SEPTEMBER 2009 RADS
Comments
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ok everyone so I saw my onc. today--and i forgot to ask him all the questions i needed to --I usually make a list but I didnt even think about what i I wanted to ask him so never made the list--just went in said I was somewhat tired not as bad as chemo--he looked at my labs-- my wbc's are still down but he isnt worried--I am but he isnt--some joint aches --he is not worried--but I am -- and that was it-- My Vit D. level is down--forgot to ask if I should take vit. d now or wait until after rads--wanted to ask him but forgot--also does he suggest a flu shot and when --forgot about that too-- and for sure he didnt remember to tell me-- shouldnt he have looked at my old labs and see my vit. d. and shouldnt he have told me what to do about the flu shot-- I am mad at myself and wonder if it is just chemo and rad brain and cancer that I just cant function or is it he is not being on top of things as I would expect-- he will see me in a month-- I guess i could call him with these questions but should have handled it today --was in and out in 5 minutes-- i am frustrated-- sorry for venting but upset my wbc's are still low and why do I have to constantly be the one asking the questions--very frustrated right now-- well enough of me-- gotta go to rads so hope everyone is doing ok and has a good weekend off-- Laura
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Laura - I feel that they rush you to maintain their schedule. It is very frustrating to remember your questions afterwards - I agree. My onc's office has a nurse you can call with questions. Maybe you could do that.
Some answers from my experience - my doctor insisted I take vitamin D3 throughout treatment - 2000 mgs/day.
My natural doctor suggested whey protein as a natural way to help my wbc go up. It did help me avoid having to have that neulasta shot, so maybe it worked! It comes in a powder and you mix a scoop into a shake, or I mix it with applesauce. It's not bad. That might help you.Good luck. I feel the frustration in your email . I hope you get the answers you need. If there is ONE thing we should push for, it is peace of mind!
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Laura - Please dont wait a month; I agree with Amy, you're piece of mind is important, esp right now.
Another option if you're hesitant to call, why not email ? This way you can take your time drafting your questions and he can answer them when it's not a rushed time for him. He may even call you to respond, just be sure to add your number to the email so he doesn't have to look it up. If you dont have his email, you can call his office, explan that you forgot to ask some questions and get his email address.
I've emailed my rad onc, surgeon and med onc and it seems to work quite well.
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I am back on track. After two days of canceled treatment, I started back yesterday. When I went in today, everything was very efficient and I was in and out in no time. I too am experiencing the burning in my stomach. I have had stomach issues for years and will not eat anything spicy and especially not anything with onions or peppers. My poor dh does not understand how anyone can eat food without onions. He just loves it when his mom cooks for him (i love it too).
My onc told me when I started the chemo tx that there was no such thing as chemo brain. LOL I am just going to let him be delusional. He is an older gentleman who has seen many cancer patients. He knows how to treat the cancer and that is important but I think after they have seen so many they become immune to the individual problems. I am the kind who could tell my husband word for word a conversation we had months before but now I can't remember if I told him something 5 minutes ago. Oh well, he is better off.
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AmylsStrong and MTG--thanks for your response--and listening to my venting-- I will probably call him on monday to ask the questions--he does usually respond when I call but just wish I asked before or he thought to telll me--
are all of you getting a flu shot(not the swine flu just the regular one) I never get them for various reasons and that was one of the questions I had for the Dr. if he feels iit is important for me to get it--I would rather not but I will if he says to--have your docs mentioned it to you --
is anyone out there on or going to be on arimidex--i am supposed to start aftter rads--
I am putting cold compresses(not frozen or iced just colc) and seems to help but I am really starting to get uncomfortable--finished # 19 today--
hope everyone has a good 2 days off!!!this is the first weekend I really am looking forward to no rads--need to rest the skin--stay strong--Laura
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Laura..go ahead and start taking Caltrate and Vit D3...very important..I found out..talking to rad onc and rad nurse that if I I just TOLD them what I was taking...they never said a word..the onc. did tell me to take calcium but they hadn't tested me for Vit D3 (next time) so I just started taking it anyway...can't hurt..
Sly..obviously your onc never reads the internet...doesn't it say over 50% of people get it??? Anyway, it's a good excuse when you screw up or forget to do something..not sure how long we can get away with it though! My DH can't remember things much either and he has no excuse..he says I talk too soft..WHAT! I'm a big mouth and have always been!
Betsy..I have a blister on my breast..the rad techs told me not to scratch it..well duh..like I'm going to walk around in public scratching my breast.. I know NOT to do that! It doesn't itch anyway..just there and I wanted to know what it was...part of the "freaking out' process!
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Today finished up #22; only 3 more reg & then 10 boosts to go. Woo-hoo!!! I feel very lucky that only yesterday I started to have some skin issues--especially under my breast (I have large breasts, so maybe that's why). (The dry, purple nipple from the last couple of weeks they said they're not concerned about since the skin is dry.) I've been using Jeans Cream 3 x/day from the beginning & immediately started using the Biafine that was prescribed & hydrocortisone cream for the itching. By tonight the entire underside of my breast is covered with red, itchy bumps. I'm having to sit on my hands to keep from scratching. Yesterday was the first "sunburn" look that I was told to prepare for--& then it's only slightly pink. Guess I'm extremely lucky to have just these relatively minor SE's after so many TX. Still take a nap almost everyday so don't feel the fatigue. Guess I would feel fatigue if I didn't have my naps.
As if dealing with the rads wasn't bad enough, I had to go to the orthopedist today because of a bad knee pain from the last 3 weeks. Took x-rays & he said that it was badly arthritic with quite a few bone spurs. He gave me a pamphlet on total knee replacement, which I told him was way-y-y down the pike. Guess I just didn't realize how bad the knees were since I've not been extremely mobile since my 5th back surgery 10 years ago. I've used a walker ever since & use a scooter when I want to shop, etc. He gave me a cortisone shot, so that should really help out. I also was seeing him about the trigger fingers that just won't seem to fully respond to cortisone. Since all of my fingers started this a year ago, he's done several rounds of cortisone on the worst ones. The end of July he "shot" 7 of them. Today he said, "Are you ready to just do something permanent?" It's a relatively minor outpatient surgery, but he will only do one hand at a time. He only makes a little slit at the base of each finger & releases the tendon. We scheduled it for Mon., 10/19 after I finish rads on the 14th. Not especially looking forward to having surgery again but will be glad not to have to keep on dealing with the locking fingers, pain & no grip whatsoever.
I'll be a new--almost 59-yr-old--woman when the rads & tendon surgery is over. I've already told my DH that I want to take at least a little trip somewhere to celebrate.
My body may have decided to do some weird things to me the last several years, but at least my mind is perfectly fine--except for those cute little brain farts.
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Laura - I got the flu shot a week and a half ago. I work in a school so I get one every year. I have never had a side effect from the shot and I've never gotten the flu. My rad onc. suggested I get it because immunities are so low from rads. I take two Tylenol one hour before the shot and then two more four hours later. My regular doctor told me to do that and I've done it for years. I'm not sure about the swine vaccine--haven't heard too much about it or the side effects from that. We're being offerred it mid-October so I still have a little time to investigate.
Treatment #27 Friday and now I have only one more regular treatment Monday and then 5 boosts. Woo-hoo! I'm pumped. Elimar ~ how are your boosts going?
My skin under my arm is red/purple and itches like crazy. Rad onc. prescirbed Lidex and it's helping. Sometimes in the middle of the night I feel like a dog with fleas. Just want to scratch the hell out of it. The rest of my chest/breast area is a nice glowing red and is very SENSITIVE. I forget sometimes and reach with my right arm and I could just howl. I'd love to just scream once in a while but I don't think anyone would GET IT! Sorry for ranting so much but writing all this helps keep me sane.
Hope you all have a peaceful, restful weekend. Stay strong!
Chris
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caphan, you're ahead of me. My boosts will start next Thurs., and I have 7 of them, so I'm going to be paying attention while you get your 5 boosts.
Based on the "When life gives you lemons...," my new saying is "WHEN LIFE GIVES YOU RADS, EAT RADISHES." Don't know if it will keep the side effects away, but they might want to finish up with you a few days early. ;-)
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Hi all,
One boost down, six to go for me. Today the target area is very sore... with the occasional latent bee sting.tatoo feeling. I've also noticed that my rt. arm has lost considerable flexibility. I use to be able to reach up with no pain...not anymore. I'm going back to my daily arm exercises until I wrap this up. BTW..my rads boob is now larger than my normal boob. I lost about a cup and half size prior to the rads...so everything feels super tight. OMG...I can just imagine the shrinkage when this starts healing.
Titan..sorry to hear about your blister. I'm beet red..with a few of those nasty itchy bumps...but that's all. I just keep slapping the aquaphor on..and use the lanolin at night on my nipple.
Laura - my onc said get the flu shot especially since my wbc was low going into rads. It sounds like you are still low. He also said to go for the swine flu shot if and when it becomes available. I will probably do both but I'm waiting until after rads. I don't want any more assaults to my body right now.
Chris - looks like we might end the same day, I can hardly wait!!!!
elimar - I can clearly see where the rads treatment have hit my body (due to color) and it certainly looks like my digestive track was in the line of fire. At this stage I guess all we can do is hope and pray that when this is all over everything goes back to normal.
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Betsy..thanks for the kind words about my blister but it doesn't even hurt..it is just there..not even on my boob..and since I freak about everything I had to know what it was1 Actually I seem to be breaking out in freckles...or I guess if I had sun there they would be sun spots...or age spots since I will be the BIG 50 tomorrow! Yay me...I never thought I would be happy to be 50 but I am...I certainly don't feel, hope I don't look it and I certainly don't act it.
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Happy Freakin' 50th Birthday Titan!
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Titan....Happy Birthday!!
Lollys...My onc told me I should get the flu shot. I haven't yet and never have gotten one before, but since my WBC are still low, I probably should do it soon. He was iffy about getting the swine flu shot when it is available because they don't know all of the side effects from it yet.
I have 4 regular rads left and (maybe) 5 boosts. I am getting some lymphedema in my arm where the lymph nodes were removed because of the radiation. I am meeting with a therapist on Thursday morning.
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Freaking thank you Betsy and Christy!! I tried to sleep in this am but people kept calling me..mh dh told me when you are old you don't sleep in anymore!
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Happy Birthday Titan--
well the reflux is now set in--lovely maybe it is what I ate yesterday hopethat is all it is cause I havent had it for several months--next!!
ccbaby sorry to hear you are getting some lymphedema --I had 30 nodes removed so am very worried about it also--did meet with a specidalist and she suggested the compression sleeve and will meet with me after rads-- trying to do stretches but dont know if it can be prevented-- keep me posted as I am at risk also-there is a lymphedema thread and also a lymphedema site to help you find a certified specialist in your area--lots of info on that site--I will try to find the link for you--have a good Sunday everyonw
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I had a very busy and very fun weekend. It kind of worn me down but it is a good tired. Grandkids make it all worth itl My dh has been very patient and is so helpful. I try to remember to appreciate all he does. No sores or sunburns yet which I am happy about. Iam having some problems with joint pain anad hope that is temporary. As long as I stay going, it isn't quite so bad.. Not as hungry all the time now. Just tired. I have a really busy week ahead. I like it when i get things done. I need to take the vitamins I bought. Just ready to go to bed and get a good nights sleep; We are going on a field trip tomorrow.
Happy Birthday Titan. We now know how important those are. I am hoping everyone has a really great week/
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Sly..I too have been having some joint pain...in my legs....I have been walking for 6 months..not sure where this is coming from...could it be the radiation..and why...or could it just be from the taxol? My right foot is sometimes a little numb.
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Titan ~ Happy Belated BIrthday Wishes. . . and many, many more!
Just finished Tx #28; tomorrow I start the boosts. I'm a little nervous because so far I haven't blistered and I'm wondering if that heavy duty zapping is going to cause blistering. Under my arm has really been bothering me, very itchy. The cream helps but in the middle of the night it gets me awake.
Stay strong!
Chris
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Chris - I also didn't blister just some redness under my arm. It's getting a little itchy. The Dr. said the boosts are only aimed at the scar (I had my first last Friday) and they shouldn't burn you. It's supposedly a different kind of radiation. We'll see. I have all this week of boosts, then done. Glad you're almost there, tool.
Happy Birthday, Titan!!!
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I finished my 25 regular rads this morning. Tomorrow is simulation for the boosts and then I get 8 of them. The tech assured me that they target the area where the tumor was, which may or may not be where the scar is located.
I have a little redness, more on my chest and underarm than on the breast itself. No real problems. Am excited to plow through this week and next week and BE DONE! They have a bell at the radiation area that you ring when you are finished. I can't wait to RING THAT BELL!
Also my daughter took me out for a really fancy dinner in Philly last night for my birthday. I dressed up for the first time in AGES - sundress, high heels, big earrings, makeup and NO SCARF OR HAT. It felt a little scary walking into that restaurant but I held my head high. We had a wonderful time.
I feel like I am taking my life back, bit by bit!Amy
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Report back about your boosts, people. Better or worse than the regular zaps? Let me know.
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I have my last regular rads tomorrow and then 5 boosts. I haven't had any problems so far. Some exhaustion but that could be from not sleeping well. I am a little worried about the boost since my scar is right next to my nipple. It seems like that is the only thing that is a little irritated so hopefully it won't get worse. Still wearing my regular bra and using a non stick pad. Glad I am almost done.
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Titan and AmyisStrong - Happy Birthday to both of you !!! It's nice to focus on positive things in the midst of all of this. Enjoy !
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Amy..HAPPY BIRTHDAY! Didn't know it was your b-day or I would have commented sooner! Sounds like you had a good one...Planning on going topless on Nov. 7th. I only bought one wig..been wearing it since mid-May and I think it is getting a little ratty...I know I'm tired of wearing the freaking thing.
Peg..hope things go well with your boosts..as elimar said we need to know..I start my boosts next Monday..I have 7...Haven't had any problems yet..still wear my bra daily...maybe just a little pink..the rad onc. said it would be firmer, smaller and tan...nothing like that yet...
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Hi, I'm between Sept and Oct, I had my markings and simulation the week of Sept 14th. Started Rads on Sept 21st. After first week of rads breast and nipple were really sore. Anyone had SE's like this so early?
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AMY...HAPPY BIRTHDAY!!!
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Amy - Happy Belated Birthday! I am so glad you enjoyed your night out and yes, little by little, we are starting to claim our lives back, isn't it wonderful!
Re: Boosts, as some of you know I was freaking out about them prior to the start. They focus on the tumor bed or cavity..not the scar. The scar can be in the way, as mine is, and close to the nipple. They've my nipple could be sore with the boosts but my experience so far is the boost seem easier than the reg rads on my body. Each day out from my last reg rad I've felt better and I'm sleeping thru the night again, hooray!! The swelling is starting to go down..TG. I've only had two so far with a weekend break between them, so it might be to early to speak, but so far, so good!
Rozzy - my experience is by Friday of each week I was sore, swollen and red. By Monday, I felt better but I didn't notice any discomfort until half way through the process. I did use a lot of aquaphor and maybe that helped. Good luck.
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Happy Birthday Amy --
Well 20 down and I am really red --have been using Biafine--Calendula, Sweene cream, cortaid--no lesions but very very red-- looks awful--will try aquaphor next-- still have 8 more regular to go then 5 boosts--glad to hear your boosts are going ok Betsy you are almost done!!
Hope everyone has a good rest of the week!!
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Lolly - you may want to try a combination of the creams you've been using with the Aquaphor (as opposed to switching to the Aquaphor) since, if you look at the labels it seems that Calendula, et al deal with the burn/redness/ itch while Aquaphor moisturizers. Although I'm only at red #9. I found that the lotions I'm using (Calendula, Aloe and Miaderm) dry out rather quickly and thus lose their effectives so I'll 1st apply one of the creams, let it soak in for a very few minutes and then apply the Aquaphor over it. This creates a dense albeit sticky barrier that lasts and lasts. I figure I'm getting the best of both worlds... but time will tell.
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Well ladies - this is weird. I had my simulation for the boosts this morning. I have blue sharpie drawn all over my breast. They said to try to not let it wash off - no lotions or scrubbing in the shower, just let the water run over it without 'washing' it. If it fades, they will touch up. That's all fine but - no lotion? That seems really strange to me and worrisome to go into the boost series without being able to put my calendula (which has been working great) on. It is only 8 boosts, but still....anybody else been told this?
Thanks for the birthday wishes. It has been a nice weekend. I have been going out bareheaded and getting a bit more used to it.I am starting Tamox right after rads, so ending rads is really the beginning of the next thing. Not sure how much I will be celebrating, as I have some trepidation re the Tamox.
Amy
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