"Easy" part of treatment? MY A**!

BlueCowgirl

Ok,so whoever told me radiation was easy after chemo and mastectomy was WRONG. This is like the 5th night in a row, too uncomfortable to sleep, I've finally broken down at 2 or 3 am and taken one of the Oxycodones left over from my mastecomy - didn't need them so much for that! Blistering, oozing, just cannot get comfortable. Saw my radiation oncologist today, and he said "this looks just like I want it to." Um...ok...is it me, or is this whole BC treatment thing like a surreal torture regimen thought up by some sick sadist? I mean, next I get to stop taking antidepressants in order to go on Tamoxifen. Whose idea of a sick joke is this?

Gingerbrew

Find out which antidepressants you can use on Tamoxiifen and begin the transition. I can take Effexor on Arimidex.

Get all the burn meds you can from your Doc. His nurse may even be able to get you some samples. Ask for appropriate pain meds to ease your pain, I am surprised the Doc didn't offer. Did you tell him this was really hurting and   interfereing with your sleep? I understand how you feel and how overwhelming it can be. Make the call and tell them you are in need and perhaps you will find some relief. There will be others who write to you that may have ideas to help you too. 

Blessings 

Gingerbrew

PlantLover

I completely understand!  I lost all the skin in my arm pit and across my chest.   The oozing was so bad under my arm that I had to try to bandage it when I went to work just to keep it from coming through my clothes.  Of course, having anything against the area hurt even more so I finally gave up on keeping it covered. It sure didn't help that I got almost no support from the folks at work.  If I had to leave early because I was hurting so bad I was in tears they acted like I just wanted to take the afternoon off.

I'm 16 months post radiation and you can still see the outline of the custom bolster they used for the boosts. Believe me, I used every cream recommended and it didn't make any difference.  Still, get free samples from the doc as suggested.  It might help.  Also pain meds will help, especially at night.

How far are you into your treatments?  I had 38 rounds and the only way I made it through the last two weeks was to have my RO agree to 3 days a week (Tues, Wed, Thurs) instead of 5 days.  Having the long weekends off seemed to help emotionally and physically.

Effexor works well with Tamoxifen - talk to your doc.  I'm on it and it also helps with hot flashes if you have any of those.  When I first started taking it it made me very nauseous and I had to take an anti-nausea med with it for two weeks.  Now it doesn't cause me any problems.

Hang in there - yes, often it all seems like a sick joke!

geewhiz

I was in that same boat. Rads was harder for me than chemo. I lost all the skin in my armpit and by collar bone. It was really painful, but after rads ended...I was all healed within a week or so. It sucks, but goes by fast. Hugs to you!!

lorrhaw

I had a lot of burning and blistering issues under my arm and on my breast area, I even developed a fungal infection which was quite lovely.  The only thing that finalyl helped were these pink gel sheets that are kept refrigerated until they are used.  I can't remember the name of them but I think the word Magic was in the name and they were.  They stuck nicely to my body and I can still remember the relief when I put that cool gel sheet on my body.  The docs at MD Anderson prescribed them to me but I am sure any radiation oncologist can prescribe them.

Good luck.

Lorraine

Megadotz

I think you're tlking about Cool Magic Gel Sheets.  They're used  for burn patients.  They were OTC two years ago when I was undergoing radiation.  They sold them at the drugstore that was next to radiation oncology  in the out patient center.  The  radiation nurse told me about them.  I think they may also be available on line.

Here's the website describing them:

http://www.mpmmedicalinc.com/productdetails.aspx?pin=c.OC.3.p.8

Check with your RO though,  I suggested them to a friend and her RO wouldn't let her use them.

[edited to add website]

mumito

I agree with the terrible burns.Pain and stress. Radiation is far worse than chemo.((hugs)) Keep a close eye on it so you don't develope an infection.I used a gauze wrap taped over the creams and changed them regularly.

BlueCowgirl

Thanks for the replies. The blistering and peeling is just plain gross. It started along my mastectomy scar, and is now throughout my underarm as well. I'm already finished with radiation - I actually just had lots of fatigue, redness and soreness during treatment...which has progressed to exhaustion and the blistering oozing deal just over the past few days. 

My doctor prescribed me Silver Sulfadiazine (Thermazine) cream which I know from previous experience has worked wonders on my horses, but it hasn't been giving me much relief. I will ask him about the cool gel pads...Already have enough narcotics to last a lot longer than this will, I think.

So sorry so many of you have gone through the same SEs and worse...wouldn't wish this on anyone! 

hopeful13

all of this makes me want to scream and cry!!!!!

pejkug3

I hated rads.  I can't really put my finger on exactly WHY - but I never settled into it and I hated every treatment.

I ended up having an open area under my breast, under my arm, lost 2/3rd of the skin on my nipple and had an oval burn mark on my collar bone that looked like a hickey.  Hated it.

The good news is that I healed fast when I finished my 33 treatments.

pupmom

How much are the effects of radiation determined by the skill of the radiologist? I will be facing this soon so I would appreciate info. I have a few choices. One would mean a longer commute. But to avoid RAD torture I would happily endure more driving!

starbeauty

All the same problems as above... Ended up having to paint some kind of crap that was bright orange... Ruined all my new bras... To take the heat and burn out of it. Skin was coming off... And yes going to work with it was a real trip. Had to wear a bra to hold up the other boob... Still have scars and burn marks almost 2 years later. Was so exhausted and depressed. nearly did me in... Didn't go to the last 3 boosts... Called and said I didn't care I was done. Radiation was worse for me than taxol, the red devil, and surgery.

starbeauty

Yorkie... The word from my MDs was that my RO was very good... Don't really know... Just know the experience was different than everyone described. I was in there about 30-40 minutes with multiple precision placements. I ended up with a 5x3 patch coming out my back... Who knows what my lung looks like now... And the burn went half way up my neck, out to my shoulder and down to my tummy.

weesa

Bluecowgirl--your diagnosis and mine are very similar, in fact I was probably 6 cm plus, but was hacked up with repeated lumpectomies before I had a mastectomy, so nobody knows the real size.

I too had a difficult time with radiation. One night I was sitting at my kitchen table, it was a hot July night, and I kept smelling something really stinky. I have four male cats who like to drag dead things into the house for me to admire. I was sure there was a dead chipmunk or something under the kitchen table. I kept looking and looking, and kept smelling the smell where ever I went. Finally I gave up and got ready for bed, and when I took off my clothes from work, I discovered my mastectomy scar had burst open and was rotting! That was the smell! My doctors were really pleased and just kept on radiating me. Eventually my mastectomy scar closed up for the second time.

There are better times ahead for you! I have had nine good years and now looking back don't regret fighting for my life. You won't, either. Stick with us, tho. It isn't easy.

weesa

Bluecowgirl--your diagnosis and mine are very similar, in fact I was probably 6 cm plus, but was hacked up with repeated lumpectomies before I had a mastectomy, so nobody knows the real size.

I too had a difficult time with radiation. One night I was sitting at my kitchen table, it was a hot July night, and I kept smelling something really stinky. I have four male cats who like to drag dead things into the house for me to admire. I was sure there was a dead chipmunk or something under the kitchen table. I kept looking and looking, and kept smelling the smell where ever I went. Finally I gave up and got ready for bed, and when I took off my clothes from work, I discovered my mastectomy scar had burst open and was rotting! That was the smell! My doctors were really pleased and just kept on radiating me. Eventually my mastectomy scar closed up for the second time.

There are better times ahead for you! I have had nine good years and now looking back don't regret fighting for my life. You won't, either. Stick with us, tho. It isn't easy.

pupmom

Starbeauty, I'm not there yet. All we can do is trust but verify, however THAT is done. I switched surgeons because of confusion between drs. and what turned out to be a really bad game plan for slicing and dicing me. I do respect and trust my current surgeon. But flailing around in the dark about all this is what's really scary. Now I just want to get er done and get IT out!

BlueCowgirl

Aaaaah! Weesa, my diagnostic sister, I am going to have nightmares about my scar bursting open now too! I had to laugh when you said your doctors were really pleased...When I made an appointment to show mine the purple peeling mess and he said "this is exactly what I want it to look like", I laughed too. I mean, missing breast, purple blistering scar, burned flesh, hole-in-the-peeling armpit, and this is good? I would rather it had looked like, say, a swimsuit model's...but that's just me... 

shells43

BlueCowgirl.

"missing breast, purple blistering scar, burned flesh, hole-in-the-peeling armpit, and this is good?" Ha, that's exactly how I would describe my last two weeks of rads!  It was really awful. I'm happy to say a year later that I survived it, but still have a tan box on my right side.

Also someone mentioned the skill of the radiation oncologist, but a friend of mine went to the same doctor and machine as me about 3 months after I did, and she barely burned at all. She has almost the same fair complexion as I do, but only got pink in one spot on her clavicle. I didn't get any radiation there, but had a huge raw patch right in the middle (like at the bottom of the V in a V-neck shirt). The rad onc said it was probably from prior sun exposure. He also was thrilled with my "good skin reaction", that's what he wanted to see. WTH?? I took pictures on my phone of my burn for evidence in case he was FOS but I guess it is the desired outcome...

208sandy

I've never shared this except with my onco nurse but Rads was WAY WORSE than chemo - three years later I am still healing but obviously it turned out o.k. the last few treatments were torture and I didn't get dressed for three weeks (thank God I wasn't working) - I wore giant T-Shirts with one sleeve ripped out and I slept on the daybed with my arm draped over the back - I used the "silver" cream and it worked for the burning but OMG the pain and discomfort and the oozing - sorry it was a nightmare and the rad onc didn't show one sign of compassion - at least my PTSD is gone from that particular experience.....

mumito

How come none of us heard any of this info before we went into the torture chamber? A walk in the park(My A###) I would never have agreed to rads if I had had the truthful info.

radiant

BlueCowgirl:

LOVE this post. I relate to posts that tell the TRUTH, instead of the "be happy, be positive, rah, rah, rah, breast cancer, hip hip hooray"

Rads were horrific in terms of energy after the depleting and very difficult chemo. And, it took me 6 months b4 I regained my energy from rads. And, I was in shape prior to starting all of this.

You are NOT alone.

Hugs,

  Kim

o2bhealthy

I actually refused rad's because I knew I did not have it in my to have anymore treatment after BMX and chemo...I was also being a little vain because I knew rads could make recon more difficult, especially with implants. 

I was lucky that my surface margin, though thinner then they like, was still clear.   When I met with the rad onc I kept asking what about SE's? what about the fact I had just quit smoking after being a smoker for 20+ years? what happens if the cancer comes back, would I be able to have rad's a 2nd time?  All she kept saying was 'your young and you handled chemo so well...' what the H#$# does that have to do with my questions!!! My DH & I decided to hold out on rads and keep that in my goodie bag should I have a recurrence in the next 30 years or so...

weesa

Oh gosh, I thought telling you my mastectomy scar bursted open would make you feel better-- at least THAT hadn't happened to you...I don't think it is common.Hope you don't have nightmares, because you are already living one! I'm hoping you are close to the end of eadiation. Sorry about the TMI!

BlueCowgirl

Weesa, don't worry, if I have that nightmare, I will wake up thrilled if it is still closed up, LOL. So many nightmares, so little time...The ironic thing is that I am done with radiation, as of a week ago. My RO told me to expect things to get worse for about 10 days post Tx. So day 7 and still no funky smell or exploding chest...3 days to go, so I'm probably safe, right? That must have been horrifying for you...the things we have all gone through would have blown my mind before this whole thing started. One thing about BC - I have found strength I never imagined I had. Don't get me wrong though...still not espousing the "it's a gift" crap. Lousiest gift ever.

Elizabeth1889

I agree with pejkug3.  I hated rads.  Every treatment was emotional torture for me and I was one of the lucky ones to have only mild skin issues.  Chemo brought physical discomfort, but I still dealt with chemo much better than I dealt with rads. 

weesa

I bet you are past the prime time for an exploding chest. Yeah, it was pretty darn gross. At least when one of my cats would get sick with a half eaten critter, you could go to another room. This sucker stayed with me, under my nose.

Hope you can find an anti-depressant to take with the Tamoxifen. Anti-depressants help reduce the hot flashes,  as well as the depression. I always thought there were some that were safe to take with Tamoxifen.

You will do well, BlueCowgirl, you are so exasperated and disgruntled, that you have a fighting spirit as well as a good sense of humor. 

GG27

I too found that rads was a nightmare compared to chemo.  The skin in my armpits urned black & oozed & peeled.  I was prescribed silvadene, which I used religiously.  One of the rads nurses also showed me how to make up saline compresses which when cool really helped take the burning feeling away.   My RO told me I wasn't the worst case she'd ever seen, but I was right up there.

Anyway, my reason for posting was to let you know that as bad as my skin was, I healed well, I did use the cream they recommended for about a year after.  I've had a very successful reconstruction after all that damage.  You will get through this, it's not fun, but hang in there.   Dee

BlueCowgirl

MFrog, Elizabeth, Radiant, Sister Weesa, et al,

Thank you for reminding me there is a light at the end of the tunnel. I am finally a bit less sore than I have been the past few days, though the expansion of the peeling area seems to show no signs of slowing down - now the peeling is basically all over the left quarter of my torso. But less pain and burning, which of course makes no sense, just like the rest of this deal.

MFrog, I'm glad you mentioned the black spots. because I forgot to mention that. Those are the most painful places for me. My RO said they looked "great". Nice. 

Mandalala

Hi! I will get the first one of 33 radiations Monday (Saturday morning now) and I am worried about work. If I am going to be tired and feel poorly for weeks, we'll have to plan. People tell me I should care only about my own health, but I really care about my work anyway. So, is there any way to estimate beforehand when the tiredness will kick in, and is there anything to do about it?

(No chemo, right now no Tamoxifen, no other health problems.) 

banjobanjo

Oh God!  I'm having RT on my spine and brain and feeling quite well, no horrible side effects at all and am half way through my three week daily schedule.  However, when I'm finished with these treatments, they are planning RT on my mastectomy/lymph node area and you lot are terrifying me because it seems that there are many more side effects with that area of the body - or do they tend to radiate the breast area more aggressively than other parts of the body?  Getting really worried now and positive attitude crumbling...

Robyn_S

I finished 25 rads three weeks ago. The first 4 weeks of tx were a piece of cake. However I had a torrid time too from the last week as the underarm area quickly progressed from red, sore and weeping. Over the next two weeks after rads it worsened (my RO did warn me) and spread over the ex breast and underneath which is the most painful. I have TEs in - not filled yet and it feels as if the radiated muscled has shrink wrapped around the TE- just when I thought TEs couldn't be any more uncomfortable!!

But it has closed over quickly and using wet get dressings helped to ease and soft dressings changed regularly to cushion and soak up the ooze from raw areas. Glad that doing that again is now not an option.

Everyone is different and it is impossible to predict rad response. The RO seems quite happy with the outcome so glad it is over- ((((good luck))))