September 2010 Rads

DiamondGirl

Marmalade, I also asked about the Canadian protocol and I was told (by the doctor's assistant) that I can't get the shorter treatment because of my size.  The dosage is divided into 33 treatments (28 rads and 5 boosts), btw I didn't hear this from my rad onc. 

I am also taking my antibiotic to get rid of my infection and the still haven't started rads, I will however be getting my PET scan next Thrusday and am praying for a clean no cancer PET.  

Good luck to you all this coming week, HUGS !

DawnKY

AICa, I'm also fair-skinned and freckled, and burn easily anyway, so I am quite worried about how rads is going to affect my skin.  As for the weighing-in bit, that was never mentioned to me, but I will also decline. Every time.  I'm not gonna add that stress to what I already have.  I seriously doubt my weight will change enough one way or the other during tx anyway. 

Dutchgirl6--thanks!  I love AiW, but esp. love this quote.  This particular pic came from items at Cafe Press website.  You can get it on shirts, totes, mugs, etc.  I would love to have it poster-sized for my office at work. 

1marmalade1

I am still working on the infection in my mastectomy incision, although with the antibiotics I'm taking it is finally healing.  If all goes well, I start rads Monday - if not, they said they'd delay it a week.

DiamondGirl:  My daughter just returned from her first trip to Vegas yesterday - had a blast!!!  Now she understands why I love going there!

DiamondGirl

marmalade, my sister lives in Brampton (she moved there since 1980 and my mom and other sisters are in Greater Toronto, I lived in T.O. for  5 years myself.   I intend to visit T.O. once my rads are done.  I'll PM all the Toronto/Brampton/Mississauga sistas and meet up with you gals. 

Yes, Vegas is a fun place indeed.  But locals don't gamble, we just enjoy the world class cuisine and shows whenever possible

bubbalu

Reporting back on the Mayo Clinic hotliine:  They are only for use by a particular insurance company, I think she said Student insurance?  Anyway, she couldn't help me but said I was taking the right path by consulting with a radiation oncologist in a larger area.

PearlGirl

Hello, Ladies.  I've just begun my rads...4 tx down and 29 to go.  I'm so tired already that I don't know if I'll recognize the promised fatigue when it comes, but I'm wondering if any of you can tell me how long it took before you saw skin changes and if anyone has shooting pains in the radiated breast? They just began after tx #4.

Any comments or advice you have will be appreciated.  Thanks.  Bon

krhilde

Hi all,

Haven't been on in awhile because I have been enjoying having energy post-chemo and trying to take advantage before radiation starts.  I forgot what it feels like to even be motivated to go somewhere or even clean house AND have the energy to do it!  

Lorraine:  Not sure if you have a car with you as well, but if not, and you'd like a distraction and to get away from your "new home" for a bit, let me know and I would be happy to come and pick you up for lunch, or errands or both!  I can't imagine driving around houston in an rv on a routine basis, so let me know.  I live just south of houston and it is only about a 30 min. drive to the med center.  

I did have to find time for my ct/simulation this week.  I love my rad onc and the staff was very nice and techs/nurses all female which was nice.  I quizzed him a bit about the big range of se that seem to occur and is making me very nervous.  His answer was that a lot of it depends on the age of the equipment, newer equipment gets better and better and burns, etc is less.  Also depends of course on the number and extent of areas to be radiated, and just difference in patients.  He told me I shouldn't have anything worse that a mild sunburn like reaction and that while fatigue is present,it shouldn't be nearly as bad as chemo and most people are able to go to work.  It is best managed by staying busy, but if I go home and sit down and watch tv or read I'll probably fall asleep. So we'll see, I am trying to be cautiously optimistic.  I have 5 dot size tatoos.  The only one that hurt was right on the sternum between the two breasts...it was a breathtaker!  She put a little sharpie mark before she did the tats and those washed off easily.  The tats almost look like tiny moles or freckles so aren't very noticeable.  The rad onc was in the control room once the tech got it mostly lined up and he did the final tweaking. I'm only having rads to the lumpectomy site and not nodes. I believe I will see him once a week for a short consult before or after rads to see how all is going and if there are any new questions. I didn't see the actual room and didn't really think about asking (probably should have and it would have alleviated a little anxiety).  He is also referring me to a lymphatic massage (sounds good!) therapist due to the swelling in my right arm.  He told me if this is not gotten under control before too long, is permanent which I did not know.  He said the massage technique would help as well as they would get me one of those sleeves to wear to help as well.  I start Monday at 8:15 for 33 treatments.  They didn't seem to mind at all if I needed to change the time for any conflicts.  Anyway, that was my experience for the ct/stim for comparison.

I have tried to catch up on all the posts and should have made myself notes or something lol.  By the time I started writing this I have everything all mixed up!  So, welcome to all the new ladies, glad to see Janet back, and all of you are in my prayers always.  Good luck to everyone this week; hope it's a good one for us all and that rads go smoothly, other problems are solved or at least answers are found, and anxieties calmed.   Sorry for the verrrry long post!! 

dutchgirl6

Hi Bon, welcome to the board.  I haven't felt any shooting pains, but I started seeing some tan on my breast after about 10 zaps.  It actually looks like a baseball diamond, with home plate just under my collar bone.  How long has it been since chemo?  If you started rads soon after you were done, that might be the reason that you are feeling so tired.  Maybe you should mention it to the rad techs, they might have some strategies that help to alleviate fatigue.

bubbalu, that's too bad about the Mayo clinic.  Hopefully you can find someone who can help you get to the bottom of your skin issues.

khilde, it sounds like you are prepared for tomorrow morning.  Good luck.  You will probably get more sharpie marks, mine get redone every day.  I'm glad that your onco is on top of the swelling issue, the sooner you can get that under control, the better.

My onco told me that I wouldn't be getting any rads to the underarm area, but today I noticed that it is a bit darker than the non radiated side, and I feel some pulling in my scar area.  I will definitely mention it to the techs, and find out what is going on.  Only three more for me!!

Have a good Monday, everyone.

Karin

BocaCiegaBabe

Is anyone else bothered by itching in the radiated area??  The section of my chest that has seen lots of sun has developed red and brown spots, which itch like the devil.  The itching even weans its way into my dreams at night.  Lotion doesn't help.. It's making me crazy(er).

 bubbalu, will be thinking of you tomorrow and wishing you well.  Hope they can get to the bottom of your reaction!  Have a good trip.

sespebadger

Yes.....the area of my chest that previously had sun exposure is the most irritated from the radiation and it does itch. And I have brown and red spots along with raspberry pink skin. It can be painful at night. Aloe gel and a fan aimed at me at night work for now, but I am nervous about how I'll feel at the end of this week. I go in for treatment #25 of 33 today and will talk to the doctor. I'll ask for something stronger, whether topical or a pain pill. I feel rather depressed about this as I wake up this morning, but will probably feel better as soon as I get distracted with day to day reponsibilities. Gotta get through this final stretch!! From reading how August radiation women did I think all this is typical. I've told my husband and daughter that these will be hard weeks for me.

Tomorrow I go see my medical oncologist for blood test results. This will be the first report since chemo ended at the end of June. Hoping for a good report. If it's not good, my husband and I plan to keep the news to ourselves until after our niece's wedding (and a big family reunion) October 9. I have a close friend who has Stage 4 b.c. and she told me she doesn't tell her family when she is waiting for blood test results so that they don't have to wait and worry.This makes sense to me.

bubbalu

Update:  They moved my apt. at Univ. of PA Abramson Cancer Center in Phila. up a week to 10/5.........UGH!  Their letter said I should BRING all my paperwork but they called and said it has to be sent BEFORE my apt.  Therefore, reschedule apt..  Work in progress.

dutchgirl6

Good morning.  I just came back from #14, two to go!  The rad techs gave me a recipe for saline compresses that they say will reduce discomfort from radiation.  Here goes:

Heat 1 litre/quart of water to boiling.  Add 2 teaspoons of salt, stir to dissolve.  Place solution in clean container and allow to cool to room temperature.  Moisten gauze with solution, wring out excess water, place on affected area for 10-15 minutes.  Gently dry, and apply moisturizer.  This can be done 2-4 times a day.

I haven't tried this, but the techs swear by it.  I thought that it might help some of you who are dealing with skin discomfort.

Have a good day everyone.

Karin

PearlGirl

Unexpectedly got to see the RO after my 5th rads tx this morning. He listened carefully to my description of the aching under my arm and the shooting pains in the lower part of my breast. After lots of poking and prodding, some of which was a bit uncomfortable, he said that it is related to the rads tx, not anything that could mean a recurrence of bc. He said it's early inflammation of the breast tissue and chest wall and suggests that I treat it with massage, no lifting or excess stretching with that arm (the right) and to take an OTC anti-inflammatory, and to wear only a sports bra. So there you go...even after only 4 tx the rads I have SEs. 28 to go. Hope it's all worth it. Although I like this RO a great deal and know this has been recommended by both my BS and MO, I'm having a more difficult time accepting rads tx as something I want or need. Anyone feel the same way?

MelBell07

Bon - Yes I feel the same way. They had told me before surgery that they didn't think I would need rads at all. I got a bilateral mastectomy and had tissue expanders put in...only to find out that the margins weren't clear so I needed radiation. They told me I was in a "gray" area though...but I still need it. It only brings my recurrence rate down a couple points...makes me mad. It pushed my reconstruction up 6 months. What was supposed to be a 6 month process has turned into over a year long ordeal. Ughhh.

susanthur

everyone told me that after chemo that radiation was a breeze, well it was.  but now after almost 6 months later, my chest hurts. i am not sure if it is a lung thing or not since i have shortness of breath too.  does anyone know if exercising alot helps increase your lung capacity? and if shortness of breath is a result of lessened lung capacity.

sespebadger

Thank you, Karin (dutchgirl) for the recipe for saline compresses. I'll ask about it today.

And I know I have to do radiation, but I don't like it one bit. I think people are trying to be encouraging when they say it will be a cakewalk, but even after 6 months of chemo, I think radiation is very unpleasant and also may have some longer term side effects. I go with a smile on my face and gritting my teeth. 

PearlGirl

I haven't found even one itty-bitty part of this bc dx and tx that's been a cakewalk. Not one iota of this process has been easy. I know everything is relative and needs to be kept in perspective. But the encouraging words sometimes make things worse when the reality isn't as easy as we're told it will be. I try to be encouraging to people undergoing chemo, but I usually end up saying it's not for sissies. I did think rads would be a whole lot easier. But it's so sci-fi to me that I'm 'fighting' it way more than I expected I would. I will just be so glad when all the tx is over. Even my port is giving me fits and I need to keep that for Herceptin IV's through the end of June 2011. No, nothing about bc is a cakewalk.

KaeB

Flippy, was in your area about 10 days ago to spend the weekend with my sisters at a cabin up there. Beautiful part of the country. I hope you can find somewhere to stay in Rochester. I had to chuckle when I was catching up on the posts as there seems to be a lot of us on either side of 50 and having arthritis pain. If it's not one thing it's another. Good luck with your treatments.

nwshannon

BocaCiegaBabe : I to am fighting the itches as well, found myself doing it in my sleep, it was driving me nuts! I have found some relief with the Aloe thank goodness. I just noticed these after treatment #11 looked like a red rash with little red bumps and itched like crazy! I hope that it does not get any worse. As far as a sunburn I am fair skinned as well and it is just a little pink but not bad.

I have completed 12 of 30 rads today, looking forward to that half way point this week, I am exhausted from all the driving & the fatigue is setting in as I work full time as well so my days are starting early.

susanthur

My rads were not so bad but my skin is alittle olive and i never blistered but i did get red.  the thing i was amazed or shocked about the most was that the radiation goes completely through your body.  i had a place that got red on my back!  i heard that was common, even though i was never told that. i was so sick during chemo, never through up though.  i can relate to the port thing.  as time goes on, it seems to go down deeper.  when they do a port flush now, they have to use an inch and half needle.

SharonNM

Bubbalu - I went to a breast cancer conference this weekend and one of the speakers talked a little about PARP - he seemed very positive about it - so I am glad you are pursuing this option.  I believe that it is for BRACA positive?  Not sure about this part.

Anyway - I started radiation last wednesday - they combined my simulation with my first treatment.  They are a very efficient and professional office which I really appreciate.  They give you a card with a bar-code that you swipe when you walk in the door.  Then you just go directly to the changing room and wait for them to call you for treatment.  The only disappointment was that they are not using the Varian Rapid Arc - that equipment appears to be used for non-breast cancer patients.  No side effects yet - but have 31 (!) more treatments to go.  28 full breast and 6 boosts to the tumor site. 

Thanks to everyone for the good information.  Best wishes for minimal side effects and quick healing.

1marmalade1

I have a question one of you gals might be able to answer:   Are you supposed to start using the creams (i.e. Glaxo) starting from day one?  I was given instructions to get some, but not told exactly when to use them or start using them.  Appreciate some info.

sespebadger

1Marmalade1: I would start using whatever cream they gave you right away so your skin is in best condition possible. My rad onc told me to reach way over my shoulder and also behind my arm pit on the side they are treating when applying aloe gel. Someone else mentioned that burns show up beyond the area you think they are treating....for me that is behind the top of my shoulder (although it is mild) and some on my collarbone on the treatment side.

As for ports.....I got mine out in late July. I was very glad to have it during chemo and glad to see it go, of course. The incision site really itches. I put aloe gel on it too.

Yep, treatment for b.c. is no walk in the park. I'm looking forward to when it's done....5 years from  now when I'm done with Tamoxifen :-) That will be 6 years total, but who's counting. And I'd take 6 years of treatment in a heartbeat to be rid of this horrible disease. Wish there was a CURE for all of us.

BocaCiegaBabe

nwshannon, your rash sounds like mine.  The doctor told me to use hydro-cortisone cream or ointment on it, so I picked some up on the way home, and it has helped.   Thanks for the recipe too dutchgirl.  I'll keep that in mind if this loses effectiveness.  Certainly when we lived in FL, just going swimming seemed good for most skin ailments...the salt water seemed to have a healing quality.

 bubbalu, I know you are disappointed...ready to go then have it put off.  It is most likely for the best though, ultimately, so they can get your records and go over everything beforehand, really give it some thought, and put heads together to come up with something.  Hopefully you can do the same R&R you planned after your visit.  You deserve it!.

sespebadger...wishing you well tomorrow!!  Aside from the rash on my chest (a relatively small area), my skin has done well so far, but I've only had 18 tx to your 24 so the redness may still be ahead. 

DawnKY

Khilde wrote:  The only one that hurt was right on the sternum between the two breasts...it was a breathtaker!

You ain't kidding!  I've got a pretty decent pain tolerance and about jumped up off the table when she poked me there.  

bubbalu

BocaCiegaBabe:  Thanks for the kind words, I'm thinking I'm past my 'window of opportunity' with the radiation now.  Even if I could take it - it's probably too late for it to be effective.  They like to start it about a month after surgery.  It's been almost 3 months for me now.  At least I hope I get some answers at Phila. about why I couldn't take it without burning out of the rad area.

I have to have my mammogram in November (healthy breast) and I still have a chest port in there.  Can they do a mammogram with it in?  Makes me squggley to think about that! OUCH!

I was advised to leave it in for a year which would be February.

My apt. in Phila is 10/5.

SharonNM: The PARP sounds promising and they hope to open up nationwide soon.  It is for triple negatives.

Good luck to all you red and itchie ladies...............carry on!

shells43

Susanthur - sounds like you might have radiation pneumonitis. I just read an article in the New England Journal of Medicine about it. It happened to a lady 6 months after finishing rads.  A short course of antibiotics cleared it up. It was visible on an x-ray and results from radiation hitting the tiny portion of lung tissue they can't really steer the beam around. You might want to mention your symptoms to your onc or rad onc if it is bothering you. Hope this helps.

Hot Flash caught in the act! Had an interesting experience at rads today. Had my rad visit, saw the Rad Onc, whose nurse took my vitals before I saw him. Temp was 98.4. After that I had to go around to the infusion center to have my blood drawn for a CBC. They took my vitals there, too, and my temp was suddenly 99.1! The nurse asked me if I was feeling ill, and right then I started breaking out into a sweat. We watched my temp go up to 99.5! "Pretty impressive," she said! Oy, what we go through.

CT124

flippy,

I too have an ILC dx and had BMX with expanders in place. Just finished chemo 2 weeks ago and got behind w expansion bc low wbc. got 250cc in each side 3 weeks ago and PS wants to do another 200 each this week. wants to overexpand before rads. go for tats and sim and tx plan next week and then will begin 1-2wks later. I hate the expander-last week had a little hand swelling and ache-they were not sure if it was due to expansion or early lymphadema, but seems to be gone now. This worries me heading into radiation.

Melbello

glad to hear it is going well w expander. Sorry to hear that it will be 6 mo after rads for surg. I haven't gotten clear answer to time frame yet-will try to this week-I was hoping it would be more like 3 mo, but at this point what is another 3 mo. I see you are in MA. I have 2 children-one still in college in Waltham and one now living in Brighton so get there frequently-it's only ab 2 1/2 hrs from me. Are you anywhere near there.

MelBell07

19 rads down, and my skin started to sting a bit. I checked myself out in the mirror, and saw a sort of red rash-looking reaction all around the radiated breast...but not the breast itself. I see a spot that's definitely darker around the spot they radiate for the nodes, but there is a lighter red burn underneath that, that extends beyond that spot. Is this normal? 

CT - Waltham and Brighton are more toward Boston, I live in Worcester. It's not far though, maybe 45 mins without traffic? I have to get to Boston to see my med oncologist, so I'm out there relatively frequently. 

CT124

I go by Worcester quite freq. It sounds as though your expander is not giving you a problem? What have u been using on your skin?  Can't wait to start and be done.