March 2009 Rads Group?

Rachel, my son is 11 and my daughters are 8 and 4, so the older 2 watch out  for the younger one. Also the other patients and family members kept an eye on them. I have heard the the ACS will assist with rides and babysitting for treatment. My cousin has worked with the ACS in Michigan. I took books and toys( PSP and Ds for the older kids) to them occupied. I was one the first appointments of the day. Also if you get to know the others that are at treatment the same time maybe one would keep an eye out for your child.

I have been very tired, not sure if it is the radiation or getting up an hour earlier and getting the kids around an hour earlier, then driving 20 minutes each way for treatment. I took the kids with me because the road by my daughter's(4yr)daycare was closed, so I came out of my development right by the interstate. I took the older 2 to help watch her. Then we all wnet to school and work. I work at the school where my 2 older children go.

I hope all goes well for you Rachel. Good Luck.

Oh, Martha, and Rachel, and Nelia, I just wanted to add, about the skin breakdown...please don't beat yourselves up for not putting enough lotion, or the wrong kind, or not enough water, etc, etc..  From what I've been told it's not about anything we are doing wrong. It just happens with some women, especially if there are folds, like skin against skin, it almost ALWAYS happens, according to my rad onc. She was surprised I held off as long as I did, 21 treatments. And she did think it would be much worse (ugh!).

I am a person who tans, never had a sunburn in my life.  It just happens with some women.

Hmm I wonder how accurate the doses really are...

Jessee 

Thanks you, everyone, for all your encouragement and understanding.  I spent most of my day yesterday bare chested, as I seem to be ruining all my shirts with all the creams and gook, etc.  I finally figured out a way to get the stuff on me without hurting and rubbing all the skin off --- i took 4x4 bandages and smeared the stuff on them, then laid the bandages on my burns!  I just left them there and went to bed.  For the first time in weeks, I had a good night's sleep.  I know they say NOT to cover the area, but I had to do something.  And being that the stuff was so thick and greasy, the bandages did come off easily this morning.  It all looks a lot better now that ALL the skin is gone.  Very sore and red, but I hated all that dead skin on there.

Samantha, a lot of my teeth rotted and broke apart after chemo.  Just a few weeks ago, another one broke off during dinner.  Guess it is another price we pay for the cure!  I've learned to brush a little more gently as my gums started bleeding, too. 

It's strange, I know, how some of us burn and others don't.  Right from the beginning, everyone seemed to know that this is how I would be.  I had hoped to prove them wrong, but I lived up to their expectations!  I'm just glad it's over now and I can concentrate on making every day a little more "normal" if that is possible!

I really want to thank each and every one of you for your encouragement these past weeks!  And those of you who are following behind us ---- just know that if I can do it, so can you!!!!!!

mfgibby wrote:

Rachel, my son is 11 and my daughters are 8 and 4, so the older 2 watch out  for the younger one. Also the other patients and family members kept an eye on them. I have heard the the ACS will assist with rides and babysitting for treatment. My cousin has worked with the ACS in Michigan. I took books and toys( PSP and Ds for the older kids) to them occupied. I was one the first appointments of the day. Also if you get to know the others that are at treatment the same time maybe one would keep an eye out for your child.

I hadn't thought of the ACS, I should try them!  I just asked my mommy-groups if someone can come for just that 5 minutes, if they live nearby.   

I have been very tired, not sure if it is the radiation or getting up an hour earlier and getting the kids around an hour earlier, then driving 20 minutes each way for treatment. I took the kids with me because the road by my daughter's(4yr)daycare was closed, so I came out of my development right by the interstate. I took the older 2 to help watch her. Then we all wnet to school and work. I work at the school where my 2 older children go.

Funny enough, everything I had to do with before my baby and cancer was cars.  I have had opportunities to drive- the way I love to drive- twice since radiation. (Hint: its a two seater convertible with a worked engine and suspension mods... ok....?)  Both times I thought- I do not feel secure about my energy level and concentration, and chose not to drive.  I feel GREAT today, I have been feeling GREAT a lot... but its like compartmentalized, I didn't know I could do that with my energy, but apparently so.  I am foggy and bumbling sort of like a comedy character, short tempered and short on patience, but if I sleep, I am not tired.  I have energy for my kid and cleaning the house and this board.  I used to read the paper - everything but sports- and clip and send articles.  First- I couldn't find time to clip and send article.  Now I can't even find time to read the paper.  At all. By this I mean to say that I think there's a kind of economy of energy under radiation- and your driving takes a lot of that kind of energy, wrangling the kids and working... no wonder you are tired

I hope all goes well for you Rachel. Good Luck.

 IT WAS AWESOME!!!!!!  It was most awesome in its changing my day from being hours of separation from my son with over an hour committed to radiation to a whole day with my son and 5 minutes committed to radiation!  I haven't been out with my kid since December!  He's a whole different person, it took me 2 days just to re-pack the baby gear bag.   It was fresh in my mind like how i felt the day he was born and handed to me and  I thought OMG WHAT DO I DO WITH THIS PERSON?????  and then... you do... and that's how you become a parent.  And so it continues in life... we dealt with whatever arrived and I had the bestest bestest day of my life.  Funny, I stopped by my therapist's because it was her birthday and it was on the way and I was so happy, and I said something like "nothing could make me happier than I am right now" and then I had to add... of course except not having cancer.  And again just now, I was going to retract saying I had the bestest day of my life... because of cancer.  But you know, it was still a great day, and maybe I don't have cancer, or I am beating the hell out of it now.

 

 

jessee54 wrote:

...My skin didn't start breaking down until tx #21, but boy it's gone to town since then. First it was just underneath, which they expected, but now the skin below my armpit is all brown and dried, and not open blisters, but more sore than the blisters! I also have a small area of fluid filled blisters, which is apparently a rare side effect. The doc kept saying to the nurse, "it was on the consent form, it was on the consent form", which I thought was obnoxious, like all she cared about was not being sued or something.  She changed her mind about the rarity when she realized that is was in an area where there is skin against skin when I lie down.  The good news is, she says it will all heal in a few weeks. But warned me that it will get worse before it gets better, since I'm getting the effects of tx from 5 days ago.. 

I forget what your regimen was, of course I want to think that something I am doing is going to work.  Well that stinkaroos.  I wonder if there's a way to post radiation treatments vs. breakdowns on this site, or if it's already been done?  That sort of thing- the doctors involving themselves with policy or business issues is - all the metaphors I can come up with are too graphic , so I am  going to cop out and say reallly reeeeeeaaaalllyyy bad.  That stuff makes me worry about my treatment and their competence - just as confident honest smiling doctors who accurately predict what will happen make me feel like I am in safe hands and everything's going to be ok. 

 

 

jessee54 wrote:

Oh, Martha, and Rachel, and Nelia, I just wanted to add, about the skin breakdown...please don't beat yourselves up for not putting enough lotion, or the wrong kind, or not enough water, etc, etc..  From what I've been told it's not about anything we are doing wrong.

 Oh I am a control freak.  I have to think that I can do something to alter the outcome.  You should see, I just stocked up on a half dozen tubes of the calendula cream like a frikin addict.

 

It just happens with some women, especially if there are folds, like skin against skin, it almost ALWAYS happens, according to my rad onc. She was surprised I held off as long as I did, 21 treatments. And she did think it would be much worse (ugh!).

That skin on skin thing makes perfect sense to me.  I asked today if they are radiating my arm and they said no (kinda incredulously).  Well there is a uniform conviction around here that the skin under the arms gets itchy and worse.  Granted, some have lymph nodes there and maybe they intentionally get radiated.  But like with a sunburn, our skin must be radiating, and it radiates against skin that is either really fair and rarely sees sun, like under the arm, or radiates against other radiated skin, like under the boob. So I am really happy with these swaths of t shirt cotton I have been wearing.  I always have one under my boob, fairly stuck on with the calendula cream, and under my arms, I am always wearing soft 100% t shirts, so it's skin on skin but with at least one layer of cotton, which is an excellent air barrier. And maybe its not just the skin directly in the path that gets ticked off, its neighboring skin as it approaches the bone like up tot he collar bone.  So even though they are not radiating my arm- so they say- I am continuing to cream up to the elbow, because I feel it there. 

 I am a person who tans, never had a sunburn in my life.  It just happens with some women.

 I used to be like that and about 10 years ago I started getting hives when I got too much sun.  No tan, no burn, go straight to hives.  But the docs keep stressing to me that this is NOT a sun burn.  It may have the same symptoms as a sun burn, but it not the same causes, so treating it is different.  I know exactly how to save sunburned skin (nivea skin OIL).  Mind you, even if it is like sun burn, I sure as heck dont want hives!

 

Hmm I wonder how accurate the doses really are... 

I wonder that, I wonder how they know, I want to see what they are doing sometime, I wonder if they aren't missing and radiating my brain.  I know better but ...

 

 

nelia48 wrote:

Thanks you, everyone, for all your encouragement and understanding.  I spent most of my day yesterday bare chested, as I seem to be ruining all my shirts with all the creams and gook, etc. 

I can't help but get a kick out of hearing you speak like this.  You are such a refined and church-going lady, and of course you are 100% correct in this exposure, but just that you have the ability to see and do what has to be done, its just so cool.  You are one cool chick nelia. 

I finally figured out a way to get the stuff on me without hurting and rubbing all the skin off --- i took 4x4 bandages and smeared the stuff on them, then laid the bandages on my burns!  I just left them there and went to bed.  For the first time in weeks, I had a good night's sleep. 

Brilliant.  That's just brilliant.  We are women, we find a way.

 

I know they say NOT to cover the area, but I had to do something.  And being that the stuff was so thick and greasy, the bandages did come off easily this morning.  It all looks a lot better now that ALL the skin is gone.  Very sore and red, but I hated all that dead skin on there.

Maybe if you use strips of soft  t-shirt cotton instead of bandages (plastic?) then you can  get the benefit of letting the skin breathe and also use your brilliant idea for applying it? 

...

It's strange, I know, how some of us burn and others don't.  Right from the beginning, everyone seemed to know that this is how I would be.  I had hoped to prove them wrong, but I lived up to their expectations!  I'm just glad it's over now and I can concentrate on making every day a little more "normal" if that is possible!

nelia, yours was the hyperthermia treatment.  none of us did that, and they used hot water for hours- that'd make anyone's skin raw and dry even without radiation.  Today they had some trouble finding the right mark on me, the fluorescent one, was too many magic marker lines, so she said she was  going to use some alcohol to wipe off the marker.  I said no!  No alcohol on the skin I am so carefully trying to conserve!  I asked them to try soap and water first, and it came off and they could see.  Augh.  Alcohol.  I thought about you when I stood up and said no. 

I really want to thank each and every one of you for your encouragement these past weeks!  And those of you who are following behind us ---- just know that if I can do it, so can you!!!!!!

I dunno nelia, I dont think I could have done what you did.  Not without some amusing headlines in the paper like... crazed cancer patient throws radiation tech into vat of hot water, and sits on them.

 

 

bluedasher wrote:

Samantha, my rad onc told me I couldn't get my teeth cleaned during rads. I didn't ask why.

 That's interesting, I knew it wasn't supposed to be during chemo but no one has mentioned it during rads.  I'll ask.

Jessee...I'm right there with you but no blisters.  I itch every where. 

Nelia....OMG it hurts just looking at the photos.

Martha....I'm honored in the deepest way.

Got to go I feel so tired.  Rads are catching up with me.

I finished my 33rd treatment yesterday and now I'm done!! Bad news is that today, all of a sudden had a terrible pain on my breast and looked down to see that I have a new half-dollar size spot of raw skin. Didn't even notice it before. Now about 1/5 of my breast is nothing but raw meat. I spent the day in an oxycodone haze...I'm glad the treatments are over but radiation seems to be the gift that keeps on giving.

We have a chance to meet each other.  What do you think?

http://community.breastcancer.org/forum/44/topic/730818?page=9

Flmel!  I wish I had some oxycodone right now.  Dr. wouldn't give me anything exept that spackle cream, silver sulphadiazine, or whatever it's called.  I thought today was going to be a little better, and I tried grocery shopping.  Well, that was a mistake!  bending, lifting, carrying. . . . everything just cracked open again.  I'm beginning to think I need to be restitched where my mastectomy stitches were.  It's all open and sore, and every time I bend, get out of a chair, or do anything, it just cracks open again and again.  The rest of the area is raw, but slowly lightening up in color and not as sore as it was.  Glad to hear everyone is finishing up and I HOPE without a lot of pain!

Nelia, I'm amazed that they haven't given you pain killers. Did the onc give you any reason? When I complained to the nurse about my breast being tender, she suggested that they could prescribe Vicoden. I mentioned that Vicoden doesn't work for me (I've been told that it isn't effective for some people) and she offered something stronger. I didn't feel my little bit of discomfort warranted taking strong pain killers and said I would stick to Aleve or Tylenol. With burns like you have, they should be willing to prescribe some painkiller.

Hi, I'm new to all this. Not even sure WHAT treatment I'm having. I was told definitly radiation, not sure of the chemo. Have no idea what to expect..Not sure if I should take time off work or try to rough it . Any advice?

I have still been tired since my rads ended on April 15. It hurts a little under my arm and it looks like I have a sunburnon my breast. Otherwise nothing major.

I get scared when my non cancer boob hurts, I worry that I have cancer there now. However I had no pain or even a lump to indicate that I had cancer to begin with, so I tell myself to stop over thinking every little pain.

God Bless You All

Have a good week.

Hi Patti...sorry to see that you are on the BC Train as well.  As to your question about working through treatment or not, it is so hard to say since each person's experience is different.  I'm 54 - no kids, live relatively close to the hospital and have two amazing bosses who basically left it entirely up to me if I wanted to come into work or not after each treatment.  I love my bosses!!!  I had 4 rounds of chemo and am finishing up radiation and for the most part continued to work through treatment.  For me, I wanted to continue to work if I could because I happen to love my job and having said that I would have easily taken the entire treatment time off if I needed to do so.  My prayers are with you Patti.

Martha, so good to hear from you, but I'm sorry that your skin in breaking down.  I know exactly ow you are feeling.  That cream is messy, isn't it????  Especially when you have a large area to smear it onto.  It was getting all over my tee shirts.  Then I tried an undershirt, and it felt like sandpaper.  I finally opened up a 4x4 bandage and slapped that on there just so the cream wouldn't get off on all my clothing.  It was either that or go naked! (NOT a pretty sight!)  You might try putting a bandage where the bra rubs.  I know before my surgery, I had a big hole in my boob where the tumor was.  Had to keep that clean and covered for 4 months while I did the chemo.  And it was right where the bra rubbed.  But I used my bra to keep the bandages in place and the bandages acted like a buffer.  Maybe it would help you, too. 

I'm getting really irritable with it all.  I thought it was looking better with the redness looking lighter, but it was only another layer of skin getting ready to peel off.

As for the techs not answering you about the rest of the area getting better first --- mine didn't.  In fact, it got worse during the booster tx's, as it is delayed remember.  But right now, that skin seems to be getting a little better.  Last Wed. was my last booster, so it's almost 2 weeks since the whole area got it.  I've had it!

I also had the burns up around my neck, but not on my back.  The ones on my neck are just about all better now, but looks like they will be leaving a scar.  Looks like someone grabbed me around the neck and tried to choke me!

Hey my friends,

I have to admit, I'm hurting a bit. I mean, it's not unbearable, but after I've been lying down, especially, it kills when I start to get up and the broken down skin moves around.  I then rush to put on some aquafor w/ladocaine, and the silver stuff on the open parts. After a few minutes I'm fine.

Not too much fatigue, as long as I take a short nap at some point during the day.

Bluedasher - I work at home too, as an architectural designer. What type of engineering do you do?

Patti - If you can find a way to work at home if you end up doing chemo, or at least have a flexible schedule, that would be good. I found it really unpredictable how I would feel from one day to the next, especially in the second half of chemo.

Martha - how did you get an open spot on your back?? Is it sort of under the armpit toward the back, where your shoulder blade starts? I thought only the radiated areas were affected. 

As for the recovery time, I was told that the effects we are having today are from the radiation from 5 treatments ago, it does have like a delayed reaction. My rad onc said some women don't get breakdown until after all their treatments are finished!!

Also, mine did happen very suddenly. One day I saw my rad once and she was pleased I was having no trouble as she thought I would, and the next day I had open blisters. Oh well.

The skin on the sides is starting to peel, and the skin underneath does appear to be healing, but slowly. They said once the dead skin peels off it will be better.  

Hugs to you all, Jessee 

Jessee - I'm an electrical engineer.

I've wondered a bit about why some people get sore areas on their backs too. I think it is because for people with positive nodes they are radiating more area under the arm and even some of the back to make sure they get all the node area. We are lucky to be stage one - they just do my breast and catch a little of the front of the underarm area in getting all the breast tissue.

I've also heard that the side effects can get worse for a week or so after radiation, but I'm a bit confused by that because by Friday my breast has been quite swollen and tender and it feels a lot better by Sunday evening having had two days off. Maybe for some things like the skin changes there is a slower reaction and for others it is more immediate.

Do you have much more to go? The spot where I got a pimple or infected follicle hasn't been healing. They said it might not heal until a week or two after they stop radiating it. The radiation is hard on healing. Fortunately, it isn't in the boost area.