Starting Rads in January 2017

Caligirl55

Hope1201...welcome to the group! Your right we are waiting for it to be just a memory ladies.

SuMarie...sounds like a great MD ... It brought tears ...but what doesn't these days

warrior....well that's just crap ...you do all you can to avoid this group & here you are..so sorry! Hugs! Thx for sharing!

JShannon

Hello everyone,

I have only had 2 treatments, 3rd one later today, but my nipple feels like it has a knife stuck in it and I am extremely tired today. Has anyone else had issues this early on or am I imagining things? So ready for this to be OVER!!!

Thanks for sharing this journey.

RitaR551

So today's rad experience (12 of 33). Overall I'd have to say the nurses, techs, doctors have been very thoughtful and considerate. Today was a unique experience....or maybe I'm running on empty. Whatever.

The procedure ended and the techs came back into the room plus a new gal. The new gal completely ignored me. Gee. I'm only a patient, therefore I don't exist. I'm just there with my boobs in the breeze. THEN she begins to rattle on about a dinosaur bone exhibit she went to. Quote, "The jaw and leg bones were broken. I knew before the tour guide said it. It was because the dinosaur had CANCER! It was sooooo neat." She went on and on.

I could tell the two regular techs just wanted her to shut up. One of them walked me out, which they hadn't been doing lately. I know there are many, many people who have no clue what it means to a person to be told they have cancer, then walk through the tests, surgeries, and treatments, only to live the rest of their lives with the nagging concern of recurrence. But, also.....I suppose it bothered me a bit more because my Dad had multiple myeloma and, yes, his bones did fracture. Ah well. I keep telling myself I can give grace to those who haven't had this experience.

SuprSurvivr

Hi, All! First post but a lurker for a few months now. I had my CT scan and tattoo apt 1-18, and am now waiting to hear back on scheduling of my 33 apts. I should be starting near the end of the month. After rads, I'm signing up for a chemo study that will group me with either cisplatin or Xeloda. Anyone here have experience with those? I'm just trying to get that chance of recurrence down as much as possible, especially since my neoadjuvant chemo only took my tumor from 3.8 to 1.0 cm. Thanks for letting me join your group! I really amazed at both our differences and our similarities. I don't know about you but I just want to get this all over with!

Orangey

Hi Everyone.

It's been a while. I came down with pretty bad allergies and coughing and have not been up to writing. I have a hard time typing long messages on my cell and don't usually get to turn on my home laptop. It doesn't really hold a charge so it's a fixed spot laptop.

I've had 10/16 radiations so far!! Yippee. I can't wait for this to be over. As some of you mention, just pulling up to the facility every day starts to become tiring. I cannot imagine having to do 35. I give you ladies a lot of credit.

JShannon - I had that stabbing feeling after the second treatment. More when I was sleeping than when I was standing or sitting. Then I hit the weekend and by Monday I was fine.

Since I am at 10 now, only 6 more to go, woo hoo, my breast is feeling very warm, heavier and looks red. Very red. Someone mention their breast or nipple being about a third larger than the other side. My nipple is about a third larger. Yesterday morning I actually measured it.

I'm not too tired but this may have possibly been masked with my horrible allergies, nasal, coughing situation. I have been working all along but I also have not had any Chemo or a mastectomy and only had 3 nodes taken out. So I think I started off in better shape than some of you which may account for this. We are all different.

I hope to not get too tired (I can hope) because I need to have a life and make plans. Whenever someone says that something is going on towards the end of the month or in February. I have to say, just pencil me in, don't count on me yet, not sure if I will be tired or not. That's going to get old. Uhm, well, I do hope it gets very old and live to tell all about it. Where's the fast forward button?

Oh, question. I noticed that some of you are putting cream in your arm pit. I am assuming this does not apply if you have the radiation face down? Would love to hear about what you've encountered. Sometimes it's hard to tell which type of radiation everyone is receiving. Mine is the Canada Protocol aka Hypofractionization. I have had no issues with my armpit as of yet. I did have it after the nodes were taken out but at some point in the last 2-3 weeks,the tingling has settled.

All my best wishes to everyone. This is an awful thing to go through but we can do it. And, if you want to rant, that's fine with me. I've been reading all the posts and wish I could reach out and hug you all. We can do this. Stay Positive.

Pammac47

cali girl

I take naps go to bed early and still oversleep. My pink has gone to brown hue. Got nails done got zilch for feeling on left foot it might have been someone else foot- like a piece of dead meat, have minimal on right but better. Going in for MRI Saturday!! I'm over all the pain but wish it was over me

Rita-

As for your RO I sometimes think they are off their game as well. I told mine had pain under boob(right under) she said that's not from radiation. Well that's funny cause it's also brown hue, hurts and everything I've read says that's why. So I too leave shaking my head. Your no alone sometimes they could empathize more. I am tired by noon and drag til my new 830-9 bedtime, but alas I must wash my wig tonight

Caligirl55

SuprSu.....Welcome. ... I did chemo and now radiation 33 of them ...but no more chemo after ...I hope. I see we are both triple negative. I can't wait to have this all over too!

Orangey....understand we all want to have a life but chemo most certainly changed that when it took over for me.

Rita...sorry you had to deal with that thoughtless tech...I keep saying you can't fix stupid

ArtyMom

I have three weeks of treatment left and I'm pretty sure I won't wear a bra for the rest of that time and probably more. If you need to borrow a bra, it's in my purse. Every shirt seems to irritate my skin somewhere. Need to find something that is comfortable that is suitable for work. Any idea So

ElizabethAM

I wear soft cotton t-shirt

Lorri70

I'm really struggling with this I can't believe it's so difficult I'm emotionally drained, my legs feel like lead I can't stop crying I had argument with my husband cause he's working long hours and I can't do everything here we've 2 young children I've only got 8 to go I can't wait to finish is anyone else emotional good thing is at moment my breast isn't sore it's holding up well

RitaR551

Good Morning Lorri70

Of course you are worn out with low emotional reserves. Your body has been through a lot and now rads. I see you started rads a day before I did.

Time to bring in some help. Men seem to respond to stress by throwing themselves into their work. Do you have family nearby? Can the children visit grandparents over the weekend? Friends who can help? It's ok to ask others for help

Lorri70

I am wearing a sports bra if I'm going out and no bra in the house nice cotton pyjamas top or tee shirt snd hope I get no visitors lol.

Lorri70

yes Rita my parents and sister live next door they are great they take the kids after school give them dinner, I have a grown up son also lives 20 miles away, they are all going to a family dinner tomorrow 1.5 hour drive I've opted out (husband wasn't too happy his family) I'm going to lunch in my parents then staying on sofa hope I'll feel better by Monday then it starts again I'm glad I've only 20 to do how many are you doin

danix5

I have a question, I have been re Disgnosedwith new cancer invasive lobular and ductal after bi lateral mastectomy and total hysterectomy 2008.

My surgery is the 25th. How long after surgery to start RADS? So far they say I must do RADS 6 weeks, is that everyday or do you get off weekends?

I have to do hormone therapy and herceptin because I am HER2 positive. Does all that start at the same time?

I of course as we all do want this over ASAP just not sure how this will all line up.

Onco appt Feb 2nd! So far ER+ PR - ( they are running that again not 100%) HER2

Thank you for any help

RitaR551

Lorri70- I will have a total of 33. Just finished number 13. Glad you have family nearby!

Danix- I had six weeks recovery from surgery before starting rads. Monday thru Friday. The weekends off are nice. I am suppose to start hormone suppression after rads, but on the fence about that

danix5

Thank you for your reply. Was that wide excession surgery? Since I have no breast tissue from mastectomy I wonder if I could go faster, since my surgery will be less invasive. I should say I still have a little tissue sadly that's where new cancer grew. They are checking a second suspicious area, but so far just one cancer for no

ElizabethAM

danix5 -- Those are really questions to ask your MO and RO, because every place is different. I'm in Canada and had my surgery in June. I started chemo in August (in Canada it is required to have chemo if you are to take Herceptin). My chemo was a dose dense AC+T, which was 4 treatments of Adriamycin and Cyclophosphamide (Procytox) and then 4 treatments of Taxol which were given every 2 weeks. My Herceptin was added when I had my second Taxol treatment and that medication I will get every 3 weeks for a year. I started my Hormone therapy 30 days after I my chemo was finished. Rads started on Jan. 3, which was about 4 weeks after chemo. I have 16 treatments every week day for 3 and 1/2 weeks. I now have 3 treatments left to do. So I will be finished with Rads this coming Wednesday.

I hope that helps a bit.

Caligirl55

danix5.... Welcome...sorry you are here and sorry this has happened again for you. I had chemo, a month later lumpectomy and month later radiation began. I'm 23 of 33 ....so 10 more to go. I go every week day. With the 2 holidays I am going 7 weeks ...We are here for you if you need us for anything, vent, rant and praises. Hugs & prayers!

Lorri....I hope you can get some rest this weekend. I know I am getting more emotional. I think the family expects everything to be back to normal and it's not.

Yesterday the radiation people changed my appointment to 9am instead of after work at 4:15. Ok so I have to use my lunch break now and take my creams & figured I would use my Lindi skin strips to calm boob down on the way back to work. I get to CCare and radiation machine is down ... They want me to come back at noon ...I won't have a lunch break because waisted trip there was my lunch break. It just hit me wrong as I dragged my sorry butt with my bag of potions & lotion back to my car and headed to work late. Could someone not have called me? So after work I went back at my original radiation time that they changed. When I got home tired and sore my parents were at my house watching my granddaughter and when my daughter came and took her home I was so tired and my step dad wanted us to join them for dinner out ...when I paused and said I didn't want to go to a place far away he gave a discussing smirk like why was I so tired. I almost lost it but held it together...thanks for letting me rant.

Leydi

Hello everyone! I start IMRT radiation treatments on January 23 so I'll be a few weeks behind many of you posting on this thread. I will be getting radiation on both sides to the chest wall, axillary nodes, and clavicle nodes. A bit concerned that my side effects will be doubled as well!

I am interested to hear what products your nurse, radiation therapist, and RO are recommending to help with side effects. I'll list mine below:

For skin effects - Aquaphor or Eucerin ointment applied twice a day; pure aloe vera gel is ok as well. For treatment, area must be clean and dry. Nothing applied to the skin for the 6 hours prior to treatment.

For mouth/throat/swallowing effects - pure aloe vera juice (George's brand specially recommended) - 1/4 cup three-times daily; manuka honey - 1 teaspoon 15-minutes before and 15-minutes after radiation treatment. Starting with day one of radiation and throughout duration. Magic mouthwash if symptoms become painful.

I had my initial planning appointment last week and my dry run simulation yesterday. They are using markers and little round clear tape to mark me up, no tattoos even mentioned.

Fotheringay

Hi all,

I'm starting rads on 1/30, and I just wanted to say how much I appreciate the useful suggestions on skin care I've found on this thread and on this site.

Carrie

danix5

Thank you for your reply!

I am so sorry your facility is so inept! That's horrible! Family also not understanding your fatigue is just sad and you need a big hug from us fatigue champs!!

danix5

Thank you for your reply!

I am so sorry your facility is so inept! That's horrible! Family also not understanding your fatigue is just sad and you need a big hug from us fatigue champs!!

SuMarie

SuperSu & Caligirl55- I'm triple negative also.

DiV - I'm/ we're missing you, how are you doing I saw you've posted at the TN forum. Warm thoughts for you!

I'm 19 of 25. My skin is red and looks very sunburnt. The left side of my neck looks really red. The creams prescribed for me are biafine and clobestal. I was told to use them 3 x a day. I put it on early in the morning. I shower about noon and don't put anything on. I get my rads at 2pm afterward in the dressing room I put it on again and then about 8pm after another shower. They seem to help a lot. I don't have much pain or itching.

About what clothes to wear, it's summer in Peru (which explains all the showers) and it's hard to find anything to wear! I'm a A cup, but it's still very noticeable in a T shirt. One side I'm as flat as a 10 year old boy and the other is a well, a 55 year old breast. I've been trying fluffy blouses and some summer sweaters, the ones with open fronts that have draping. Scarves help too. At home I don't care what I wear, but as someone mentioned I hope no one comes to visit. If they do I usually run for a scarf. I feel more comfortable.

I wish I had my funny story for the week, nothing comes to mine. I'm plugging along. Counting the days to finish rads. My last chemo 12/12/16 so I'd really like to work on getting all those toxians out of me and recuperating.

DiV

SuMarie and all you wonderful ladies,

Just an update on my treatment. I have finished 10/25 rads and 1 cycle of chemo. Start chemo again February 6th. I have developed a very sore throat from the radiation and chemo. Dr prescribed BMX. BMX has lidocaine in it and it numbs your throat. I gag trying to get this stuff down. After you get it down it feels like you have a cotton ball stuck in your throat. Nasty stuff but it helps. I haven't been able to eat meat since thursday. Eat soft foods like mac n cheese or mashed potatoes and gravy, yogurt etc. Radiologist said it would get worse due to treating Lymph nodes in clavicle and neck.

SuMarie your coming down the finish line. That's great!

CaliGirl55, i agree they should have called you and informed you about the machine. Especially seeing as you work.

All you new ladies so sorry you had to find us but glad that you did. There are alot of wonderful women on here to give support to all of you.

Caligirl55

Leydi & Fother....Welcome hope we are helpful for y'all.

danix....thx for the hug ...only we ladies can understand

SuMarie ...I am down to 10 more treatments I mainly itch and burn on my chest between my breasts. I have a lovely rash there too. Sorry you had no funny stories ... I have a kinda funny story one of my students asked me about my cap then asked if I had cancer...I said yes...she proceeded to tell me about someone who's grandpa had cancer and he's about to die ...I just smiled and said someone with cancer would probably not want to hear that ...she smiled and said ....your welcome and turned & walked away 😳

DiV...so sorry about your throat. When I had chemo I got the cold sores down my throat and it was very painful. Cold sherbet felt the best and cold drinks.

brigid_TO

Hi pacer car checking in here...

I am 5 days out of boosts and 12 days out of whole breast.

Just a caution to not fall into thinking once the actual rad treatments are done you will be immediately back to normal. I know you all know that already but I guess I am reinforcing. Last Thursday (1st day after finishing) was one of my toughest days since starting with fatigue, pain and soreness. Symptoms may remain or get worse for a week or so after treatments are finished.

That being said I am definitely feeling better today but still a good amount of fatigue. Parts of my skin (outside edges) have started to heal turning sort of a tanny light brown. Under my arm and going straight down is still red and sore. The skin is different there and I think that combined with arm movement makes it worse. If I reach up it feels like a bad sunburn pain. So put extra lotions on there.

I now have a bright red stripe right across my breast where the boosts were directed. My nipple was part of the boosts and is just sad- I will spare you the description. I have a few more days before I turn the corner on all of that.

For weeks I ate popsicles like nobodies business and now they don't seem that appealing. I think my body was trying to cool itself down.

Keep moving, keep hydrating and sleep/rest!

For all the- "soon to start", "early underway" and "almost done"---you can so do this. Hang in there.

SuMarie

hello Ladies,

Caligirl55, thanks for the funny story. I loved it. Ditzy teenagers abound.

I had a 4 year old ask me what happened to my neck. So I said it got burnt, but that doesn't mean it will happen to you. Then she asked why aren't you wearing your 😷 mask. And I said because I'm better now. ( I wore the mask a lot when I was getting chemo). She asked: ' How do you know you're better'. Darn, that's the million dollar question. Especially with triple negative. Please God, let these radiation make me better.

I was a wreck emotionally today. So we're all in good company.

Has anybody else had their freckles, moles or age spots become darker since starting radiation? I HAVE and I've read on other forums that it does happen.

My RO said it will take 6 weeks after radiation ends for my skin to be back to normal. So I'm planning on having problems after I finish. I didn't know when I started radiation that this would happen.

Warm thoughts and best wishes to you all.

Leydi

Zap 1 complete!  Not exactly sure how many treatments I'm getting since RO used "weeks" instead of "days" or "treatments".  I'm guessing 33 since he said 5.5 weeks radiating the whole area and 1 week extra on the incisions. He didn't use the word boost but that's what I'm gathering from the other posts here.

Two questions that I hope someone can help with:

1. I'm using Aquaphor on my RO office recommendation.  I just put it on after treatment today and it is still feeling like it is sitting on top of my skin. I'm under strict guidance that my skin be "clean and dry" when I show up for treatment. Nurse said not to apply anything in the six hours before my treatment but that anything applied before that does not need to be washed off.  So, will the Aquaphor eventually soak in?

2. They placed something across my chest before treatment, saying it was to keep the radiation closer to the skin.  Anyone else having this? Any idea what this was?  It wasn't mentioned in any of the earlier discussions or planning sessions. I want to read up on it but don't know what to search for.  I had a BMX with no reconstruction so I don't have a lot of flesh between the outside and the vital organs. 

annoyingboob

hi ladies, i'll be starting rads feb 1, and wanted to get your expert advice on how I should prepare for xrt before getting started. im only getting partial breast external beam radiation, but I have very sensitive skin, and want to do everything possible to preserve it. my lesion was upper outer rt breast, and I had lumpectomy with simultaneous lift/reduction. im a bit too nervous to even read all 8 pages of this thread bc I don't want to psych myself out - any tips appreciated!!

thanks to all you trailblazers!!!

ab

brigid_TO

@leydi

1. The RO direction on how long to stop applying lotion or other things before treatment is all over the place. I was told it made no difference and I could apply Lubriderm right up to the time of treatment but I stopped a few hours prior anyway as that seemed the most common advice on this site. The Aquaphor should certainly absorb, dissipate, soak into your clothing within that 6 hour time.

2. I believe you are describing a bolus. You can do your own search but I think it is common for those with a mastectomy? The radiation techs are usually good at answering questions especially if you find a chatty one. I had them showing me all my treatment slides and calculations. They only have a few minutes between patients but you can learn a lot in that time.

@annoyingboo probably worth reading through the thread. There are a lot of different things everyone is using and some are using none at all. I used (am still using) a whole bunch of things based on reading through this website. But your milage may vary. My RO recommended Lubriderm and salt soaks (0.09% saline solution). To that I added aloe vera, lavender hydrosol and green tea soaks. Towards the end,per my RO, I added Proshield Plus which is an extra goopy silicon based salve.