Winter 2015-16 RADS

biscuits

Yesterday was my second treatment. I was on the table like twice as long as the day before and wondering why it was taking so long and nothing seemed to be going on. Finally, one of the techs came in and asked me to sit up and we were going to re-position me, as they weren't able to line me up quite right. This went on again, until they came back in the room and said "Oops, we found the problem. We forgot to put the incline board down. We don't use it too often, so it's easy to forget". I can tell you that I will make sure that it is there every session I have, from now on, since I know what to look for. Is anyone else using an incline board? My RO tells me it is to open up my neck area better. Anyway, met with the doctor afterwards and finally got the rundown on SE's and moisturizers. Eat plenty of protein, hydrate, Aloe Vera three to four times a day and then vaseline before bed. All moisturizers slathered from below breast, up to neck. over to middle of sternum and around the side, under the arm and hubby must slather on that side on my back. LOL! I can slide right out of bed. After second treatment, half of the breast is already pink and I am not surprised since those girls haven't seen the light of day in years...

Twnkltoz

Those of you itching, when did it start? Three weeks in (wholly cow already??) And I'm quite pink but not itchy yet, thank goodness.

JerseyGirl22

#18 done today!!!!!! 7 more regular rads and then 5 boosts....Friday get to have SIM for my boosts... Yay! I get to sleep in a little on Friday... The drive in is worse than the actual treatment... If there's no traffic, it takes me 20 minutes. However, in the morning, since I have to be there by 8:20, it can take anywhere from 45min-1 hour or more... Gotta love traffic in the northeast corridor!

Sailing through the halfway mark, ready for this week to be done! I'm just a bit pink at this point, and a bit tender under my arm. I'll take that any day.

Rock the Rads, peeps! Head up! Warrior On!

luzeelu

Finally have a schedule now. I had the setup and tattoos and CT scan yesterday. Looks like I'll have a bolus so not sure how I feel about that. I go back next Wednesday for "imaging" and my first treatment will be on Thursday, Feb 18. They're going to do 28 of them. No one mentioned anything so far about boosts.

I was told that they will give me aloe gel but I'm not supposed to use it until after the 5th treatment and then use it twice a day. Seems to be the only thing they want me to use. No dietary restrictions mentioned other than not taking my multi-vitamin during rads. B vitamins are OK.

I've been taking ativan at night to help me sleep. I was having sleep issues prior to this diagnosis, something I had never had problems with at all. The ativan has been great. I take a melatonin when I go to bed around 10:30 and then wake up and take the ativan around 1:30. Before that, I would just lie there awake, getting more and more frustrated about not being able to sleep. After I take the ativan, I'm able to sleep fairly well for another 6 or so hours. Sleeping makes a HUGE difference for me so I'm grateful to have this drug right now. Not sure what I will do when all the treatments are finished, however. I don't seem to need it for anxiety. I felt fairly relaxed on the table yesterday and they were great about helping me find a comfortable position.

I guess I'll be glad to get all this going finally, other than all the extra driving. Also still dealing with lingering chemo SEs, but they seem to be gradually (ever so gradually) diminishing. Still some fatigue. I'm certainly not running anywhere!

Glad to be able to read all the great info here!

marijen

Ok today was better - there and back in one hour. Only 31 more to go

Kimmer33

Tessio, i am with you on the ativan, i am using it nightly until my treatments end, and then we'll see - survival mode, need sleep!

I am curious, after reading through this thread for awhile now, why some/most of you are on the table for so long? I start on Monday, and my nurse told me i would only be on the table 4 minutes max. Is it a stronger dose i am getting then? I only have 16 treatments, so maybe that's why.

Kim

Duzy

Ok officially starting to freak out a little. I had treatment 7 today and I am starting to turn from pink to red. I met with the RO and nurse today and they said most times symptoms start around treatment 12 so I am a little early. They did not give my any suggestions to help it just said everyone is different and no way of knowing how we will react. They also said the lotions and creams are really just a soothing aid and does not have any control on whether you will have skin issues or not. It may be a long road it is starts to blister or peel. YIKES

Connie

morelandks

Wow this is an active board! I hadn't checked for a couple of days, and it took me an hour to get caught up. I know we are each alone in that room with the machine every day, but knowing there are so many of us going through it at the same time is so comforting - makes me feel like I'm part of a team! Thanks for being so communicative.

Today was tx 16 out of 33 (which includes 8 boosts), so, along with JerseyGirl22 I am celebrating half way - hooray! Twnkltoz and Tessio - I think you are also on a similar schedule?

So far, my skin SE's are very mild (just beginning to pink up, a smidgen of itchiness near my collarbone, and some soreness down my side). I have however had occasional shooting pains through my breast since week 2 - these occurred near my scars, so I wonder if its the rads causing things to pull apart or if the beams affect scar tissue differently. In any case, these pains are annoying, but not debilitating, so I count them as mild also.

Re: Treatment Time: On a normal treatment day I am on the table for about 10 minutes, 6 of which are the actual zapping. However, every 5th day they also take x-rays (to see if the beam angles need to be adjusted to allow for any tissue changes that occurred during the last week) - on these days I am on the table for about a half hour. Which brings me to the Drugs topic. . .

Re: Ativan: I have back problems and continuing nerve pain in my arm from my surgery, both of which make hanging out in that ridiculous position on the table a bit of a challenge (they have me face up, arms overhead in arm rests, lying on a very hard muscle-spasm-inducing surface). On my first X-ray day I ended up sobbing in the arms of my tech - a very nice guy in his 50's who has been doing the job for 20 years - and there he was whispering sweet nothings to me in is strong Chicago south side accent (he even called me "doll" - who does that anymore?). Not my most dignified moment, to say the least! Anyway, my RO prescribed Ativan as a relaxant - she told me that it would help relax my mind and my muscles and that they use it for a wide variety of patients who have trouble being on the table for whatever reason. I take it only on X-ray days, as it also makes me slightly nauseous and dizzy (which is kinda fun on the table - makes the table feel like a boat swishing back and forth on the waves!). I agree with all of you saying "just do what you gotta do to get through this!"

Re: The Fatigue Truck: It's definitely hit me too - and I agree that it is strange. After months and months of only sleeping a couple hours at a time (surgery, chemo, blah blah blah - I know you gals can all relate!), I am now sleeping most of the night, and sleeping hard. But when I wake up, I am still exhausted and spend most of the day just drooping through. I do have bursts of energy, but I am learning that they are not signals that the fatigue truck has driven on. I am trying to continue to exercise on occasion (I am a total sloth, so getting 30 minutes of simple walking on my elliptical machine is a major feat!), and when I do, it does make a difference - I have more stamina and the drooping isn't so pronounced. Also, I am trying to pace myself - not take on too much for any one day. I definitely do not have this one figured out.

Re: Palate / Diet: I too have noticed a strange, metallic taste in my mouth the last couple of days. I don't see how it can be directly related to the rads, as none of the beams are going anywhere near my teeth, but I also can't think what else could be causing it at this point. Anybody else had the same thing and/or have any insights? For diet, my docs have said "normal healthy diet" and "avoid anti-oxidant supplements" (but they are ok with antioxidant foods - not sure why, but all they care about is not taking the pills). My WBC has been in the low end of normal, even during chemo (when it dipped a bit below normal but not much), so maybe sushi etc is not as much a concern in my case.

I pray for peace and joy for each of you - I am finally at the point in this process where I believe I will, in fact, get through it, even if the parade of horribles has yet to cease. I know you can get through it too.

Kim (morelandks)

morelandks

Hang in there Duzy! My understanding of the creams is that they help with hydration, which helps the skin stay intact and get through the bad sunburn in better shape. So keep lubing up!

phoebe58

Twinkltoz - my itchiness only started during this [my final] week -- suddenly a lot more brick reddish above and below and beside actual breast [which is still pinky] and I might try a benadryl, as I waaaannnt to scratch so bad today [two left]! Rad tech said to talk to dr re hydrocortisone cream. He also said, and I quote 'I've seen far worse -- you should do ok'..... I said I would take that as a compliment.

I have been taking Zopiclone to sleep ever since my diagnosis most nights. Yes, Kimmer, I agree. Sleep is much needed. Ativan makes me feel weird. Although I am feeling fatigue now, it isn't helping me sleep -- just making me not care that I now have a bit of a messy house.....

Marijen - hope the black-eyed peas don't amount to a hill of beans. Hang in there.

Biscuits - I am on an incline board too -- not sure exactly why ...as not getting radiated above clavicles so no neck to open up, and I reach over/behind my head to hang on to handles.

Off to slather on more cream, and have a glass of wine!

2mnykds

Finished treatment on Monday. They had a bell to ring and after that I went out just hugged my hubby and cried. Didn't realized it was going to be so emotional at the end. I'm still having skin issues but since my last 4 treatments were boosts I'm hoping they clear up quickly. Thank you to everyone on this board it's been a blessing to read these comments and help me throught this bump in my life. To those still in treatment there is a light at the end. Hugs to all of you

HappyHammer

ElTigre- Your comment_ " I have crowd and claustrophobia anxiety." (I am very sorry that you do!) made me chuckle- I had to take Ativan every so often to deal with anxiety for rads/PET scans, etc.....my "crowd" was usually completely hallucinations...I would be talking and DH would ask what I had just sad and I would realize that the people I was talking with were not really there....surreal to say the least but thank goodness also not scary so I could take the meds and be ok as needed. Just funny.

HappyHammer

2manykids_ YAYAY for finishing rads....such an emotional thing---YOU DID IT!!! warrior on!

HappyHammer

luzulee- glad things are going well and that you have the Ativan to help you sleep- BC is no joke! Sleep is recuperative. Hugs to you!

LindyC

I have 4 zaps left out of 28.

I have a horrid aftertaste after eating or drinking anything. It differs from the chemo taste change as it doesn't affect how anything tastes, it just kicks in with a bitter metallic aftertaste. Ugh..its awful. Asked the techs and they said it isn't something that usually happens but nothing is certain. I see my RO tomorrow and will ask her. I'm hoping this is temporary.

JuniperCat

Hi! Can you please add me to the list? I start my first rad treatment tomorrow. I'm already feeling itchy ahead of time! Sigh

Twnkltoz

has anyone developed a cough?

15 down, 18 to go...

Welcome, @JuniperCat!

sailorgirl15

Lindy - I have 6 left out of 28 (and then 7 boosts) and I have taste issues too. I kept thinking the nausea feeling and bad taste and inability to really enjoy food was a SE from chemo but then I was reading another board and the ladies were saying they had taste and nausea issues which they realized are from rads! My RO asks if I've had nausea but only seems concerned about whether I've thrown up - I haven't but feel like I could a lot of the time!

I am going to ask more tomorrow and be more insistent about what elseI can do. I'm so glad that others are experiencing this (well, I don't wish it on anyone but at least I know I'm not crazy and it most probably is the rads not a SE from chemo!)

Re: skin issues - My RO recommends coconut oil which I've been using as well as Bag Balm and aquifor, etc. My chest is getting really red and tight.

Thanks everyone for your posts - I have been catching up with all the info and news. I will start taking my Ativan again to help with the way my stomach feels! Good idea I learned from your posts.

Tessio

Kimmer33 I don't know why I'm on the table so long..... 5 zaps total. In between zaps, the techs come in and adjust and mark me. On the last zap, the techs add a part to the machine individualized for me and change it to electron radiation. This zap is pointed at my heart and is not suppose to go deep or touch my heart, but it is unnerving to see it directed there. I'm sure all my medical terms are incorrect.

Today will be 14/34.

Almost Friday!!!!!!

shannondunlop

Good morning.  I have had this, also, as recently as yesterday and it has been about 3 weeks since i finished radiation.  My doctor said this is totally normal.

morelandks

congratulations 2mnykds - sending big virtual hugs back to you

KateB79

So much to catch up on this morning! Things really do move quickly through rads, especially after chemo, which felt like it took forever.

Re: bolus . . . There are positives and negatives. One big, big positive is that it eliminates "hot spots"; it disperses the radiation to a larger area of skin and chest wall. A negative is that the skin is receiving more radiation, so there can be more issues there, but most ROs are committed to getting us through with few lasting problems. I was told worst-case scenario and, though I hate the idea, things could be a lot worse. (They'd delay treatment for a couple of days and teach me how to give myself saline baths at home, along with Silvadene.)

Re: drugs . . . I still haven't taken any Ativan for rads, though I do have some shortness of breath, which has historically been a symptom of anxiety for me. Ativan is great--it does what it's supposed to do--but it makes me overly-emotional the next day. I have a family history of addiction, too, so I'm careful with benzos. That's totally just about me, though, and I fully support every single one of us taking the medication we need to feel good (or at least better) through all of this!

Re: skin . . . My nurse also said that it's usually around the 12th treatment when we start to "pink up," but everyone is different. I tend to get pink right after zaps, but then the pink fades by the next morning. I'm sure there will come a time when it doesn't fade, but I'm committed to not freaking out when that happens.

Re: fatigue . . . I have my tx at 7:45 (unless the hospital shuts down the main generator, haha), and by about 4pm I'm ready for a nap. Yesterday I took a 10-minute power nap in my office before my last class, and it worked. I was in bed by 9 and asleep by 10, but who cares? One of my best friends is in a band and has a big show tonight . . . at midnight. I think I'm gonna have to skip it. I mean, I'm in RT, so I have an excuse.

Re: zaps and time on table . . . I get three: one coming from the right side, at an angle and through my left chest wall. The other two are from the left side, up and through my mastectomy scar. I'm on the table for about five minutes, assuming that the damn goggles work and the power is on. All told, barring unforeseen circumstances, it's less than an hour from my driveway to wherever I'm going after tx.

Update: I talked to my techs today about the anxiety I feel on the table once they leave the room, especially given what happened the other day with the first zap occurring before I was holding my breath (left-side rads, breath-gating, etc.). He told me not to worry, said he would talk me through every tx from here on out, and said that I have every right to ask for what I need from the techs. Today was easy-peasy; no issues with the zapper, no issues with the goggles, no issues with positioning. . . And he talked me through it. It made a huge difference. When I was leaving, he gave me a little hug and suggested shots of tequila (he has a sense of humor).

Anxiety during rads is normal. We're all learning that, aren't we?

Big hugs and happy Thursday, ladies! Only one more to go this week, and then we get a weekend break!

JuniperCat

Thank you, Twnkltoz!!

7of9

1 down, 29 to go! First one was a breeze and they took longer taking extra images throughout treatment. I guess sessions will get shorter next week though my shoulder was tight (ALND 3 weeks ago) but I could hold it no problem, just went exploring at a horsebarn I used to ride at when I was a girl...Tomorrow I get to wear my special formed wonder woman bra skin thing...but hey it's Friday.

I am doing some natural lotion stuff the nurse got for me in the morning early before I go (8:15 is appt), apply aquaphor at the gym, walk 20 minutes or little over a mile at the gym on the way to work (I figure get the circulation going after laying on a table should help the good cells recover) and I plan to continue my 45 minutes of walking each and every night that I can. Lots of fluids. I am so happy to be getting this ...wish they had done it the first time around and maybe it wouldn't have recurred at all.

JerseyGirl22

Hello, Lovelies! Today was 19 down for me! Tomorrow I have the 1st SIM for my boosts (SIM with scan view next Thursday), so I get to sleep in a bit and then head out to a quick lunch with my kiddos before the SIM. Whoohooo! Then it's Friday and I have two days that I don't have to lay half naked in a cold room, while a machine whirrs around my head... Yippee!!!!

All of you are amazing! I love the fact that we can all come here as a collective and share without judgment. It's a beautiful thing. This battle isn't for the faint of heart, and all of you are warriors! We didn't choose this fight, but darn it, we'll stare it down.

Warrior On!

KateB79

Is anyone else just fascinated by the machine, as a feat of engineering?

It looks like a giant Kitchen Aid to me.

marijen

We are the batter

phoebe58

I just looked at my counter -- it so is like a giant Kitchenaid -- we being whipped up into mouth-watering morsels of deliciousness!!!! Hmmm, perhaps my batter has too many nuts:) Anyways, only 2 left - tomorrow and then they are doing #28 when I return home next Friday, as RO doesn't want me to stop at 27. Better late than never philosophy.

justmaximom15

I am completely fascinated by the machine but of course I have no idea how it does what it does .. Ok, I'll be honest I'm not even sure what exactly it's doing.

morelandks

yes indeed giant kitchen aid! I like watching the collection of thin blades moving around behind the glass plate as the beam is adjusted during the zapping. It's almost like a dance