February 2018 Starting RADIATION

Hi there

Today the nurse approached me with an exam gown that a previous patient made. It has a tag on it that says "sisterhood of the traveling gown". I can keep it to use while in treatment and when done you sign it with an included sharpie and any wishes and is then passed on to the next woman undergoing treatment. There are three names on the gown so far. Sweet idea.

Tomorrow I will get a quick set of new xrays before the big beam. They do that after every five treatments. #11 tomorrow

We got this

Diane

i am feeling like such a big baby and typically I’m not. I am only on my 6th dose of radiation and i am so exhausted, my skin is already red and sore. My neck on the left side is stuff and feel hot all the time . I know my Drive is probably the cause of exhaustion since i didn’t have chemo prior to rads

Hi Tkane10,

I too have felt like a big baby. You are not alone. For me it's the unknown. But I feel better after today's dose (only 2nd one). I was pretty exhausted today about 30 min. after it. But I tried to push through it. I can't imagine how I'll feel after a few more. I'm not red yet but it's painful and swore. But it was swore with shooting pains before rads. I did ask my tech today why on both treatments I thought I felt heat. It was like a prickly heat in a few spots. She said some patients have said the same but not this early in. Maybe it's my imagination, we'll see the rest of this week.

Have you mentioned to your RO about the hot feeling on your neck? I hope it subsides for you. Best of luck tomorrow.

Hi ladies! I'm popping in because I had my last chemo today! They are ending three sessions early because of neuropathy. I've mixed emotions about that...so glad to be done, but didn't want to be a big baby and have to stop early. But they say it's ok to do.

I meet with the RO tomorrow and will start rads somewhere between 2-4 weeks I think. I'm curious about one thing right now. When you slather on whatever cream/lotion/potions that you do, do you do the whole breast? Treated areas? Do you try to cover it with gauze or pads or anything to keep it from getting on your clothes? Just curious about that part right now.

Thanks!

Hi Petey111. I finished RADS 12/16 but check in here from time to time. Using calendula cream over the whole breast, up to the neck and around the side, is what most of us in the December cohort did - and most of us started using it a week in advance. Once you go in for your first treatment (after simulation) you can ask the tech to show you the computer image so you'll know exactly where the "X-rays" are hitting you. It's actually a fairly big square.

Calendula cream and Miaderm (a combination of aloe and calendula) dry pretty fast so I never needed gauze. But Aquaphor, which helps if/when you have a real skin issue, is greasy and most women use it only at night with a ratty T-shirt.

Best wishes to all of you - you'll do great. Just stay positive and take naps!

Hello Everyone. I will be starting my first rad treatment tomorrow. I'm nervous and not looking forward to it. LizabethM I so relate to your wanting to get out and hike. I live in the Sierras and hiking is my passion. I have several I want to do this summer. It's motivating to have a concrete goal but I have a lot of work to do fitness wise before I'll be ready to hit the trail. I walk often but right now it's a hard chore rather than a pleasure. My muscles seem so weak and I get sore so easily. I had the same chemo regime as you and sometimes I think those drugs really affect the muscles. I know it sounds silly but I never expected the recovery from surgery, chemo and rads to take so long. Foolish, I know.

Ladies-

I'm finishing up, just had 18/20. For my skin, I found after the first week I was already really red and sore. I was using a generic calendula/aloe cream. Halfway thru second week, I had some breakdown on the skin on/around the nipple. The doc had me start the aquaphor. I get really dry hands in the winter and always put lotion on and then slather with aquaphor after. Decided to try it on my breast and seems to have really worked. Just a thought...

As for fatigue, I was slammed with it the first week. I started having some protein just before the session (a nut bar, trail mix, lunch meat) and that seemed to help. I'm making it through the day without a nap now 😃. I get to the weekend though and I'm wiped out. The house work is piling up. Good thing is that it will be there tomorrow, right??!!

IPad froze on me ———-

Due to side effects and back problem. Hopefully there were enough cancer cells zapped in our bodies. Chemo drugs are dangerous and maybe some day they will come up with less dangerous drugs and treatments that kill cancer cells without harming good cells

HI everyone,

Is anyone receiving the Proton Therapy type radiation? I was not aware of this type until a friend of the family who is a dr. that she herself went through breast cancer told me about it. I don't see being able to switch over now that I've already begun at a different facility. The facility I go to is about 5 minutes from my home. This Proton Therapy is near another local hospital that is about 20-30 minutes away.

I was curious if anyone heard of or is having this type of radiation.

For all the new ladies starting today, Best of luck. You've got this!! Let us know how it went.

I'm getting ready for my 3rd zap within the hour. The Dr. friend who had BC brought me an Aloe plant last nigh. She said her group passes around this plant to new BC patients. They found the fresh Aloe helped with their skin. I used it last night and the redness I had going to bed is gone. I'm going to try this along with Utter cream she suggested.

Good Luck everyone!

I had my first treatment today. I could feel the radiation/heat on my breast especially on my nipple. It wasn't uncomfortable but I think after several treatments I will be sore. I asked my techs if my lung would get radiated and they said not very much if at all. I asked about my thyroid and got another vague answer. They weren't able tell me the parameters of the radiation field. I'm not satisfied with these responses and will talk with my radiologist. I want to know what part of my body is being radiated and how much radiation I'm getting. I guess I'm a nosy patient.

Today was 11/21. Five more whole breast treatments, then five boosts (I have my boost simulation and get a couple more tattoos on Tuesday). Thought I'd share my experience so far, and a few things I that surprised me.

1) Deep breath holds took longer to get used to than I anticipated. Had one particularly bad day (treatment 6)--last Thursday it took 45 minutes because I couldn't get deep enough breaths. We had an unexpected 80 degree day in Pennsylvania the day before that, so maybe it was my allergies flaring? Since then I've been doing fine, and I'm usually in and out of the room in 10 to 15 minutes. I think I was overthinking things--try to relax. There is a sensor taped to my belly, so if my air level goes down, the machine stops, so the radiation can't get too close to my heart.

2) Every day when I wake up, my breast looks and feels a little different than the day before. Less swelling than the first week, but some firmness, which I was told could happen. Also feeling more of the scar tissue around the lumpectomy site than I felt before. My nipple is quite a bit larger than the right one. Hoping it goes back to normal over time.

3) My skin looks like I have a suntan with a little bit of pink on top of it, which i didn't really expect. Had my weekly checkin with the RO and he said I look as expected after 10 treatments. I have some tenderness and nipple sensitivity, but it is tolerable. A plus to being an a-cup is that the bottom of my breast is perpendicular to my ribcage, so I don't have to worry about rubbing there. The only friction is under my arm.

4) For the past 3 days my nose is running like crazy (for hours) and i'm sneezing a lot within 10 or 15 minutes after getting home from treatments. The only thing that changes from earlier in the day is receiving oxygen to help with the breath holds. For the heck of it I googled, "can nasal oxygen cause a runny nose and sneezing?" Turns out it can! I read on several medical sites that the oxygen can dry out your mucous membranes, causing an overproduction of mucous. It's really annoying, but I'm confident that I'm boosting Puffs sales figures!

Lastly--Be your own advocate!!! My RO sort of blew off my question about swelling the first week. His answer didn't make sense, which I told him, and I wouldn't let it go until I received a good explanation that didn't seen like he was rushing me out of the office. We deserve to be heard and get answers!!!

Wishing you all the best outcome possible through this daily adventure!

My first treatment was interesting. I think with the chemo you see it going in your body and you know what is going to happen, where as the radiation treatments you can’t see anything and your afraid to move and mess it up. Lol no win-win there. I am scheduled for 25, hoping it goes smoothly, since chemo wasn’t that bad. I guess it is a good thing they took the nipple, that way I don’t have to worry about it. I am hoping the flap reconstruction holds up well during radiation. Hoping everyone stays well and gets through on time.

VL22 & Roaming Star: Congratulations on finishing...so great!

dectoremember: from what I recall from my consult, and I am in Illinois, the only way to go for proton treatments is to sign up for the clinical trials/studies. And to do that, I knew that there was a possibility of being placed in a group that I may not want to be in (proton vs photon). Also, I've heard that it's for patients with certain stages of BC. More at pcori.org (research & results/explore our portfolio/Pragmatic Randomized trail of proton vs photon, etc.

As for me, I've had my 7th of 33 treatments and I have a question. Have any of you heard of the arm near the armpit going numb? They made a mold for me and my left shoulder, arm and hand go fairly numb in the short time that it takes.The numbness has gone away everywhere except in the upper arm (that fleshy area that hangs down a little bit when I hold my arm level to the floor).

They had to take a couple of x-rays during treatment because my plus sign was off by 3/16". They removed the clear sticker and wrote a new plus sign to line up with the lasers, then a new clear sticker. I wondered why my mark never looked like it lined up perfectly. Doesn't instill total confidence. Supposedly, I won't need x-rays again. We shall see.

As for itchiness, I may need to try Calendula Cream. Thank you miranda2060! It tends to get itchy near my Supraclavicular lymph nodes.

contemplating radiation

two tumors small under 3mm

is radiation recommended in that case

can anyone comment?

Momaof4kids - what an interesting idea of using green tea as a radiation relief. It sounds like it worked well for you. Is there a reason why it should be caffeinated? Just wondering as I only have decaffienated green tea.

Dector - I don’t know of anyone who has used proton therapy. From what little I read about it, it’s not a new method and isn’t offered at too many places. UF here in FL offers it, but I don’t think it’s any better than the standard external type photon method. Your doctor could explain it best. Nice you were given an aloe plant - that’s a good gift idea for radiation patients.

Joyseeker - Good luck Monday - sorry you have to drive so far!

Kivans - I’m kind of with you on radiation parameters. They probably can’t print out copies from their screens. My RO sort of slid by my question of a beam map. Like you, I want to know how that monster machine is hitting me.

Veeder14 - Let us know if you get a copy.

NeedGod - Lupron is new to me as I’m post menopausal. Did you research it here? They might explain it better.

Billb464 - Holding still is hard. My head lays sideways and I can see that round part of the TrueBeam going under me for one beam shot, then creeps up barely on the side of me - figuring those beams are closest to my heart! It looks like a dinosaur with a flat round head and long neck trying to intimidate me!

Sweetpea - My left arm pit went numb from lack of circulation during my simulation, but since then, I have adjusted it so it wouldn’t do that. In my prone position, my arm is stretched out above my head as I hang on to the black plastic handles (6 & 13) are my numbers there. I guess the weight of your arm can make it go numb.

Jadeshiva - Good thing you didn’t miss too many days and I know you must be excited that your hair is coming in. It’s nice you are half through. The calendula lotion must be helping - others using it seem to be satisfied with it too. Hope your energy level improves- I’m dreading that part so much!

Linda19152 - When you see your breast surgeon- he/she will tell you whether or not you need radiation. Your type of cancer is first learned with a biopsy along with some other factors. . When they do a lumpectomy or mastectomy, the pathology report will have more accurate details on your Stage, Grade, ES & PR status, and whether you’re HER2 positive or negative. It will also state whether your tumor was margin free, and whether lymph nodes were invaded. Radiation kills cancer cells that may still be in the breast tissue where the tumor was removed. (Surgery alone does not rid all the cancer cells). It prevents a local recurrence in the breast tissue by killing excess cancer cells still lurking around. Chemo is based on factors such as lymph node involvement, HER2 status, and the OncotypeDX test - if you had a lumpectomy. It will make more sense when you travel into this journey. I wish you good luck!

Petey - no clavicle radiation here. Hope your doctor makes the right decision about it. “Iffy” from a doctor is not reassuring.

Well - I had my 4th rad treatment. It was quick. Then I had two X-rays taken in the Accuboost machine. Next week I have both external (TrueBeam) and the Accuboost done. Then week after that, 3 days the same, then just the external for 4 weeks.

Had my appt. with my chemo oncologist. My labs were good, but again, my back ache seemed to be not blamed from the chemo. I’m not sure why she refuses to think it was not caused from chemo since I have found plenty of others on these blogs who have experienced back issues. It’s rare, but if chemo causes muscle pain, why not muscles in the back? I was told I would need to basically have it explored by another doctor. I never had back problems until I started chemo! I didn’t hurt it in any way as I was half dead with chemo! It got worse with each treatment, and it was worse 5-6 days after the infusions. It definitely had a pattern to it, but she still disagrees. I think it should eventually wear away - I hope. Yet, my primary thought it was the chemo causing it. She’s a very young doctor, but you would think she would have heard of this as a side effect in her research.