Winter 2015-16 RADS

El_Tigre

just today the machine reminded me of a music box with the moving metal parts inside aligning

marijen

New thought on rad's - does anyone feel better with radiation? Has anyone been offered acupuncture? I have but haven't had a chance to ask yet

morelandks

Hi Marjen - I feel better (so far) on rads than during chemo, for sure, but I can also feel the cumulative rads starting to drag me down, so overall, I'd say no, not feeling better on rads.

Also - back to the bad taste in mouth thing - I mentioned to my RT that I have a metallic taste in my mouth, and she said she has heard that before, so apparently we're not imagining things

mdoc524

Wow Ladies my head is spinning getting caught up - you all are Awesome!!

Today was #9 of 34 for me - pink is turning to red now and my back shoulder blade is really itchy & also pink .. RO says all normal! Forgot to ask her about the feeling like a lump in my throat for those that also have that - at times feels like can't swallow - not sure if it is from the Zaps to the Nodes - the left side of my neck is pink too - who knows! Also I too take Ativan at night since chemo & just continued - agree with everyone - get meds when needed! I am also taking Gabapentin for neuropathy and hot flashes (chemopause not fun) - OBGYN offered antidepressant (Effexor) for the hot flashes - I might get it as the Gabapentin just not cutting it! My biggest complaint is still the hit a wall fatigue which is I think now a combo coming in from chemo and now in Rads - it is so debilitating at times but will "warrior on"!

Welcome Welcome Katja and 7 of9, and JuniperCat - I got your updated info! Sorry you all have to be here but glad you found this awesome group!

Congrats 2mnykds - WooHoo - now onto healing for you!

JerseyGirl - you are rocking! I echo your sentiment the support here is just awesome - thank you all for your sharing and support..

KateB - Congrats & Good Luck with your house - how exciting and a nice distraction from this not so fun crap! And HaHa on the giant Kitchen Aid description - made me chuckle and gives me something to smile about when staring at my machine - yes they are very intriguing!

Duzy - My shoulder and side are starting to really bother me - did your RO offer any tips? Mine today just said to try and stretch each day & take Ibuprofen before coming.. already knew those things! I too am more red than pink a little early - RO was not concerned and just said to keep using cream and she can prescribe something when needed..

Marijen - glad Day 2 went better for you and hope the rest is easier for you - get the meds if needed!!

Tessio - love your "squirming like 3rd graders" reference as my twins are in 3rd grade -- I drink 70-80 ounces of water a day since chemo and just kept up with it so can relate to the squirming .. Twice now my name has been called and I was in the potty..

Biscuits - 1st time I am hearing about an incline board - what is that for?? Hope all is going well!

Twnkltoz - I am on #9 and my back directly behind clavicle nodes and into shoulder blade is so itchy already - hoping that itch does not travel to the front! The Calendula cream does give temp relief .. Also no cough here but I do have Sinus crap and increased heartburn at night - trying to watch what and how late I eat - hope you are not getting sick - a lot of stuff going around!

luzeelu - got your updated info - I am sure you are glad to get started - good luck next week on the 18th

Kimmer - about the time on the table for me it is a total of 15 minutes from the time my name is called to the time I come off the table.. I get 4 Zaps 2 to the Clavicle area nodes 7 seconds then 12 seconds and then a Zap from the High Right down to left breast area 13 seconds and then last zap comes from low left straight up - that one is 15 seconds - all by the way I count anyway! most of the time is spent adjusting me in between each Zap ..

Lindyc - no weird taste issues here -only had that during chemo and do not want it back - hope yours goes away quick for you and the others that have that!

SailorGirl - hope the Ativan helps and you get some answers .. I so hate when the Dr's dismiss symptoms as not being apart of their treatment when it is not a "common" side effect .. how do they really know?

One more day til the weekend and 2 day break! Stay warm to all those in the path of the Artic below zero temps! Today was freezing and I don't think we have the Artic blast yet!

Hugs to all

Mary

mdoc524

Marijen - I have not been offered Acupuncture but want to look into it for the chemo Neuropathy and sudden menopause - not sure how to find a good one in my area!

El_Tigre

I get a bad taste in my mouth too afterwards. I think mine is the mouth piece and i chew black licorice gum afterwards when i notice it. I have not been offered acupuncture but it was on the hand outs during the initial visit and there's a door at my rads office with the word acupuncture on it. hmmm

VickiRides

My cancer center offers acupuncture through their Integrative Services department. I had treatments throughout chemo to help deal with SE I was experiencing, especially neuropathy and hot flashes. I plan to continue through radiation. I truly believe it helped me handle chemo as well as I did.

I had my pre-radiation class yesterday, which turned out to be just me and a nurse. A radiation tech came in with pictures of the machine to explain what I'll see and what the machine is doing. The nurse's advice pretty much echoed what I have read here:

Nutrition - eat extra protein, stay hydrated. The goal is to maintain weight.

Skin - Use lotion to keep the skin moisturized. I can expect skin changes to start in week 3. They want the skin to get pink. If it gets painful, they will have special lotions for me.

Bolous - Used to direct the radiation closer to the skin surface.

I will start on Feb 22.

El_Tigre

on rads I also heard to walk or exercise for at least 40 min per day if you can. Whether it's all at once or broken up throughout the day to help with fatigue.

sailorgirl15

Hi Ladies,

Just back from today's rads. I saw the RO and was very specific about my stomach issues, the pit in my throat I sometimes feel when I swallow, and not being able to eat. The nurse asks the same questions as she does each week. Today I got more aggressive with my answers.

N-Do you have pain?

Me - a little

N - On a scale of 1 - 10 how bad is it?

Me - I show her my red sore chest. "It hurts and it bothers me. I have a very high pain tolerance. I birthed my three babies without ANY pain meds and my 2 boys were 9 lbs! So for me the pain is about a 4 but for many it might be an 8."

N - any nausea?

Me - yes. I feel nausea a lot. My stomach feels crummy and I am burping a lot.

N - Have you thrown up?

Me - NO, but I am not someone who throws up. I feel like I could throw up but I do not. I have hardly ever thrown up. I still feel nauseated. I have burped a lot and a few times and thrown up in my throat. I am 6 weeks past last chemo and I thought this was from that but my stomach is feeling worse and it seems to hit a few hours after rad treatment. I am not as bad on the weekend and actually better by Sunday. I have a pretty iron stomach...so this is really discouraging.

She trots off and in come RO.

RO- I hear you are having some problems.

YESSSSSSSS!

Guess what!! He said that all these symptoms are from the rads!!! Since I am having whole breast treatment stray rads are hitting my stomach and esophagus and that is what is causing this. THANK GOD! I AM NOT CRAZY!!

So, bottom line, he went to get his physicist who listened to my symptoms. (She was about 28 years old - I guess she is really smart!!) She agreed that these SE's are from the rads and she will re-write the program to avoid more of my stomach and esophagus. Meanwhile, I will do the 7 boosts which are just to the small area where they did the lumpectomy. This is less intense and will give my chest skin and my stomach a chance to recover. They were going to do the boosts at the end, but this keeps me on schedule and I will still finish on the 29th.

I did take the Ativan this morning and he thought that was a good thing to do. It seems to be helping. I am not really that fatigued and I teach half time, so it has not really affected my life - just my eating!! I have lost about 11 lbs which is a good thing but I would like to be able to enjoy my food and eat more than 3 bites without feeling sick!!

Bottom line - be aggressive with reporting your symptoms. Do not feel like a wimp. It is all very scary and really makes me upset to think my stomach and esophagus were getting zapped even though he said they wrote the program to avoid my lungs and heart...guess I didn't ask about the stomach and throat!! UGH!!! I only have 5 more whole breast (and whatever else the strays are hitting left).

Hang in there ladies. I hope you are all doing good! Looking forward to the weekend!!!

marijen

So I was told by RO that there would be no strays. I don't usually get nauseated but have been feeling queasy since first day. A good reason to eat less. It's good to know they can make adjustments

Brimton

Marijen- I sure know how you feel! I don't want to do this thing! But what choice to I or you have. Music definitely helps. You could try Ativan. The drink your fluids that helps and the creams. Visualizing helps too just close your eyes and go somewhere else. We can help you through this. I near the end of week two. I feel a bit "lazy" afterward but if I rest feel better. My chest is a bit pink that's it so far.
Everyone-- hang tough! And I don't mean by your boob. HEHEHE
Thank you for being here for me.
I do go from feel pretty good about my outcome to feeling nervous. I have been doing some reading on how radiation works. It helps some but then more questions come to mind.
Duzy- We are twins in this thing. 8 down 22 to go!

MissV123

Twnkloz ! Yes, I started coughing about a week ago, thought it was a cold, but its not...just a yucky wet cough from time to time...I take a cough drop with me to Rads in case I start on the table....but havent done that yet.....

As far as my teeth and dry mouth...my Dentist gave me an RX for extreme fluoride, its called Prevident Booster Plus, one dot on the tooth brush every night....hope it helps...my mouth is so dry all the time..and my taste is getting worse....

As far as anxiety med....ladies,.... Im living on Xanax.....take one in the morning and one when I come home.....takes the edge off......whatever works.....and the monster machine broke down while I was being zapped yesterday, Just stopped dead while going from one side to the other....I was hoping it wasnt going to zap me somewhere where I shouldnt be getting it....but the techs ran in and had to reset something....if not for Xanax, I would have ran out the door.....

Congrats to all my gals that are finished....Ring that darned bell ! You are brave and deserve it... We dont have one, but when Im done, I will take a pic with the staff.......

Fatigue has hit ! Im great in the morning, get dressed up , makeup and all, and by noon I look I just woke up.....and my emotions get to me around that time too...so treatments are at 2:45, and so I just head home after that.....thank God my DH is here to pick me up....take care of the house and feed me, cause Im useless at night....But I will Never Give Up and Never Surrender....I am determined to finish these treatments....and Warrior On.....

Hope everyone has a peaceful night.....goodnight.....sleep well....

morelandks

Sailorgirl1 - thank you so much for reporting back about your Drs visit. I have sometimes felt shut down by my RO - almost like she didn't want to hear about anything other than skin symptoms. After hearing from you I am going back to speaking up! I truly believe that my doctors have my best interests at heart and want to be helpful, so why on earth is it so hard to "get there"? I think navigating the info and confusion is a huge chunk of what makes the whole BC process so painful and scary

Duzy

Such a fast moving group and such wonderful support and advice. I know for me reading this thread and sharing is helping get through it. Brimton do you also get the bolus for any treatments? I will be thinking of you each day and we can count done the days together. I believe MDoc524 is one day ahead of us. Since I started turning from pink to red I have increased the amount of times I put lotion on. Can't wait for the 2 day break over the weekend.

I got a laugh when reading how everyone focuses on the machine. I have to keep my head turned to the right and every time the machine comes to that side I watch the forks (metal) coming down like piano keys. But I also know that once it moves back to the other side I am then done. We learn quickly how long each area takes.

One more day - congrats to all who are done and to the rest who are closer to being done. Rest, hydrate and Happy Valentine's Day weekend to everyone.

Connie

KateB79

Man, I'm bummed that my fancy goggles block my view of the accelerator! I want to see the forks. . . . I can hear them, but that just isn't the same. I also want the techs to take me into their control room and show me everything, but I'm too scared to ask. So far, anyway.

I am such a geek.

To prove it: I did the math, and after tomorrow, I'm 28% done with rads. Unless I decide to do boosts, in which case I'm 23.3% done.

octogirl

Sailorgirl: I am really glad to read your account of your RO visit; yay for being assertive about your symptoms.

Kate: I'd be willing to bet the techs would be happy to show you inner workings. My techs would have appreciated the geekiness...

Octogirl

JuniperCat

Hello! Today was my first day at radiation. It took a long time for the machines to get set up (I'm in the "prone" position to avoid damage to heart & lungs). The radiation beam part itself seemed to only take about seven minutes or so. All seemed to go fine, however, I am noticing that the entire lower half of my breast is bright pink. Is this normal for the very first treatment?

Cubbie2015

Sailorgirl, that's really interesting. I'm glad they were able to do something to help you out. Sometimes I think they don't want to tell us all the possible side effects because they don't want us to get so scared we don't do the treatment. But then when we do have a side effect, we don't know what's going on. I think it's better if we're informed.

MissV, I think I would have leapt off the table and run down the street if the machine had a problem while I was in a treatment! I know there are all sorts of safety features, but good grief!

For anyone who might run into the symptoms I recently had, the tightness and pain I experienced about 10 days after finishing rads went away as suddenly as it had come, a couple of days later. I saw an RO in the practice just in case, and she said everything is fine. She's not sure what happened - a side effect of healing? overdid it at work? Maybe I just slept on my arm funny? I seem to be fine now. Well, aside from the fact that my skin is all dry and flaky!

TallnTerrific

I have reported the bad taste in my mouth and nausea on this board before. It seemed the worst during the third week. I got to the point that everything I ate tasted the same bad way. But I had the stomach upset day and night so it seemed that eating might help--nothing else did. But I would take a couple of bites and yuck that same taste. I slacked off on the ibuprofen and aleve to see if the stomach improved and stopped taking everything like Prilosec and tums and really that was the best. I still get it a little from time to time. My RO denies it has anything to do with rads. Oh well. Since many of us share this symptom I think he is wrong.

Also I have been having pain on the non rad side of my chest - empty TEs are no fun and my shoulder and arm hurt such that I can't reach up or over to the side for things. Since it was the right side I had learned that the RO would not help me and I went back to my wonderful breast surgeon and she got me an order for PT. I go tomorrow for the eval. I am hoping that they can help me without to many additional appointments. I finish my rads next week! Just five more to go!!!!!

About the actual time on the table I close my eyes and pray for Protection for all of us on this board when I breathe in and thank the lord for the protection when I breathe out. It had been a meditation that calms me, reminds me of all of you and turns a potentially stressful treatment into a nice little rest. It has been harder since my shoulder started hurting this week, but I am almost done.

Pea brain I do understand you fears. When I started having the shoulder pain and my hip began to hurt after doing the elliptical I was so afraid that the cancer had spread to my muscles or bones. I don't want to be a hypochondriac (like my father) but being tough like my mother got her two rounds of breast cancer, diabetes and back pain such that she has trouble walking. It guess doing some PT is proactive without being overly self absorbed by the possibility of cancer.

But what I really want to know is when will I really feel that I am OK. Finishing the rads means starting the arimidex or other pill. None of it convinces me I am cured of anything. I feel like cancer is something I will always have, but the question will be am I taking advantage of everyday I am alive and celebrating each day. I don't know for sure. But I don't feel some big relief that the rads are done. Does anyone else have this on their mind?

marijen

We should ask the ROs when was the last time they had radiation, when they say it's not the radiation.

lindab142

Here I am ringing the bell! It's been since 1/22 that I've been done, and I'm still sporting my men's white T-shirt and using aloe and a soak. The redness is gone, Thank G-d. Under my boob, it's a little pink, but the rest is almost normal. I'm fatigued a little during the day, but have problems falling asleep at night. It may be anxiety.

My boss is letting me work from home today because yesterday I was in some pain. I was able to work 3 full days this week, so it's getting better. I think part of the issue is jealousy from co-workers who can't work from home and the policy which doesn't address illness. I'm a rebel at hard, but think I need to "follow the rules" from now on.

Thanks for all the support. I haven't had time to read through everything, and now I have to work.

With love,

Linda

morelandks

Congrats Linda - and thanks for posting the pic! It's great to see your smiling face

morelandks

TallnTerrific - I too wonder when I will feel ok, sometimes I'm haunted by this question. But what I really wonder is what is my "new normal." I suspect that I will not return to the pre-BC me (which in some ways is a good thing) and I have some anxiety around which physical symptoms will get better and which I'm stuck with. When I get worked up, I, too, pray, and I try to bring my focus back to how He is caring for me today. All I know for sure is that a year from now we will feel a whole lot better than we do now, it's just a question of how much. PS - how tall are you? I'm 6'1"

KateB79

Congrats, Linda!

Re: new normal. . . . I wish there were a magic-bullet answer. The reality is that "normal" is different for all of us, and "new normal" is elusive to define. For me, chemo knocked me so hard onto my ass that "new normal" meant going to work, coming home, and parking on the couch every day. It was difficult to maintain a social life; my hobbies became replaced with television and reading mindless novels. . . . But that's OKAY. It's all okay. What we have to remember is so deceptively simple: do what works.

For example, I'm lamenting the fact I simply can't exercise as much as I used to, and as a result have lost TONS of muscle mass--to the point where all of my pants are way too big. I was a powerlifter until my diagnosis, and it makes me sad to look like such a waif. But then I remember that overdoing it with exercise during rads, just like during chemo, will make me feel horrible. So I do what I can, knowing that all of this will eventually lead to new hobbies and habits.

morelandks, I'm 5'10".

It's Friday! Yay! Seven down, eighteen to go. Enjoy your weekend, all.

El_Tigre

Happy Friday! 3-day break from rads for me since Monday is a holiday!

today is 13/28 and so far the only SE is a bad taste, a lill pinkness, and my getting tight right after rads. I asked the RO and she said that's the radiation and to stretch my chest more. Thank you TE LOL

Catfurr

Luzelu-I hadn't heard anything about not taking multivitamins. Just antioxidants. So many conflicting opinions! I tried melatonin the other night, woke up a lot, ended up with an Ativan at 4a. I'll try it again at a higher dose tho, but Ativan is really what's got me thru all of this.

Twnkltoz-I developed a cough and a sore throat. Still have the cough, but RO said sore throat was from scatter near clavicle rads. Having a dry mouth didn't help it either, so I used cough drops during the day and biotene at night.

KateB79-I suspect the Ativan makes me more teary, but so does everything else. Some days, all I do is just fight back the tears. I was told to expect it tho once tx was finished. The reality of what we've been thru hits and the What now question is there. The machine fascinates me too! I thanked it every day for doing it's job and to zap anything that shouldn't be there!

Mdoc524-I had problems with my shoulder at first, went to PT. She suggested more stretching, felt that it was from surgery and my arms being over my head for extended period. It did get better, hope yours does soon!!

I'm 1 week past rads, my skin is still red, but more itchy than painful. They said it will continue for 2 weeks, then start to improve. I have several little itchy sores too. Still using Triple B on most of my breast and Aquaphor on the clavicle area that was blistered. The fatigue truck seems to be circling and slamming me pretty regularly! My legs ache all the time and I haven't even started arimidex yet. Oh, AND I have osteoporosis now! Ugh! I really don't like what I'm reading about those drugs!! Nope, this will never end, just hoping it becomes manageable.

luzeelu

Catfurr, actually they said it was vitamins A, C and E to avoid, but those are all in the multivitamin I take. B vitamins are OK and I think I can keep taking the Biotin, which I just started to try to help my weird chemo fingernails and maybe also to help grow some hair faster. I really want my nose hair back! This constant dripping is driving me nuts!

LMN

This morning I had my 41st of 44. I am so close to the end of radiation! My doctor said I can put hydrocortisone on the itchy spots that are not part of the boost. He gave me carragauze to keep in the fridge for helping cool the warm spots. My cabbage accidentally froze in the fridge and is now hard to flatten for my totally flat chest on my right side. The cabbage result works ladies! Monday my 11 yo daughter will come see me ring the bell at 3:30!!!

Twnkltoz

congrats to those finishing this week!

I had a miserable night. I threw up several times and generally felt awful, and then I couldn't sleep. I feel better now, thank goodness. However, while I want sleeping I counted days and realized I only have 30 treatments, not 33. I knew March 2 is my last day, but I'd been pessimistically assuming I'd have to go the longest number. My RO said yesterday my skin is progressing well so we shouldn't have to extend the treatment. Yay! That means I hit the halfway mark on Wednesday!

morelandks

hooray for half way tinkltoz! Hang in there - I'm sorry you had a rough night