Winter rads 2014-2015

Pita119

Hi Lorrilynne,

I still get shooting pain sometimes & my BS told me that it was normal & could go on for up to a year. I think it's been a little better the past 2 weeks so I'm hoping I'm on the upswing with this.

CoyoteNV

Hi Lorrilynne - This whole thing adds a lot of stress to life.  It changes things.  It sounds as if you had a busy full life before all this started.  Now you have added a hugely emotional and physically demanding element.  If it were happening to a dear friend, you would be understanding and supportive because of what she is going through.  Sometimes we expect things of ourselves that we would never expect of someone else in the same situation.  Anyone around whom you can take off the "game face" mask?   That can make a gal tired too!  If not, let it go right here.  We'll listen....and understand.  Personally, I find an occasional whine quite therapeutic.

Welcome to the Winter Rads group.  I'm sorry you have to be here, but you can be confident that you are definitely not alone.

CoyoteNV

This is our list of Winter Warriors as of December 5th - I'll do my best to keep it current. Let me know if it needs a change.

ILCMom - December 15...................................... HockeyCat - December

Minnielee - December..........................................SandyLovesLucy - December 1

Nomatterwhat - November 17............................. Hope50 - November 5

Linzer – December 16 ........................................ Mmtagirl - November 3

CoyoteNV - November 10 ...................................Shuf - unknown

surrrrana99 - December ......................................MarisaG - December

Beachbaby65 - November 11 ............................. Perfectlyimperfect39 - November 23

Pita119 - December 1 ......................................... Coloradocancermom - December

CAS4 - November 6 ............................................. InGodshands - unknown

MagicalBean - October 28 ish ..............................LMVerma November 18

Yikes1 - November 17.......................................... katieC12 – November 18

MeneK – October 24............................................ Beachlady28 – November 17

Gongshow18 - November 20 ............................... eileenpg - December 10

JustJean - December 5 ........................................ Lush61 - November 13

Purrrrana99 - January 5....................................... Bippy625 - December 29

bjeaneg - ? ........................................................... Windgirl - January ?

Birdgirl11 - November 23 ...................................... Rosa54 - November 13

dennyvol - November 5 ........................................ PoppyK - December ?

Lorrilynne - November 18 ...................................... labelle - December

fossf - December ................................................... CanuckMom December 4

MagicalBean

Wow Coyote, we have grown. Thanks for keeping us updated.

Lorrilynne, Welcome to Winter Rads. I start #24 on Monday and I can't say there has been any pain. I do get "zingers" for lack of a better term. Kind of a sharp twinge, electrical shock thing, that lasts a second or two then stops. I found drinking a lot of water seems to temper them a bit.

It's cold and damp here today. Good afternoon for watching Rosemary and Thyme.

Beachlady28

To Magicalbean: Regarding deodorant: I was grossed out after surgery about tolerating no DO for 6 weeks. Now my Radiation Doc says Toms of Maine is ok to use since it has no aluminum. There is a sign in the waiting room before getting rads to not use any creams, oils, DO or anything on the breast up to 4 hours b4 radiation. Be sure to ask your Doc tho if it is ok.

MagicalBean

Thanks Beachlady. I should try that. I have been so happy to see Fridays come 'cause I slap on my Suave in the car after the last rad of the week. With luck I'll only have 2 more weeks of this adventure. Onward and all that.

mmtagirl

I am finding it fascinating that after the first week or so I am not noticing any difference not using DO. I dust a bit of cornstarch on the rads side and call it good. Really starting to wonder about how important deodorant purchased really is!

Bippy625

hi coyote! My start date is 12/29 right now for winter rads. May change if i a, too sore from bmx, but for now it is the start date.

As to BO, i find it ironic that before BC dx, my pits sweated and stunk , no matter how much or which type of dedorant i tried. After tx, i switched to non aluminum, and within a few weeks i quit sweating so much, but when i did, no odor. Maybe it is chemo? I am sure the rad techs smell all kinda bo

Lorrilynne

Hi KatieC12-

Thanks for your reply! It will be interesting to follow along with you as we progress through our treatments.

I had the normal pains and numbness after surgery ( which was in September ) and that lasted about a week or two. But it seems these pains started after radiation started and are getting worse! I'm thinking my fatigue I'm having now is from menopause and perhaps my fibromyalgia acting up? This getting older is for the birds! Just turned 49 and I can't imagine what my 50's will bring! LOL

Treatment #8 is tomorrow and then just 25 more!

Pita119

Wish me luck ladies...start 1st rad tomorrow. Here's hoping that I don't have any issues with it!!!

CoyoteNV

Pita - Definitely wish you a good and easy trip through radiation.  Tomorrow will be #14 for me and thus far the most difficult part has been the long drive to get to the treatment. The RO said that skin irritation doesn't show up until a couple weeks into the program.  It looks like you will have some company tomorrow. SandylovesLucy and eileenpg are on the schedule too.  Best of fortune to all of you.

 

 

JustJean

Good luck to all who are starting soon. I go in for my sim on Friday and start next Monday. I can't make myself think about it too much or the terror starts bubbling up. My MO won't write me a script for Ativan because of the sleep meds I take and says I have to go to my Neurologist to get those. Huh? I don't have an appt with him until March and trying to get that message through his office people is going to be next to impossible. Guess I'll just deal with the panic under the surface!

I saw my MO on Friday. The lesions found on the PET Scan were the subject of the day - she had me go get some x-rays and if they don't tell us some things then a biopsy is next. Not what I wanted to hear. And, of course, having to wait all weekend (and probably not hearing from her until late tomorrow) for news about the x-rays has not been fun.

I've been doing this fight for 9 years now. I'm tired. I'm actually thinking about doing as my PCP has wanted me to do for years which is to attempt to go out on disability. It's very scary tho, because I would have to quit my job and live on nothing for months until they made a decision. There is no other income other than mine. My MO says she can word it so that it's very convincing but I'm a skeptic and just don't know whether to believe this or not. Sure would be nice to work one job instead of two. (Well, two instead of three if you count the house/son/pets, lol!)

I never thought I would be one of those people but I think I'm getting there.

yikes1

Hi JustJean,

I feel so behind in writing on this forum, but read your post and felt I should respond now. It certainly sounds like you have been going through a lot. At first I was not sure what you were saying regarding the Ativan and the sleep meds, but upon re-reading I realized you are trying to take the Ativan at night - I think.

I have found that sometimes in order to "discuss" those types of situations it helps to write a letter explaining what I want. You could try letting the neurologist know about your current ongoing medical concerns, and request a prescription for Ativan if it can be used with your sleep meds.

9 years is a long time to deal with all of this. I feel for you.

eileenpg

Justjean: My MO gave me a prescription for Ativan no questions asked. He know I was anxious and wanted to do anything he could to relieve it. Tell your MO you will stop your sleeping meds and just take the Ativan. You are sleeping poorly. Are you on anti anti depression meds? Maybe that was why.

I start radiation on Dec10th not tomorrow. Last chemo tomorrow. Boy,that would be a busy day. Chemo than radiation. I go to simulation on Thursday. I DO not care how bad I feel from chemo I am dragging myself to simluation. It is only 5 minute drive from my house.

As for DO.Nobody mentioned that to me after my lumpectomy. I use Toms anyway. Yeap wanted to stay healthy. No aluminum. Did not want to get Alzheimers. No red meat. Exercised for 35 years 5 days a week.No soda,no smoking. Super healthy. Did not want to get cancer. HAHA Yeah right.!! That did not work. I will stay with same life style as this is my norm. DOES not prevent cancer.

Nomatterwhat

Lorrilynne -- I started a day before you on the 17th.  I have #9 tomorrow and it hasn't been to bad.  My only problem has been that my doctor thinks my nerves from the BMX are starting to rejuvenate and causing "lightning strikes" after radiation heats up the right area. 

PIta119 -- Things will be fine, just remember to use your Aloe Vera after treatments and wear an old shirt to protect your bra and clothes.

 

JustJean

Thanks, all. The problem is that I have a long-time (20 years?) diagnosed sleep disorder and take meds at night to go to sleep. I have no trouble sleeping with the meds. I have trouble during the day any time I think about what is going on - the panic is always right under the surface, as are the tears and frustrations and all the things that you all know about. So the MO says that she can't write for anything because of that med and that I should take part of my sleep meds during the day (like about 1/4 of what I use at night) to get through this. But if I did that I would run out of meds for the sleep disorder! So she says that I would have to get my Neurologist to write the script for the increased amount. Huh? Why can't she just write me a few extra pills so I can get through the next few weeks? Very frustrating. I see her point, but, sheesh...

eileenpg

Justjean Lorazepam is for anxiety. She can give you a script for low dose of .5 mg every 4 to 6 hours as needed for anxiety. Really come on. Call your primary MD or GYN.

Birdgirl11

Justjean -sure hope you can get something to help you. Dealing with all of this is so stressful. I can't imagine fighting for 9 years, but please know you are an inspiration and I pray for strength for you. The docs need to understand what it is like and I hope they will give you something to help you through

mmtagirl

#20 is in the bag! Ok, it is not all rosy at this stage. Well the breast area is. Lol! I have quite a rash going on that is itchy even with the hydrocortisone cream. My RO told me today that I needed to put my lotion all the way up my shoulder to the back side of my shoulder/neck. I was stopping just above my clavicle. Who knew? He also said to expect some peeling by next week under my breast and if it starts sooner to let the nurses know so he can examine me. I am quite red there. My breast area looks like I have the measles with a gazillion red dots and sunburn like areas.

I also find myself quite fatigued in the afternoon. Exercise helps but I was told today NO SWEATING. It will exacerbate the rash and itching and peeling. I guess it is walking for the rest of December!

Beachbaby65

I just finished number 18 and I have quite a burn starting under my breast. It is starting to open too. No more bras as much as possible which is difficult for a very well endowed girl like me! The techs said this is where you get burned first because of the crease and to expect it to get worse. Yay! I see the RO tomorrow. I have my SIM for my boosts even though they're over ten days away. We will discuss strategies for the burn then , for now lots of calendula and 100% aloe I guess. The fatigue is the same I'm just tired of the long drive. Had a great thanksgiving with my man and my oldest daughter. I miss my youngest but she comes home on the 8th of January from her semester in Germany. I can't wait! The end of this is near and its a good thing as I'm having more episodes of poor me! I hope everyone had a great weekend! I don't know what I'd do without all of you! It's the one place I don't have to put on a good face.

labelle

Meeting w the RO on the 10th. Still back and forth about if I want to go ahead with rads or not, but I can't find the stats that will allow me to get out of it. We'll see what I think of the RO on the 10th. I did after all end up interviewing 3 surgeons before I found the one I wanted. LOL

PoppyK

I still don't have a start date.... but I finally have an appointment for my planning CT scan- Dec. 4.

I enjoy reading everyone's helpful comments, but wonder whether my chemo brain will remember anything.

CoyoteNV

Saw my RO today after treatment. He called it Hump Day - half way through. I have light irritation under my arm and around my collarbone. I'm hoping and wishing that it stays as is.

I've been a bit down and probably could be called "negative" lately. A friend's step mother who has been dealing with chemo for breast cancer, had a fall because she was dizzy. She went to the emergency room, spent two days in the hospital, and was diagnosed with a brain tumor and sent home to hospice care. That was it. Boom. Done. I don't know her, but I feel every bit of the agony and sorrow.

There but for the Grace of God go I.

mmtagirl

So sorry, Coyote. Thinking of you

CoyoteNV

Thanks mmtagirl. I feel so bad for my friend's family and then internalize it too. The latest thoughts are that brain tumor cells were already there when they discovered the BC. I don't know the particulars of her BC, and my friend can't seem to get the facts from his dad, who has been pretty confused about the whole thing. I've tried to help them understand how to take her nausea meds - through my friend - but they just couldn't get their mind around it. It's hard when she is several states away, and translating info via a step son and her husband. They could never understand her doctor.

Thanks for listening.

eileenpg - I hear you. You did it all right, and surprise!

SandyLovesLucy

Coyote, I'm so sorry to hear about your friend's step mother. Such a shock for them all and for you, too. I'm glad you are half way through and doing well.

Eileen, you are moving right along. I hope for minimal side effects for you and then an easy road through Rads!

Labelle, good luck with your decision!

Justjean, keeping you in my thoughts and prayers.

I got the okay and started radiation yesterday.  I still have a seroma in my breast which is pretty sore but my BS and RO seemed to think I'll be okay getting radiation.  I never got direction about stopping DO after lumpectomy either.  AND, they told me I could continue using it during radiation.  Anyone else who didn't get told to stop using it when starting rads? The skin care instructions have been pretty minimal so far - to switch to using Dove sensitive skin soap for showers, start using the Natural Care aloe vera lotion they gave me in a few days, and apply cornstarch under the breast to keep the area dry. I'm happy with my RO, the nurses have been wonderful, and all of the techs are female.  They have all made things very comfortable so far so I consider myself lucky. Once I got in position on the table yesterday and the techs left the room and told me not to move I started to tear up thinking about what was happening. Then I just hoped the couple of tears that fell down both sides of my face would dry before the techs came back! Of course rads did not come as a big surprise but it just got so real when I was on that table. One down and 29 more to go.  And just like during chemo, I am counting down again.

Hugs to all.  Thinking of all of you and hoping side effects improve for those who are struggling with severe skin issues.

Sandy

CoyoteNV

Sandy - What you wrote really brought the core of my emotional turmoil to a point. Sometimes something happens that makes it all real. Gotta go. Getting port flushed.

LMVerna

Hi Sandy, I also got a little teary my first couple of times. I finished #10 today and that aspect of it has gotten easier.

I think we all have our "poor me" moments. I don't think it would be normal if we never did. As long as they go away and we have our more "normal" days it is fine. Of course, my "normal' days now are not what they used to be. Hopefully when treatments are done, hair grows back and reconstruction is done, I will again have my new normal!

I have been doing pretty good. My skin is starting to get a little pink. It is very tender under my "breastlet" (what I call my mastectomy with tissue expander that is much smaller than my other breast). I am also tender under my arm and it is starting to hurt when I raise my arm which was not a problem before surgery. I saw my RO today and she is happy with how things look. I am also having joint/bone pain. Don't know if that is leftover from chemo or if it could be related to radiation. On a positive note, I have had a little more energy lately. I think chemo is washing out of my system and fatigue hasn't hit from the radiation. It was perfect timing so I could enjoy my two college kids who were home last week. Lets see how long the energy lasts!

Pita119

Sandy,

What you shared today is exactly what happened to me this morning. This was my second rad treatment. I've dealt with all of this ok, I think because I had been through it years ago with my mom and kind of knew what the protocol was and have really been proactive in keeping up with all the new things that are being published about BC. But like you said, laying on that table today and watching the machine circle around me administering the radiation to kill the left over cancer cells just kind of got to me. And the fact that they had screwed up the schedule...my appt was supposed to be 9:10 and when I was still waiting 1 hr. after my appt time & watching other women who came in way after me go back...I asked why I was still waiting, the girl told me my appt was 10:30. I didn't have the print out of my appt times with me but I was quite annoyed since I knew my appt. was 9:10. Good thing they don't take blood pressure @ these appts. So here's hoping that tomorrow will be a better day

MagicalBean

I had my weekly meeting with my RO today. Things are going well, although the skin irritation is becoming bothersome,especially under my arm, and I think the sleepies are finally hitting me. I have 3 more regular treatments, then 5 boosts. I should be done with this nonsense next Friday.

Coyote: I'm sorry about your friends step-mom.

Hugs to all.