October 2010 rads

slh_tn

I am also starting rads this month.    I had my mark up and simulation on Monday and will go back this Friday for my initial set up.   Like several of you I am still experiencing SE's from Taxol since I'm only a couple of weeks out.   Has anyone else been emotional since they ended chemo?  Believe me, I'm not sad about ending chemo.   I'm hoping it's just the transitioning to radiation and not knowing what to expect.  Or many it's just being tired of being tired.   Reading your posts have really helped.  It's good to know that others are experiencing the same thing.  

JFV

Hello everyone.  Welcome new folks to the club no one wants to join. 

I start rads on Friday and am trying to not think about it. 

I still struggle emtionally and physically post mastectomy and chemo.  We've been poked prodded and poisioned to the extreem..  If we didn't have an emtional reaction I don't think we would be normal. 

These boards have become my safe place to vent.  Hang in there everyone.

fayebu

Thanks for the encouragement. it is good top hear from someone  who is  able to work during treatment. Today was day 2  and I am planning on working straight through.  So far  so good . am using Tom' s deodorant (no aluminum)  and am keeping an eye on the skin.

Linda603

I will also be working straight through treatment.  I had to adjust my hours slightly at work, but so far so good.  A little more tired at the end of the day, but I think right now it's just from adjusting to the new schedule.   I am also using Tom's deodorant, but only on the side being treated.   

quiche

I will get my first blast this afternoon and have to agree it has been an emotional time. For me it's more about the transition. Every phase is a whole new world. You just become an expert on chemo and then have to figure out the mystery of radiation. I have to say though that now that I've dug my heels in and much thanks to this group I'm ready. I'm even beginning to get butterflies at times thinking about getting past this milestone and imagining some sort of normal. I am 3 wks out of chemo and have just started to feel an upswing the last couple of days. I don't want to jinx it, but I notice longer periods of activity and I actually had thoughts of getting on the treadmill today. Those thoughts have since passed, but at least I had them . . . it's a start :-)

Joan888: Having the same schedule I look forward to comparing notes and having a rads buddy :-)

CT124: I have my first lymphedema evaluation on Oct 24 so I don't know what type of treatment or prevention they have in mind yet. I will definitely keep you informed as I learn more (once again, a whole new world, ugh!)

DawnKY: Thanks for the update on the breast pain. Nerve regeneration and stimulation sounds like a good thing. Next time I have them I will be thinking good thoughts :-)

Hearing the debate about sentinal boipsy and node dissection has caught my attention. If it's deemed unnecessary I will be so happy for those to follow, but pissed!! since I had both on both sides ha! Makes me wonder if much of what they're doing today will go by the way of leeches and electro-shock therapy tomorrow, especially chemo . . . geez louize what a freaky treatment.

Hang in there everyone. We really will get through this . . . together.

Love and hugs,

Lorraine 

quiche

One more thing, for those of you working through all this . . . you're AMAZING! I can't even imagine.

Beanius

DesignerMom - Yippeee!! thanks for the welcome and let's get this next thingy done!!!! Will we have matching tattoos??? (tee hee)

Toni30 - Thanks for the info, I will talk with my rad onc on the 22^nd see if I can get more info. Boy 3 weeks instead of 6 or 7 would be great!! Oh, reading on maybe the Canadians are doing it to get patients thru faster??? Will have to talk with rad onc for sure.

MHP70 - Does bug to think of being over treated. I'm not sure if I needed all the stuff, including chemo, but "too be safe" I've been following the standard protocol. I had the SNB (2/6 positive nodes) and the nomogram said there was only an 7 to 11% change of more node involvement. I wasn't going to get the full axillary dissection but my BS, & family (excluding DH) insisted. Guess what? They took 15 more nodes with ZERO positive. My gut feeling was I didn't need it, oh well. On the positive side this info plus a low oncotype dx score of 6 got my a lighter chemo. I have such confidence in my medical and radiation oncologist, so will see!

CT124 - I couldn't agree more, I'm sooo tired of being a patient. It's been a tough year for sure, but we will get through it!!

Linda603 - Glad it not hurting. Best wishes going forward.

CELinVA - Thank you so much for sharing your experience.

BetsyP - Since I just joined, I say welcome!!! I haven't started yet, maybe mid November, but I'm trying to get prepared. I'm still in CMF chemo with 2 cycles to go and my start rads just before my last chemo cycle for insurance reasons. I'm trying to get through by year end. Sure hope the pain gets better and you get that bronchitis kicked!

Cmksocal - Welcome to you and it looks like you got to skip chemo, that is fantastic!! That would be so nice to be through by Christmas!!!

Beanius

I must have missed a page, please forgive my KEE-MOH brain!

DawnKY - Love your avatar! Thanks for sharing your information. I sure hope your pain is not too bad.

Slh-tm - I still have 2 cycles of chemo (CMF) to go and have been on an emotional rollercoaster. Before starting cycle 4 of 6 was a real low as it seemed I had gone so far and sill had so far to go. My medical oncologist said that was a normal emotional "trough" during mid treatment. Maybe ending chemo and starting rads is another trough. Anyway, I sure understand and hope you are feeling better! It is a lot to go though!!!

JFV - Thanks for the welcome and GOOD LUCK to you this Friday, let us know how it goes. We have been through a lot for sure!!!

Fayebu & Linda603 - Good for you for continuing to work. It's a challenge.

Quiche - Good luck to you please let us know how it goes. Yes indeed, looking forward to some sort of "normal" whew! I go to see a lymphadema therapist Nov 3 - I don't have lymphadema, but am hoping to learn how to prevent it. Thanks for the encouragement! We will get through it!!!

joan888

Quiche... off soon to my first rad TX.  Got my three tiny tatoos yesterday and did the dry run.  It was all painless.  From now on, I will be getting a total of six 10-second blasts each time, total of 28 treatments.

I am working through all this, but I work from home and can adjust my hours as needed.  I am five weeks past last chemo and energy wise.... I am so full of energy these days it is driving me crazy.  I've kept up a pretty good exercise program and am getting my strength back quickly.  I think that I am just so HAPPY to be done with the chemo.  Now wondering how much energy the rads will zap.  I'll gladly give up some so I can get a good night's sleep.

This whole experience has just been full of surprises.  Heck, I asked my 28-year old son the other day if he ever thought that his mom would have tatoos and breast implants!!  What could be next?

Joan

cmksocal

Beanius -  Thanks for the welcome, but I didn't skip chemo -- I did it first.  I had 4 cycles of TC at 3 weeks intervals as neo-adjuvant chemo in hopes of shrinking the tumor so that a lumpectomy was a possibility. And it worked!   Breast surgery at time of diagnosis would have been a mx because of the location of the tumor and my small breast.   I did cold cap therapy during chemo and saved my hair and the neo-adjuvant chemo meant I got to save my breast.

Colleen

ranafazal

Hi there everyone..great to share and read all the bits of info, it really is invaluable and a warm welcome to Colleeen. 

Joan and Quiche, how did it go? I just came back from my first rad..not bad, was quite scared though of the unknown.Anyway i did ask the onc about the thyroid shield and he looked puzzled, then explained that the rad would be done at particular angles so it really would just affect the breast and not the lungs or thyroid etc.The whole process took about 20 minutes,as they had to take pics and do some more measurements.

Joan, it does feel so emotional,for some reason I felt like bursting into tears when the onc started with his briefing.BTW, he also said that the fatigue would probably hit me after the 2nd week of rads.

1 down, 32 more to go!!

hmh23

Well, I just got the call... I go for my simulation on Friday and start on Monday.  They have me scheduled for 5 weeks plus 1+ weeks of boost so I should be finished just before Thanksgiving.

It cannot come soon enough but I am glad that I have all of you here to go through this journey with me. 

Heather

toni30

Ladies:

Sorry for the delay in gettng back - yesterday was a bad day.  The article I referred to is from the New England Jnl of Medicine - February 11, 2010 and I found it on the Living Beyond Breast Cancer website. I plan to discuss it with my onc tomorrow.  If she balks, it's time tomove to Canada - thanks for the tip about the Canadian protocol!    

slh_tn

hmh23,

I love your quote!  It reminds me of what my oncologist says every time I have an appointment.  He tells me I'm healthy except for the cancer.  It doesn't seem to make sense sometimes, but I need to remember that when I get frustrated with treatment.   I just need to appreciate this wonderful autumn weather we are having where I live.   Wishing you all a wonderful day tomorrow!

hmh23

slh_tn; 

That quote is from one of my favorite books, "There's No Place Like HOPE" by Vickie Girard.  It is a wonderful book written by Vickie about her diagnosis and her life with cancer.  I refer to it almost daily.  It is an easy read with wonderful inspiration, guidance, hope and laughter.

Fondly, Heather

joan888

First rad went without a hitch.  Certainly painless.  One down and 27 to go.  My tech people are all women and so wonderful.  I got another lecture about keeping hydrated, using the lotion that they supply, etc... I was told that if I follow their advice, I probably would not even notice any "pink" until around the 4th week.  My appointments are all scheduled for 15 minutes except once a week, I will be meeting with my rad onc and nurse for a quick check-up.  Anyway... it was no big deal today.

Joan 

quiche

Just winding down from my first rad and I agree with joan 888 and ranafazal, "not bad and no big deal." I'd say it was the easiest thing I've done so far. I had my simulation and treatment at the same time so the only hard part was keeping my arms above my head for 1 1/2 hours, but that was just a one time thing while they figured out the set-up. And it was probably longer than the norm since they had to do both sides. After today it should only take about 15-20 minutes.

The tatts were a little bit of a sting, but nothing to worry about (it didn't make me want to go out and get a tattoo though) BTW - joan888: Enjoyed your comment to your son. I'll bet he thinks his mom is a "bad @$$" :-) I mean that in a good way.

Enjoy the evening everyone. We made it through another day.

CT124

Quiche

would appreciate hearing ab your experience w lymphadema specialist. I made an appt with a lymph. specialist-still getting some heaviness and swelling after last expansion-still think something about expansion sets it off?? But after speaking w rad. onc. she recommends at least getting consultation before starting so that hopefully can get it to go away or keep it from getting worse during rads. Another interesting experience to figure out.

I was hoping might be able to do the quicker rads but no.  Rad onc said only is considered for intact breast ie after lumpectomy and is gen not recommended for left because of increased chance of heart and lung damage. So ended up with 25 txs to start in 2 weeks. didn't find tatoos that bad. Also asked about shielding thyroid, but said it won't work as the will need to rad nodes high on chest wall and any shielding would block those nodes.

Glad to hear good reports from so many.

AICa

I am having a difficult time emotionally. I went through chemo and rads 21 years ago for bc on the other breast and it was a dreadful experience because of the way I was treated by staff. I'm at a different facility now but I'm very nervous and anxious. I have asked the techs to tell me what they're going to do before they touch me.

After mapping, I found out that I could request female techs. The first two weeks, one tech was always the same but the second kept changing. Yesterday, there was a third tech. I asked her to leave. I'm nervous enough with two sets of people handling me. At first I thought she was a trainee, but she was a regular; I asked why she was there and was told that they usually have three techs but the third person on duty at my appt. time has been a man so he has stayed out; yesterday, the third person was a woman so they didn't think I'd mind if she came in. I told her that I did mind - twp people was plenty. How many techs do you all have for your routine rads? Does anyone have three??

Twenty-one years ago, it was routine to remove all nodes. All of mine were negative. I was fortunate to avoid lymphodema, but I have no protection against infection. I have to be extremely careful on that side. For example, yesterday, I scratched my finger on a partially open staple and this morning it was infected. So with partial node dissection, things have gotten better. 

CT124

AICa

So sorry to hear that you have to go through this again. I felt very lucky when I went for treatment plan and tatoos the other day. Only 1 tech, and one time rad onc came in and placed the wires prior to the CAT. I was very appreciative that she did explain everything before she did it and did her best to keep me covered as much as possible. I do not start actual txs for 2 weeks, so do not know how many they routinely use.

I wonder if your facility's manager would be someone who could help you with your concerns. Generally they have considerable experience and could communicate with the others to create a plan of care that meets your needs.

Lymphadema and infection do scare me. Do you wear a sleeve or did you do anything to prevent lymphadema?

AICa

CT124, no I didn't wear a sleeve or do anything about lymphodema; and nobody mentioned it. I guess I was just fortunate. I was 42 and physically fit. This time, my breast surgeon gave me an L-Dex test, which is supposed to predict risk; and she's going to repeat it three months after my surgery.

 The nurse is nice and seems to be supportive. I'll be seeing her Friday. But I don't know whether she can actually affect change. 

1marmalade1

AICa:  I always have two techs, and sometimes 3.  I have no problem with that.  I don't have a problem having my FAVE techy, Harrison, with me,  either.  He's funny!  I figure there have been so many people that have seen my mast. site, who cares anymore?  Not me, for sure.

JanetfromPgh

Hi gals...I am joining this group too, since I started my radiation on Sept 28th.  Heather, I am from pittsburgh too.  What part?

I am in week 2 and have had radiation side effects from day 1 unfortunately.  My nipple and surrounding area are pink and warm to touch from the beginning with some swelling (like I had from the surgery).  Currently, I have tenderness at the surgery site and pink and warm all over with some pulling and shooting pains.

fayebu

Hi Everyone,

Today was  day 3. I met with the nurse and my radiation oncologist. He gave me a prescprition for Xclair cream. He said it was very good and very expensive. I am to use it 2 x a day  and at least 4 hours before treatment. I must say everyone is so nice  and upbeat  .. it really helps  in getting through the process.

Cindykaw

I started treatments last Thurs - so have only had 6 - only 28 to go! As to male/female - when I went for my sim and the tattoos - I had a male - and my rad onc was there - he is male as well.  I then looked at the list of techs and I had gotten the only male. He was very caring and tried to keep me covered as much as you can be.  I have two females each day for my treatments now - they are great! I can't see any side effects but I feel like a slight pressure when I lay on that side - I think it could be in my head - too early to prob feel anything? I am three weeks post chemo - but still have the fatigue feeling in my legs - it is very annoying.

I have worked full time through all of this - lumpectomy, chemo, and now radiation. I obviously took day of surgery off and the first day of chemo(1st treatment) as well but have worked rest of time.  My job is as a finance/business manager - so not strenuous labor - biggest danger is falling asleep at my desk - which has almost happened. But when I go home I am tired - I do far fewer errands etc on way home.  And by Friday evening - you wont find me out "clubbing" . I am lucky to stay awake until the TV show at 9 is over.

I will start tamoxifen after rads- the onc here feel that it can cause swelling with rads so like you to wait.  Not really sure if pre or post menopausal yet - will be 50 next week! No regualr periods but part of that was due to birth control before diagnosis.

Sorry to ramble- my current thing that has set me off is that I am having my port (from chemo) removed next week - surgeon says - oh we just numb it up and take it out - very quick. So the paper comes from the Ambulatory Quick Surgery Center - the word surgery bothers me - scares me etc.  My Sig Other - says - it is just a word - you know - it will be quick - after all that you have been through - why should it bother you?  NOw let me say that he has been the MOST caring and attentive and wonderful man for all of this - but he just cant understand some things. hard as he tries..

The nice thing is that all of you understand - even when I know I am not being rational - just emotional - unless you have been there - you cannot understand - THANKS TO ALL OF YOU FOR LISTENING- and yes I am shouting.

Love to all

bopeep

I'm glad to hear the news that 3 weeks of rads might be as good as six weeks because that's where I quit.  And I'm glad I quit because my last scan showed damage to my right lung from the radiation.  I don't know how extensive or permanent it is but I've had a very bad cough ever since started radiation, but that could be due to an infection and/or possible new mets as well.  Of course, my radiation was to my right axillary area under my arm, not my breast where you women are getting yours.

I was part of the Tailorx study back in 2007 for my chemo.  Now I'm in another study that looks at circulating cancer cells to preview whether a chemo is going to be working or not. 

ranafazal

While getting my 2nd rad today, I could feel a distinct warmth in the breast area-don't know if it was my imagination but would like to know if any of you have felt it too-I did mention it to the tech. and he laughed it off, saying it couldn't be..am planning to mention it to the rad onc however

.BTW, I had 3 tech in there, and like Marm, am not really bothered by that...all were pretty caring.

DiamondGirl

Hi there, I was supposed to start my 1st rad on Tuesday.  Was on the table for over 30 mins, the machine was moving around for a few minutes.  Then I was just laying there, arms going real numb, and then the techs came in twice.  Nothing, they couldn't align me properly.  The reason given was that I gained better range of motion on the L arm and they couldn't align my marks.  Had my 2nd CT yesterday and I'm to wait for the call when they have finished re-calculating everything.  I had worked up all those nerves and it's a strange feeling having to go through all the waiting.  But I know it's smarter to be safe than sorry, and I called it the Higher Power Intervention.

It's invaluable for me to keep reading about your notes and what not to do.  I am truly glad that there's so much support here.

My CT techs were super nice, rads techs didn't start off that way but I see an improvement already

Good luck to you all.  I hope to trade notes with you too!

God Bless!

DawnKY

I am dealing with two techs---one female and one male--and it's generally been one or the other.  For two sessions they both were there.  I initially stated that I did not want a male tech, but there was an issue with scheduling so I ended up with the male for my first session.  I was uncomfortable initially but am okay with him now.  I think they are the only two where I go for rads. 

I can see the beginnings of reddening of my skin, and to me it feels warm to the touch.  I was told it would probably be at least 2 weeks in before I'd see any possible skin SEs, but I know I see and feel a change already after 7 sessions. 

I am also having severe headaches (not migraines but maybe just a step below) now after treatment.  Anyone else getting these?  Can't seem to shake them either once they set in.  Tylenol, caffeine, water, and Gatorade have all been tried but are not effective. 

 

mimi9186

I would like to join this board.  Finished chemo 3 weeks ago.  I start rads Oct. 18.  I have had the sim and tats done. 25 rads plus 5 boosts. I hope to get to know you all better.