Any April/May 2012 rad girls out there?
Comments
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It's comforting to read I'm not alone with the nausea. I haven't seen nausea mentioned as a SE in any of my literature, but I guess it is. I get a little woozy sometimes, too.
I have my tx in the morning, due to scheduling it while my daughter is in school. I figured it would be easier and I wouldn't have to worry about getting a sitter/someone to watch her. Of course, that backfired this week since she was off for Easter/Passover/Spring vacation
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I would recommend a later time for treatment as it seems I'm left lethargic for the rest of the day; although, I think the fatigue accumulates throughout treatment, so it'll happen sooner or later.
It's been rough the past couple of days. My breast is sore and my nipple hurts like hell. I saw my nurse today to ask what I can do and she gave me some gel packs to use as well as ointment and aloe-treated cotton pads to place over my nipple. It has helped. I couldn't thank her enough.
Ladies, how has the Aquaphor been working out? Have you noticed improvement in your skin? I wish I could use it, but Aquaphor has lanolin in it, which I'm allergic to. I've been thinking about going to a health food store to look for 100% aloe gel. The calendula isn't bad, but it's not doing too much, either.
Be well, everyone!
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Fran ~ I feel a little less "chemo-y" every day that I put between me and my last infusion. Yes, my legs still burn going upstairs, in fact, all my joints hurt A LOT when I wake up in the morning. It takes me a while to work out the kinks. I'm only 42 and I really didn't have kinks before all of this :-\ I'm not sure what you are asking about putting other people's names in caps...do you mean bolding the type? When you are typing your post, look in the left corner of the box. There is a B and an I. If you select the B you will bold your type, the I will put it in italics. You can also use macros to accomplish this pressing the control key (bottom left of your keyboard) "ctrl" and the letter "B" at the same time will bold things, "ctrl" and the letter "I" will italicize, and "ctrl" and "U" will underline. If that's not what you were asking...please feel free to disregard all of the above =]
Michbunny ~ I'm not totally on the Aquaphor bandwagon. I have noticed that a lot of RO's recommend it, but I have also noticed that Aquaphor has very effectively infiltrated the radtiation oncology field. They keep the RO's totally stocked on samples and the RO's give out coupons to their patients. In my experience (I worked for doctors for a number of years) these actions usually go along with offering kickbacks (from small to massive) to these same doctors. Don't get me wrong, I'm not accusing any RO's of foul play, I'm just saying it is easy to convince yourself that a product is the "best on the market for my patients" when you are getting free concert tickets and trips to Hawaii from the same company who distributes said products. I am a bit cynical by nature, so feel free to draw your own conclusions
I am using emu oil and Mia Derm, both of which came highly recommened by women who actually used them and saw great results. I have my stash of Aquaphor samples as well, but I'm using more than one product to cover my bases.
Well ~ I had my first "day off" from rads today. Our machine went down and my RO's office called to say we'd be skipping my tx today. I was surprisingly upset. I guess I didn't realize how much I wanted to stick to my little schedule and be DONE on May 11th. Oh well, "Flexibility" is my new middle name.
SAN
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Hey ladies - just returned from meeting with RO, simulation and set up scheduled for next Thursday which is four weeks post mx.
I already had 8 rounds of chemo from Sept to Feb. Path report from mx showed good response to chemo with no evidence of imflammatory breast cancer remaining, 3mm tumor (shrunk from 2cm), clear margins, 20 nodes removed with 3 positive for cancer.
Plan is for 33 rounds to nodes on collar bone and armpit, breastbone, chest and booster to surgical scar. RO bragged I was getting the full deluxe plan (oh lucky me!)
So glad to have the support and advice of those forging this trail ahead of me. -
RO gave me samples of both Aquaphor and Miaderm. The clinic "recommended" cream, however, is a brand of vitamin E/aloe cream called Colonial Dames. I started out using the recommended cream, and tried both the Aquaphor and Miader. Aquaphor is way too greasy - like Vaseline. I did like the Miaderm, so I ordered a couple of tubes of it. Pricey stuff, but I've read good things about it. So now, I'm alternating Miaderm and Col. Dames. So far, I have only slight pinking, but I have a feeling this is the calm before the storm... Today was #15, so 18 more to go!
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We have a lovely ceiling painting of a guitar, cowboy boot, dog and some books. Actually the dog looks like a pig which kind of makes it funny to look at. We are known for our annual Cowboy Poetry Festival (Santa Clarita, CA), hence the western flair....We also have the 3 hole gowns and they are much easier to change in and out of. Just went through my planning process today. Start on Monday with the rads.
Yes, the modesty went out the door during the mapping process. Having your RO and RT standing over you staring at your breast for about 1/2 an hour in the brightest of ceiling lights can be a bit intimidating!!!
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Hi All ~ So today was interesting...had to go back to the radiology onc to have another CAT scan and get re-marked as the doctor didn't like the original plan. As CrazyGirl said, forget about trying to retain any form of modesty. Three guys in the room along with the doctor moving my boob around, making new marks for intended tattoos, I guess. I have marks all over me now...some of them faded and some new. Taking a shower in the mnoring should be very interesting. Because I am very large breasted ("anchor tits" is my term for them...sorry if that offends anyone) they wanted to make sure the necessary areas get radiated. That would be my hope as well! I can only imagine what a pretty picture I was on that table. Oh my! I am hoping they get me back in for the simulation soon, but as SAN has posted it looks like our machine is down...yikes!
I am also having issues with my autoimmune disease and will probably have to go back on steroids which doesn't make me happy. I have managed to lose 34 pounds and don't want to gain them back. Also can't imagine having another drug to deal with. Sorry to whine, I guess I figure you guys will understand my need for a tiny pity party today. I have to see the rheumatologist, hopefully tomorrow. I don't know about you guys, but this running from doctor to doctor is getting to be old...but I have to say I am grateful they are proactive and that there is treatment for all of us. Hope you are all having a great evening. I will quit complaining now...
Hugs to all of you for being there for me. Linda
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Had RO appointment yesterday, MO apppointment today, then rads planning and CT simulation after that. I tell you, I'm on the fast track! Start my 30 rads in 2 weeks. So I have these 2 weeks to desensitize my underarm and completely get back all my arm range of motion. RO was wonderful, very warm and caring. MO very intellectual but funny. So now I am tattoo'ed and ready to go!
I'm going to try morning appointments first, I imagine I will change to after work apppointments, though, after a short while....wish I could just stay in hotel the whole time!
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I had my 4th Radiation Treatment today and felt extremely exhausted. I came home and crashed!! Never even heard the phone ring! I have had a queasy stomach and did mention it to the techs - they said that if that continues then we will speak to the RO. 12 more to go!!
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mamglam -- wow only 16 treatments? Lucky you! 6 weeks is a long time for me to be driving around for my one minute treatment. I wonder how they decide how many to do?
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MOT --- 16 treatments seems to be the norm for many of us Canadians -- I too am having 16 treatments. I have 13 more to go - started on Tuesday.
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Linda ~ What a bummer that they need to re-plan you
( I hope they figure out a way to avoid steriods for you...I know how much we hate the dreaded "roids." I guess I don't feel quite as exposed as you ladies who are having your real breast radiated. I just have a weird, giant, tissue expander with an MX scar. It doesn't really feel like I'm exposing anything important. I guess I'll put that in the "something to be grateful for" column.
SAN
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SAN ~ It is quite a pose to have to be in, but I know the techs see the same thing everyday. Trust me, I don't think they are looking at "me" but it's just such a vulnerable place to be. Honestly, Dr. Coleman, the techs, and I were all laughing today because it just went from crazy to ridiculous as they moved me around like a hunk of meat. Another one of those "you have to laugh or you might cry" moments. I choose to just laugh cause it makes life a whole lot easier! Hope the machine is fixed tomorrow...not sure if I will even be called back for my "tats" tomorrow. Oh well, another hiccup in life's ridiculous ironies!
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Hi all,
San, you're right about the aquaphor! I felt like the nurse was a salesperson instead. She even told me that "in clinical trials aquaphor beats all other radiation creams"! Geez, infomercial in the cancer center.
I've had two tx. Nothing to mention yet, except they almost forgot to do my supraclavical area yesterday but I was counting the buzzes (5), and didn't move till they remembered. I would have reminded them.
Weird but I wish they wouldn't play any music in tx. They play 60s music which I associate with really good memories and I'm afraid that will be ruined. We have a big photo of Sedona red rocks on the ceiling (I get tx in Sedona) but I don't look at it, since I also don't want to associate any good memories of Sedona (I hike down here A LOT) with rad tx. I just close my eyes during tx and meditate or pray.
I made my tech laugh yesterday though. I caught a glimpse of my right boob (the mischevious one) in one of the plate's reflections the first day. Yesterday I told the techs I didn't know how they could even FIND my right boob to radiate, it was so miniscule (I'm a 36 AA probably smaller now since I've lost weight). She cracked up.
Funny how something so teeny tiny could have given me so many *&#*( problems.
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yesterday was tx 4/30.
We have the little capes with no arm holes at all. But there is also a bathrobe to wear if you like. I like the way out treatment area is set up. You check in with the receptionist, go to the womens changing room which has a bunch of skinny little lockers (don't know what people do with winter coats?) the changing room has several curtained off cubicals next to a small group of lockers so you have some privacy. Theres also a private restroom in the changing room so if you want to wash the goop of of your hands, it's handy. Then when you leave the changing room the tech is usually waiting at the door to walk you back to treatment. You may encounter one other patient in the corridor ... hop on the table and zap. We have only a bunch of ugly fake plants to look at though.
They've been getting me arranged then draping a cloth over me and when you're done one of the techs hustles over and grabs your robe to help you back on with that... So all in all I think they really do try to make it not awful.
Yesterday was the first weekly meeting with the RO. He meets with all of his patients on Thursday, but made a point of letting me know that if anything came up I should tell the techs or the receptinist I wanted to see him, and that his nurse was always available for questions, in person or on the phone. They gave me a bag of information (which wouldn't fit in the locker) a water bottle, and some samples of "special care cream" and "natural care gel" which is what they recomend you use when the redness starts...
Also made me an appointment with a nutricionist for next week.
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12 down
13 to go then all done -
Joanne, thanks for the link re: shorter RAD time.
Claire, just what you needed, an infomercial. That really was uncalled for.
Is anyone else using a calendula-based lotion or ointment? I wonder if it's a new skin cream that's being tested?
13 treatments down, 3 to go!
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Claire ~ On my 2nd tx they forgot to put on my bolis!! I was like, "Ummm, guys..." Actually, nobody has really discussed having a bolis. Do you guys have them? The day I got my tattoos, they also made a parafin wax mold (bolis) of my breast that receives the rads. They put this on me every time because it makes the radiation more effective, right up to the skin. Apparently the radiation beam does not dispurse it's power right when it hits a surface, but rather once it penetrates into the tissue a bit. The mold tricks the beam into thinking it has hit skin before it does and then it dispurses it's power right up to your own skin to kill cancer cells there. Oh, and the "informercial" thing is LAME! That makes me think for sure that they get something in return for having significant numbers of their patients buy the stuff :-\
Cindy ~ I wish we had nice bathrobes! My PS's office has big fuzzy bathrobes and I love it. It kinda makes you feel like you're at a spa
SAN
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My office gives me huge tubes of creams 2 types.. then she added the silvazine cream I also use aloe gel.
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10 down, 25 to go!!!
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Woohoo Beth.. knockin them out!!
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My RO wasn't dressed as nice today. he promised to dress nicer next week. He mixes plaids and prints so nicely.
My RO nurse said the calundra in the miaderm was shown to make biggest deference in the studies.
Has anyone started thinking doing research on ways to prevent reacurance? I'm seeing naturalpath md on monday. I am looking at glucaphage and low dose naltraxon. -
I had my 5th treatment today - 11 more to go! The technicians are really nice and only needed 1 xray before starting the treatment. The queasy feeling in my stomach was better today and the feeling of fatigue is about the same as yesterday.
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Mamglam - I had #4 today and I asked about being tired and the techs comments were that it wouldn't be this soon from the rads -- they asked how I was sleeping and perhaps the stress itself from going for rads -- tiredness does come but usually later on --- so ...... I know I am exhausted each evening now but I do know I am not sleeping great and stressed because the time of day for the treatments is different everyday.
Keep me posted on how you do -- skin is still good - no problems there.
Joanne
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Fran- wonderful news about your BIL. so glad to hear it.
Itsok: you and I had the same chemo. Just wondering how you did with it. I find the A/C part to be horrible. Really suffered bad side effects from it. I would actually do a BMX surgery 10 times before doing chemo!! Just noticed the date you were diagnosed - I was diagnosed one day before you 8/23.
I'm sorry to hear about the distances you ladies have to travel for your radiation treatment. That must be extremely difficult especially since it is every day. As someone mentioned earlier, I will add my easy commute to my list of things to be thankful for. I realize that I am very lucky to live in NY, right outside of NYC so I have many medical facilities available to me. I will also add to my list a SIL who is an oncology nurse and who insisted I get my chemo at her facility (I did have a long commute for that but that was once every 2 weeks so I am not complaining).
As far as the rad macine goes, my best friend is a rad therapist (the therapist is the tech (or techs) who is with you in the room/works the rad machine), so I already had an idea of what the machine looked like but she gave me an in-person sneek peak at the machine that she works on at her job. But I can understand how intimidating it must be to someone who has never seen one before or even had the need to know what radiation was. Radiation is a very precise treatment and I believe measurement is done in millimeters. An ironic note to all this, I took a test years ago to get into a school program to become a radiation therapist. Needless to say, I did not get in - I was an average student in science and math but these subjects were definitely not my strong suit! Well you must be very good in these subjects to get into the radiation field. It is a very good paying job though.
Had tx #10 today! 18 more to go. Three more weekdays off until I return to work next Thursday. I am treating myself on Tuesday to a medical massage and facial!! I was given gift certificates for this during chemo but I was in no shape to go anywhere during that time.
Enjoy your weekend ladies!
Cathy -
I will be starting rads April 23rd. I went in for my fitting for the mold they put under your shoulders and head to keep still yesterday. They also marked me with large black X"S on both arm pits and between boobs. I have trial run next thursday. No lower cut shirts for me this week..lol. I had a lumpectomey on march13 th and looking at 6.5 weeks. I am both nervous and excited to get this started. I look forward to talking with all of you as we go through this!
Kristio
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5/30 done. Had to wait more than a minute or two for the first time today. They brought a gentleman down from the hospital side for treatment and he apparently took longer than expected because he is in such bad shape right now. Trooper (my hearing dog) got to put on his therapy dog collar and visit with the family while we waited. They seemed pleased to have the distraction..
Ready to just relax for a couple of days. Wish I could go water walking, but that's not recommended until we're done with tx.
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Cindyl -- I am going swimming while I do my rads -- was not told not too -- only if he chlorine effects my skin.
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I asked about swiming and was told that any chlorine would be a very bad idea. RO is petty sure we're going to have a tough time skin wise anyway, as I'm fair skinned, bigger, and frequently get hives and other skin stuff. So I'll stay out of the pool and the hot tub (sniff) but he says I should be able to get back in the pool by June, so...
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Just back from #16 - one more and I'll be halfway there! I'm starting to feel some itchiness, so am thankful to have a couple of days off. I have Benedryl on hand if it gets too troublesome. Have a great weekend, everybody!
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I miss the hot tub..
DH drained it a few weeks ago and we will not refill and start it back up until I am cleared to go in it..
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