MAY 2009 Rads
Comments
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Good job Deb....its a start. I plan on walking once the rain stops. It will be next Thursday...so a delay in my getting energy back. It has been 9 days since my last chemo and I am still so very tired. I want to get better before the Rads start...as they will make us more tired.
BUT WE CAN DO IT!!!!!!!!!
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Good morning ladies,
Only it's not really good for me. I'm very weak. It was a bad night. Let's just say the body wanted to rest but, my intestines had other ideas. But, hey, one way to look at it is perhaps my body is purging the chemo and this time we don't have to get poisoned again.
Best to all of you
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Hiya May RADs... I posted this on our March RADS group for CHER, and one of the gals there said I should post it for April and May RADS, I hope it helps you:
FWIW- here's what I wish I knew before I started:You're going to need some bras and some shirts you can sacrifice, either to creams and potions or to ink markings. If they are underwire bras, you'll probably want to pull the wire out- unless you can go bra less. At the end of treatment you will want dark shirts that wont mind ink stains.The areas that are most likely to hurt from burns and blisters are any place you have skin- on- skin (and remember those places are different when you lie down to sleep than when you stand up) like underarm and under boob and between boobs, and any place that rubs, and any place that gets missed when you are slathering on creams.I *think* we are basically agreed that you want to use pure aloe and calendula cream. (Yes, refrigerating them is yummy) If and when it gets bad you'll want these petroleum antibiotic bandages and covers, and finally you will want the silver sulfadine cream- which is limited in how you can use it. Some gals found the silver sulfadine cream easier to use by putting the cream on a bandage first, then applying the bandage with the cream already spread on it. Be aware that your skin will probably come off with the silver sulfadine. Advil is the pain med of choice, stopping inflamation and possibly easier on yoru stomach.Get a surgical pen for them to mark you up with instead of the sharpies they generally use. Sharpies are not FDA approved for use on the skin, of course surgical pens are.In my case, i was able to get fluorescent tattoos instead of little black specks. Fluorescent means they dont show in nornal light.Cut a soft t shirt into LARGE swaths to cover your skin when you have the creams on, and if you collect boob sweat, use swaths instead of any kind of powder, or even corn starch.If and when they get to boosts and want an outline drawn on your body for their beam, see if they can use smaller marks, just to minimize the ink mess for you.I found vests useful. (nelia found tight men's t shirts to be useful for same thing, keeping the bandages in place)The fatigue is weird, and all the symptoms are weird in that they are not exactly consistent- at least for me. I'd be great one day, crap the next, great again, and now at the end its really crappy burns for 5 days so far. I'm also the only person anyone knows who had a BIG reaction the FIRST day- that went away the second day. ::shrug:::At my center I can bring my own music during treatments, nice people both patients and techs.I also wear my fancy velvet gloves to hold the handle bar during treatments, partially because I dont like the idea of grabbing a bar that may have other peoples cooties on them, and partically because its kinda funny and fun It doesn't hurt or anything during the treatments, but its really weird especially if you think about what they are doing.As much as it can burn and blister and all that - and some people it just DOESN'T, they have no problem like this- it seems that once it starts to clear up it happens really fast (or seems to) .Me, personally, I am waiting and hoping for that last part.
And I will post the contest link for ya on March RADs Lisa, hope you win!!
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RacheIBC...thank you so much for the repost...it is very helpful.
Deb...my intestines are churning as well...and you are right we are DONE with CHEMO....our bodies are trying to recover...take it easy... -
Thanks RachelIBC
You go Lisa! Hope you are winning!
Cruise that is me with my own hair. (sniff) It was down to my waist. Now I would take anything. I have made a little folder of all the transitional hair cuts that I will rock for about 6 years to come.I am being silly but hey it gives me hope.
I am feeling better every day. Tomorrow I go in for my Herceptin infusion. It is the first time without the dreaded toxic foam (chemo). I am sooooo grateful! I heard on the HER2 thread that Herceptin slows hair growth. God I hope that that is not true. Going to see a the play Wait until Dark in Palos Verdes today. A friend is in it. So I better get in the shower and pick out something cute to wear.
Hope everyones having fun this weekend surrounded with love.
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Thanks RachelBC -- great info. Do they use markers every time? I thought the tattoos were all they used? My rad onc told me I have "perfect breasts" for radiation - not too big, not too many skin on skin spots --- did find out that the fact that I have darker skin and tan easily doesn't make any difference. Am thinking I'll be glad this is going on before it gets to warm here,,,,,,
I am on Day 18 after my last chemo. Energy / fatigue cycles -- never know when I am suddenly going to feel exhausted, but it sure comes on fast. I nap for about an hour and am good to go for a while. Weather is slowly warming up here near Lake Superior. Been out working in my gardens -- sure is good for the soul. Am going to take it easy on the amount of planters I plant -- not knowing what my energy will be like with three plus hours of driving per day. Have a driver for every Wednesday - that will break up the week. I start on Thursday
I get my port out tomorrow --- then I suppose I'll have some activity restrictions for a while so it can heal properly. Sure will be good to get that out!
I came up witha crazy idea to count down my rad treatments. I ordered two sets of Indian glass bangles (38 in all). I am going to start by wearing the number of bracelets to match the number of rad txs.. Each day I finish a tx, I am going to take one off and send to someone who has been esp helpful/supportive of me through this journey with a note of thanks... Not sure I can jangle all day long -- we'll see how that part goes.
Have a great day May Rads.....
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Hi everyone.....I start my radiation tommorrow. I'm very nervous......but I have to do it. I finished my chemo in Jan.....had a single mastectomy in March.....now on to rads!!! I am scheduled for 25 rounds and 10 boosts. By the time my chemo was started in Sept....my tumor was over 11 cms and the cancer had spread to 5 of my lymph nodes. All my other scans were clear.
Just wanted to pop in a say hi to you all....and I will be back.....probably moaning and complaining....lol
hugssss and I hope for the best for all of you
Genia
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Welcome Genia...and good luck tomorrow...please share your experience for us who have yet to get on with Rads...
kt57...good luck with your port removal...I am going to have mine removed and want to know what experience you had...please share...and I love the bead idea...so thoughtful and reminding you of how quickly the sessions will go by...
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Hi all! I had my rad planning appointment last week, and am waiting to hear when I start rads. So good to see that I'm among such an upbeat group!
I'll have 33 rads, including several boosts interspersed in between. Funny being all marked up with Sharpee lines. I declined permanent tattoos.
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May I join ??? My mom had her planning appt last Friday and has her 2nd appt this Wednesday (for tatoos) and then they will tell us the start date.
I will come here for guidance and help from you all - if I don't get to post everyday -is that okay ???
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Welcome Texas and np312...
np312...You can join in the conversations anytime...we hope to help!
Texas...the tattoos are nothing...just little dots that look like moles...good thing they aren't real tattoos like...the ones you see on the Stars arms and backs...oooeeew
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Yes, I've heard the tattoos are tiny but I still didn't want anything additional that's a permanent reminder. I figure that the whole reason for going through reconstruction is to try to resume some semblance of normalcy -- plus I plan to have a prophylactic on the other side later this year which pretty much negates some of the reasons for the tattoos.
BTW, I'm a California girl myself. I grew up not too far from Lisalisa -- in Torrance. I took piano lessons as a kid in Manhattan Beach. Small world!
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had the radiation mapping/simulation today for tomotherapy radiation. it took less than half an hour. was given three extremely tiny black tattoos (teeny tiny dots). ran me through the machine twice, and that was it. i start radiation may 15 and will have 35 treatments, finishing up the first week of july. so happy to finally be at this stage of treatment!
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Hey everyone.....I made it through my first round today. Piece of cake....except my neck got stiff where I had to keep my head turned to the side as far as I could get it. Didn't feel anything at all......
Just wanted to fill you all in.....I'm hoping I won't get too red during all of these treatments.
hugssss
Genia
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Genia, congratulations on making it through the first one!!!
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Hello, everyone! Here's a Florida girl joining you - hi, Cindy! Had my last chemo on April 23 (stopped early due to complications & weird side effects), and am going for my rads simulation on Wed. (5/6). I am having my port out on Friday and anticipate starting rads within 2 weeks after that. From what I was initially told, I'll be having 5 weeks of daily treatment. Luckily, they schedule around working people, so I'll be able to leave work at 3:30 every day and drive to our radiation oncology branch (getting the simulation at the main cancer center) - that is on the way home, which is really great - I can pop in, get it done and go straight home.
Genia, glad to hear that your first treatment was easy - that's defintely something I am looking forward to after the hell I went through with chemo.
Talk to you all soon!
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Hi everyone!
Genia - congrats on making it thru the 1st one!
Chelev - welcome!
Texas - small world! where in Texas are you? do you still have family in Cal?
I can't keep up with everyone! My daughter has a friend over and I keep being called away from the computer to help with dress up, watch their fashion shows, etc. LOL! I feel like I'm on vacation between chemo and rads. Such a NICE break!
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I'm in Houston. Have some family in Orange County, but none remaining in the South Bay area.
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Thanks everyone.......I was nervous Nellie let me tell you!!! And the machine looks like something from Star Trek.....lol. And it makes this buzzing sound when it's radiating you. I think the hardest part was I had lay perfectly STILL.....they told me not to move at all or their markings and calculations would be off. Very hard to do....I think I had several spots itching at the same time....lol
Good luck to the rest of ya......we will do fine!
hugsssss
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Hi Facecrafter- welcome. Sounds like you had a long chemo treatment. What is a BiMX?
Hi ajive; good luck!
To all: I had CT and simulation last Friday. I have a "dry run" with films only this Thursday, and start the radiation 5/11.My expanders are filled with 850 cc's.I look like Dolly Parton! Would love to hear from anyone about how skin did after radiation with chest wall expanders. Would also appreciate hearing from anyone who has had the amofostine injections I will have two times a week to prevent fibrosis.
Good health to all May radiation ladies!
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Hi May Rads: My WBC was to low to get my port out today
. Re-scheduled for May 22. Fortunately, it won't postpone rads - starting on Thursday. Is it July yet? -
Hi All, Well, May is here now. I have my simulation on Wednesday and will start treatment on 5/11. It's been a long time coming. I'm having a lot of hot flashes today and my FSH and estradiol levels are now "post menopausal" per labs from last week.
Went back to work today (32 hrs/wk) and am a little tired tonight so I picked up take-out for family instead of cooking. It's nice to be back at work AND I have a lot of work to take back on from others. I'm actually grateful for my good job in this economy. My sister-in-law worked all the way through Rads, so I'm hoping to be good with this combo
DH and son are at swimming lesson now so will take a minute now to soak in the tub and relax. Best to all, Cath
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Hi nurlaw. It may have been along chemo Tx, but it worked and contained the tumors, and they got them with clean margins during surgery, so I'm not complaining. a BiMX is a bilateral mastectomy.
Looking like Dolly Parton may not be so bad! LOL,,, I'm looking a bit flat. Although my surgeon infalted me to 240cc during surgery, that's where he had to stop until rads are done. They didn't want the boobs to interfere with the field. So I'm on hold at 240cc until the end of rads. Then we'll ask him to fill r up! JUDY
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Hi chelev...glad you could make it over here....this is a great group of gals here too!
texas... Here is what my tats look like> . .
Genia..congrats on making it through your first session....thanks for sharing your experience.
nurlaw...not sure what a Dolly experience is like...anyone have fried egg boobs?
kt57...hang in there we will get our ports out if we have to do it ourselves.....eeekkkk...good luck on Thursday.
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RachelBC: Just had the sense to go all way to top and saw your great message.Thanks for all the tips.
Facecrafter: Funny you should mention not doing inflation for fear of interfering with beams. The radiation tech told me Friday I might have to have expanders deflated if interfere with beams! Obviously my PS (whom I love) wasn't thinking of that. He is so worried about preventing the radiation from fibrosing the skin so much that I can't have implants.
Genia: Thanks for the info.
Facecrafter: So glad to hear your margins were clear. Mine were too but they were very short at skin. That is one reason I'm having radiation.
I'm dealing with lots of hot flashes too. They had been "cured" by taking Neurontin 3 times a day.Then had to start Arimidex 3 weeks after chemo (3/10) and they came roaring back.Had so many terrible side effects from Arimidex( extremely severe episodes of sudden depression triggered by simple comments by someone that would result in sobbing crying jags that would last for 24 to 36 hours) , my med onc switched me to Tamoxifen. But I have to go off of it when start radiation. So the hormone roller coaster goes on.Anyone else have similar reaction to aromatase inhibitors?.I may be the only post menopausal one on this thread?I now am taking Neurontin 4 times a day. Helping.
I'm also going to be enrolled in a biphosphonate study. I was randomized last week and will be given Zometa IV once a month.The other two possible drugs were oral biphosphonates that are new. A little worried about possible side effects, but early data on these drugs suggest that they not only prevent osteoporosis but prevent recurrence of breast cancer. My med onc suggested the study to me. Anybody else going to do this study? It is brand new.
Bold: I know your pain over hair loss, although mine was not as long as yours. Your plan to give you hope sounds wonderful.My hair started growing back last week. Almost exactly 3 months after day hair fell out. Strangely though, my eyebrows and eyelashes started falling out last week! Have virtually no eyebrows left and about 4 lashes over each eye. Thank goodness for eyeliner and eyebrow pencil.
chelev: Cute picture. Glad you're done w/chemo and getting port out.
PrincessKauai59: Brave of you to go back to work during rads. Good luck.Same to chelev.
So glad to hear from all of you. We will all get through our radiation and will get on with our lives.But while I'm going through it I'm glad you are all here. Dee
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nurlaw - i'm also going to take zometa via IV. but, i was told once every 6 months. you're doing every month!?!?
i'm having 3 fillings re-done tomorrow. i was told to get all dental work done before starting zometa, so i had my teeth cleaned last week and that's when we decided to update my fillings. as well, i have an old root canal/crown that i may have re-done. my dentist is sending me to an endodontist to take a look. ugh.
Lisa
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Hi all,
I'm post menopausal but, being triple negative I'm not a canidate for the anti hormon pills. The chemo caused some return of night sweats. Even though a triple negative diagnosis is pretty scary I'm kinda glad I don't have to go through some the the side effects you guys are describing. I guess there's a bright side to everything. I'm counting down the days. Six days until sims.
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Morning Ladies...
Ivorymom...good luck with your consultation...Ask many questions...
lisalisa...I am hearing many ladies having issues with their teeth...mine are so bad before chemo...hopefully I will have no issues when I go in for my cleaning.
nurlaw and deb...the hot flashes returned for me too...it is the chemo SEs...hopefully when we get burned on the rads...we stay COOL...YIKES....
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I'm not looking forward to AIs. I am super sensitive to most any prescription drug, and I'm almost always the one to develop the 'rare' side effects. Since I've also got osteopenia, my oncologist wants me to take Fosamax (which has its own side effects) to counteract the side effects of the AI. Sounds like a scary merry-go-round to me.
My radiation oncologist wants me to wait on the AIs until she's finished with me. So I have a few months reprieve.
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Cruise.....the hot flashes are from the chemo shutting down the hormones. I had them SO badly.....I thought my husband was gonna leave me because I froze him to death. I would sleep with a fan on in the middle of Dec....lol
It does get better after the chemo is finished. Now I have the tamoxifen to look forward to....which will prob start them right back up again. The fun never ends on this rollercoaster ride called CANCER!!!
I noticed some stiffness last night on the side that was radiated yesterday. It was in the skin.....but it could have just been my imagination too. Seems our imagination can make us think really BAD things.....lol. Every headache I have....is a brain tumor. Every bone ache I have is mets to the bones. Cancer has changed my life and I know I will never ever be the person I was before July 24th 2008!!!
hugs and hope you all have a wonderful day
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