Any February 2012 radiation gals out there?

weinerdoggy56

Jo,

Sorry to hear all of that!  I try not to "what if" too.  It is what it is and we move on and deal with it.  I've been in menopause about 2-3 years so I have no idea what kind of symptoms I may get.  I know I'll be on something other than tamox (starts with an a, but that's I can remember right now).  

 Good luck to you!  I hope your symptoms are minimal.

 Lisa

sherrybaby

Rabbit,

The hand/foot is terrible. My hands have stopped peeling, but the skin never seems to look right even though I keep udder cream on them all the time. My feet are STILL peeling, but with the neuropathy I try to leave them alone as much as possible other than keeping lotion on them too.

 Jo,

The monthly shot to put you into menopause is probably Lupron. Before I had my hysterectomy I got it for 6 months to try to kill off my endometriosis.

My MX was on my left side and my RO explained to me that they will position me in such a way that the radiation will only hit a small portion of the top of my lung.

I hope that everyone is feeling pretty good and has a wonderful weekend!

Sherry

milliesmom

Thanks Kaara, you are right, just scar tissue. I told my doctor I now have contracted psycho womans disease! Had my third treatment today and got the chills again about 3 hrs after it and today was exhausted in a very strange way. I thought I would have several weeks before any of this happened. Has anyone else out there reacted this quickly? Was thinking I would probably just have some redness and soreness later on. Weekend, no treatments Yipee!

milliesmom

Probably Arimidex.

GirlPowerDebbie

Hi girls!

With the exception of the whole cancer thing, it has been a good week.

First of all, Milliesmom - the lump could also be a hematoma at the site where the tumor was.  It took a couple months for mine to be re-absorbed by my body. 

So, on Tuesday I had my consultation with the radiology oncologist.  I really, really like this guy.  I told him I wanted to fast track the process & get going because March 7-12 I have to take 48 people to the Dominican Republic (for my job) and I had to be far enough along in my rads to be able to leave.  I was really expecting some pushback, but they were awesome!  He had me stay that day and they did my simulation, and I had my first treatment Thurs, so I already knocked out two treatments. 

He also told me, as my surgeon had told me at the time of my lumpectomy in July, that I would be "good" for radiation because of my small boobs (finally, some blessing for small boobs; plus when I am 65 they will not be hanging down to my waist, LOL!) and also because of the location of my incision (bottom of left breast, inside, at the crease).  So he is boosting the dosage per treatment a bit to get me to 25 overall tx instead of 30, with 5 boosts - so I can be DONE with rads before I leave for the trip and won't have it hanging over my head when I get back.  He even said if we cut it close he will schedule treatments for me on Saturday. Let me say here, that I am 54 years old, in very good health and physical condition (except for the cancer thing), and we all feel I am tough enough to handle it.   I was bowled over at the cooperative spirit.  I have been so blessed, I like all my docs.

During that conversation one of the concerns I expressed was adjacency to my heart/lungs (it's the left boob).  He said they aim them so well and have so much control now there is very little chance of the rads hitting heart lungs.  He did say there was a chance of it catching a bit of the pleura (lining around lungs) which may show up as a dark spot on future chest x-ray but not a big concern.  It may cause a cough during treatment, and he could prescribe something for the cough if it occurred. 

Oh, one more thing ... I asked him about the partial beam thing one of you mentioned, and he said I was not a candidate because for that the tumor had to be 2cm or less.  Mine was 2.2 cm.   

So for those of you who are not that far, I will tell you how my sim went and hope it takes away some of your apprehension.  They position you on the table with a wedge pillow under your knees, and they put what they call a "vac pac" under your head.  You put your arms up over your head and they form the foam pillow thing around your head and arms, and they position you as needed for tx.  Once they get that all situated, they do a CT scan but you are only in the machine up to your chest for a couple minutes, it is not that bad.  The doc came in and marked some spots, then the tech tattoo'd in those spots.  A little pinch and 4 little dots, not too bad. 

When I went for the first treatment yesterday, they first did xrays using the same machine they use for the rads (but the zap time was just a second for each).  They got me positioned, then they took a pic from each side of my body.  I guess they use those images to make sure you are perfectly lined up.  Then they zapped me on on each side, about 16 seconds each.

Today when I went for the 2nd treatment, I was in and out of there in 10 minutes, no kidding.  It took longer to undress & dress than to do the treatment. 

I am told it is a couple weeks before you really start feeling the side effects (skin & fatigue.)  I had to ask for skin care treatment.  Basically it said NO BRA, aloe vera gel, dove unscented soap, no sponge or washrag in the area.  Time will tell.

I hope this helps!  Everybody have a great weekend. 

Hugs to all ... Debbie

ashleyftaylor

Hey Relda-

I did partial breast radiation, too. I Was diagnosed in July 2011. I had lumpectomy in Sept and finished the radiation in Oct. Then started chemo on 10/24.

I loved the radiation. It took one week. I had the balloon installed on a Friday.  It wasn't too bad. It didn't hurt but I had to change my breast's name from Wilbur to Wilbur Frankentitty I try and keep things light. It's just how I cope. I started treatment on Monday and did 2 times a day for the week. The balloon was removed Friday after my last radiation. The treatments themselves only took about 7 minutes. It was really awesome. 

I was so happy with my choice to do the partial breast radiation study. To not have the side effects of full breast seemed like the obvious choice for me. 

After I started chemo, I did end up getting radiation recall. It presented about 10 days after my first treatment. It wasn't too bad and only lasted about a week. R Recall is very rare, I'm told by the docs. That's why they didn't mention it.

I hope that your treatment goes even better than mine did. If I can answer any questions, please let me know. Good luck and good vibes. 

Kaara

ashleyftaylor:  I wanted that as well, but the external partial breast rads. I guess I waited too long because my surgery had healed so well that there was no evidence that it ever existed according to my RO....disappointed!!  They tried to get me into a three week program and I refused, so I'm not doing rads at all.  Because of my age (71) I have that option, so I took it.  I'll just make sure I get checks alternating with thermography and mammos every six months.

What is R Recall?  I've never heard of it. 

milliesmom

I have not heard of the external partial rads but I have recurrent (axillary) so that may not have been an option. I have only had 3 treatments but am having some SE already which I posted earlier. One thing I did not post is that after treatment 2 and 3 my arm and shoulder ached so bad I cant sleep and aches even when I am up. I thought it may be from the arms over head thing but the side not being treated doesnt hurt. I also get chills and after the 3rd one was weirdly exhausted. No one else seems to have side effects right away so I am feeling very alone. Wow GirlpowerDebbie, you are one tough cookie!

fredntan

Do you'll mind if I pop in to ask a question?



I wont start rads until april?



My family and I now have a distrust of doctors. (The local radiologists were looking at my cancer for two years-called it fibroglandular tissue) well big surprise that's exactly where the cancer wa

My family will want me to do at least two RO consults. One will be at Sloan Kettering with the plan of staying at the hope lodge for those six weeks. The other will be local.a small facility that I've heard is supposed to be very good. It would be very conveint. Its on the hosp campus that I work at. I really want to go back to work.



But I also want to get the very best RO place.

Kaara

fredntan:  Get an opinion from Sloan Kettering, ask them for ALL of their options for treatment.  Do your own research as well.  Get the second opinion from your local facility and if they can do the same treatment that Sloan can do it might be more convenient to go there.  You also want to ask about the equipment...is it the latest technology available, and what is the experience level of the people performing the service.  

All the best to you in making you decision.  Praying that you have a positive outcome. 

fredntan

Thanks Kaara,

sounds like a good plan. trip to NYC first.

Good luck in rads girls, I'm right behind you'll 

Relda

Good morning everyone!

 Glad to see some new faces, welcome aboard.  

 Ashley - sounds interesting, I had thought at first I'd be getting the balloon thing too after doing some initial research but its not part of the protocol for this trial.  Mine is called "A Phase II Study of Repeat Breast Preserving Surgery and 3D Conformal Partial Breast Re-Irradiation (PBrl) for Local Recurrence of Breast Carcinoma."  Fancy!  LOL.  So no balloon for me, and its 2 x a day for 3 weeks as opposed to one.  Last time I had horrible blisters on the underside of my boob along the crease and up the side in the cleavage area - I am hoping that since this will not be whole breast radiation that will not happen again.  It was pretty nasty.  BTW I cope by using humor as well, I don't have the time or the energy for too many pity parties.  I go there once in awhile but I try to keep things as light as I can, seems to make it go faster and easier.....Radiation recall sounds like it presents alot like a cellulitis infection.  Which I've had to deal with twice since my first diagnosis.  KNowing me it would not surprise me if that happens to me as well, I tend to get the SE's that only happen to a small amount of people.  I'm just lucky that way   What chemo are you doing?  Hope that is going well for you.....Thanks for your good vibes, I start Monday and am looking forward to getting it done!

 Debbie - so glad to hear you got everything worked out regarding your work schedule!  I wish I could work during all of this but working during chemo is not an option for me   Your trip sounds interesting, I worked during rads the first time around and even though the blisters got pretty bad the last few weeks it didn't affect my ability to do my job.  Hope it all goes smoothly!

Fredntan - welcome!  And I agree with Kaara - go to Sloan first and find out exactly what tx plan they have devised, get the second opinion from your local place and see how they compare.  Then do what feels most right and comfortable for you. 

Have a great rads free weekend everyone!

Judy2013

Hi Ladies,

 I will be joining your group for February Rads and hope to get some advice if I experience any SEs.  I had my first Rad last Friday, Jan. 27 and will be getting 30 in all (5x week, 6 weeks).  I  was a candidate for partial-breast, external radiation which would only be one week in duration for 2x week; however, decided to go with the standard whole-breast instead. 

 I, too, was freaked out about the possibility of injuring my lung (right side), but was told that IF it did happen, it would be temporary and repairable.  I am waiting to hear my score from the Oncotype DX test to decide if I will be needing any other treatment after the Rads.  Other than this, I am clueless and still have meltdowns thinking about the whole thing.  I am planning to work (teach) every day and then have treatments at 2:30, go home and take a nap. 

kelliott123

@weinerdoggy56

The radiation tech told me that the tatoo on my right side (left is the tx side) was just to check that I was level.  For some reason the image of myself in as a human bubble in a giant level machine got stuck in my head and I couldn't stop giggling.

My first session is this week, I hope I can keep the giggles at bay.  

weinerdoggy56

@kelliott123

Oh my goodness!  I hope I don't picture that when I start mine.  Too funny!!

bak94

Hi everyone! I go for my simulation appointment tomorrow. I was suppose to start rads in Jan. but have been dealing with an infection at my port sight, they had to remove my port but the incision is not healing. So I am hoping to start in Feb! My last chemo was Oct. 27 and I had a bmx Nov. 30th so the further I get from chemo and surgery the more nervous I get! I had a complete response to chemo, but I had positive inoperable internal mammary nodes, with one extending to where I am technically considered stage 4, but my mo says more like stage 3 locally advanced. I have been through this before, but it has been 9 years so I am a bit forgetfull!

SuperFoob

Howdy!

May I join...purdy pahleeze?

I start my rads tomorrow. I already did my simulation, etc... I was supposed to start last week but it had to be delayed because of axillary cording and a seroma at my SLND incision. I have had physical therapy for the last week and I'm looking good to start. I will see my BS tomorrow and she will have the final yes to get me going, the PT thinks I should be a-okay. I want to get this show on the road!

I have already done chemo (DD AC 5x and Taxol/Carboplatin 8x), Oophorectomy and Unilateral NSM with immediate implant and Dermal matrix reconstruction.

I am stage IV but I responded so well (liver mets are gone) and am in otherwise great health so they are treating me as if I am stage IIIa.

BTW: while doing chemo, I took 30g of Glutamine everyday (10g/3x day). Never got any neuropathy. During the Taxol/Carboplatin, I put ice packs on my toes and kept my hands in frozen peas throughout the infusion. No nail issues at all. Granted, everyone is different and maybe wouldn't have gotten neuro or nail issues anyway (I didn't get sick during chemo, only bone aches from Neulasta)...but you never know.

Regarding rad skin care: I have to wear a bra 24/7 so that might become an issue. So far, the rad nurse told me to use 100% Aloe Vera gel (after treatment, not before) and as time goes, if I have issues, they will prescribe stuff.

rabbit

Wow, we have a lot of new ladies! I had my ooph/salp yesterday, very sore on the left side but nothing pain pills don't help with for the most part. 

I do my dry run on Feb 10th, I had my tattoos put on last week. I am online off and on, resting a lot so don't mind me if I am not online much for several days.

Hugs to all and best of luck to the ones starting rads already!

el-jaye

I'm coming to the party!  I had my simulation last week and am just waiting for the booking office to get me scheduled.  5 weeks and 5 days is my lot.  The 5 days are the boosts apparently.

My RO told me that after the time I had with Chemo this radiation treatment would be a cakewalk.  I sure hope she is right!  I am a bit concerned about skin issues as my breast is quite large.  Not sure what type of bra to wear, the technician told me that my underwire, full support bra would not be good.  So I am looking for a soft bra with support.  lol - that is something that does not exist!  I guess I will be back to the sports style bra that I work after surgery.  

What a ride this has been!  I am so grateful for this forum, a place where I can get information and support, and hopefully contribute in some meaningful way!  Thanks Ladies!

WaveWhisperer

I probably won't start radiation until March or April, but I have some questions as a result of my meeting with my MO yesterday. I'll finish T/C x4 on February 21. I knew there would have to be some break between chemo and rads to let my body heal, but the MO blew me away when  she said it might be up to 6 WEEKS before actual radiation began. She did make me an introductory appointment with the RO for March 6 and said I might be able to "negotiate" a quicker start.

For those of you who are further along, why would it take 6 weeks? How many "preliminary" appointments are necessary? I guess I'm naive. I figured that they could do the tattooing, fitting, simulation in one visit.

I'm just frustrated. After DX last October, my BS thought I'd be a good candidate for the accelerated, partial-breast irradiation and then I'd be done in 5 days. During surgery, she discovered a positive node, so she ruled out the quick rads. Then, after the Onco score, we decided on chemo. My "finish line" just keeps getting pushed farther and farther back. I want this to be OVER!!!

I'll read the moderators' suggested posting in the meantime.

Thanks for any help! 

I' 

GirlPowerDebbie

Hey Wave, go back and read my post about how fast my RO got me going. Got the consultation and simulation done on the same day, and had my first tx 2 days later. Be assertive!  Before I even started chemo they told me there would be about a month gap between my last chemo and first rads, and that schedule held true ... but I pushed hard to stay on that schedule.  I was pretty adamant I was ready to keep moving.  I just wanted to be DONE with it.  Good luck! 

sherrybaby

Wave, I wanted a little break between the end of chemo and the start of rads, but my appointments w/the RO got set up pretty quickly. I had my last chemo tx on Jan 13th. Visited with the RO on the 23rd and he set up my planning appointment for the next day, simulation today and start 33 visits tomorrow. All of that to say that I am unsure why it would be necessary to wait 6 weeks to begin your radiation treatment.

I now have blue and green squiggles, x'es, and dashes all over my left chest area. No more v-neck shirts for a while.

Good luck to everyone who starts soon and minimal SE to everyone already undergoing tx.

Sherry

SuperFoob

El-jaye: I have big 'uns too. My original boob on the right is a DDD. My foob on the left is about a C-D. My band size is 36-38. I want to be smaller when all is said and done. I am really liking my foob! Anyway, I have been wearing my surgical bra. It has a wide band along the bottom that helps with support. I also just purchased a couple of full size Coobies (google it). Doesn't have a lot of support but my honkin' huge boob does fit in it. I also purchased a Bali cotton bra that is full size and seems quite comfortable and supportive with no underwire. The style number is: 3036. I got it at Sears for $22. The Coobies were $24 each. Another idea...I can't wear an underwire on the foob side per my PS. I just took the underwire out of some of my old bras. Works like a charm but I wanted some very soft bras to wear during rads hence the Coobies and new cotton Bali.



I just had my first rad session. So far so good...

el-jaye

Geegster - thanks so much for the suggestions.  I am going to look into both the Bali bra and the Coobies -  I thought about removing the wire from an older bra but the fabric is not super soft and there are seams that could be uncomfortable.  All this fuss and bother!  I will be so glad when I am finished with all this!  The last 6 months have been such a roller coaster ride.  

WaveWhisperer

Debbie, thanks for the suggestion to go back and read your excellent account of your introduction to radiation. I will definitely push the RO to fast-track me. One other question: How long did that first simulation appointment take?

Sherrybaby, thanks, too. Good to know things can go a bit faster. 

shron

Hi all, I was diagnosed in Oct of 2011 had lumpectomy Dec. 21. I am scheduled to do my simulation on the 9th and have first of 33 treatments on the 10th. Don't know why I am so emotional about this, not really my nature only had one big cry since diagnosis.

sherrybaby

Had first treatment today. From undress to redress it took about 15 minutes! Amazing.

Sherry

GirlPowerDebbie

Feel the wave!!!  That first simulation took about half an hour.  Today I had tx #6.  I am in and out in about 15 minutes.  Once a week I see the nurse and RO after my tx.  Once a week they do a blood draw (finger stick).  Once a week they take an x-ray (use same machine as rads).  I asked why and they said the doc compares to original to make sure no adjustments are required.  All that weekly stuff happens on different days. 

Shron - you are entitled to your pity party, we are all.  This sucks.  You are in a good place to whine.  The good thing about the 'board is you don't have to keep your game face on all the time here.  We all understand having to hold it together, be strong, maintain a great attitude, etc. with family, kids, co-workers ... but sometimes you just need to dump your bucket, and this is a safe place to do it.  It's OK sweetie ...  

Hang in there!

Debbie

pcollins

Kaara, I read about your change in diet.  Where can I get some information on this type of diet?  I am a young 72 and interested in avoiding more breast cancer if possible thought diet.  Begun my radiation on Jan 12th, 2012 and had my 15th treatment today.  Snow storm in Denver will prohibit the final 16th treatment so will probably have it on Monday depending on the snow.  Elected to forgo the 4 boost treatments due to other health issues.  Thanks for whatever information you are able to give. BTW, I went to a nutritionist and she was hopeless and useless.  What a waste of money and time.

Judy2013

Had my 5th treatment today and, so far, no side effects.  Like sherrybaby, it is in/out in 15 minutes and then back on the road heading home.  I have started applying Jeans Cream nightly to help ward off some skin burn issues.