October 2010 rads

I too pray on the table while getting zapped.  Then the techs walk back in the room and scare the he** out of me.  So much for a religious experience!

Welcome Ginger 424.  This is a great place to come and compare notes, and its good to have you.

marm, you're a  bit ahead of me and Rose6, we're right together.  And CEL, the end is in sight for you!  It sounds like you're doing a great job managing the side effects.  It's interesting how we all have pretty much the same treatments and they affect each of us differently.  I'm still having a problem with the fatigue and I just don't seem to have much appetite now, but I' m trying to force myself to eat.  They sure don't want us to lose any weight (or gain, for that matter).

You and I have the same routine, AICa, once a week nurse visit followed by the rad onc.  I don't see the point of the nurse visit either, just makes everything take longer. Her job is mainly to make it easier for the dr, I think.   I get x-rays once a week, for "quality assurance of your treatment".  I'm going to ask next week just what can they tell about the treatment from the x-rays.  

Chiefswife, I do a lot of praying too, and I don't know how anybody gets through this without being scared.  I'm scared to death, think about what all could happen and how my husband and children would be if I weren't here, just on and on.  I cry a lot, but less than at first, and now I try not to do it around my husband.  Lord knows, he's been here for me through all of this and I try not to let him see how afraid I am.  For the past three nights, I've gotten a call from various organizations wanting me to donate for BC.  I hate those now--as soon as they start talking I start to cry.  

One thing I've been imagining when I get the tx is  how the radiation is finding and killing any of those little suckers that think they got away.  Sort of like die, you evil little cells, just die!  Dumb, but it seems to help!

Kathy

For anyone experiencing depression and anxiety while going through this cancer treatment journey, please talk to your doctor.  I was having problems with crying bouts that seemed to come out of nowhere.  After doing some research, I discovered that my chemo drugs and the steroids could be blamed for mood swings.  Asked my onc nurse about it and she immediately said that many of their patients experience it and they could prescribe a mild anti-depressant if I wanted.  Now that was something that I never thought I would need.  My onc gave me script for Citalopram and it was just the ticket.  Not sure how long I will continue to take it.  It takes a few weeks to really start doing its job, but I am feeling a whole lot better and back to my old self, or my "new" self whatever that is these days.

Just had zap 6, and on zap 4, realized that I've developed axillary web syndrome.  Lovely.  Have a taught cord under treatment arm.  Made appt with PT and have massage scheduled on Monday.

For the first time in a while, I was pretty demoralized.  The only thing from the beginning I've been vigilant about is arm health, as I'm a physical worker. I've read a lot on this, and it sounds like it self-corrects, but I've got to be careful as heck about lymphedema.  I was so disappointed when I found out they took SIX nodes--I was negative.

Anyway, just have been a little sad and unhappy that the radiation precipitated this AWD....

As for 5% chance of heart damage, that sounds pretty extreme.  Be sure you are basing that info on current treatment options, not radiation technologies of 20 years ago.  A lot of the studies are based on different radiation technologies.  They have gotten better with time.  I was also encouraged that one guy told me today the reason they do them over such a long course is they've found longer treatment at gentler doses causes much less SEs.

Hello October ladies!

I'm a little late in joining as I am almost through with rads - BUT (and it's a BIG BUT), had to take a week off as I have radiation burns under my breast in in my armpit.  I am very large breasted (D to DD depending upon the bra), and about 2 weeks ago right under my breast it was sore and chaffed.  Called it out to the MD and he gave me some powder to put in sterile water and told me to put it on a sterile pad and let it soak for about 20 minutes, twice a day.  Didn't do anything except get my clothes wet!  Tried Benedryl gel (for drying it out), cortisone cream (neither works very well).  Finally just took wads of gauze and put it over the chaffed/raw area and it started to heal.  But now my underarm is so raw, red and inflammed that I can barely move my arm.  Have painkillers which help, but everytime I try to move my arm I get so much pain. (imagine a raw open blister under your armpit and you get the idea).  Also have intermittent sharp jabbing pains in my entire breast.

I have two more all breast radiations and five targeted radiations.  I just wonder if I really need these.  I mean, just how much can the final few help?  I'm so tired of this, I'm so tired of always hurting, I'm so tired of everything!!!  I've used up just about all of my vacation time going to a from radiation every day.  I show up on time and they are late getting to me so instead of taking a 1/2 hour to 1 hour vacation EVERY day, I have to claim 1 hour to 1 1/2 hours instead.  Or, instead of working 9.5 hours a day I have to come in earlier and stay later to make up the time.  Very tiring.

I know no one here can help me, just wanted to vent a little I guess.

What is axillary web syndrome? I never heard of that. Thought I was starting rads next week and got a call from the onc office that they scheduled it too soon to my last chemo. Now I start the 26th.

Someone had posted "the reason they do them over such a long course is they've found longer treatment at gentler doses causes much less SEs." Now I'm concerned because my radiation onc recommended that I do a higher dose with less treatments. She said studies in the UK and Canada show same results and same SEs as doing less dose, more treatments. And if thats the case why wouldn't I want to get this done with sooner?

I also have to check with her on the 5% heart damage statistic she gave me. I think it may be 5% IF the heart gets caught in the beams, not 5% overall. And now I have to ask her how do you know if it got caught?  Always more questions!

And I've been crying and moody all week too. This is the first time in 3 1/2 months that I haven't had chemo. You'd think I'd be so happy that part is over. And I just keep feeling upset. Maybe thats normal after chemo ends??

Interoperative radiation is the cutting edge technology.  My BS (Dr. D. Holmes) at USC/Norris is doing some of the clinical trials and a good friend was able to be in his trial.  About 4 years ago she had a lumpectomy and a big dose of radiation during surgery and that was it!  And this friend's step-daughter was diagnosed with BC a couple of years later and because she lived out of state she came to USC/Norris and needed to have all treatments done within a month.  She had a lumpectomy and radiation a couple of times a day for several weeks (guess this is the Brachytherapy).  Both women are doing fine.

Because I had neoadjuvant chemo I wasn't a candidate for  Dr. Holmes' clinical trial on interoperative radiation.  Brachytherapy wasn't mentioned.  I live 20 minutes from the faciltiy and am out on disability so there is no need to rush me through.  

BTW -- Dr. Holmes said in the next trial they will be taking in patients who had chemo first; but we both hope I don't need to be a part of it!

Colleen 

workmother,

Sigh. I know what you mean. I think the upset is anxiety and unfortunately, most of us experience it, so YES, it is totally normal. You have just very recently been through a helluva thing. During and after my radiation last year, I was having vivid, bad dreams and waking up in the middle of the night like a supercharged zombie, going to the computer and terrorizing myself by googling everything I could on breast cancer, statistics, radiation, and the treatments that I might be receiving. It is important to be informed about radiation, because last week I needed a complete set of dental x-rays and I didn't find out about thyroid guards (apparently Dr. Oz was talking about them recently) until after I had the x-rays. I found out about about them here, on this wonderful resource. The female periodontist knew my situation and yet a thyroid guard was not offered.

I was diagnosed when I went for a complete executive health check up at the Mayo Clinic. FIRST they took a chest x-ray, even though I had no complaints. Then I was scheduled for my mammogram. I was so freaked out that I had had that chest x-ray when I found out about the mammo results! I ended up having my surgery at Mayo and they were great, but that chest x-ray still haunts me.

I did not have chemo, though one oncologist wanted to sign me up for a trial she was participating in, two others said that the risks outweighed the benefits for me. But the diagnostic procedures, (needles in my nipple, SAY WHAT?) surgery and radiation (the humiiiation of my boob dangling and being zapped by a male technician? I wondered why, on my last day of treatment when I was lying there with both breasts exposed and pointing up to the ceiling, he took a photograph from several feet away. Is that usual, anyone? Anyway, my shock, fear, and yes, embarrassment of it all made me a nervous wreck. I felt as though I had failed my family and myself by getting this disease. I was prescribed Clonazepam, which I guess is pretty strong stuff, but it eliminated my anxiety which was making me obsess and which was disturbing my sleep. I was not depressed, I was fearful. I was even ashamed, which was ridiculous. Clonazepam helped me with all of that. I had no noticeable side-effects or any hangovers from it. I felt much more "normal" and balanced and able to cope.

I'm a year and a half out and taking Arimidex, and I'm having some new side effects--mouth sores--nothing too troubling, but it seems like there are always questions for the doctor or the Great Google in the Sky. I, too have been worried about possible radiation to my HEART, since heart disease runs in my family--at least in the men. I have my appointment with my wonderful female radiation oncologist at Sloan Kettering in NJ on Wednesday. I intend to ask her about that specifically.

I'm so sorry you are crying and upset. Perhaps it is like post traumatic stress. Just keep in mind that you are reacting as any woman would. Ask your doctor about anti-anxiety meds and don't worry, you won't have to take them forever. There is no need to suffer from anxiety right now. And you can feel good again after breast cancer. You will occasionally have some moments of anxiety surfacing, but they becoma less and less frequent. Actually, life held some nice surprises in store for me, opportunities I might not have jumped on had I not had breast cancer. My motto is either learn something new, or do something different. It helps boost your confidence and connects you to new people or creative experiences and your brain likes that. 

Hugs and all the best to you.

Penny (or Gwerfil, which is Welsh)

gwerfil - I refused to allow them to take photographs of me. The day of mapping, the tech got out a camera and said she was going to take a photograph of me; I freaked, and she then said she was only going to take a photograph of my face so they could identify me; otherwise, they would ask my name and DOB every time. I said I would be happy to supply my name and DOB but NO PHOTOGRAPHS. Then, she said that after the mapping she was going to take a photograph of my breast. I guess NO PHOTOGRAPHS means different things to different people. But I did eventually explain it to her, and she put the camera away. I consider every procedure a decision to which I can say yes or no, but each decision is not without stress.

I completed #8 on Friday and so far so good. I do notice that my shoulders and arms are especially tired and heavy (I'm doing both breasts and lymph nodes on one side), but no major side effects except general fatigue and that may be from an accumilation of it all . . . surgeries, chemo, rads. Seems I never completely recuperated from one before I started another. (I went on a fast track to be done by Thanksgiving). I do notice an improvement since I've had a weekend off which gives me hope that when this is all over and my body has a chance to rest for awhile I will swing back (at times I wonder).

I also felt a stronger sense of emotion lately. I'm so ready for it to be over and wonder how much a body can take. I started Femara at the same time as rads so that may be taking a toll too . . . hello hot flashes! I take a shuttle to my rad treatments and the first day I felt like I was being driven to a prison camp or something. Here I am on this rickety old shuttle that nobody wants to be on, going to a place that nobody want to go. Since I've gotten to know the other passengers it's turned out to be great experience, there's a true sense of comaraderie, but the emotion did get to me at first.

They say the SEs tend to appear more after the second week so we'll have to see what surprises next week brings. I will also be seeing a lymphedema specialist on Thursday and know a few of you are interested in that so I will be sure to report back.

Wishing you all the best,

Lorraine

Roberta2, I think that's super-nice, but I worry it is putting pressure on you at a time you don't need it. If you feel compelled, I love LUSH bath bombs.  Fun, and sweet, and you can order online.  I might also consider a donation in their names.  Most people today are thrilled to receive that as a gift.  It is spreading generosity to those who need it.

Designer mom-we will be starting the same week. I am now starting on Wed bc developed some lymphedema in arm on site to be radiated and needed to get consult and start therapy for that as it is anticipated it will get worse when RT starts. I am amazed at chemicals inproducts and thought I was pretty good about that. Have found some interesting nat. products that I might try, however, my onc only recommends aquaphor and Toms so will start with that and see how it goes. I just hate aquaphor. We are only ab an hr apart. I am in ct right over the border. Was actually considering NYU for its prone program, but after chemo decided I didn't want to commute everyday for 5-6 weeks.On weekdays traffic can add another hr or more. Hope all goes well for you today.

rose6 and working mom-saw your post ab 5% heart damage. I am also concerned ab that as am having L rad-that was why I was considering site that did prone rad. I have asked and never got an actual risk. I am curious-is 5% your potential risk and is it because they need to radiate area where heart falls into the field. I am staring wed and will be meeting with RT before and need to understand this more-please let us know how you do.It seems like everyday there is something more to learn ab and make decisions about. I hope I am making the right one all the time. Can't wait to be done being a pt. Had also hoped that I might be a candidate for the shorter course, but apparently they will only consider it with an intact breast. And then on to tamoxifan.

anacy91355-will be starting wed 10AM-will be thinkingg of you.

mhp70- I started w cord tightening and achy heavy feeling in arm-started after last 2 expansions-got 400cc each side to be overexpanded as apparently RT causes shrinkage. PS said not related so may be coincidence. Got some slight swelling a couple of weeks ago and while everyone said it was mild asked for OT consult. I really believe in early intervention. I thought it was just a small amt of swelling, but consult showed a 13% increase in arm size on affected arm-so now need full program of massage and wrap and sleeve. However after just one week of massage seems much better-have not started wrapping yet per OT, so I am optimistic.am also working w exercise group through one of our cancer support services)Lebel method) which really has reduced the tighness.again so much to learn about and decide.

Anyone having lymphedema issues or an kind of arm swelling???

thanks

deb

CT124 ~ I've had 4 tx so far and DH bumped my armpit while giving me a hug last Thursday.  Now I've noticed a small bruise-like area at the back side of arm pit.  The underarm appears to be slightly swollen.  My surgery was 7/28 and never needed any pain meds, it is bothering me more now than before.  The swollen feeling is similar to the first week after surgery when it felt bigger.  I too wonder if this is because of the bump of his arm under my armpit or is it radiation? 

Diamond girl-I would show it to rad onc or RN. I wish I had pushed for OT consult earlier-I was amazed at how fast it flared up and while it's not back to normal, the swelling is getting under control. Hopefully it will stay that way when I start rads on wed. Hope this resolves for you.

hello I am big breasted and what I am finding is that after 2 weeks of treatments that Ithe breast is denser aND FIRMER AND VERY SORE SOMTIMES...LIKE i SAID i USE CORSTARCH IN THE DAY AND AQUAPHOR AT NIGHT , SO i AM NOT REALLY SUNBURNED, HOPEFULLY COS MY SKIN IS FAIRLY DARK, BUT DEFINATYLEY PINK and uncomfortable cos my bras are tight on that side, so I also take it off as soon as I am home.....is anyone else else experiencing fimness and density? sorry for the caps didnt see that till just now