MARCH 2018 starting RADIATION

Veeder14

Hi All,

I'll be finishing up the first week in April and when it gets closer I'll start the thread.

kaywrite, glad you got all your marking done and are ready to go. I hope the US on Monday answers questions about that bump and it's nothing but scar tissue or inflammation. Starting sooner the better, I agree. I've been using coconut oil and it seems to work fine but maybe later will be using miaderm. I just about fainted when the pharmacist called saying they could order but it costs $40 for a 2 oz tube so I'm holding off purchasing until I think I need it.

I've been having an awful time since my surgery with ear, sinus, dizzyness etc., Was in the ER again last Thursday AM early. Radiation adjusted my morning app't to late afternoon so I could sleep during the day. However, I need to get to my regular ENT this week because I can't deal with being dizzy, and having sinuses plugged up during Radiation. Hopefully, I can get in to ENT on Tues AM and Radiation will adjust my app't time for later in the day. This involves lots of driving back and forth from home to the hospital and back- 4 hours round trip. UGH.

Since my radiation time was adjusted yesterday to around noon, there were actually 4 ladies in the locker room waiting for treatments. I got to talking with some of them about their experiences, it was nice to converse with other patients rather than just sit in a room alone waiting. I don't know why but there are 2 different machines used and all of them were scheduled for a different machine than me. They might be doing the prone pts on one machine and the supine pts on the other, saves time with set up.

So glad to have slept in my own bed last night!

kaywrite

Oh, Veeder, I'm so sorry to hear that. As if being treated for cancer wasn't hard enough without being dizzy, ER visits, 4 hour commutes. Big communal cyber-hug for you. Ones own bed is the best. Take care

flowergal

Hello

I start my treatment on Tuesday 3/2018 .20 tx total . Hope it goes well. i'm a little apprehensive about skin reactions since my breasts are big and droopy and they will radiate some of the axillary nodes. Hope the weather doesn't get too hot so I don't sweat too much. I was told to avoid antiperspirants the whole time. ! I was told it is best to avoid wearing a bra, but also understand that the skin reactions occur when skin rubs skin. So I guess I'll try wearing a soft bra and see what happens!. Good luck to all.

flowergal

I was told to use 100% pure aloe vera gel - fruit of the earth brand and I ordered it on amazon for $8. The nurse said it works well so I will trust her expertse. My sister had radiation last year for throat Ca and used Calendula cream ( from marigolds)

Good luck. I start tx this coming Tuesday.

Veeder14

Thanks kaywrite,

One more night in my own bed!! Actually getting some rest.

DoubleBloom

Veeder, That stinks! I'm sorry your plate is so so full with exacerbated health conditions and a strenuous commute. Hang in there! I know that a lot of women like Miaderm however if cost is on your mind then you may consider Calendula cream which sells for $6 for a 2.5 oz tube. My RO says there is a lot of research supporting that it is clinically proven to help with skin issues during radiation. I use a thin layer three times a day but not within 6 hours of treatment. There are also tons of women who use 100% aloe with great success.

Kayright, You're on my mind as you get that bump checked out. I recently found a little lump in my armpit and had an ultrasound only to learn that it was a fatty nodule. Hoping the same for you.

Flowergal, Good luck as you begin this week. I'm surprised you were told to avoid antiperspirants. Most women are at least allowed to use Toms brand. Another option is to use a crystal body deodorant rock (available on amazon) which stops odor (not sure about perspiration).

Wishing EVERYONE a successful week ahead that is free of radiation side effects!

metoo2018

I agree with you all - the markings are quite something. I had no idea until I got home and looked in the mirror. I had mine a full 10 days before starting treatment. I will be shocked if these stickers they put over them last another day or two. I don't start my treatments until March 27th with simulation on the 26th.

Also just started my Lexotrole hormone therapy so hoping that doesn't introduce any nasty side effects. Though whatever I experience it is far less than most of you so I continue to be appreciative for my relatively "simple" breast cancer experience (if there is such a thing).

Best to all of you as you continue your treatment.

"To escape fear, you must go through it, not around"

kaywrite

Bumpwatch: just got out of ultrasound - it is a cyst. They did (another, but first post-lumpectomy) mammogram I wasn't expecting, which set off omg alarms in my imagination, but both that and the ultrasound looked normal, thank goodness. I swear, I just wanted to cry in relief.

Veeder, I hope you get some relief at the ENT doc tomorrow. I've had BPPV (benign positional vertigo) off and on since my 20s - it is unbearable. I also had a chronic sphenoid sinus (the lesser known sinus) problem that was causing blinding headaches mis-diagnosed as migraines. I've read that radiation can cause dizziness, too, although breast rads? Feel better

operamom1

I just returned from my simulation. It all went well. I am slightly annoyed that they changed my schedule from what was originally given to me. They had originially scheduled me for the same time every day - it was an incredibly convenient time, now for the first 3 weeks my times are all over the map and the times are not as convenient as I'd like.

I shouldn't complain. I go in for my first treatment tomorrow and will be all finished in 7 weeks!

petey111

Feline - My cancer side is left side too. Because I had read things ahead of time, I specifically asked about left-side and having to do breathing. Maybe it's the angle mine is at, but my RO said no deep breathing necessary that the amount of radiation that the heart would receive is very minimal.

I also have to say that the office is at a cancer center, but not attached to a hospital. It's small, so I think I've reaped the benefits of that. My consult was just over a week ago Thurs. My simulation was a week after that, they formulated my plan the next day (Friday) and I had my first treatment today (Mon.). So yay for small places I guess. So much less waiting for once.

So I did have my first appointment today. It was easy peasy. I was on my back and luckily I don't have pain issues like some of you. I do have to do 33 treatments instead of 20. Kind of a bummer but oh well. The RO said that in order to treat the first two levels of my nodes effectively and not get too much radiation in the breast at once, they needed to do the standard fractionated course instead of the quick course (or whatever it's called). As long as I'm done before my son gets out of school in May, I'm ok with it. I have aloe, aquaphor, and a cotton bra coming, and I have coconut oil on hand, but we'll see if they are even that necessary.

I did go to the grocery store this morning, but now, I'm going to get my butt up, eat a salad, do my arm exercises, and walk on the treadmill. No being lazy for me! Hopefully walking will help A) get rid of my neuropathy and ward off the fatigue!

FelineMum

Petey, I admire your energy and your determination to keep it. Most of the time, grocery shopping wipes me out so much that it's all I do that day.

My dry run is today. The real thing starts tomorrow. I commute an hour each way, so I'll be spending some nights near the treatment center. Mine also is a standalone cancer center, but it's huge. In that one building are at least three infusion centers. It does have some really nice aspects, like a library with a kiosk staffed by volunteers who usually are survivors. They have everything from hats to quilts to port protectors - all donated and often made by people in the community. There are quiet rooms and areas with huge plants and ornamental trees that I find soothing.

When I was first being evaluated for rads, the RO said we wouldn't know until a simulation was done if I'd need the deep breath hold. He said both the targeted area and the heart's location determine the need. If I didn't need the deep breath rads, I could go somewhere closer to home. But protecting my heart as much as possible is worth it.

I've got aloe, Aquaphor and emu oil. I've been moisturizing like crazy the past couple weeks. I altered a T-shirt into a "gown" and got approval for it. All engines go!

kaywrite

Hope this is not a repeat, but there are new radiation guidelines posted on the home page of BC.org: http://www.breastcancer.org/research-news/accelera...

If I understand correctly, radiation doses are measured by "Grays," with "2 Grays per session" whole breast, or 50 (shades of?) Grays in total for a 5-week course, for example. However, they have now posted about accelerated "hypofractionated" schedules with higher doses for shorter periods.

I know some of you have been exhausted by the long commutes you must make every day. Maybe this will help.

xox

INFJen

hello ladies~ i am new to this forum. my first day of rads was 3/5 and today is #12/33 for me. struggling with fatigue at the moment which started last week.

skin surprisingly seems to be holding up so far as i have very sensitive skin and have had bad reactions to the steri-strips and skin glue used for my biopsies and the surgical antiseptic/iodine for my lumpectomy. hoping my skin can continue to hold up for the rest of treatment. i have only been using miaderm twice daily. i do have an aloe vera plant at home which i plan to use once i notice irritation.

good luck with treatment everyone! praying for smooth sailing for us all

operamom1

I had my first treatment today. I was surprised at how short it was. After getting me situated on the table properly, I feel like it was just 2-3 minutes under the machine. Is that normal? I thought it would be at least 10 minutes.

flowergal

I also had my first tx today. The actual radiation was only about 5 minutes once they did their markings and measuring stuff. I do walk daily so hope to keep it up or use my Wii indoors if weather is bad. First day of spring is cold and rainy, but hey, that's OK as I don't want to sweat too much until I am finished with this!

Good luck to everyone !

flowergal

I hope you are feeling better!

Veeder14

Hi flowergal and operamom1,

Glad you got through the first treatment, now you know what to expect. My treatments are very short also, I'm in the prone position so can't see what's happening. But the beam seems to go for about 30 seconds, then a beam from a different angle goes about 15 seconds, then the machine goes over my back to the other side of me, and same thing (same breast), 2 different beams. Then I'm done. One day a week they do xrays which takes longer, it checks to make sure the treatments are correct and makes changes if it's not, also got remarked that day.

The Radiation locker room has gowns, pants, towels, sheets, blankets, etc., Yesterday I took off my gowns when I changed to clothes and my cell phone must have accidentally gone in the laundry with it! Ugh, I didn't remember until late last night when of course the soiled linen had already been taken to the main hospital laundry.

So far I've been keeping up with the going to the gym and walking outside and hope to continue. I do sweat but go straight from the gym to take a shower. I bought some new soft bras made of cotton that I may have to switch to from my usual workout tops. Can't exercise without some sort of a bra.

operamom1

Thanks for your response, Veeder14. That sounds like what is happening with me except I am not in the prone position. I thought I had read that the treatments would last about 10 minutes, but I guess they are figuring in the prep time too.

Nancy116

Operamom and flowergal I also had my first treatment today. I was in and out in 15 mins that included changing of clothes and all. Hope we all have minimal to no skin issues.

Veeder14

Hi kaywrite,

My doctor said I'm getting 2.7 grays per day, for 21 days. I'll have clarify if the boost dose is the same? Today is 9/21. I just want to get this all overwith~so I go home and stay home.

flowergal

Hi Doubleblooming,

I was told that Toms natural deodorant was ok, but that antiperspirants contain metals that increase the chance of skin reaction, I am only working 1/2 day a week so I guess the staff and patients will have to tolerate it if I smell too bad !LOL ( I will also retire in June as this experience made me decide it's time to do what I want, when I want even if it's loafing! ! I'll be 70 in June.

Dlpaquette

I have been reading everyone's posts and it is very helpful. Tomorrow I go in for the shorter SIM and if the RO feels my incision is healed enough I will start radiation I Thursday, it is at a point I think it could go either way, I am hoping that we can just get started, I want this to be done by the time the weather is nice, I spent last summer on crutches, I am looking forward to a better one this year. It is interesting how the amount of days varies so much, mine is 28 days, somewhere in the middle is what I have seen others post. If all goes well I could finish on April 30th. The first SIM was a bit painful as I had fallen on slippery steps the day before and hurt my shoulder, but I managed to get through it, tomorrow should be a piece of cake as my shoulder is feeling much better than a week ago.

metoo2018

Kaywrite- thanks for posting that link to the new standards of care. The change in standards of care most likely helped my RO adjust my schedule from 33 treatments to 20 (16 regular with 4 boosts). I am encouraged by all the ladies who are just starting and like everyone else want to get started in order to get finished! I was diagnosed on Nov 13th and it feels like a very long time ago now.

My simulation is Monday, treatments due to start Tuesday. A few changed appointments but generally at lunchtime each day. I will be at a cancer center which is only 15 minutes from my house. I realize how lucky I am when I hear such long commutes, or having to stay at a hotel during treatment. I am also fortunate that I have an office job easily done from home and my boss has been wonderful. I'll work from home the entire time - means no fancy clothes and no worries about lack of deodorant along the way.

Continued good luck to everyone already underway and for those hoping to get started soon!

Sekerim

Hoping I can jump in here with this group. Had my simulation on Friday and will begin rads on April 4th after spring break. Didn't mean to have such a long break. I had a lumpectomy on 2/13 and developed a severe enough hematoma that my BS wanted me to wait to start rads - this was after my initial consult with both the RO. Based on that timing (he guessed about four weeks) we asked him if it was OK to take a trip with the kids which he thought would be great for healing. Just based on schedules got the sim out of the way so rads could start as soon as I got back. Laughing at my tattoos/sharpie/tape marks - I look and feel like a cyborg. Between this and my Franken-boob I'm going to look fantastic on the beach. :-)

Treatment facility gave me deodorant and cream and told me they give me as much as I needed through treatment.

I was initially really bummed to have to wait to start rads. Like many of you, wanted to get through treatment so I can get on with my life. However, with the new guidelines for the shorter course of treatment being approved last week I'm thinking it may be a blessing. I was initially scheduled for 30 whole breast treatments with boost which would have spread my treatments out over 7 weeks (they start on Wednesdays when the RO is at the treatment center). I'm now waiting to see if he'll sign off on the shorter treatment for me. If I'd started on time, I'd have been on the longer schedule so even waiting to start, may be done with treatment at roughly the same time.

DoubleBloom

Flowergal: I'm impressed that you're still working. Congrats on your impending retirement. You deserve to loaf around!

Petey: I'm being active too and am almost up to two miles of brisk walking at least five days a week. It feels sooo good and I find that I'm happier and more productive. Plus, I need drastic measures to get rid of all the weight gain from chemo. Where's the justice in that!!!

Kayright: Thank you for the link.

Veeder: My fingers are crossed that you get your phone back!

Many of you are just starting with treatments. May the Force be with you!

kaywrite

Veeder - I'm starting tomorrow and need to ask about the grays for me. I am going to try working half days for the first week and see how that goes. I take the train into town, which is often unreliable in terms of time, then must drive through Atlanta traffic to get to Emory Winship. My appointments are at 1:00 - so at least it is not near rush hour. But driving anywhere in Atlanta at any time is like rush hour in most cities. If this winds up being more stressful than helpful, I'll take sick leave. And, of course, need to see how I react to radiation.

metoo, Doubleblooming - you're welcome.

Best wishes to everyone in the process of, or about to head into radiation. A friend of mine just had a reocurrence, we are going to the same doctors at Emory. Her mantra for this is: chin up, chest out!!!!

Paco

I am curious now about the number of grays they will be administering in my case. I called to confirm my appointment on Tuesday and the number of treatments (my portal was showing 28 but I was told 20 in all) and asked the nurse who answered but she couldn't give me any technical information. My appointments are at 8:10 every day. I wanted the first available appointment and they start at 8 so I hope they won't have slowdowns early in the day.

All my markings have washed off, but looking closer, I see that the lines were basically pointing to the tattoo locations. Those tattoos hurt more than anything else btw.

flowergal

Hi Paco.

I had my first tx yesterday and the tech told me not to worry if the marks came off. I was worrying about how to keep them intact.I do have the 3 tattoos so I guess they depend on them more.

Marigold8

Hi, all,

Just a short update. I have had 6/20 treatments thus far and am beginning to feel mild fatigue and notice some minor pink across the treatment area. Using Midaderm as recommended by my doctor. Yesterday I had to take a two-hour nap in the afternoon. First time for that.

My treatments are very short. I'm in the prone position. The therapy beam comes from two different angles, each for about 30 seconds (I counted while the machine buzzed). Every five treatments they take x-rays to ensure that the treatment is going as they expect and every Monday I see the RO to discuss my progress and any symptoms. So far so good, I guess.

Veeder14--I have asthma and allergies. This time of the year is the worst for me, as trees begin leafing out and blooming. I can relate to your dizziness and other symptoms. Hoping you find relief quickly!

Veeder14

Hi Sekerim,

Welcome, and you were smart to take a vacation before starting treatments. I only had a week but not enough time to go any place special. I hope you get the shorter treatments.

Marigold8,

I'm feeling a little less dizzy and congested~it's the trees and now the grasses are starting. Today was 9/21 for me, someone didn't show up so they took me early and did the xrays today. Adjustments of 1 mm or 2mm were made to make the beam most effective and stay away from lungs/heart. So the angle was changed and I could tell~the beam was even shorter (3 seconds) for one and about 10 seconds for the other one, but I would guess much closer to me. Glad xrays are done for this week as it causes a lot of back/neck pain. Got remarked again also with new measurements, I've got ink all over! The technician mentioned not to gain or loose weight and she was talking about 1 or 2 pounds! Last week when I was sick I couldn't eat much, so trying to maintain the same calories and exercise schedule.

flowergal,

I think they use the tattoos for the major line-up and then the ink marks for the details. The tech's are always calling out numbers while getting me adjusted on the table, I guess that has something to do with the line-up also.

Paco

Let us know what your treatment plan is after your first app't on Tuesday. Good luck it should go smoothly. I got the earliest app't available 8:45 am so there wouldn't be a back up. I think the male patients are using the machine from 8 am until my app't.

kaywrite,

Sounds like you have a complicated commute to get from work to the hospital. I hope it goes ok for you. Hopefully your staff will be somewhat flexible with your app't time. I was given a phone number to call on the day of my treatment if I was sick or would be late so adjustments can be made that day.