February 2018 Starting RADIATION

Blair2

Ouch JadeShiva - would some aloe gel soothe the burn? Hope the two day break calms it down. I wonder how they are double dosing me with Accuboost and the external in my early weeks. Has anyone here had both methods done at the same time

klvans

Has anyone encountered throat irritation as a result of radiation? I've seen it mentioned on other threads and wonder what exactly causes it. Is it the result of radiation reaching the lung or throat area?

mommaof4kids

Blair2- I'm not sure why you use caffeinated green tea, but it was specified that way in the instructions my RO gave me. I sprayed it on 4x a day even the days I didn't have rad. It was a pain to do that since you have to get undressed so many times, but I thin it was well worth the effort.

Dectoremember

Hi Ladies,

Friday was my 4^th treatment. I was so sick that morning they took 3 other patients before me. I'm not sure if I was coming down with something or just drained. They cannot believe my breast is already red after only 4 zaps.

Does anyone else feel heat or a sting during any part of their zaps?

Jade Shiva- I had Lupron over 15 years ago. It was to treat endometriosis. I was on it for a total of 2 years but not all at once. I didn't seem to have any issues back then. But when I had it they were monthly injections. I've heard they now do 3 month injections. I think that's a lot combined in one dose. But who knows.

I'm also so tired but cannot sleep. I've tried to keep up my normal routine but have found it difficult. Today I had to nap and that turned into 2 hours.

Blair2- I am in FL as well. I heard about the Proton radiation available at Orlando Health UF Health Cancer Center in Orlando. It was never mentioned to me as an option but a family member suggested it. I ended up doing the Varian TrueBeam. I really don't know all the different options available. I just have to trust that they know what's best.

Hope everyone is resting well this weekend. Ready to begin another week.

sweetp6217

klvans: My RO did mention that a sore throat might be a possibility for me since I'm getting rads in the supraclavicular region. As with almost anything, they won't offer treatment possibilities until it might occur; at least, that's how they roll where I am.

sweetp6217

On a different note, I wish that I could just go on Vacation and put a halt to this steady treatment. I'm experiencing an uncomfortable twinge in my shoulder and arm. Like nerves are being pinched. What's next?

Doofuscat

Happy Sunday/No Rads Day!

Dectormember I'm in Florida too. I called the UF Proton Center in Jax and they told me there was a waiting list for treatment but they would try to work me in for consultation. However, my insurance company told me they considered Proton therapy "experimental" and therefor not cover it. Sooo, I could not move forward with that plan. I hate insurance companies!! As far as heat and stinging - yes, I feel it too during my zap. It seems to be when they are zapping the top of my breast. Of course my eyes are closed so who really knows where they are aiming the beam.

Sweetpea, I asked my RO for time off to spend with my kids over their spring break (taking 3 days off). He approved it. I have a pretty low grade cancer so maybe that is why. Ask your RO. Maybe just a long weekend break would make a world of difference to you. Hang in there!

And I have a weird question for you ladies. Has anyone noticed overall mucosal drying? My eyes are dry, as is my nose and even my vaginal area. I took Accutane in my early 20's for acne and I feel like the rads are drying me out just like the accutane did. I am drinking lots of water. Maybe its just me.

Hope everyone has a good week.

Dectoremember

Hi Doofuscat – Yes, I am having drying. I just assumed it was me or allergies. I don't usually have allergies this bad but the weather has been breezy here this weekend and pollen count is high. I'll see how this coming week goes. I have not been drinking fluids like I should. And I'm usually the one you see always carrying a water bottle around with me. I have no appetite and terrible Gerd which is not helping. My Gerd only got 10x worse after surgery, pain meds, and antibiotics. Then of course add in everyday stresses, all contributing to it.

On another note, anyone here have a lumpectomy / oncoplasty reduction? I basically had a large amount of breast tissue removed (DDD to a C). Plastic surgeon expects a sports bra worn 24/7 for 6 months. I am so itchy and red underneath I just removed it through the night. I don't think he realizes exactly what the radiation side effects feels like. I can't imagine what it will feel like in a few more weeks.

Blair2

Dectoremember - Doofuscat: Where in FL are you two? I’m in Lakeland.

I’m also Varian TrueBeam along with Accuboost. I will be on number 5 treatment tomorrow. Nothing is happening so far with feeling any heat or stings with the zaps, redness, pain, dryness or fatigue. Although I’m always tired it seems. I’ve been keeping a thin layer of Aquaphor on my skin anyway - just to stay ahead of it as much as possible. I don’t care for it as it seems like it’s nothing more than greasy Vaseline. Insurance companies under Medicare are picky. Mine is controlled by county only.

Sweetpea- I want to get away from this ordeal too. I find the more I research and think about it, the more depressed I get thinking of a recurrence, or wondering if I’ll really will die of cancer. I’d rather die of my heart disease than I would of cancer. However, I keep telling myself, the chances are always there for anyone - not just us breast cancer survivors, to die of any kind of cancer. My OM told me I probably had a higher chance of dying from my heart disease. I think our minds will relax once our treatments are over. However, you better believe I’ll be more afraid of my future mammograms! I don’t like reading cases of early stage cancers that have become metastatic a few years after chemo, radiation and hormone therapy treatments. It makes you wonder why we even bother getting treatment.

Doofuscat

Ladies I have another question for you. Is your breast sore on the "inside"? My skin isn't bothering me too much but my breast has gotten tender and achy. Not as bad as right after my lumpectomy but it is tender like it was about 2 weeks after the surgery. Not sure if its the seroma or not. I will ask my Rad techs tomorrow.

miranda2060

Early-stage cancers that become metastatic....wow, I'm sorry I have to think about that now. How about all the women who are doing great and living long lives after completing treatment?

Dectoremember

Blair2 - I am in Orlando.

Had my day 5 zap. I didn't feel the prickly heat like I did last week, nor am I as tired today. But it's only Monday so we shall see. Another headache again. Anyone have a headache after treatment. Still don't feel like eating much and I'm sure that's it. I had terrible acid again once I was in the position for treatment.

I hope everyone is doing well. Just four more days left in this week, lets keep on swimming.

JadeShiva

Day 21 of 33. Picked up a prescription for silver sulfadiazine. The Calendula just isn't doing it anymore.

Ladies, please do not neglect your underarm when you are applying whichever treatment you have been directed to apply. I'm sure it all varies based on where your beams are shooting but there's no harm in overdoing the area to treat!

I just really want to help any if you avoid what I now am looking at. No one told me to treat my underarm, or the back of my shoulder. I wish they had! So rub your creams all up into the armpit, and around your side toward your back to down below boob level.

I have read much worse stories here about radiation burns than what I've got. I've got rawness under the boob and a couple of tiny spots that cracked. The underarm and side boob burn though- owww.

Fatigue is real. I am taking several naps daily and you know, I can cope with fatigue.

I'm not looking forward to 7 more whole boob and 5 boosts. I'm going to finish though because my real enemy here is the cancer.

Almost done.

Blair2

Hi ya all,

This was also day 5 for me, and I had my first Accuboost treatment. Smashed horizontally (just like a mammogram), and then smashed vertically. It was tolerable, but seemed like the machine took forever to finish. An Asian man in a suit came in with a flashlight and this little mirror much like a dental tool mirror and checked the alignment of the applicators. It was a bit embarrassing having a man check everything, but he was older. I can’t remember what the tech girls said who he was, but he was sitting out by the screens when I left, so I assume he operated the machine. Maybe he was taking place of my doctor (?). I’ll ask tomorrow.

I did not have both treatments like I thought I would originally. I was told that these boosts are more intense than the TrueBeam is for my case. They have me scheduled this week and half of next for these boosts, so I think I’ll be on fire maybe by next week!

Thanks JadeShiva for heads up on applying the creams. I didn’t think about spreading it under the arm.

Dectoremember - hello neighbor,and glad to hear you’re not in as much pain. Let’s hope it will continue this way for the rest of the week!

Doofuscat - I felt minor twinges in tumor cavity area, but nothing bad enough so far for me to complain about.

Miranda - let’s hope we end up in that 80% of no recurrence!

DKK

Hello Ladies,

I had my mapping done today and it wasn't bad except I wasn't prepared for the pain across my back when holding the position.

After they finally got me in the correct position with my arms above my head. I had to hold that position through the simulation and until the Dr came in to give the OK. It was about a 45 minute wait and it was SOOOO painful. I tried to block out the pain but the tears trickled down one eye. My arms froze up and I it took a few minutes to get them down. I would suggest taking some tylenol and doing some arm stretches before your mapping. Tatoos were just a small pinch, not bad at all.

Doctor said I would start in two weeks. I was disappointed about the wait (sooner I start, the sooner I get done!!) She said no need to rush, more important to rest after chemo.

Thanks for sharing your helpful tips along the way. I am so glad many of you are almost done. I can't wait to finish this final stretch. 30 plus 5 boosts.

klvans

I've only done 3 treatments and my underarm hurts already. Not looking forward to this.

miranda2060

Also having some underarm pain. Marching toward end of week 3, the halfway mark!

Today was a little different: halfway through my treatment, there was a computer problem. Had to lie there a while as they rebooted the computer. When that didn't fix the problem, they had me get off the table, put my oh-so-fashionable green gown back on and wait while they called someone in. After a wait, they had me go to another room and machine to finish the treatment.

At least it broke the "Groundhog Day" monotony of the process.

littlebee72

Doofuscat....yes, my breast is sore on the inside. It is kind of like how your breast gets sore before starting your period. I asked my RO about it and he said it is normal....inflammation from the radiation. I still don't have to like it. LOL.

I just had treatment 11/20. I am a little red under my breast, but otherwise my skin is ok. Hoping it stays that way for the last 9!

Dectoremember

Hello Ladies,

Had my 6th day of treatment and saw the RO today.

For Doofuscat: I asked about the drying feeling, my eyes, nose, mouth etc. She told me it must be my imagination or something else entirely. It's NOT the radiation causing it, SMH. I've never been this dry and waking up through the night with needing to drink a full glass of water. Skin is holding up well, it is red but she said it's normal and to keep doing the aloe plant and Aquaphor.

My breast is also very sore, so is my underarm. After the zap it still kinda burns or feels like the heat of the sun on it. The RO advised me not to put any creams on until 2 hours after treatment. Skin is still "burning" she said from the radiation.

Still feel better today than I did on Friday last week. But she said I needed to rest (I'd be painting my walls or my kitchen cabinets if I could). By Thursday or Friday she said I'll be feeling it again. So, as I have the energy right now.......I'm going to go get some things done, then I'll crash.

Hope everyone is doing well.

Blair2 - how are you holding up with the boosts today?

Anonymous

Hey girls, I just completed 16 whole Breast rad and now I have 4 boosts for just the lumpectomy area. I have had a lot of redness and some pain on my skin-feels and looks like sun poisoning but my RA told me today that everything looked “normal” for this stage of the treatment. She also warned that the Canadian method of radiation causes more redness and irritation about two weeks after radiation is completed, so, yeah.. final radiation jab next Monday, I will still do a happy dance

Doofuscat

Hello everyone. I had my 8th out of 15 zaps today (Canadian method). Over 1/2 way done. Not sure why I am not getting any boosts to the lumpectomy site. Not that I am complaining mind you!

My skin is holding up ok but my breast is sore and I am still very dried out. I see my RO on Thursday. I will ask him about the dryness Dectormember and let you know if I get the same response. I feel sunburned for several hours after my zap too.

I was wiped out yesterday but not so tired today. I try to get as many projects done as possible when I'm not feeling like I am running on 1/2 a cylinder. On my wiped out days I want to sleep but can't. You feel like you are walking underwater. My teenager says I make less sense than normal on those days too. Imagine that!

Hope the rest of the week goes well for everyone!

Blair2

Ouch ladies - sounds like the soreness is hitting a few of you so early. Lizabeth, at least you have one more week left and healing will be the name of the game - thank goodness. Will you be on hormone therapy?

My treatment 6 was today, the same as yesterday with Accuboost. I found out the Asian man in the suit was the physicist. I thought my RO would be the one operating these machines, and then I thought the two techs were doing this, as I never saw who was behind the walls while being treated. It has been him operating both machines apparently. Ok, so you learn something new every day. I had to go out of my way seeing my breast up on the screen, as I walked by, I stopped and asked if the darker areas on the X-ray was where the tumor cavity was. (I didn't get the physicist's name, but he said yes, that's where the beams would be going). I still wish I could see this as it's done.

So why does a physicist wear a suit instead of scrubs or a white coat? I guess it doesn't matter - trying to figure it all out.

I don't feel anything yet, but I was really tired after I got home. Had to get some groceries after treatment and crashed from fatigue.

sweetp6217

Blair2: WoW! I'm not sure I would have been able to go through with what you are. A man in a suit in a medical setting?

Anyway, I just completed 2 weeks or 10 rads. All of the techs are young enough to be my kids (and I don't have any) and some are students. The lower half of my breast looks like I slept on a warm bumpy surface.

The vacation won't be until summer, but I don't think I can wait that long. Are parts of Colorado really a mud bath in the month of May?

Blair2

Lol - I have to figure this suit thing out. A physicist makes over $100,000 a year - I guess if he wants to look spiffy, he certainly can, but does seem out of the norm for a medical setting. The contrast in scene is a bit humorous. A woman sitting in an office chair with her boob stuck between clear plastic plates with a blanket caped over her shoulders, (She should take her wig off to make it even stranger), and a man in spiffy suit hooking up wires from a radiation robot to the plates. Also checking everything with a dental type mirror tool and flashlight. Not an everyday scene!

One of the young techs asked if I would like a towel put over the plastic plate - I guess to stay modest, but at this point after all the poking, stitching that a plastic surgeon sees, touching by techs, and what all the other doctors see - I really don’t care who sees my breast anymore! I’m just an old lady. It’s like what I told my plastic surgeon after he made some comment that he would make me a sexy 70 year old women (with breast reduction), - I said I was way over trying to be sexy at my age. Just get me over this crap shoot

klvans

LOL Blair you have a good sense of humor! You are a feisty lass and that must mean you're feeling better these days.

Blair2

Yes - I guess this is my normal. I try to look at life in a humorous way, even though I know breast cancer is not a funny thing for us.

I forgot to add that the physicist wears these perfectly round gold spectacles. He again was wearing his suit today - I best leave it alone as to why he wears his suit. Today was the same for me, but the physicist came in with what I think was a gyger counter checking the tubes that carry the radiation at the end of my treatment. That seemed a bit intimidating to me. Do these things have to be checked for leaks? Would they tell you if it did leak? Yikes! Maybe we patients should be in one of those white radiation suits! When the TrueBeam is on, have you noticed there’s always a warning sign lit up on the wall? The techs stay behind a protective wall, while we are completely exposed. I feel with all the X-rays, mammos, MRI, nuclear stress tests I had this last year, I should be glowing. It seems like too much exposure

klvans

Personally I hate radiation. I dislike the vulnerable feeling of my hands over my head and my breast exposed. Techs are polite but I don't connect with any of them. It all feels impersonal. Plus the whole idea of radiation spooks me. Just hoping for minimal skin damage and no harmful long term effects.

Veeder14

Blair2

I was told that the beam is at least 100x stronger than a regular xray. And for regular xrays patients wear a protective thing during the xray. I wonder why the exposed areas aren't covered with one of those during breast radiation. I will be facedown, I wonder if the scattered rays get near my face. This is sounding good.

Blair2

All I know is that the beams aren’t suppose to reach your chest plate (or heart/lung area), so I wouldn’t think your face would be in danger at all. They shouldn’t be scattering.Face down means just your breast is reached by the beams under you. I suppose as the machines are operating, the techs are trained not to be in the area for routine safety. I wonder if any of these machines have malfunctioned during a treatment. I suppose they just suddenly shut off if they do. I’m beginning to wonder if a mastectomy would have been a better choice. However - I know some women have had a chest wall recurrence after a mastectomy, and that would be really risky if they were radiated that close to the heart and lungs. This whole journey is risky, let’s face it. Long term side effects are a problem for many, but the the alternative isn’t good either. Lots of research, better drugs - hopefully a cure will be found so that a person doesn’t have to be tortured with such harsh treatments.

People are having their pelvises radiated for prostrate cancer, uterine cancer, and lung cancer - no telling how dangerous that is - especially with lungs. (Think of the bones in those areas that are hit by radiation). I know I’d rather have just the fleshy breast beamed.

JadeShiva

23 regular treatments down. 5 regular and 5 boosts to go. I had my weekly visit with my RO. He is giving me the rest of this week off. He said that over the next 2 days, my burning is going to get worse but then it will start healing. Once the healing starts, it won't get as bad again because the skin has started to get used to the rays. I believe him!

I'm really tired. It's hard to get out of bed. The fatigue ramps up for a couple of hours but if I'm busy doing things it starts to fade by evening.

Naps. Lotions.

Hang in there ladies. Almost done.