Starting Radiation August 2017

Jkp1024

I had my first treatment today, of 30. I was pleasantly surprised at how quick it was - just long enough to enjoy a flash from the past of Bizarre Love Triangle by New Order as the musical offering. I was surprised (although, really nothing should be surprising anymore) that by this evening I'm definitely a little pink and quite warm.

I have the 4 tattoos, and the stickers with sharpie marks so I almost startle myself sometimes in the mirror. I was emotional during the set up and simulation, especially when these wonderful people ask me about my kids. That seems to set me off every time. But I've made it through a really tough 3 months, I'm determined to get through this and move on to my new normal.

All of you are in my thoughts, because we all have our own journey to make it through to the other side, and all the love and peace we can put out there will help get us there

inccmd

I begin this afternoon. My tea is steeping, and I'm looking at Emu oil. So glad for all the advice and positive thoughts. I plan to do the tea wiping 3 times as Llamalady suggested. I read through the directions carefully.

I'm feeling the same way as many of you - glad I'm not alone. I can't wait to get started because it gets me nearer to being finished. I have 20 treatments coming my way. Guess I get to say 19 this evening.

Castigame

Hi Ladies,

I technically belong to July rads since my real day #1 was July 31st. I am inviting myself to Aug thread also.

Hope all of us are faring reasonably OK. This crazy weather does not help w rads and preferred exercise while being zapped. DH and I walked at 615 am!

Got up this morning almost put RO recommended cream 11am appt. I saw slight pink lines on my chest from yesterday's zapping. Little bit more nerve pain all over. Used up entire tube of silicone cream. Thank god RO has unlimited supply. I feel my skin got sensitive overall.

Went for PT. Even though this is for something else, any PT when you have probabilty of stiffening from rads is good.

Speaking of which, I should do some exercises PT gave me.

Mimi

illimae

jkp, New Order, nice! I hope I have that option.

My simulation was today, I'm so colorfully marked up. 1st rad starts on Tuesday.

ShockedAt48

Finally have my first appointment this Thursday. Nervous but want to get it over with. Did anyone bring anyone with them for the first time?

Castigame

Gm shockedat48,

My hubby went w me for RO consul and first rad. RO was able to make him understand better about rads

Mimi

CharleeCat

I have a question about the green tea protocol. I started yesterday and I used my green tea soaked cotton squares. I was surprised at how warm my breast was, and how quickly the tea helped. I didn't brew it strong enough yesterday, so I made a new batch last night. I used it right after treatment and before getting dressed to leave. It really has a comforting effect. My question is this: Do you reuse the cotton pads or do you use new ones each time. I feel like there was still a lot of tea on them and in the bag. Or, did I not use enough? I have very fair skin and I want to do everything I can not to have a terrible reaction. TIA for your help.

Mimie

llamalady - thank you for your comments about fatigue and music. Will inquire if music is provided. After reading about your chores, my day seems silly in comparison, so I think I can get through this. The Emu oil arrived yesterday, and I checked it out. No odor, and not greasy at all. I have the tea bags ready as well. Is there any particular soap you used for the area. I have been using Cetaphil since surgery, but noticed it contains alcohol, which my RO says is a no-no.

TapperMom38 - thanks for your comments on fatigue as well. Running after a toddler sound much more exhausting than a vacation with DH, so I am encouraged.

Mmb - I too am humbled by your daily trip for treatment, but maybe if you listen to a book on tape, or music while in route it will be manageable.

Like the other comments: I'm not sure how to describe my current condition, but I like the suggestion of "cancer survivor". Lets not let this define us, just make us stronger. We all have other interests, activities and people to fill our lives, lets concentrate on them.

Goofycat

Starting radiation on August 6. I am going to try the green tea soaked pads after radiation. Thanks for the tip.

I went in for my mold yesterday. It was pretty quick. I now sport tattoos. I wanted smiley faces but have dots instead.

I also will be traveling 170 miles round trip everyday. The first week in the middle of the biker rally that is in Sturgis, SD.

I hope everyone's radiation treatment goes well.

Legomaster225

We are close to the same schedule Goofycat. I had my mold today. I was just happy I was able to get my arms over my head with my cording issue. PT has helped a lot with that in just a couple sessions. I will start on the 14th. I'm ready to get this over eith

pink_is_my_colour

rebamacfan: are you going to try the green tea?

CTJ1108

I was supposed to start today- but because of a really itchy and crazy red rash over 1/3 of my breast- around incision area and spreading outward and across, they put it off until Aug 8th. Didn't seem to be really like an infection, but put on Bactrim DS x 7 days and cortisone/antifungal cream. They also did a punch biopsy several days after treatment since it didn't seem to be responding. (Results of that pending) Anyway- this puts me off from finishing a week. Luckily I'm having only 4 weeks (20 total days) inclusive of a boost.

Since I work from home, teaching online, I am able to use this end of semester gift of time (energy) to really get caught up a lot - so looking at silver linings always helps!

Also- another silver lining- all genetic tests negative! A relief since I recently lost my mother to Pancreatic Cancer.

llamalady

CharleeCat - I used fresh cotton each time. On Sunday night I got out 5 zip locks and put 3 cotton squares in each baggie. Then each day all I had to do was pour the tea into the bag. I had left over tea in the baggies as well but just trashed it and started fresh each day. I'm thrilled that you are already seeing how it pulls the heat out. It may help some of us more than others, but it certainly won't hurt to use it and I figure some benefit is better than none. I brewed 2 tea bags in about 5 ounces of water. Let me know if you have any other questions and hope all goes really well for you! I'm very fair skinned as well and I only got pink so hoping the same for you and all the other ladies!

Goofycat - I'm happy to read that you're trying the tea as well. Best of luck and post how it's going for you. That's quite a trip you have to make each day. Pace yourself when and where you can. I'll be happy when that is over for you.

Mimie - I'm glad you got the oil!! It's really nice. I loved that it had no odor and was not greasy at all, but boy did it keep me from drying out. I'm still using it each night at bedtime even though my skin looks normal and I'm 3 weeks post rads tomorrow. I just figure it's got so many antioxidants and is 70% the omega fatty acids, that it has to be good for the scar area. Plus it just feels good and it forces me to massage the entire area and I think doing that each night has helped to break up some scar tissue that I used to be able to feel, but now can barely feel anymore. As for soap, I also used an emu oil soap that I ordered from Amazon. It's a bar soap and is sort of tan in color. It has emu imprinted on it. You can buy it in 2 bar pack or in 6 or 8 packs. I ordered just the 2 pack to try it and I love it! Used it all through rads and still use it now and plan on continuing to use it. It's very moisturizing without being oily, has no scent to it but it lathers beautifully! I even shave using it. Also my husband has very sensitive skin and was having some sort of rash or eczema and I gave him a bar and it cleared it right up. So you might consider ordering that 2 pack and seeing what you think.

I'm sorry we all ended up in this boat but I'm happy you ladies are getting started on the countdown to getting this part behind you!! Hang in there! You'll soon be out of this daily grind!!!

StaceyB

Hello Ladies - I mentioned using the green tea during my appointment today (did not see my regular RO), and they told me to please discontinue until I speak to my regular RO. I did some research online - and their is some very mixed information - some proponents for, and some that it interferes with radiation effectiveness. So, I would suggest getting your RO's buy-in prior to use.

Tappermom383

Stacey, I think that's good advice for any lotion, cream or other treatment. It's obvious from reading all the radiation threads here that protocol varies widely from RO to RO. One RO is even saying no lotions at all. I assume each RO knows his/her equipment and how their patients have reacted.

I was gifted with a tube of Emprizone from a friend who had used it with great success. She had the same RO but 10 years earlier. And so I took it to the RO who OK'd its use.

This all begs the question: Why such disparity in protocol?

MJ

illimae

Has anyone had terrible stiffness after the simulation or treatments? My left arm (raised for rads) and my neck (cocked right for rads) are killing me. Maybe I'm just wimpy or it's extra painful because I'm still healing from surgery.

Castigame

no, illimae, 

I was so stiff after simulation. I was requited to hold bars above my head with both arms straight. 

I think our body is acting up because we went thru so much in terms of surgery  and chemo.

stiffness from rads diminishing gradually for me. today was #5  out of 30. 

mimi 

Castigame

just another silly two cents from me. 

I put my aloe gel in my fridge mainly because I liked the cooling sensation from green tea. 

Yea I guess I should ask my RO about it. 

anyway, I poured cool aloe gel on  generic gauze pad and then dabbed wet gauze all over my chest. 

I love it. my RO sure approved aloe so I am getting more aloe and gauze pad. 

last moisturizer is still aquaphor though. 

mimi 

LeesaD

Jumping in this thread. Had first of 25 rounds yesterday. Second one was this morning. Pleased with how quick the treatments are. So far so good. I've been putting lubriderm on after treatment in the dressing room right away. Before bed I used the Aquaphor which I didn't like at all because of the greasiness. It is what it is. Was a little tired yesterday later in afternoon so I took a nap. I was able to run this morning and hoping I can continue that and also work in some more exercise throughout treatments. Tmrw after my radiation I'm getting a Zoladex shot to shut down my ovaries so I can begin AI's. I had a harder time dealing with the anticipation of rads and hormone treatment than I did with the chemo. Now that I've started the rads I feel better as the anticipation was worse in my mind. Hoping for no complications throughout. Stay strong ladies! We can do this.

StaceyB

Tappermom38 - I wonder too why there is such a vast difference in protocol?

Illimae - I am having a lot of issues with my arm as well. I think mine is due to the lymph node removal. My arm is stiff and falling asleep. I am having pain in my shoulder etc. My RO suggested I go back for more PT. Did you have cording after surgery?

ShockedAt48

I had my first treatment today. It was somewhat odd, the technicians told me that the machine would take x-rays and the doctor would check my position. The machines kept swirling around me and I thought to myself, could this be the actual radiation but thought no necause the doctor had not checked my position yet. The tech comes in and tells me that I'm all done. I had radiation without knowing! It's fine and I went back to work. Was surprised that I could feel stuff happening inside my breast, tingling and little tiny amounts of pain. It was also slightly red and hot to touch. I didn't think I would notice anything from the first visit. Has anyone else felt anything the first day? I am going to try Miaderm lotion.

CTJ1108: I had something similar, I broke out in hives on my upper chest above my breasts and neck for over two weeks. Was worse than the surgery. I also had lumps on my affected breast and healthy breast that were swollen, red and hot and felt like breast cancer lumps. The lumps lasted four weeks. Nobody knew what they were. I think the allergic reaction to the surgical prep overwhelmed my lymphatic system and the swollen spots on my breast I think were lymph nodes in overdrive because of the surgery and allergic reaction. Or they manhandled me in the OR!

Littleone1

Thank you so much for this info! I'm calling my RO in the morning to ask about the green tea. I am starting radiation on the 14th bc I had a reduction after my lumpectomy. Kind of freaking out because I am a teacher and go back to school on September 5 and radiation won't end until the 11th. The first few days of school are exhausting and I am worried about being fatigued on top of that. I will have 16 whole breast treatments and the 4 boost treatments as well. I feel better reading your post. I am getting tired of constantly being in pain so maybe that will save me the pain of the sunburn type symptoms they're telling me about.

illimae

Stacy, no cording issues but I've had major delays in getting the stretches done. I finally got the axillary drain out today after 5 1/2 weeks, I think holding the rads position just made it worse.

Moderators

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Legomaster225

Stacy, I have cording and am getting PT for it. It has helped and I was able to get my arms up for the simulation. I was sore and stiff afterwards though.

I was hoping side effects wouldn't kick in for a few weeks. Shocked, that sounds disheartening feeling it after the first treatment

I did talk to the radiation tech about the green tea. He said he never heard of it but the student that was shadowing him had. He said try it, it can't hurt. I'll let you know my experience.

Castigame

#6 out of 30 done. 20%!

Little bit more tired little bit more red and little bit more nerve pain. Yes a bit more relaxed bc I dont grab the handle bar so tight.

Did a little experiment which is green tea and aloe gel dabbing every hr or so and plastered eucerin skin calming cream. Honestly it will be kicking in harder next week. So no matter what I do, I know I will be uncomfortable. For now I am going to take 0.5 mg ativan at night to sleep better.

Mimi

inccmd

First week down with simulation and then 3 out of 20. Feeling it some warmth, but other than that feeling fine, but I am glad to great the weekend's 2-day break. In fact, I think it's time for more green tea & then oil. I've never been much of a lotion person, so being good about it for the treatment is new for me. And I'm trying to be very good about drinking more water.

Hope all of you enjoy the weekend.

StaceyB

Legomaster2 - My regular RO called today - I guess they had left a note for her. It appears they have an issue with the anti-oxidants in the green tea. The concern being that the anti-oxidants can potentially protect the cancer cells as well as the healthy cells - hence diminishing the effectiveness of the radiation. They wanted me to cease until treatment is over. I have been googling today, and it appears that use of anti-oxidants during cancer therapy is just a very controversial topic in general.

Legomaster225

Thanks Stacey. That makes sense too. Why can't any of our choices be easy.

ShockedAt48

I had my second round of radiation today and am now experiencing (I think) rib pain that starts under my arm and goes to almost my mid-back. It's right at the level of where the band of my bra hits. In addition, everything seems to be stiffening up in that area, like my shoulder. I am not sure if this is normal. The radiation oncologist said I should have virtually no symptoms except for possibly skin irritation. I guess I will mention it on Monday.

My oncologist sent me a letter today about joining the clinical PALLAS study, see below. Has anyone else been asked to participate in this study? The side effects sound pretty severe with white blood counts being low. Like 85-90%! Would like to but I am afraid of the side effects. Will have to discuss more with my doctor after my radiation treatment is done.

What is the PALLAS Trial?

PALLAS is an abbreviation for PALbociclib CoLlaborative Adjuvant Study.

The PALLAS Trial (NCT02513394) is exploring whether palbociclib, a targeted medication taken with adjuvant endocrine therapy, will decrease the chance of breast cancer coming back beyond endocrine therapy alone.

The PALLAS Trial (NCT02513394) is for people who have had a diagnosis of hormone receptor-positive (HR+)/human epidermal growth factor receptor 2-negative (HER2-) breast cancer and are receiving adjuvant endocrine therapy. Adjuvant endocrine therapy is treatment that is given after surgery, chemotherapy, and/or radiotherapy; examples include tamoxifen and/or aromatase inhibitors (eg, anastrozole, letrozole, exemestane).

IMPORTANT SAFETY INFORMATION AND INDICATIONS

BRANCE may cause serious side effects, including:

Low white blood cell counts (neutropenia). Low white blood cell counts are very common when taking IBRANCE and may cause serious infections that can lead to death. Your doctor should check your white blood cell counts before and during treatment.

If you develop low white blood cell counts during treatment with IBRANCE, your doctor may stop your treatment, decrease your dose, or may tell you to wait to begin your treatment cycle. Tell your doctor right away if you have signs and symptoms of low white blood cell counts or infections such as fever and chills.

Before you take IBRANCE, tell your doctor if you:

• have fever, chills, or any other signs or symptoms of infection.
• have liver or kidney problems.
• have any other medical conditions.
• are pregnant or plan to become pregnant; IBRANCE can harm your unborn baby.
• Females who are able to become pregnant and who take IBRANCE should use effective birth control during treatment and for at least 3 weeks after stopping IBRANCE.
• Males who are taking IBRANCE and have female partners who can become pregnant should use effective birth control during treatment with IBRANCE and for 3 months after the final dose of IBRANCE.
• are breastfeeding or plan to breastfeed; it is not known if IBRANCE passes into your breast milk. You and your doctor should decide if you will take IBRANCE or breastfeed. You should not do both.

Common side effects of IBRANCE include:

• Low red blood cell counts and low platelet counts. Call your doctor right away if you develop any of these symptoms during treatment:
• dizziness

• shortness of breath
• weakness
• bleeding or bruising more easily
• nosebleeds
• infections
• tiredness
• nausea
• sore mouth
• abnormalities in liver blood tests
• diarrhea
• hair thinning or hair loss
• vomiting
• rash
• loss of appetite