.........................ILCMom - Dec 15...........................  Linzer – Dec 16

WndrWoman - Dec 16 .............. sweetbanker - Dec 16 ....................  labelle - Dec 17 

Slavrich - Dec 27........................InGodshands - Dec 18 .................... Catie57 - Dec 18

lilactulip - Dec 18?..................... PoppyK - Dec 29 ............................. kpmacmill - Dec 29 

Jlynn13 - Dec 29 ...................... gretchy - Dec 29

December Start Dates Not Known 

Minnielee - Dec ? .................... surrrrana99 - Dec ? ............................Coloradocancermom - Dec ?

January Start

reader425 - Jan 2..................... Purrrrana99 - Jan 5........................... Fionascottie - Jan 5

Bippy625 - Jan 5.......................Cath57 - Dec 29 ................................fossf - Jan 7

Nancy6540 - Jan 12

January Start Dates Not Known

Windgirl - Jan ? ....................... KGotThis - Jan ?............................... Bippy625 - Jan 5

Lulubelle1 - Jan ? ................... quiggy - Jan ?

February Start

zjrosenthal - Feb 9

No Start Date Yet

Shuf - ? ....................................bjeaneg - ?  .......................................Shayne36 - ?

Sjacobs146 - ? .........................Beachbum1023 - ? ...........................gemmafromlondon - ?

knittingPT - ?

 = Hooray Finished!

WndrWoman

I have thought sometimes that the doctors downplay SEs so they don't cause self-fulfilling prophecies (power of suggestion). But I certainly want to know what I can do to avoid problems.

PoppyK

Meanmom, I thought it was odd that the BSs I consulted all asked me what I wanted to do: Mx or Lx. I found this odd because they were the ones who had all the medical training... and had seen so many cases. I read that the patients who are the happiest, when all is said and done, are the patients who had a choice. I chose Lx because the cancer was considered small and early stage. As directed by my BS, I met with the RO and PS prior to my surgery. I thought I knew what to expect, but ended up in chemo land. I feel well prepared by my RO, but am not liking rads....after only 3 days.

JustJean

Hi all. I've been MIA for at least a couple of weeks now. I thought maybe if I gave myself a break from BCO that my anxiety levels would go down and these rads would become easier. But they are not, and it has not helped to stay off BCO. I am thankful that so many of you seemed to breeze right through them but I am not.

I did 17/30 today. I get either a full-chest or a surgery-area bolus every day, and an xray every 5 rads. My RO looked at my chest the other day and said it's not damaged ("pink") enough and she put in an order to increase the rads and keep the bolus' going. Gee, thanks.

Every day I go in that place and I have to shut down mentally to do it, to even enter the building. Head down, eyes on the floor, wait for the elevator, go down, hang up coat, go put on robe and stand at my appointed place, get annoyed with techs leaving me exposed when not necessary, my feet dance on the table with anxiety and it's the only thing that keeps me from running screaming out of the room. As soon as I hear that table move after it's done, I have my arms down, hold up whatever bolus I have on to hand to the tech (don't trust them to remove it after one of them accidentally slid not only the bolus but my pillowcase and robe with it and didn't seem concerned that I was laying there exposed), grab my stuff and practically run out of the room. I don't (CAN'T) speak to anyone. I change my clothes and keep pounding the up button on the slowest elevator on the planet. Finally get to the first floor and I'm moving as fast as I can (as pathetic as it is, it's still as fast as I can) to get myself out of that building as soon as possible. Then either shouting or tears (or both) in the car on the way to work and I'm really not a civilized person again for hours.

My RO does not believe any of my side effects are from rads. Gee, what a shock. I've only 59+ years without any of these issues and now all of a sudden I have them but it's NOT related to rads? So now I just shut up and say I'm fine. It's better that way, I think, because otherwise I'll probably go off on my RO and that would not be a good thing.

Chemo was harder physically but this is much much harder for me mentally.

Fucking cancer.

JJ

PoppyK

JustJean,

I'm so sorry things are so hard for you. The mental side of this cancer crap is just as hard as the physical stuff. I'm glad you can come here to share and vent... what ever you need to do.

meanmomto3

JustJean: I'm so glad to see you posting again. You've really been on my mind this week. I think you have a really crappy rads center. I know you said that it's the only option, but it sounds like a soulless place. My skin problems have been frustrating, but the care I've been given has been exceptionally good. They're a compassionate, caring group of people. It's so sad to learn that you and others have received so little real "care." Screw 'em. I'll pm you my email address and send you some love and encouragement before every treatment! I can't do cookies, so don't get too excited..

Pita119

PoppyK,

After explaining my options to me, seeing the PS, and getting the genetic testing done, my BS told me she would do whatever I wanted her to do. She said that if I was going to panic every time I had my mammos/other needed testing, then she recommended the mastectomies. But If I was ok with the follow up needed, then lumpectomy with radiation was what she would recommend. Since my BC was small, stage 1, no lymph node involvement, neg. BRCA1 & BRCA2, I was ok with doing the lumpectomy. Also, having to deal with this with both my mother & maternal grandmother & working in the medical field, I am comfortable with the process but struggled with the waiting of results. I did a lot of research & asked a lot of questions and think that really helped me. I know that I will be always looking over my shoulder with this & my BS said she still puts me in about the 15-18% recurrence range but I have seen the progress made over the years with testing & treatment options & will always be in charge of my health & on top of it. Wishing all my rad friends a very HAPPY, SAFE & HEALTHY 2015!!!

JustJean

Meanmom (sheesh, you are so NOT mean), thanks for the thoughts but I honestly think this is a good place if you have to have rads. Unless you are me, lol. I don't think the most caring place in the world would be any different for me. The techs continue to be pleasant to me even though I cannot speak to them, I tell them to not touch me unless they have to, and remind them at every turn about keeping me covered. They have gone out of their way to provide me a separate place to dress so I don't have to look at that insulting-to-me wall of bras. They are always asking if I need a warmed blanket. They keep that dressing place stocked with the "nice" gowns and not the old ratty ones. My RO is genuinely puzzled, I think, about my reaction when she has gone out of her way to make sure that all of that happened. I wish I could go in there and joke around with the techs and ask them about their Christmas and all that stuff but I can't even speak to say hello/goodbye. It's ME that's the problem in this particular situation, not them. I'm planning on trying to write a nice letter of apology to hand out to them all on my last day, because this has not been my best face that they've seen.

And I think the reason behind all this is that it's Every. Single. Day. EVERY weekday I am reminded of my mutilation (I don't look at it unless I have to). EVERY weekday I am reminded that I'm most likely Stage IV and that these rads are therefore a little like closing the barn door after the horse got out. EVERY day I am stressed to the max, and EVERY day I shut down. I don't feel at all that the time is going quickly, like some of us (lucky y'all!), I feel like this is never ever going to end. January 20th (last day) seems very far away even now at just over the half way point. And it seems like I've been going for a mini lifetime. I have lots of coping skills but this situation is beyond what I can do, so I just decided that if I have to shut down and plow through it, well, that's what I'll do. My coworkers know to leave me be until I've had enough time to de-stress and can address them in my usual friendly way. Those poor techs have no idea that this friendly person even exists. Too bad because I know they would like her.

And I think the cookies stand. Come on, hand 'em over.

JJ

CoyoteNV

Just a quick note to wish one and all a good New Year.  I'll see you in 2015.

Sjacobs146

Happy New Year everyone! Wishing you all better health in 2015.

On to the next stage of treatment. My planning appointment for rads is set for January 16. I'm so glad that this will all be over before Spring arrives. Hopefully there won't be too many snow storms to delay my treatment.

Beachlady28

To Pita119 my fellow New Jersy sister and all others: got 2 more boosts to go then done on 1/5/15. Had several meltdowns during rads (but only with my dear husband who has been a saint thru this ordeal). Otherwise put on a stoic face, get there, change into those drab blue robes, wait in the waiting room where no one talks or wants to talk to anyone, they call me in, get on the table, get rads, then up, changed, slather on creme then corn starch on top of cremes so it does not stick, and zip out of there fast as possible. Even beat hubby to the door and he has bad knees LOL! Docs and techs have been very nice and answered all my many questions. So the tumor was cut out, now we nuked the area and starving it with estrogen blocker meds for the next 5 years. That shudder keep the evil beast away for good, God willing. So 4 anyone just starting rads: YOU CAN DO IT!!! Find ways to handle the stress, read these threads for ideas...scared feet get you there same as brave feet...Happy and HEALTHY New Year to all !!!

WndrWoman

JustJean Please put up a note in your private dressing area saying, "I am not alone. The women of Winter Rads are with me. Inside that chest is my beautiful warm and caring heart." This is a time to take care of yourself in whatever way works.

CoyoteNV

I just - after reading WndrWoman's post - came to the realization of the extent that I will never be alone in this fight.  We really are a team.  "We", as individuals may become involved with other activities after we complete these treatments, but "We", as a team with a similar spirit, will be there for each other.  When we need support, it will be there.  I can find you and you can find me.  It really is the true heart of sisterhood.  I'm not expressing this as profoundly as I feel it, but, who could have imagined that something so special could come from something so terrible.

Thank you one and all for being here.  Thank you WnderWoman for putting the words together that awakened my awareness. Thank you BC.O for providing the place for it to happen.

eileenpg

HAPPY NEW YEAR!!!!!!

My radiation has been put on hold for 1 week. My right arm became very swollen after 7 rounds. My whole lower body is very swollen from taxotere. Gained 12 lbs and barely ate during chemo.  Went for CT of chest and dopler/ultrasound on Wednesday. All negative for blood clot or something worse. My RO thinks my lymph system has been compromised and I am now third spacing into my arm.  Everything I have read says it will resolve on it own within 3 months. My MO says the same thing. lasix did nothing.  I hate that I had to stop radiation. I want to be DONE with THIS!!!

So good luck to all who are now ahead of me. I will make it to the finish line. Just very SLOWLY!!!

Cath57

Thank You WndrWoman & CoyoteNV for words of encouragement, & Beachlady28, I thought I was a wimp when I cried on the Sim appt .... I know I'm not the ony one that has meltdowns . eileenpg , how frustrating for you, but you're getting closer! Blessings to you all in 2015!

PoppyK

I, too, am bloated and puffy as a result of all this cancer stuff. Every time I step on a scale, the nurses tell me weight gain is much better than weight loss during this process. I'm still not happy about it.

I've only been in my rads waiting area 3 days. I see many of the same faces. Yesterday, one of the faces was a 12 year old boy. He shared that he was getting his rads, then off to chemo. Well, then we all started taking to each other... even after the boy left the waiting area. I think I will be talking to these people every day now. It only takes one person to break the ice. We didn't talk about cancer, we talked Christmas, our kids... stuff like that. I did show people how to select and tie scarves... so I guess that is cancer related... but more on how to feel better about ourselves. I think it will help makes the treatments go by faster... and alleviate some of the stress and anxiety of rads.

Beachlady28

PoppyK: I will be done after 2 more boosts!!!! Here are some rad tips I found on this thread and were helpful: bring whatever cream you are using and some corn starch to the treatment. Right after rads lay out the dressing gown on a chair in the changing room or on top of the sink in the bathroom. Slather on the cream then dust the area with the corn starch - use a clean powder puff or a clean make-up brush. The corn starch will be really messy which is why you need to lean over the gown to apply it. Then just roll up the mess and put the gown in the used bin. This way your clothes won't stick to the cream. Here are the ointments I use in order of favorite to yucky : Calendula Creme, Vitamin E oil, Aloe gel with no alchohol, Aquafor - it's like Vaseline - yucky but sticks on well. Then dust on the corn starch over whatever you choose. Also, I gave up wearing a bra about halfway thru, but you can also wear the softest chemise you can find - wear it inside out so the seams don't touch your skin then wear a stretchy bra over the chemise, one with no snaps or anything. Hope these tips help!!!!!

meanmomto3

Sjacobs 146, PoppyK and others who are (or will be) dealing with rads skin issues,

I've had the hardest time finding soft, seamless all cotton camisole/tanks. Winter selection has plenty of fabrics designed to hold in heat. That's the last thing we all need. HOWEVER, I recently found super-soft, long 100% cotton tanks on sale at The Gap. They were $4.97 each and I got white, navy and black. They have S-XL in-store. They run large, btw. I would think the XL would easily work for anyone who is XXL or very large-breasted.

I love them!

They may be available online, as well.

Hope this helps someone.

MarieBernice6234

Hi JustJean -

I am glad you came back to the boards. I know exactly what you mean about the Radiation oncologists not liking to discuss the side effects of radiation. They don't even like to admit that there even are side effects. Mine didn't think I was having them either, but mine were a physical nature not an emotional one. If they admit to one patient, then they have to admit that to all their patients. There are more patients that have side effects then these doctors are aware of. I overheard many conversations in the treatment waiting room.I finished radiation 14 days ago tomorrow. It feels great to have that behind me.

Now I waiting for the next phase the hormonal treatment or "oral" chemotherapy to start. They are going to put me on Tamoxifen. I am afraid of the Tamoxifen, but unfortunately, I wasn't through menopause yet. I am still coming off the Zoloft that I was taking for my depression. I have come down from 200mgs to 50 as of most recently. My Effexor has been increased up to 100mgs. Tamoxifen and Zoloft don't mix at all otherwise I wouldn't need to change

MarieBernice6234

MarieBernice6234

Hi PoppyK -

I know what you mean about the conversation while in the treatment waiting room. I had the most conversation with the group that was already mid-stream in their rad treatment. One by one they all finished up ahead of me and there was as much as conversation with some of the other ones.

MarieBernice6234

Beachlady28

To meanmomto3: I got my super soft sleeveless chemises at Macy's in the lingerie dept. A bit pricey but worth the comfort. You can even sleep in them. Hope this is a helpful tip for you and all others.

Beachlady28

Question for all: I finish rads on 1/5/15. So what happens next? Am already taking Arimidex and did not need chemo. Recheck with the Onc. Doc is next week so I will ask her, but just want to know if anyone is on the post-rad journey? One thing I cannot do right now is a mammog...just the thot is too much as I am so very sore from the rads I guess...any thots?
Thank!

Cath57

thank you Beachlady28 for the tips... You finish up when I start! Hmmmmmm, about the SE for rads... I think that I mentioned my meeting with my RO about the many unanswered questions that I had. All of my questions involved SE. She proceeded to answer all my questions & said " you'll do fine" .... We'll see . After reading so much info on rad SE , it doesn't seem so "fine".

Nomatterwhat

You ladies that are just starting will do fine.  I start my boosts on Monday. My RO gave me the option of taking the holidays off and heal for a couple of days or continue on.  I took the time off and have healed nicely.  Now instead of finishing up Monday, I will finish up next Friday.  I still itch in places, but the heat has gone and the red has started to fade. My next stop - Tamoxifin.  I have one more "clean up" surgery and then I might get back to normal.  What is normal now? 

WndrWoman

Congrats, MarieBernice, on finishing.

Thanks to Beachlady28 and Meanmom for tips.

Tomorrow is #11 and I have some little red bumps so far.

Cath57

Nomatterwhat, what is " clean up " surgery?