Winter rads 2014-2015

yikes1

thank you all for answering.

to chrissie29 -- so you have a mold and a bolus, and I had neither! But, I also had a bolster under my knees and my feet secured together, so that is one thing the same!!

I am not sure why anything is used to draw the radiation to the surface ???????????

Possibly it is due to the expanders, so yes, please let us know if that is the reason.

Must be a big room to have all the molds!!

I was afraid you were going to answer, yes, a tape measure. that may have just put me over my limit of tolerance. And I was already over my limit.

My intention is not to make anyone upset or concerned about their treatment.

But, sorry, a tape measure to be certain you are in the same position as at simulation with something like radiation being delivered is.....I better not say it on this forum.

You guys will kick me out.

chrissie29 - you are also at a major institution with a lot of resources. Very interesting what you are having done with a mold and a bolus. I wonder if they do that for most of their breast patients?

The thing about these big centers, like Cleveland Clinic and Mayo - they are used as examples. So not sure what is going on here that is just so different. They train lots of providers, who then go to other places.

to mqt64 - I am not certain that the information below our names is always exact, updated, or complete, and not sure all side effects are listed. [if that is what you were saying]?

I agree that it would be fantastic if someone would help us do this as part of a study. that is a great idea.

My concern is it needs to be a secure, safe way to gather information.

I wish the moderators would chime in with some suggestions.

Beachbum1023 -- you also have a bolus. wonder if everyone with a mold has a bolus? Maybe they are connected. But, if the mold is just for your head, I wonder why?

It seems the mold Poppy showed us is for the body to keep it in place.

At least you have some color added to the season!

I am sure you cannot wait for this to be over.

I wish this was over for everyone and that no one had to go through any of this in the first place.

quiggy

oh JustJean, I'm tearing up with the thought of what you've endured. You have every right to rant, scream, cry or whatever you need to do.

Gentle hugs my sister.

quiggy

no bolus for me.

4-tattoos, mold, lift/block for my knees.

Techs do a breath hold test with a measure tool and the light beams+ strange box on my tummy.

Xrays each week.

JustJean

I have tattoos but they didn't use Sharpies until the boosts started. They rotated when they used the bolus. X-Ray once a week.

It's so odd how many different ways that this is done.

JJ

Sjacobs146

I am not surprised that there are so many variations. We are all shaped differently, our tumors were in different locations, different models of machines are being used to deliver radiation. Different doctors may have learned that certain techniques work better for them (e.g. molds).

I have a bolus that they tape on every day. I have a fold in my skin on the right side. My RO said that the fold could cause skin issues. The bolus is a small roll of bubble wrap that they tape to my Breast to lift the skin and reduce the fold. My RO said that they use bubble wrap because it is mostly air which allows the radiation to pass through. I joked with the techs that we should give it a name, like Joe.

I also have a bolster under my knees, but they do not secure my feet.

WndrWoman

Oh, yes, I also had support under my knees and a band around my feet. That is optional but I agreed that it made it easier to hold still. I don't think anyone has mentioned that before. Is that common?

Professor50

First, I have had a mold and tattoos. The mold stays there. Actually there is a long "clothes line" in the room with tons of them hung up and pulled down as needed for whomever is up next.

As far as your horrible experience JustJean, My heart really breaks for you. It seems like healthcare workers might be trying to avoid expectations of bad outcomes to avoid those outcomes but of course sometimes they occur, expectations or not. What drives me mad is that there has not been better study (apparently) to make these outcomes predictable. My RO told me about all the range of possible outcomes in terms of side effects (from minimal to really bad) but then said, "There is no way to know who will have them and who won't." That just seems completely wrong. Surely there is some way to predict these things and prevent or at least minimize them. I guess the question is whether anyone has bothered to bring science to the question itself.

Professor50

Oh, and yes I have had a foam support under my knees and my feet are fastened together. It is way easier to be still. And only one arm is up above my head.

This is my last Monday! Powering through.

mqt64

yikes1,I guess I really meant that type of information. There are a lot of other women not on this website.

I must say I gained even more respect for those who are raising kids and doing this. Spent the last 24 hours with my 3 grandsons as mom and dad are on a much deserved vacation. They are good kids 10,8, and 6. But man do they take energy!

Of to the start of wonderful week 3. No mold, horseshoe shaped headrest.I'm on my belly so have a bolster for my ankles, no ties. Now that would send me over the edge!

Ps. That bra wall is an abomination! Who can we all write to?

MagicalBean

No mold. 3 tattoos (I can only find 1). Both arms over my head. Bolster under my knees. I was very comfortable and usually dozed off during the "adventure".

Beachbum1023

And away we go! I am off to #11, for those ahead of me power on, those beside me we will walk together, for those behind us, we will all meet at the end! Have a great week.

CoyoteNV

Rad Period: November 10 - December 19 : 28 regular treatments

I also had:

•  3 tattoos
•  a mold
• a knee bolster
• a foot band
• one arm up (rad side) because of left shoulder issues
• pre-rad scan for alignment daily w/ occasional adjustment after
• weekly RO visit (more if I wanted)
• TomoTherapy machinery
• Plus a warm blankie

 No to:

• bolus;

•  sharpie marks
• boosters

Area of Radiation:

Right side; lymph areas, (down side, under arm, under breast area, from clavicle toward sternum, up outside of neck) Not full breast

Side effects

• Pink to reddish skin

• Itching and sun burned feeling

• Post rad peeling.

• Tightness in skin, and other tissues of the chest, arm (cording?) and shoulder (with discomfort)

• Restricted arm movement increased with rads

• Periodic stabbing pains in the outer breast area

• Painful, inflamed ribs beneath radiation (constant)

• Increased neuropathy to my fingers of the right hand

Where am I now?

• 1 month 3 weeks (approx.) past rads. 

• Occasional itching around clavicle because of very dry skin;

• Periodic stabbing pains in the outer breast area (decreased)

• Tightness in skin, and other tissues of the chest, arm and shoulder (decreased)

• Restricted arm movement (improved with stretching)

• Painful, inflamed ribs beneath radiation (improved to occasional)

• Increased neuropathy to my fingers of the right hand (no change)

Other:

 

---

I'm not sure what I missed, but something like this - outside a narrative - might help compile data.   The formatting of this post is a mess, but I can't figure out how to fix it, so you get it like this.

chrissie29

Yikes1-I asked about the mold for my head and shoulders.  The techs said everyone has either a mold or board that holds them in place, but they prefer the mold.  My institution only has one machine. (I think Mayo in Rochester has 6 machines plus they are taking back my institution's old machine for surgical radiation-my facility has 2 rooms but only uses one room as old machine is in the other room.)  The molds are on shelves around the room.  When I asked about the bolus, they said not everyone with breast cancer getting radiation has a bolus- each treatment program is unique to the individual so I think it is due to my expanders.  They x-ray because the tattoos just line up the skin without a breath hold, and they want to make sure with my breath hold, I am in the correct position.  Bolster and ankle strap wasn't an optional for me.  Done with 6-only 24 to go.  My skin is red in a few areas following #5 but not bad.  I return to work on Wednesday so hoping not to get bad skin issues!

LARock

Just finished up #6 of 35.

I'm not required to change into a gown as long as I have a shirt on with no buttons or zippers, etc. If I do need to change, I put on a gown with the opening in back. I'm not required to remove my head scarf although I wouldn't mind and have done so on my own for comfort.

For tx I lay down on a table in a customized mold. No sharpies, they just line up my tattoos. If they need to move me, they pull the sheet under me, no one needs to touch me other than to lift my shirt or gown up just enough to see the tattoos.

During tx, I just close my eyes or look at the sky picture and listen to music. They told me I could bring my own to play if I wanted. Even though my tx is on the left side, I'm not required to do the breath hold. My RO says the machines are tightly calibrated so that's not necessary

I can't speak highly enough of the men and women who I've worked with throughout this journey. I've been blessed with nothing but kindness, understanding and professionalism. My heart breaks for those of you who have had a different experience. This disease sucks enough on its own.

Nomatterwhat

I have 4 tattoos and sharpie markings.  I had the knee bolster and reached up to hold posts above my head everyday - right hand over left hand.  I had bolus every other day.  I was very lucky going through this part of the journey as I had very few SE's.  Itching and cording. 

WndrWoman

LAROCK. I used to laugh inside when they were tugging at the sheet telling me not to help and calling out 1 cm anterior or posterior - all very official sounding. Finally one day a tech said she was "a little bit" superior. My favorite was one tech who would say "perfect" when I was all lined up. I told her it was the only aspect of my life in which I was perfect. On the last day she made a big deal out of saying "PERFECT!" I loved it. How people are treated makes a huge difference even when the same steps are followed.

Nancy6540

I am being treated at Sloan Kettering in NJ. They made a mold for my arm because with my shoulder replacement I am unable to raise it above my head. I received 16 treatments with the mold and with five tattoos for alignment. My breast was exposed to the three techs (two women and a man). I thought I would be embarrassed but I don't think "modesty" is in my vocabulary anymore! They were great with me and only the women touched my flesh. The man would move the sheet for alignment and did most of the calculations to make sure I was aligned properly. X-Rays were taken weekly, and I would see the RO weekly. When my breast started to get red the techs assured me they were keeping watch and would report anything unusual

After the 16 I had to go back to sim and be measured for a lead apparatus that fastened on the rad machine to zero in on my scar area for five boosts. The tech explained the different radiation that was used for the full breast and for the scar area. He told me the boosts would be high intensity but not penetrate as deep. I was also marked up with circles and "X's" and four stickers were stuck on me for alignment. I could not use cream on the stickers because they needed to remain on me until the boosts were over.

Today was my last boost! 😊 I hit the gong with extreme pleasure! All the techs gave me a hug good-bye.

I am red and sore but nothing like you poor women are experiencing, but they say it peaks two weeks after. The nurse told me I received 5240 Gy. Maybe they were mGy (?) I don't think she knows what she was talking about. She said they gave me the least amount. She said most women were receiving 6400 (?) I will ask the doctor when I see her in eight weeks.

aj103014

Finished my boosts today. Was able to have my appt. moved to early in the day because of the snow.

I had 16 full breast treatments laying on my stomach, with my left breast hanging down in a cut out. They had 4 tattoos that they lined up with laser

WndrWoman

Nancy6540. Happy you are finished and all went so well for you.

Sjacobs146

#10 of 33 today. Bad snowstorm (again) so DH drove me in. No skin issues yet.

I was thinking that there is a little place to put my head and places to put my arms, so perhaps that's why no mold. My techs tug the sheet also to get me in just the right position. I wa in the other treatment room today, and this one does have a picture on the ceiling to look at if you want. There was a woman waiting who was having her first treatment. I told her that it wasn't so bad, I hope that I was reassuring

aj103014

nancy6540 congrats on finishing today.

I had my last boost today as well, so worried that the snow would prevent it. I think every Monday I've had some snow event to deal with driving to treatment. Glad to be finished, but grateful for the techs and staff who have helped me. Some of your experiences are so awful, I can't imagine dealing with that on top of the cancer.

I had 16 full breast treatments laying on my stomach with one arm over my head. I didn't need to have a mold made. The simulation tech said they would have made one of I was laying on my back. But it was better to lay on my stomach to avoid my heart. They used laser guides to line me up with the tattoos and moved me with a sheet or would warn me if they needed to touch my skin. There was a group of 3 who started me off and one of them was always in the treatment room with me. Everyone was courteous and very kind.

I had weekly X-rays and a weekly status check with the RO.

For my boosts I had to lay on my back. They used a sharpie and some other type of ink to outline the area to be treated. Today they had trouble finding the lines and needed to have another person come and check or they were going to redo the simulation for the last treatment.

I've had minimal side effects. Skin discoloration, some heaviness that caused some chest pain. RO had me have an EKG, to rule out heart trouble. Most likely due to not wearing a supportive enough bra all the time and working. I worked mostly full days, but had several snow days during treatment, so I used that time to rest.

So sorry for those of you who have had to endure a lack of respect or concern from the people who you are dealing with. This is hard enough without any additional bs. Thank you for sharing your stories.

quiggy

A big Yahoo to all of you finished or finishing your RADs! I am happy for you, and each of you inspire me.

For those of us not quite there, our day will come!

BTW, I got lidocaine gel today and it's awesome! I was in pain all weekend and not happy about Monday's treatment. I picked up the PRX and my night got much better. Gonna need a bigger tube! Ladies, get some of this!!!

ladyb1234

Had my first RAD tx today. The Tech that graduated me in the waiting room was very curtious. After introductions he stated they were going to take me on a tour to go over everything and take some time to X-ray, take pictures, etc so the appt would be about 30 mins and hoped I'd been told this before hand. I had.

The "tour" was nice and covered quite a bit. From which simulation had been chosen, explaining the process in detail. RO came in and explained the treatment plan again, dose and why she chose the simulation where I didn't hold my breath because I am a lefty. They also explained why I would not have a mold, the, sharpies, etc. explained How the were using the laser guides to line me up with the tattoos. Like AJ they also moved me with a sheet or would warn me if they needed to touch me or one would enter or leave the room. There were 3 techs -- two men and one lady. The lady tech was always in the treatment room with me. Everyone was courteous and veryfriendly. The lady tech ensured I was always covered and would let me know if they needed "expose" me. I had warm blankets and ceiling art and music was relaxing. I think I nodded off a few times. The RO came into the room several times until she felt everything was just right. She kept adjusting my left breast and the bubble wraps she had placed there to keep the breast propped up to reduce the chance of skin issues. She did tell me she is concerned about how the skin will fair due to the fold and will watch it carefully and make any needed adjustments.

During my journey I have been very fortunate so far to be cared for by men and women we have been beyond professional, kind, patient and take their time to answer questions. I am appalled and hurt for those that don't have a decent experience during this journey. all that we go through is hard enough! Thank you for sharing your stories and experiences with us so that we know what to watch out for. Mbecause I read through this thread I paid attention today.

WndrWoman

aj103014. I am sure you were relieved about the snow. I was in that position last week and so eager to finish that I was annoyed to have a snow day. Terrific that you are through!

JeniferE

Thank you all for sharing. Jean, you have been in my thoughts and prayers. Sorry for your difficult journey and treatment.

Had #5 of 30 today. My schedule is earlier in the afternoon than last wek, but glad to see three of the four techs were repeats. All nice, down to business, professional. Missed my favorite tech, though. No form, both hands grabbing something over head, adjusted by scoots and pulls as they align my 4 tattoos, calling out numbers to each other as they adjust. WonderWoman, I LOVE hearing the word 'perfect" too. Told them the same thing today when that description was used.

My breath holding seems a little subjective. Today they took time and did sims again to get the breath right. I plan to discuss this with the RO this week. I hope she can show me on the ct scan where the rads are hitting my heart. Unfortunately some rads do reach it and the lungs.

My breast surgery was a partial mastectomy with fat replacement. Doc did a flap and saved skin and nipple. Breast is still hard and painful where fat was placed. Wondering if rads add to this? Could also just be the process as I heal. Using aloe, have lidocaine cream on hand, assume my fair skin will eventually have some side effects.

Keep posting comments and questions. I love learning from you all. Thank you, Coyote, for all your advice and input.

magdalene51

Varian

This is my rads machine.

CoyoteNV

This is our list of Winter Warriors as of February 6, 2015 - We are still growing!  The Winter Warrior sign up will be over soon.  Our Spring will be a new beginning.

October / November Start

MeneK – Oct 24 .................... MagicalBean - Oct 28......... Mmtagirl - Nov 3

MarieBernice6234 - Nov 4  ... Hope50 - Nov 5 ..................  dennyvol - Nov 5

CAS4 - Nov 6 ........................ Beachbaby65 - Nov 4 .......... CoyoteNV - Nov 10 

Lush61 - Nov 13 .................... Rosa54 - Nov 13 .................  Beachlady28 – Nov 17

Nomatterwhat - Nov 17 ......... LMVerma  Nov 18 ................ katieC12 – Nov 18

Lorrilynne - Nov 18 .............. Gongshow18 - Nov 20 .........Yikes1 - Nov 20

Birdgirl11 - Nov 23 .............  Perfectlyimperfect39 - Nov 23 Singsing1020 -

December Start

Pita119 - Dec 1 .................. SandyLovesLucy - Dec 1......... AnasNana - Dec 1

 HockeyCat - Dec 3 ......... . CanuckMom Dec 4 ................  MeanMomto3 - Dec 4

JustJean - Dec 5 ...............  runningcello - Dec 9 ............... carynbrit - Dec 10

 ForHisGlory - Dec 10 ........ Davida58 - Dec 10 ....................SCMom - Dec 11

eileenpg - Dec 16 ........................ Linzer – Dec 16 ....................... WndrWoman - Dec 16

 sweetbanker - Dec 16 ........  labelle - Dec 17 .......................  Slavrich - Dec 27

InGodshands - Dec 18 ....... Catie57 - Dec 18................................. lilactulip - Dec 18 

 PoppyK - Dec 29 .............. kpmacmill - Dec 29 ....................  Jlynn13 - Dec 29

 gretchy - Dec 29 .........................Bellegirl - Dec 30 

January Start

reader425 - Jan 2.......................ILCMom - Jan 2................................ Purrrrana99 - Jan 5

Cath57 - Jan 5  ......................... Professor50 - Jan 5 ...........................fossf - Jan 7

Lulubelle1 - Jan 8 ............. lescover - Jan 8 ..............................  Nancy6540 - Jan 12 .

Saltygirl - Jan 12  .......................aj103014 - Jan 12 .................... Fionascottie - Jan 13

Magdalene51 - Jan 15 .............. quiggy - Jan 19 ................................. Bippy625 - Jan 20 

Dacre - Jan 20 ...........................feelingoverwhelmed - Jan 20 ............. KYBLUEEYES - Jan 20

Beachbum1023 - Jan 22 ..........  Cavalier - Jan 22 .............................  mqt64 - jan 26 

 Sjacobs146 - Jan 26 ...............  Windgirl - Jan 28 ............................... Hotdogmommy - Jan 29

February Start

JeniferE - Feb 1 .......................  LARock - Feb 2 ............................  Chrissie29 - Feb 2

gemmafromlondon - Feb 2 ........ ladyb1234 - Feb 9 ........................ CassieCat - Feb 12

Texas94 - Feb 16

February Start Dates Not Known

farmerma - Feb ? .....................intothewoods - Feb ?..................... MaggieCat - Feb ?

Allmodestyisgone Feb ?

March Start

WheelyGirl - March 2

March Start Dates Not Known

Kayfry - Mar ?

Special Sister Warriors and Warriors who stopped for a visit, but for various reasons didn't stick around. No start date determined.  We wish them well.

zjrosenthal  - Rads delayed by surgery, until ? Honorary Winter Warrior

Minnielee; surrrana99; Coloradocancermom; Shuf; bjeaneg, knittingPT, Shayne36, KGotThis, ckr1956, funthing42

= Reported Complete

 = Should be Complete by now.

CoyoteNV

Hooray and congratulations to Nancy6540 and aj103014 !  How great that the rads are behind you.  I wish you smooth sailing and many smiles. 

yikes1

I have tried to read all the posts - fantastic effort to figure all of this out.

quiggy - is the Lidocaine gel a prescription?

is that what PRX is?

what % of Lidocaine is it?

what size tube?

quiggy

yikes1;

2% lidocaine hydrochloride jelly