Winter 2013-2014 Rads

JKOmaha

Thanks Peaches!

RedReading

Well, a lot has changed since the last time I wrote. Sorry to be a wet blanket, but rads are not going so good for me any more. 

I'm in the darned stirrups for 40/45 mins each day for rads. I have gone so far off the planning that I have had many days of... take an xray adjust me, take an xray adjust me... that I could spit. Usually they do this 6-8 times, then, I get treatment. Wednesday, they tried a 360 xray, my planner was present for this, but the machine rejected me. Thursday, they had a medical physicist in the room - she of course, cared about the machinery, not the patient, and fixed things up so that they could do the 360. After lying there another 10 mins, still in the stupid stirrups, they came in and told me they couldn't do a treatment today. No big deal, they said, we'll just tack one on to the end! Friday, my RO was in the room, and they managed after multiple attempts to get me to the point where they could do treatment. 

I went from there to the cardiologists, where they hooked me up with a heart monitor for the weekend. Got home and realized when I went to change that they'd hooked 1/2 above my bra and 1/2 the leads below it. Usually this may be no problem, but I was wearing a sports bra that had to come off over my head. Idiots. I had to disconnect 4 leads to get my bra off. I'm not positive I put them back on right. Sigh. I have trouble with black and navy sometimes. 

OK so tomorrow, they are going to try again, and it's my RO appt right after. So I'm taking my DH and my DD the RPN with me. Maybe I can get some answers that way.

Hugs'n'kisses. 

Deb

Jmfrankel

RedReading, 

So sorry to hear they are having so much trouble setting you up.  I had problems with this initially where they would take 5 X-rays to get me lined up but within a week or two they figured me out and would get me lined up each day within 1 or 2 tries.  

It looks like you have been doing rads since 2/19 so they should have this down by now.  What does your RO say about it? I would ask if a new simulation might help. 

Hoping if gets better because it is hard to have your arms up for so long! 

RedReading

Thanks for the advice JM. I will ask that. I'm finished 12 of 20 - cdn protocol. I think I'm just frustrated with the usual comment that they do this with everyone. Glad to hear I'm not the only one who has had setup problems. I'm in week 3 tho. Waaaa.

Yes I'm being a baby. Thanks again.

Mayanne

Hi Red,

So sorry this has been happening.  At first I couldn't figure out what you meant by stirrups - I was thinking of foot stirrups!  Of course it's those arm brace things!  It only takes a few minutes to set me up to their three coordinates, but a partial roll is involved and to hold it absolutely steady, I have to brace my right leg and arch my back slightly.  This is difficult - especially when they're also saying to "'melt into the table".  If I let myself "melt" the roll position would be gone.  I consciously have to hold while bracing, and luckily it's only for a minute or two and then another minute or two after someone comes back to move the machine to the other side.  I have at times worried that the slight arching of my back is sending the radiation where it's not supposed to go, but is assume the machine would reject me.  You'd think they'd stuff a pillow under me or something.

I have my 22nd out of 33 tomorrow.  I'm reddening up quite a bit in two separate areas.  I know they are not burns, but the skin breaking down and not building up new skin because of the radiation doing what it is supposed to do.  I always remember someone on one of the threads here calling the process "healing beams" in trying to make the best of the process.

Anyway, I hope they figure out your proper position and stop making you go through all that wait time!l

RedReading

Mayanne, can you imagine the indignity? Legs up in the stirrups AND getting rads. Hang on, I got a visual there, gotta wipe away my tears I'm laughing so hard. OK I do NOT have it so bad after all, cuz that would be the worst!

I don't understand why they can't put a towel roll or something like that under you. Any of the nurses on site know the reason for that? It's awfully uncomfy as it is without holding an elevated position thru your back.

I'm with you on the healing beams, it helped me too. Although, my skin under the breast and on my collarbone and in my armpit has already begun sloughing off. Not leaving new skin behind, but raw areas. Boo. It'll be over soon though.

I guess that's both the advantage and disadvantage of the Cdn protocol. It ends sooner but they turn up the rads and you burn quicker. Or I do anyway. 

Thanks for your thoughts and support. I appreciate it.

  

TB90

Red: I am very confused as to what is going on.  I have never had a delay in treatment and spend max. 5 min on the table each day.  They do one x-ray, adjust the table, and on with treatment.  I would be very concerned about this being an on-going thing.  The techs do move me manually a bit at the outset and I am so comfortable on the table, that I drift off into memory lane.  I realize that each situation is unique, but this just does not sound acceptable to me. I think you have a right to ask what the problem seems to be.  I drive a five hour round trip and if they just shrugged off a treatment, I would be very p ---ed!

Then the heart monitor thing. Damn.  Let's hope this week things get on track and are less frustrating for you. Good thing you are receiving the Canadian protocol so that this ordeal ends soon.  

TB90

Red:  I also wonder what it is like for the poor guys receiving rads for their prostrate.  Maybe we do not have it so bad

RedReading

TB90 - I have no idea how that would happen. Now I'm going to have to ask my brother-in-law since he had it. I imagine face down but beyond that I'm lost.

I will be asking tomorrow about why my tx is so weird. I tend to clam up around authority figures, like principals, cops and doctors, that's why I'm taking some of my family with me. If I get shut down, they will not.

I'll let you know. Thanks for your concern.

TeamKim

Demand some answers, Red -- all that goofing around to get you in position is crazy!  I would be ready to rip someone a new one!  Glad you are taking some soldiers with you, brave warrior.  While you are there, see if you can get an Rx for Silvadine cream for those raw spots -- prevents infection and speeds healing.

MinusTwo

Red - as I mentioned before, I have 9 zaps (beams) every day.  So you can imagine the '5 min' story never applied to me.  They take their time between each shot or two re-calculating & drawing more magic marker lines on me. Twice a week they take more X-rays so the time on the table is longer - maybe 30 minutes.  I just finished week 3 of 5 and they've adjusted the angles of the machine somewhat.

Did you ask the RO to see your "map"?  That really helped me understand what they are doing.  Good luck tomorrow.

TB90

Correct me if I am wrong.  After the initial CT, the RO plans and designs your treatment.  It is all set up and should flow much smoother than what you are describing.  It should not change daily and the only adjusting that should be required is getting you lined up.  Perhaps the equipment differs at different locations, but our RO's do the planning on the week to ten days following the CT scan and then they are not even necessary at the actual treatments as everything is computerized.  The radiation techs are all that are required after the RO has established the treatment plan.  I cannot understand having to change treatment plans if you do not change position.  Otherwise, why bother with a sim?     

MinusTwo

TB90 - My MO treated me through chemo & surgery for a year after recurrence before we moved to rads.  My RO checks everything all the time.  I see her every week for an update.  Yes - the main plan is mapped out but they have slightly modified where some of the zaps are going - maybe based on the X-rays.  Maybe it's because my cancer was a recurrence after a double mastectomy 2 years ago?  Maybe it's because it involves chest wall (and thus skin)?  Maybe it's because with the ALND there was a malignant lymph node?  Maybe it's because there are really no tumors to see due to two different chemo sessions & surgery before rads?  Maybe it's because I have had implants in place for 2 years?

I don't remember much about physics so I'm glad I REALLY trust my RO.  I don't like the time on the table, but after seeing the pages & pages of multi-colored maps of my body in her computer and having her answer all my questions, I'm up for the plan.  I'm at an MD Anderson center so I'm confident about the techs and I sure like that they are extra careful w/positioning for each zap.

positivenegative

Minus2 mine takes 25 mins as well and they need to readjust me multiple times throughout the process and put different attaachments on the machine and draw on me.  i too see my RO 1-2xs/wk mets and size of site they are radiating makes a big difference.  if they are doing chest wall near heart and lymph nodes the area is like 1/2 a torso.  i too get xrays weeklly.  your situation  sounds similar to mine.  the stirrup thing hurt holding arm up for so long....i found taking tylenol before going and wearing my llymphadema sleeve helpful.  i'm in  my last of 7 weeks so i feel your pain literallly.  good luck it will be over soon.  hope that helps.  thoughts are with you (((big hug))).  keep us posted.

Miminiemi

Red - I too imagined stirrups for legs with wonder.  Are the really literally stirrups for arms?  Mine was like a huge beanbag pillow that the sucked all air out of during simulation planning.  Kind of like those space bags.  It molded to the shape of my arms and then the just used that shaped beanbag pillow every day.  Oh, with warm blankets oner my arms and legs for spa feeling.  

Miminiemi

One more thing Red.  I did the Canadian protocol, too.  I did have some raw spots beneath my breast. But I am happy to say the we're all healed exactly two weeks after rads were done. I went braless, kept lubed well to avoid friction and to allow healing, also used Domboro soaks to relieve itch and keep old skin together as much as possible to let skin under it grow back before old skin tears.

I'm editing to add some thoughts about our care in general.  I wish they would tell us the "why" of things more often.  It would help with patience and even follow through.  All the instructions about skin care seemed contradictory and the nurse even remarked about that.  But after lots of reading I could understand why I was alternating a drying astringent with moisturizing ointment.  Even that small piece helped me know what to apply where, exactly where!  I am hoping this all goes fast for you now.

RedReading

Hi ladies. I re-read my post and am a bit embarrassed at how bitter and angry I sounded. Thanks for letting me vent.

So, to answer those questions I can...

JM, it turns out that 360 xray they did was a new CT, my breast shape and size remains the same. The plan did have to change tho, they had 1 cm (almost 1/2 inch) play in the original plan, but I had gone outside that -from 94.6 to 95.3, so they had to figure out a slightly different way of positioning me. And only 1 arm is in the stirrups.

TeamKim, my DH & DD were both good with the answers the RO provided, and better yet, he didn't make me feel like an idiot for asking. They also gave me Glaxal Base to use, but I'm thinking now I have the go-ahead for a cream/lotion, I might use a natural product I have instead of it. The ingredients are similar but one has things like Ceteareth-20 and p-Chloro-m-Cresol while the other has Tulips and ginger oil and such. What do you think?

Minus Two, I also get seen by my RO on a weekly basis. I kind of wish it wasn't on a Monday, because I heal pretty well over the weekend usually. Both mentally and physically. So I tend to answer the survey with, o I feel good, tired and a bit sore but good. 

Mayanne and Mimi, there are two stirrups on my right side. They lift my arm up above my head at 9" high, bicep and 11" forearm. My hand kind of hangs. I am on an inclined plane with a bum rest (to keep me from sliding off the table) a knee rest, and a piece of concrete under my neck. OK it's not concrete, but it sure feels like it after a while. My head kind of hangs like my hand. My left hand has to be anchored under my butt. It wasn't so bad when it was only 10 mins, but when the time kept extending, it all burns - all the contact points. 

TB, turns out guys are in a very similar position to us. Flat in their backs with their hands on their chest. The biggest difference is that they get their rads while the machine is moving in an arc around them. That way, the focal point (prostate) gets rads constantly while the remaining areas get less as the beam is always in motion over them. Pretty cool, eh?

PositiveNegative, I think I'll try the Tylenol idea. I wonder though if ibuprofen might be better in my case since it is the muscles that stiffen and start shaking. This is partially why my plan went off. And the longer and longer the arranging went on the tenser I got and the further off plan I went. I don't have LE (yet & never I hope) so no LE sleeve.

Anyway, I feel better now. I understand it better and that makes a world of difference. Thanks to you all for supporting me during a really tough weekend. Hugs'n'kisses 

TB90

Hi Red and others:  I asked my techs today about the differing times and methods and they gave me a very detailed explanation that I could never repeat, but clearly there is good reason for all the things they do and we will just have to trust them. It must be so difficult to be on that table so long.  Better not rip anyone a new one just yet  I agree, it would be nice if they explained things more, but one tech told me that some people do not want any info, so they are careful just to respond directly to questions rather than offer info. 

I admit that I am a bit of a control freak so want to know everything and have a difficult time totally trusting any treatment or dr.  This whole bc ordeal has definitely been a learning opportunity for me. 

Pam, you had your first tx today??

I do have a dry tickle in my throat and cannot tell if it is due to rads or allergies.  Will ask tomorrow as I get to see the nurse or dr. Anyone been given anything to relieve this symptom if it is rads? 

TB90

Pam is on the other thread.  Sorry, I keep getting these two rads threads mixed up.

MinusTwo

Red - So glad to hear the doc listened & talked.  My RO has only approved Miaderm, Aquaphor and 100% Aloe Vera so I can't help w/the alternate creams.

TB90 - I agree, I'm a control freak too and want to know everything that is going on.  My questions REALLY upset the PS.  Maybe he thought I was questioning his competence but more likely he's just an arrogant specialty surgeon.  All the other docs have been glad to explain & share.  I swear I'll be able to write a book when all this is over.  But more likely I'll just want to put it all away in one of the cupboards in my mind and close the door.

Sorry - I know there is such a thing as a rads cough from another friend but don't know what he took to control it.

Miminiemi

I was afraid I had that rad cough thing, so was glad it turned out to be a bad head cold.  Red, that positioning sounds so awkward.  You can complain to us anytime.  It makes me appreciate and almost embarrassed to have it easy.  Your making progress!  Glad you felt listened to.

TeamKim

Red -- glad it went well and you feel like you were heard.  The position does sound incredibly uncomfortable -- how stressful for you!  Hang in there, sweetie!   

I don't have experience with the creams you describe, so I can't really help you choose.  The Rx Silvadine cream that I used contained a topical antibiotic, which is helpful in spots where the skin breaks down.  I happened to burn my wrist cooking, and used some on that as well -- healed it up very quickly!  Other than that, I have used 100% Aloe gel, Miaderm (which has aloe, calendula, and one other ingredient which is a building block protein for skin regrowth), Emu oil from Sprouts, and Aquaphor.  Sometimes I layered them with the Aquaphor on last to keep the others in place and an old cotton tshirt over the top of it all.  "Airing out the boob," which someone else suggested (sorry, I don't remember which of you gave me that GREAT advice) also really helped.  I have read that some others have also used wet dressings when skin breaks down exposing raw patches. Let us know what you decide and what works for you.  Gentle (((hugs)))

Lojo

Hi All - 

Red, I also have an arm "stirrup" that is very uncomfortable (two stirrups, one on my upper arm, one for my wrist). On the positioning/scan days that are longer than regular treatment, my arm falls asleep, is numb and very uncomfortable. The techs have tried to help, but not much helps and I'm just taking a couple advil before my longer appts and dealing with it. I hope yours gets better / is over soon!

Today marks half way for me - 14 out of 28. After the treatment today, they're doing all the scans (ugh!) for the "field change" which the techs and RO explained to me, but I don't quite get other than they're shifting the fields a bit to make sure they don't miss anything right on the edge of the rads field. 

I'm a little tan and the skin is dry - I don't feel too much discomfort on my chest (thanks to the MX, I'm still mostly numb) but my collar bone / supra clavs area is getting a little irritated - feels like a minor sunburn.

Can't wait to be done!

TB90

Red:  I use the Glaxal Base that was recommended to you.  It is a Canadian product and was designed for pharmaceutical use as the base to all Rx creams.  It is working for me (or appears to be, who really knows), but is certainly not the only cream to work.  I was told that lotions are not as effective as creams by the pharmacist, but again, who knows??

Jmfrankel

I have had a cough for 2 weeks.  Not sure if it's from rads either but my RO says if I still have it next week he may prescribe steroids.  Personally I would rather have a cough.  I have had nothing but bad experiences with steroids .

Palameda

Wow, here I've felt sorry for myself over my burns, but yikes! I finished yesterday, good thing I had IORT at surgery, cause even my RO agreed that my skin couldn't take any more. The nurse sent me home with wet dressings to put over the silvadene, and gauze to lay over that for the next week. She'd given me telfa but that just ripped the skin off (my pitiful nipple!). I think the only thing worse would be a man having rads to the tip of his penis LOL.

I had 1 X-ray per week, 8 zaps per day. I laid on my back on an incline with the beanbag positioning me. It took 1-2 minutes for the techs to position me, they left and the machine did its thing moving around all on its own, no repositioning of me or the machine by the techs. Five minutes on the table with my arms over my head and not uncomfortable at all. No changes at all for the five weeks. I guess I was lucky!

I am SO done. It hurts to walk except very slow so the girl doesn't bounce in the stretchy little bra which is all I can wear. For a while yesterday, it hurt to breathe. But all over, and onward to aromatase!

TB90

Pat:  How wonderful to be done.  Now the girls can heal and be free to bounce again!

dragonfly45

Congrats Pat on being done.  I have 7 more to go.  My breast tanned very nicely but i have developed a very bad case of what looks like sun poisioning.  And my, my does it itch.  The Aquaphor really helps only for a little while.  Right now I am experienceing fatigue.  We had a blizzard yesterday and i had to shovel out my car this morning.  Between that and taking a shower afterwards,  I was done.  Icould have gone back to bed if i did not have to go for my treatment.   I am at work now but will only last a few more hours before i head on home for a nap. 

RedReading

Hi all. Thank you again for the marvelous support you have given me over the last several days. I have only 6 more to go, 2 full breast and 4 boosts. I didn't use the homeopathic remedy after all TeamKim, I was kind of scared to. So, like TB90, I am using Glaxal Base only. It seems to be doing its job though, so no complaints in that department either.

Lojo, I definitely understand what they are doing with you. I always start out with, o this ain't so bad, then as things stiffen up, I'm more like, when will this end. Lol hey, you're more than 1/2 way now.

JM, I have had no experience with 'rad cough' than goodness. I hope they give you something to make it go away because I think it would be awful to have to hold in a cough while getting rads.

Pat, congrats on being done! Be kind to your girls, they'll be swinging free in no time.

Thanks again for your support.

Hugs'n'kisses 

MinusTwo

JM - I asked my friend who had a bad rads cough what he was given.  His answer was:  Nothing that worked----otc cough suppressant and finally Advair
inhaler. Neither had much effect. That said, he was dealing with lung cancer not BC so I hope it will be easier for you.  

Red - I know you're counting the days.  I'll be thinking of you.  I have only FOUR left since I get to skip boosts.  I just hope they don't decide to add a bolus back in for the last days.