October Rads. 2009

MTG

I'm at #11 so ahead of most of you October Rads and behind those in September. The biggest thing I've figured out about the fatigue so far, is to keep moving; No matter how early or late I stop, I find that when I do so, I'm pooped and need a nap, I also find I feel much better when I get in some sort of exercise, even a long walk.

PauldingMom

Kimmer51-Interesting that you are doing Taxol and radiation together. I guess every doctor does things differently. 

Debnyc-Accelerated Hypofrationation Rads.? I googled it and it's the same as what my docs. were calling Balloon radiation. But mine was going to be 5 days twice daily. Found out after surgery I was no longer a candidate. Tumor too large and triple neg. status disqualified me. I

EPH 3-12-you are one ahead of me now! The flooding down here set me back a week. I go back on Monday for simulation and hopefully zap number one. Can you find time to see a chiropractor for that neck/shoulder pain. I think that would be very helpful. 

I've gotten back on the treadmill and am doing about 2 miles/30 minutes daily. I would love to start doing some push ups and getting my flabby arms and chest back in some sorta shape but this dang port hurts when I try. Hope to have it out on the 16th or sooner.  

debnyc

I am definitely leaning towards the 3 week accelerated treatment, but still haven't made up my mind l00%. It seems to have the same results and side effects as the longer protocol, but only has l2 years of research to back it up. I found a New York Times article on it and am feeling much more comfortable as it's done at Sloan Kettering and NYU too. Here is the link if anyone is interested:

http://www.nytimes.com/2008/09/23/health/research/23canc.html?pagewanted=1&_r=1&sq=breast cancer radiation&st=cse&scp=4

 I have some questions for those of you who have already started:

What do the tattoos look like? How many of them did you get?

My doctor mentioned twinges of pain or shooting pain as a possible side effect. Any one experiencing this?

Thanks,

Deb

elimar86861

The shooting pains aren't really debilitating (IMO) but you do feel some sharp twinges on some days as the poor surgerized nerves are trying to heal, but instead are getting blasted with radiation.  The twinges come and go.  Never got close to taking a pain med for it or anything.  The other pain most women feel is a deep soreness within the breast.  It's like an old bruise feeling, but without the coloration of a bruise. 

I went the (green) Sharpie Pen route rather than the tattoos & I had four marks.

debnyc

 Thanks elimar. I appreciate the info.

chrisct

I went for my markings yesterday.  I thought the tattoos were going to go on the breast to be radiated, but they put 3 on me - one on each side of my torso and one smack in the middle of my chest between my breasts - but not so low that my bra covers it.  I usually don't wear shirts with necklines that plunge that low, but I'm still not happy that it is there.  I had two people working on me.  The person who did the one on my left side made it very small, the way I thought it might be.  But the other person did the other two and they were bigger.  Figures the one in the middle was a bigger one.  It's kind of stupid, but now I'm thinking I'm going to want to have it removed.  It's just really going to bug me. 

brookside

Hi debnyc

I am doing that shortened version, but I am doing 23 visits.  I started my radion on wednesday so i only have 20 more visits after today.  I am getting tomotherapy by the rad onc who developed tomotherapy so i think I'm in good hands.  (UW Madison radiologist).  He shortened my visits from 28 to 23 and followed the canadian and european protocols.  He said they have great success with the shortened protocols but the mean weight of the patients so far have been around 110 lbs.  he said that as soon as they find that all weights have good outcomes, it will be adopted in the US as the standard protocol and he said it would save alot of people alot of money and time. .  He modified the european to fit me and that is how he came up with the 23.  I get the same amount of radiation as a 28 day person and simultaneously I receive boosts with the tomotherapy.  with tomotherapy, I get a CT daily (10 minutes), wait to see if the ct matches the original ct (5 minutes) and get the tomotherapy (9 minutes).  That is a long time to have my arms over my head and not move but oh well.  I get spasms and just will them to stop.  But I figure it is a stretching program and I'll ultimately be more flexible!  Tomotherapy is relatively new (12 years) and there are only 200 machines in the US and only 12 of them do breasts (Madisonn Wi and my podunk town are two of them) so that is kind of scary but I guess they are getting more and more abundant and it is proven.  My doc told me that this is advanced IMRT and advanced hypofraction so I hope it works. 

debnyc

hi brookside,

great to hear i won't be alone in an accelerated cycle. you're way ahead of me though. i have my simulation on the l2th, so please let me know how it goes. good luck to you.

btw, ll0 lbs was the mean weight of the patients. are you kidding me???? who are these skinny minnies???

deb

brookside

I KNOW ... I can see Europeans being thin but I've seen ALOT of Canadians, and, no offense, but they are built to last...my sister being one of them. 

PauldingMom

110 lbs? Does that even exist in the USA? 

liztaylor1

Hi, everyone.

Had treatment #3 today.  Not too bad.  Thanks to you all I have my lotions and potions ready to go.  The staff were less than helpful - and only if I asked.  I asked one person where I should be putting this stuff. She said "on your breast".  DUH.  That's not QUITE right....  Anyway, using aquafor right after - also have a script for something called "Mometasone Furoate 0.1%". 

Met with a medical oncologist yesterday. She was one hour late for the appointment and then sped through what was  a "canned" speech.  Of all of my doctors, she is my least fav.  Decided against Tamoxifen.  Will take my chances.

I have definitely learned more from these discussion sites than from my health care folks.  For instance, I read on the September rads board, that I'm not supposed to shave on the affected side.  No one else told me that.  I asked the tech about this today and she said "That's right, don't shave on that side".  Not sure if I was supposed to have picked that up by osmosis or something?

Anyway, thanks for listening. I am following everyone's story every day.  I feel as though we are going through this month together!!

Liz

elimar86861

Wow, armpits and shaving came up on two rads threads today.  I just posted on the other that I shaved my treatment side armpit the whole time during rads BUT I could tell from my "skin-tan" area that they were not radiating my armpit so I figured I could go ahead and do it.  (My rads line covers where my SNB was, but goes no higher.)  I'm not encouraging everyone to start shaving, I'm just saying I felt like my armpit was not involved, so I did   

However, I have heard that IF you have had some nodes out, you are not supposed to use a blade razor to shave because of possible infection that, due to the lack of lymph nodes, your body could not handle.   I had two nodes removed, and decided to throw caution to the wind and keep on using my blade razor.  Again, the recommended device for shaving when you have had nodes out is with an electric shaver, so please everybody don't get infected because of my foolhardy ways.

Sunris

Well Crap Elimar.... Now i'm probably gonna get an infection from this cut that just occurred because you said shaving with a blade was ok.....LOL !!   JUST KIDDING!!  

I'm soaking up all this advise ladies as I will go for my simulation next week!!  Thanks to all of you for being so willing to share.

Dawn

dsgirl

Hi again

Liztaylor, glad to hear things are going well, already # 3 eh ?  Sounds like some of the techs and nurses at your treatment center are not very helpful and/or friendly, sorry about that.

I finished # 10 today, feel a little tired, if I sit down, I decide I need a nap, as long as I am on the move, I do OK. Went out and mowed the front yard, chopped some wood, no kidding, we dont even have a fireplace in the house, but we have trees that ever so often lose a limb or two, and I just chop it up and burn in the chimenea outside. Now getting inside, I am pooped, and dont think fixing dinner is in my plans for tonite. A nap sound great though.

dsgirl

elimar86861

Hey Octobers, start stocking up your wine cellars!  A popular topic last month was the beneficial effect of ONE glass of wine daily during rads to decrease skin toxicity.  I only learned of it in my second week, so did have one glass most of the days from week 3 thru' week 5.  My skin got very tan looking, but I didn't have a single blister.  Was it the wine?  Who knows? 

Here's a link for a bit more info.-- http://www.msnbc.msn.com/id/32648681/ns/health-cancer

Maybe I'm lucky, maybe I have a tough hide.  Besides the wine, the only thing I used on my skin was some cheap aloe vera lotion from Walmart.   I think just about any of the lotions or creams mentioned on the rads forums would work fine to keep moisturized.  

Good Luck to ALL just starting out this month!

dsgirl

elimar, now that's good to know, I don't suppose it matters what kind of wine ?

I did some years ago drink one small glass of wine before bed, helped me sleep, and had read it was good for something (I think it was your heart) lol, I forget. Then I didn't have trouble sleeping anymore and stopped the wine drinking. I am thinking it's a good time to start again. I already have 10 treatments done, so I will start week 3 also.

I was given a small bottle of aloe vera gel called "Fruit of the earth" at the center where I have my rad treatments, and it's the label  walmart carries, under $5.00 for a huge bottle. That is all I use too, of course that is because the doctor told me that was all he wanted me to use.

Thanks for the info.

dsgirl

elimar86861

Red Wine.  I enjoyed mine with Cheetos, but you don't have to be as upscale.  Tee-Hee.

Yes, that is the aloe I used.  I will have to follow your progress now, to see if cheap aloe and red wine works for you too.

MTG

For the most part, I'm EATING my read wine. Blend it with ginger and pears in heavy syrup and turn it into sorbet. Add cinnamon and stew somes peaches and strawberries in it then eat them plain or over frozen yogurt. I confess, I prefer dessert to a glass of wine. Although, cheetos sounds strangely good as well....after all one eats wine with cheese !

dsgirl - I love it. For some odd reason, I get this mental image of you standing outside in one the the pink robes they give us at my rads and using an axe to chop down a cancer monster/ tree. Our answer to Paul Bunyon .

jaelsne

Hi everyone,

 My boob just joined the group of the tattooed.  Well, what's left of my boob after a mastectomy, anyway.  I went in for the marking/simulation today.  They wanted to start me on rads next week, but I'm so fatigued from chemo that they gave me a choice of 10/13 or 10/20.  I'm currently scheduled for 10/13, but if I can't get my energy up by then I'm free to give it an extra week.  My last chemo was 9/15, so I wanna have at least a month in between.  Those of you that had chemo, how are you doing through rads?

  Red wine sounds like a GREAT idea!  I'm starting tomorrow!

Jo Anne 

Anonymous

Newbie to the Rads forum. I completed TCH chemo the end of July,(will continue on Herceptin until April) had dbl mast 9/21 and first consult with radiologist scheduled 10/13. The pathology from my mastectomies showed no cancer in any examined tissue (14 Left nodes, 1 right node and all breast tissue.) I'm not planning reconstructive surgery.

With such an excellent pathology report, I question why radiation is necessary. My oncologist says it's a "precaution". I've heard that once you've had radiation for one cancer that you cannot have it if you develop a different cancer later. True or False?

Are most of you gals able to drive yourself to and from treatments by yourself?

So many questions... arrrgh!

Dragonfly1976

Swampy - I am in the same boat right now. I just had my double mastectomy on the 25th. The cancer was all gone from the chemo, but they took out a massive amount of nodes, 22!!! WOW! 21 were totally negative, 1 had some fibrosistic changes or something like that, but it said NO residual cancer so they don't know if there was ever any in that 1 node? Anyway, no residual in the left breast, and none in the right. I asked the breast surgeon if I'd still need rads? She said she thought so because of my age (32) I am VERY worried as my left arm does have some swelling and pain still, though it's only been a week. So she does have me set up to see a PT for 4 weeks to help with ROM and check for lymphadema. I've heard rads can really increase the risk for lymphadema, and also heard what you said that if you do rads there now you can't later? I do have recon planned for April, but if I don't do rads I could go a lot sooner for that.

So frustrating, how do you know if you're making the right decision? Someone told me the radiologist can tell you what the rads will even do as far as % of it coming back? 

liztaylor1

 Hi, Everyone,

Jo Anne: I call the tatoos my "Tit Tats"....

Dsgirl: CHOPPED WOOD?  Holey smokes.  My newest heroine.

Keep those great ideas coming about food and fluids.  Personally, I like the red wine suggestion (thanks, Elimar).  My godfather is trying to "save" me through nutrition advice. Thank goodness he lives 1200 miles away so I can just lie and say "Yep.  I'm eating all of that stuff you recommend".  Not.  Well, he did recommend pomegranate juice - so, I added vodka and VOILA - a martini (only tried that once, BTW).

He also wants me to eat broccoli, kale, and kohlrabi. Oh, and sauerkraut. 

I shaved this morning - NO PROBLEM.

Going back to work full time on Monday.  My rads are at noon every day - but only 5" from my work.

Warm thoughts to all of you (and I mean WARM - stopped my HRT 3 weeks ago and am power surging all of the time).

Liz

Sunris

Ahhh...Elimar....

I must have been psychic when I had that wine Wed. & Thurs Night.... I just KNEW you were going to come here and tell us that it would be good for us    

elimar86861

Ahhh...Sunris...

Who do you like in the 9th race at Belmont tomorrow? 

dsgirl

Hi, just sipping my red wine, eating ritz crackers (the whole wheat ones no less) but dipping the crackers deeply into the chili con queso dip, yum yum.

It was so nice to not have the alarm clock on this morning, slept until 9am. Before I started radiation I didn't know about the weekends off, I thought it went on and on every day of the week, hospitals are open 24/7, so how was I to know?

Anyway enjoying having the weekend off, more so from the 150 mile round trip than the actual 8 minutes I am in the treatment center, do not plan to even get near the car all weekend long. 

 Liz- God bless you girl, I can't imagine going to work and rads too -

dsgirl

WLL

Hello all, I am going in for the simulation on friday. Not sure what to expect. I am planning on having my treatments during my lunch hour, is that realistic? I have to do 6 1/2 weeks of radiation. I did read a blog about her experience of radiation. This is what she did---she applied Medline's remedy skin repair cream in mornings, She applies Boiron Calendula cream right after treatment, when she got home she would apply Lily of desert's 100% aloe vera gel, and before she went to bed she would apply aloe vera gel and Boiron calendula oil. She also took L-Glutamine and Vit-D.  She said the Dr. said her skin looked great for going through radiation. So I plan to do the same regime. Good- luck to all and God Bless    Wendy

PauldingMom

Whoa DSgirl!!! 150 miles round trip!! I'm gonna quit my b!@#$ing. I don't know how many miles my trip is but I'm pretty sure it's not that long. 

Thanks for all the great information. Keep it coming. 

brookside

WLL - Hi do have only done 3 radiation treatments but I do them over my lunch hour and it so far is workable.  I go at 11:30, have a half hour of treatment (really mine does last a half hour) and then I go home...but I do have a 2 hour lunch break which is nice so if I need to nap, I guess I will be able to do that before I return to work at 2. 
I did throw sticks for my dogs today and my boob really really hurt which kind of surpised me as I have been doing that since my lumpectomies and no problem.  that made me worry but I don't know.  Take care. 

Becky

Helen-Jackie

hello

i am starting my first rad tomorrow.. wow.. finally here. i waited a while cuz the doctors needed to get together and figure out if chemo was to be done.. it was decided not to do chemo due to low onco score. but rads and tamox were necessary.. so tomorrow i start.. is anyone taking naturopath supplements during radiation. What did ur doctors say... is anyone going to have ovarysuppression and or zometa.. I will also need to wait to start tamox even though doctors said it was fine to start all. I figure we should take one step at a time.

kt57

Hi Ladies - hereditary bc FORCE pioneer needs our votes:

The Jewish Community Hero Award honors those making strides to repair the world, starting in their own communities.    Our very own Sue Friedman, founder of FORCE, has been nominated as a Jewish Hero.  One hero will have a chance to win up to $25,000 in funding for their project.  However, simply making it into the finals will help us raise much needed awareness of hereditary breast and ovarian cancer in this very important community.  Please vote between now and October 8th to help make this happen AND to thank Sue for creating the FORCE community for us and our families.

So, VOTE, forward to a friend, post to your facebook page... help get the word out. You may vote from each email address once per day.

http://www.jewishcommunityheroes.org/nominees/profile/sue-friedman/