MAY 2009 Rads
Comments
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Heading out to #19 today + my Rad Onc appt. Woke up at 6 AM today and put more aloe on, then went back to sleep for an hour. Pretty red under the arm with those white spots...
Genia, Do you eat red meat? If so, maybe a little more for a bit & also up your dark green leafy veggies (kale, etc.)? Health food store clerks could help you pick a decent multvitamin product. Centrum ultra women's would likely work (it has the iron, not all Centrum vits do).
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Genia - my #20 is today. I feel my self going downhill. ack!
Jrgolomb - did you already register for casting for recovery? if so, send a quick email to martha at casting for recovery. she can tell you if you were selected or not. it would be SO FUN if we were there together!!!!!
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Princess....yes I do eat red meat. I'll get some vitamins today while I'm out.
Lisa.....let's hope you don't have any skin breakage!!! We'll keep our fingers crossed.
Gotta run to my get my deep fryin......hugssss
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Good Afternoon Radettes...
Bonnie...Congratulations..on completing your rad threapy. CELEBRATE ....CELEBRATE..CELEBRATE...you deserve to CELEBRATE !!!!
Deb...see I knew that they were zapping you all along...now you are on your way to putting this one behind you. As for the hurting boob...definitely talk to your Rad onco doc...sometimes it can be a muscle strain...but ask to be sure.
It's so good to hear many of you are on the downslope of the RAD month. I had number 19/33 which means only 14 more to go. I am noticing that I am darker on the rad boob than on the other. My tech said to be sure to use lots of sunscreen while being outdoors as I will get darker on the rad side.
IT"S HUMP DAY TOO!!!!! YEAHHHHHH
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Hey Cruise/Crack
I talked to the techs today, told them how bad it was hurting last nite and that I resembled Dolly Parton..in fact it was still swelled today, and red...one of them thought it could be an infection so tomorrow's my rad doc day, so going to bring it up with her..........
Oh and resembling Dolly Parton might not be bad, IF both boobs were the same! LOL
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i just posted this elsewhere, but wanted to ask you too. i just finished tomotherapy radiation #17 today. originally i was planning to have 28 treatments and 7 boosts, but today my radiation oncologist today suggested that i have 7 boosts simultaneous with my last seven days of radiation, rather than separately, to avoid any skin issues. have any of you had radiation and the boosts simultaneously? this means i'll be finished with radiation one week early! but i'm wondering how common it is to have radiation and boosts simultaneously. he says it's not risky, but i remain skeptical as always. thanks--
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PrincessKauai: I just read your post on #18 treatment. You mentioned eating turmeric. Did you know you can get it in capsule form now. I get mine at WalMart in the vitamin isle. Brand is Spring Valley. Capsules are 500mg, take twice a day. You can also find it elsewhere as Cucumin. I have read on the net that it's suppose to help rad patients in not burning as bad. I started taking it a couple of weeks before I started rads. I had #15 today. Just in the last couple of days I'm a little pink. Use aloe vera and by morning pink is gone. Getting a good tan under the arm. Wish I was that tan all over.
Having some tightening in the area where the biopsies were done. Was painful to put hand on bar behind my head today.
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ddlatt: I'm having mine in between my regular treatments. I can't imagine doing them simulaneously.
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i have not heard of anyone doing regular treatments at the same time as boosts. most seem to finish regular then do boosts. some alternate if they are having skin issues and need a "breater" in between.
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thanks, texas and lisalisa. it might be because this is tomotherapy that it's an acceptable practice. it's so different from regular linear accelerators. my patient advocate at UCSF is contacting the U.S. radiation guidelines committee to find out what they think.
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lisalisa-I live about an hour from Skytop and it have heard it is a BEAUTIFUL resort any time of the year and also upscale as far as the Pocono Resorts are concerned. Maybe they'll take you over to Mt Airy Lodge to play the slot machines!!! What a great get-a-way!!
Genia-So glad to hear that you Dr was sensitive about your skin condition and gave you a break.
All-still on break but you may find this interesting. I spoke to a Tech & Nurse today for 1/2 hour and they said I wasn't the first patient to be on a break this long. I had been in ALOT of pain especially at night. Anyone else find it worse at night? Anyway, a number of their patients have requested breaks and/or refused treatment when their skin was breaking down and the Dr does not force them to have treatment. I always felt like I had no say until now.
I had been given 175 for the 1st 10, then 200 for the next 3 all with the Bolus, which the tech says is probably contributing to the problem. Maybe when the Dr returns on Monday & I start up again he won't use it.
Got a FREE chair massage today at the Dr!!! Yeah it was great.
Hugs to all of you ladies & good night.
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Margo - i wish you had signed up for the retreat! it would be great to meet you!
Today was my 20th treatment. I have 8 more and then 5 boosts just to the scar area. Interestingly, I'm just starting to feel pain today. And, its not on my breast, but my chest! They are hitting my chest/neck area pretty hard to get at the nodes. I've always had my worst sunburns on my chest! so, I guess I'm just susceptible there. My breast is pink, but no pain.
I hope I can last 8 more days!
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Hi Ajlive, I didn't realize it was being sold in capsule form. It sounds like you're doing very well with the regimen you're on! I think I'll add tumeric daily. Heard that it needs to be mixed with a little oil, like EVO, to be absorbed well. I'm drinking a cup of miso soup every morning (tsp of miso in hot water) and I have some sea weed, but havn't been eating that. Those are supposed to be helpful with rad exposure too. My doc didn't tell me I had to avoid any foods; I've "heard" others on these boards that they were told to avoid these types of foods.
I'm getting a bit rashy in the pink areas so did ask my Radiation Oncologist for a prescription for Biafine this morning. Will pick it up tomorrow. Love & Light, C
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Lisa-I did miss the deadline date to the casting retreat.
It did look interesting. I wonder about the other dates I noticed in Colorado. I filled out an application. Thanks for the web address. So far the itching, burning and pain from the rads is intermittent.
How many of you have blood tests ordered by rad doc? Just wondered if this is routine.
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No blood tests ordered yet by my radiation oncologist but she mentioned she'd be monitoring me closely after treatment for thyroid and a number of other things. I love her because she's very compassionate.
The biggest pain I've had is one tiny spot on my side where I can feel a hard bump. I think it's part of the tissue expander, or scar tissue. Either way, just 8 more treatments and I can start recovering from all this. June 23rd is my last day.
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Good morning, ladies. Had #21/26 regular tx yesterday - almost finished and on to the boosts, and not a moment too soon. Met with the rad onc, a different doctor as mine is on vacation this week, and she did a very thorough examination and said that since I'm in week 5 and the se's are cumulative, she does not like the pinkness that used to fade each night but is now staying a nice, healthy, pink across the top of the breast, under the arm, and yes, to the back also, Lisa, just noticed this development, and under the breast. She gave me a tube of Aquafor (boy, is that stuff GREASY!! Need a scrub brush to get it off your hands) to use at night, and said to do the aloe 2x a day - morning and immediately after treatment, and the other stuff at night. She too told me I could very well be blistering by the weekend. I thought my skin was tolerating this very well. Maybe I'll escape the blisters - only 5 more regular treatments and on to the boosts.
Deb - I did get some swelling and tenderness immediately following the first few treatments. That went away but has come back this week. I'm pretty tender in the entire breast, but the rib pain on the side is a little better. I take a few Advil when I get home from treatment, and immediately take off my bra too - I try not to wear a bra at night unless I absolutely have to. Same for weekends - just to give the area a little less pressure and rubbing.
Also getting a little more tired each afternoon - by 4pm I'm yawning. That could also be I've been pushing pretty hard at work these last couple of weeks - getting a lot of physical stuff done that I'm out of shape for. That mostly should be over for the immediate future, so maybe that will help?
I'm ready to be finished with these major treatments. What's next for us? I'm thinking another round of PET and CT scans, bloodwork, to check the progress, and then start on hormone therapy, etc? Anyone have any ideas?
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Chelev,
I'm right where you are! Today is day 21 for me. I'm going downhill fast and getting very very red on my chest. I've been using aquafor all along....its some SLIMY stuff. Be careful, because it also STAINS clothing! I have 7 more regular treatments and then on to the boosts. Hope I can get thru the regular treatments without blistering. ugh.
jrgolomb - I'm so sorry that you missed the deadline. darn! there are other dates but you don't get to randomly chose where to go. There is no so cal location, so I have to go to PA. I can't even chose to go to NoCal....crazy huh?
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#20/30 today.
The light at the tunnel is now visable!! I had my last set of double check films today with treatment. Like several of you I have only five more "regular" full treatments and then five "boosts"! Off to the Kindergarten end of year party now. Love & Light to all. This too shall pass, may it pass quickly
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Good morning ladies,
Princess...thanks for the info...
Texas...June 23rd is also my last day of TX...yay...
DDlatt...good luck with your question about reg TX and boost at the same time...it would be nice to finish earlier by doing simultaneously...I guess as long as SEs are not compounded...
Margo...sorry to hear about your pains...mine comes and goes but I don't think they're any different night or day...
Zap 25 for me today...saw the rad onco yesterday for the weekly meetings...he prescribed silvadene cream although I thought the hydrocortisone was working...I hate to think that he's prepping me for when the burn gets worse?
Getting ready for the boosts...did the CAT scan on Tuesday...rad onco drew a circle around the scar before scan...also additional pictures were taken by rad tech yesterday...
Just three more regular TX then five boosts...I'm desperately waiting to see that glimmer of light at the end of the tunnel...I'm so ready to get off this rad train...although it's not as bad as the chemo train...
Take care ladies...
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i received a response from my contact at tomotherapy incorporated about boosts simultaneously with regular treatment:
"This will be a boost simultaneously with the main treatment, instead of having the main treatment then 7 more days of radiation to a smaller boost area. This is commonly done with Tomo and the ability to do it is a special capability of the system. With other technologies, Deborah would get the same dose overall to each region (main area and boost area), but this is a more efficient approach that can reduce skin redenning, as Dr Rost indicates."
Here's a link to a recently published paper on the approach (this is a "technical note", so keep in mind it discusses it more pragmatic/procedural-based, than clinical): http://www.ncbi.nlm.nih.gov/pubmed/19044322?ordinalpos=49&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
And here's an interview we have on our site with Dr. Jim Welsh, in which he speaks about Tomo for breast cancer and boosts using Tomo: http://www.tomotherapy.com/video/tags/tag/james+welsh+mdDr. Welsh and Dr. Rost were two of the first docs in the world to use Tomo to treat patients. They both a lot of experience with this new technology, so have a head start over many who have more recently adopted Tomo. That's probably why you're not finding a lot of info out there. Hope the background helps.<<
dr. rost is my doc who recommended i get these boosts with the regular radiation in order to avoid skin issues. so i feel comfortable with the procedure now and am so glad i get to finish a week early!! i'll be finished june 25th.
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Good Afternoon Radettes....
Had 20/33 today and noticed a form of "diaper rash" under the boob where my underwire hits...the nurse said it is normal and women with BC who get rads will experience this...so I am not ammune to any SEs this go round.... Damn it....I put some Calendula cream on it and it really helps...made for diaper rashes and scars...putting it on the port scar too...
Chelev...let me know if Aquafor helps....and hope you are blister free girl....
lisalisa...wow..you fish too? What a great way to meet others who are going through this...hope you get in...
Ohio Deb aka Dolly....are you doing okay?
Best to all...Radettes....we're all racing for the finish line....YEAH....
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Cruise -
I have that "rash" under my breast too. I use aloe gel and then aquafor. It's been working fine for me. My only real issue is my chest. Today, my rads tech said the skin is thinner there (superclavical) and its not uncommon to have issues there.
oh....i don't fish. but, i want to try it! i'm IN. i was chosen by casting for recovery. i will learn to fish the last weekend in august!!!
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Hi LisaLisa-Maybe I'll see you next year!! Sounds like alot of FUN!!!
Jess-I get CBC bloodwork every weeks to measure white counts. They have been good so they are going to every other week 'cause I a "hard stick".
Yes I am healing FINALLY!!!
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Hello My Fellow Radiators! I am only on number 10 first double digit. Tomorrow I will be 1/3 way thru. I was supposed to see the doctor yesterday for my weekly check up. They put me in a room then I (over) heard at the desk that I would be seeing the P.A. and that she would be down in 1/2 hour. Well the hell with that. I just went and told them that I was fine had no questions and that I would see THE DOCTOR the following week. Don't get me wrong I have a great deal of respect for P.A. but the only questions that I had were for the doctor about a second opinion on hormone therapy so why wait in a room for a 1/2 hour.
I have been very fatigued during the day and I am up at night. I have to turn this boat around to get on a healthier schedule. I think to much at night. All the things that have changed and still need changing in my life. I can shut out these thoughts during the day but at night they yell at me.
I hope everyone is well and healing and growing hair.
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lt's good to hear that so many are nearing the finish line. My last day will be July 10. Today I just felt very drained and ended up taking a long nap this afternoon. My energy improved after dinner. I sure hope that I'll be able to go to sleep tonight. The only problem with the long naps is the impact it sometimes has on my regular bed time. But, with this radiation sometimes I nap and then can still go to sleep at night. I think the exercise is helping. But, I cann't say that I'm immune to the fatigue caused by the radiation.
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Hey deb we crossed on submission. Its weird we have the same thing going too.
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I'm DRAINED!!! I feel like someone stuck a tube in me and sucked out all the life. I did this last week too. By Friday I felt like I had run a marathon......Sat was feeling a little better....by Sunday even better. Then right back to feeling bad again on Monday. I did find something that makes my burns feel SOOOO good. I place a cold wet washcloth on there and just sit with no shirt on......feels heavenly!!! No ice tho....that can damage the skin........but for those of you who are burning.....you should try it.
I have 11 more tx's.........5 boosts and 6 regular ones. I thought I only had 5 reg left....but they told me I had 6.
Bold....I experienced the same thing with sleeping after I was finished with my chemo. I would sit up all night long and go to bed about 4 or 5 when I was so tired I couldn't hold my head up anymore. I think it's pretty common from talking to some more sisters on here. You might ask the Dr. for something to help you sleep. I still take two ativan at night. My mind doesn't wanna shut down either.....but I'm doin better now.
Hugs Deb......
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Thanks for the solidarity Genia. I am not myself these days. I feel so over being bald, fat, ugly and diseased. I do not want to identify with these negative thoughts. I usually can supersede them with hope, appreciation and positive imagery. I know that it will pass and I will become my motivated self again. I guess I have to learn that some times we just get down and its OK. The lesson is to be more patient with others too. I always talk my daughter out of her negative thoughts, maybe she needs to feel them once in a while. If this feeling last for more than a week I will take more drastic measures. Sorry to be Debbie downer. I am grateful for this site. I keep these thoughts to myself. Here is my safe heaven to vent the scary stuff. Do you think that this could be related to the hormone crash, toxic injections, and going to Chernobyl everyday? OH NO! Even my sense of humor is sick. It's 12:41 AM. I should try to sleep my Rad appt. is in 12 hours. I will meditate tonight and count my blessings as apposed to SE"s. I will walk first thing in the morning if I have the strength and get ready for a wonderful weekend. Thanks to all of you for the indulgence.
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Hi,
LisaLisa, you are going to have so much fun at Skytop, my husbands family used to take VCa's there it's a classic resort. You deserve it!
Today is #20 and I am trying not to think about my breast. It feels a little heavier, but it could be my imagination. I slather cream on right after treatment when I'm getting dressed, and later in the day and then again at night. I hope it helps... I was experiencing nipple soreness and started putting a little cotton pad against my nipple and bra so there was no rubbing. My breast is a little bit smaller after the lumpectomy and my bra doesn't fit as well on that side. So far the cotton pads have worked.
Chelev I really hope they are wrong. Get rest to help your body heal. Some days I think this is so stupid!
I started on hormone therapy already, I wanted to wait and made my case to my ONC. He really wanted me to start in May but said it was my decision. Unfortunately he said this in front of my good friend who always took me to chemo. She bugged me and bugged me so I just started when he had suggested ( I think he knew she would be on his side and had a lot of influence with me!) I haven't noticed any side effect from the Tamoxifen so I think it's good so far.
I just want to be done, I want my life back. I want to not be creaming myself and hydrating myself and making sure I get rest. It will come soon I'm just having a day when I'm sick of it. Okay that's for letting me vent. Have a great weekend fellow Rad girls. Two days of freedom!
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No PET/CT scans for me. Doc said it doesn't make any difference. Not too reassuring but he said just to live my life unless I start having symptoms of recurrence. Oh boy.
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