Radiation recovery
Comments
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Kate, you are going to weight about 900 pounds with all of us in your pockets! LOL and we will be carrying around cake balls baked by Janis who deserves a medal for offering cake balls to all of us since I am betting we can all pack some of those babies away big time!(not sure what they are but if they involve cake and lemon cake or choc cake, I am all in!) Praying that all turns out well for you!
Bunkie, we are also coming along for the ride in your pockets(with cake!). Huge hugs to you! Your biopsy will soon be a distant memory and hoping for benign results!
Deyla, so sorry about your skin breakdown and the fact that you are sick. Your first day of chemo falls on my birthday (April 8th) so I will be with you in your pocket on your first day!
Macatamv, I am so happy to hear that you know of others who did the shorter protocol. It is standard to do a shorter trmt protocol in Canada (16 sessions) and UK (same) and now MMSK is also using the Canadian protocol. Mine is 10 sessions of highly concentrated rads..a little nervous but thrilled to do this!
Joan, where in CT where you headed? Sorry it was cancelled but maybe a much needed rest for you when all is said and done.
RMlulu, I am so jealous of your Rancho Mirage weather (the name Rancho Mirage sounds so lovely and warm to begin with) and I hope you enjoy the day!
I am being "seeded" with gold seeds on Thursday (step one for my rads protocol) and my mapping is April 1st (no April fools joke, this radiation stuff, eh?) and then I am likely to have my week long tx the week of the 15th or the 22nd, depending on how far backed up the dosimetry dept is. I just want to DO IT!
Have a great evening ladies!
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Adagio, the good news is that no one can predict who's going to end up with skin breakdown. It apparently doesn't seem to matter if you burn easily or are fair as this radiation is different than the sun's rays. That said, you still need to apply creams or you'll end up with a leather breast.....just kidding but you do need it. Hope you've got some by now.
April....woohoo on the 5 day 10 treatment protocol. Remember to eat lots and lots of protein and drink lots of water those days. This sounds just perfect for you. Oh, someone (you?) mentioned the other day that they'd heard that boosts were harder than the regular rads. I didn't find that to be true at all. The machine acted differently and seemed to concentrate on a different area but I don't remember it affecting me as far as SE's any differently.....in case that helps.
Deyla.....((hugs)). A cold on top of everything just isn't fair. Have you tried the calendula cream? Is it helping? I do hope you're feeling better.
Kate....((hugs)).
Janis, good to see you back here so often. I, personally, am holding out for the cheese cake, or lemon anything, or....chocolate torte? Except I don't think you make one of those. But if you did, I bet Bunkie likes chocolate. Or, April will like some for her 5 days...
Bunkie...here's to a B9 nodule. Janis is right, though, if you have to have the surgery it really isn't too bad. I had a pre-cancerous goiter 35 years ago which was removed. It was caused by head and neck radiation I received as a 3 year old of all things, but that type of cancer is really really slow growing and doesn't metastasize. No, my BC wasn't related to the thyroid growth but there's a chance it was caused by that long ago radiation (60 plus years).
Have a good evening everyone. I'm resting on my laurels as we went on a fairly long hike in Point Reyes Natnl park today. A wildflower hike.....great fun0 -
Hi Janis,
There was paperwork confustion about scheduling my lung biopsy. My doctor had to send a new order. I think the hospital is going to call me tomorrow to set up the appointment. Lemon cake balls YUM. Sounds fantastic for my after party. Thanks so much hugs, Kate
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Hi Deyla,
Sorry about you upper respiration infection. Good that you are having one week off to get a rest So sorry you have to go through all this. Barbara Walters has a great saying "this too shall pass" Count me as another bc sister to be in your pocket for your procedures. Hugs, Kate
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Adagio- I got through 34 with 4 more to go after this break. It starting getting bad the very last week. I was using aquaphor and aveeno but looking back now I wish I was more excessive with the lotion. Good luck to you! Deyla
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Thank you Kate! I appreciate all prayers! Deyla
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RMLulu my ex lives in Rancho Mirage. Thanks so much for your support.
April I feel like I weigh 800 lbs already. Then I will stuff myself with Janis' yummy lemon cake balls, and I surely will weigh 900 lbs. There are a number of symptoms associated with lung and bladder tumors, and thank God I don't feel any of them. One of the symptoms for both tumors is weight loss. OMG I have the opposite. The stress is causing me to eat like a pig. It is the first time in my life I don't mind gaining weight, because I am so glad I don't have the loss of appetite symptom.
So did your mom name you April because you were born in April? I hope I remember your birthday on April 8, but with all that I have going on I might forget. Please remind us again right before your birthday. I am glad that you won't start rads till after you enjoy your birthday. Hugs, Kate
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Thanks Sew! Glad to hear the boosts are no worse than regular. I was told to expect some mild skin irritation (or worse) by day 4 due to the intensity of the rads. But, lots of creams will be given to me to counter act it!
Goodnite everyone. Heading to bed.
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Sew - I have got cream now - I am using Lubriderm and I also have Aveeno and I bought Calendula just in case of redness and blistering. That's encouraging to hear that skin type doesn't necessarily predict how we will react to the rads. Perhaps I will be fine - I can hope!!
Deyla- too bad that your skin broke down so close to the end. However 34 treatments is a lot for sure. I am getting 16 plus 4 boosts! And I think that is plenty. Hope you are feeling better soon. I see you are going to have further chemo - will the new chemo regime be easier than the AC and Taxol? My prayers are with you for healing of your skin.
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Just want to let all my bc sisters know that I had a nice day today, totally away from participating in medical procedures or thinking much about them. I went to my hairdresser again today. I wash my own hair and blow dry it, and then for $20 including a tip she flat irons it. She is fabulous, and it makes me feel so good. I can't do nearly as well as she does with a flat iron. I have wavy hair, but I want to wear my hair straight. Besides going out to happy hours with my breast reconstruction surgeon I also go to happy hours with my hairdresser. I am older than they are. They are both in their 40's, and having younger friends keeps me feeling young.
Thank to family, friends, and bc sisters support ( bc sisters are also friends) I am feeling stronger emotionally. I have always been so resilient. Waiting for biopsy's I must admit I was weak, during the waiting period. I was strong emotionally for my lumpectomies, and even stronger for rads. Well, when I first heard that I have lung nodules, and a bladder mass I fell apart again. Thanks to all of you, and the pocket parties, and lemon cake balls, and many very sweet private messages I am finding my emotional strength again. Mind you I am not saying that I won't fall apart again if I get negative news, or if my doctor's office does dumb stuff, or if the biopsy's are upsetting, but right now I feel stronger. Mind you also that this is a roller coaster emotionally, so far. On a day away from medical procedures I feel great, and then when there are medical procedures I get scared all over again. Please bear with me. Its similar to pms lol. I can't begin to tell you how much my bc sisters support means to me. Its at night that I feel the weakest. Then I come home to your pocket parties and words of support, and it makes me feel so good. When I do have the biopsy's I will keep your love in my pocket, and I will get through this. As Barbara Walters says "this to will pass. I honestly can't thank you all enough xoxo, Kate
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I forgot to mention one other thing. If I appear self-centered please forgive me. It has been because I am frightened. I am very well aware that if you think about someone else you will feel better. Please pinch me, and let me know if its too much about me, because I don't want it to be. I am very well aware that all of my bc sisters have issues, and I want to be as supportive as you all have been to me
xoxo,
Kate
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Kate, at this time, I totally understand why you are frightened! You deserve for it to be "all about you" and you have been graciously acknowledging all posts that are directed to you. You are not coming off as selfish one single bit. Just someone who needs a little extra support (and lemon cake balls) right now!
Cool that you hang out with your Plastic Surgeon! There are worse people you can befriend. A discount if you ever want a tummy tuck perhaps? LOL..just trying to make you smile dear one.
Keeping you in my prayers. On Monday, I will have my CT scan and simulation for my rads and I will be a little freaked out myself. It is all so disconcerting. But, I know you are all with me and that makes it easier! HUGE hugs.
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Hi April,
A discount on a facelift would be marvelous lol.
I will be in your pocket Monday for your ct scan and rads simulation. Rads simulation sounded so frightening to me when I had to get one. After it was over I was relieved and didn't think it was bad. I so much understand your fears. Just wanted to let you know that at first I was frightened and then I was ok with rads. I will pray that you don't feel discomfort. Hugs, Kate
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Kate, you are not self centered at all! I think anyone in your situation would be reacting the same way. I know I would! I don't post very often, but I wanted you to know I've been checking in to see how you're doing. You're in my thoughts and prayers!
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Hi April,
The idea of the CT and simulation is definitely scary, however the one I had turned out not to be bad at all! These people keep walking in and out checking things, then they disappear and you hear a click or two and then they're back. I got my 4, or was it 5 tatoos at this session. they were a piece of cake and now I can only find 2 of them, and that's if I really look for them! The wierdest thing of all was it was the first time I was sort of parading around topless with bunches of people in and out. I've no clue if yours will be the same, but would think it would be. Good luck...we'll be with you.
Kate, glad you had a good day out and about without all these unanswered questions hanging over your head. Hopefully you'll get your schedule soon...
Adagio, glad you've got the creams to use. It's nice to have different ones to try, at least it kept me amused trying different ones!
Deyla, hope the upper respiratory infection is better and that your skin is playing nice with this break...
Have a good evening everyone
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April, you will be okay at the appt on Monday. I had 3 tatts done and it went fairly quickly. I am done with 8 of my 16 treatments, I am doing the 16 instead of 33, double dosing. My boob is now bright pink with some red, underarm is tan, incision scar is swollen under arm. My biggest issue is the nipple!!! I thought the radiated breast was to shrink? Mine is HUGE! I keep telling the left side to not give me any crap or its next! It is soooo tender. I am using Aloe Vera and it is soothing, thought I might put it in the fridge but havent yet. Last night my DH could feel the heat coming off my breast.
I am finding rads emotional. More from the new friends I have met, we all come early to spend time togethor. I will be so happy to be done but forever worry about them. All in much worse shape than myself. When one of them asked me if I was sick I said No.. he said then what the hell are you doing here in that gown?
He now calls me Honey, every morning when I come around the corner and see the little clan I cant help but feel safe and smile.Good luck to those just beginning, thank you all for your great advice.
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Lemon, I'm sorry to hear about the heat and red skin. Keep up with the aloe, it does feel good, I agree. You might want to look at getting Calendula cream, it's a homeopathic burn cream and really helped me. I got the Boiron brand from Amazon. Apparently it's used quite frequently for diaper rash too! I gave some to my sister to use on those burns you get when the dermatologist burns off skin things. Worked like a charm! Congrats to you for being half way thru.....I'm also glad you've found friends at the rads sessions. I found that helpful too
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Lemon - I didn't know that the breast could swell that much during radiation. And you are only half way through!!! Ouch!! It's a good thing we don't know what's ahead of us, isn't it?
I have only had 3 treatments out of 20 - so I have a long way to go. I would agree with April about trying the calendula cream - I have used it in the past for various skin things and it does work very well. I think I should get Aloe and have it on hand as well.
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Hi Lemon68 - oh my 8/16 with double dosing ugh:( my boob hurts just reading about it...watch out leftie better behave. I lube my breast like crazy...just slather on miaderm & aloe all over incisions and nipple ...underarm to neck ...terrified of skin breaking down. I receive 1.8 Grays each time 8/28+5boosts not sure what Grays boosts will be.
Sounds like a sweet rads group...don't you love how they all want to take care of us:). I have a competition with a gentleman who can get ready faster in&out and dress...running to parking lot. Our rads center is sooo nice but pretty empty at 11am. Very thankful for the great treatment. But I wake up each morning and cautiously peer at my boob wondering if this will be the day the skin betrays me too:(( so far just tan...but a lady at BC group said hers turned black like her leather purse...I think they all could see the terror on my face lol!
Yeah, you are halfway home:)
Sending cooling healing thoughts your way (((hugs)))
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Thanks everyone. I am still nervous. Tomorrow they will be "seeding" my breast with "fiducials" aka gold seeds. The kind of rads I am having needs these I guess. I have the sim and CT scan with tatooing on Monday.
With 10 tx's over 5 days at high gays, I am not going to say that I am not nervous about burning like a marshmallow on a stick over a campfire. But, they tell me that I will be fine. They said they will "load me up" with all kinds of creams/lotions on Monday so I can begin treating the skin prior to starting. Likely start date is either April 15th or 22nd. It will be here soon!
Happy Easter everyone. Anyone heard from Kate?
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Hi everyone,I've been off the thread for a few days so I'm trying to catch up.We had 12.5 inches of snow on Sunday.It's mostly melted already though.Kate glad to hear your hanging in there.
BUNKIE I'll be thinking of you next week.
April congrats on the shortened Rads.
My nipple is becoming inverted due to Rads .I asked to see the Doctor today because it's getting a little white film in the crevices of my nipple .The skin seems to be a little raw too.The nurse of course had to intercede first though and told me to use a nipple shield and coat it with this cream.I never got to see the Doc .Kind of made me mad I didn't ask to see the darned nurse.0 -
Adagio- thanks for the support. I'm not sure how I will react to this new chemo but it got pushed to April 8th as I have an upper resp infection and was started on antibiotics. I am on break from radiation until Tuesday when they will evaluate my skin again to see how I'm healing. Just keep slathering on the creams ladies! Deyla
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OMG another terrorizing day. I talked to the woman who schedules lung biopsy's this morning. She said it would require an overnight stay at the hospital. I said why and she said because of your emphysema? I said what emphysema? Online it says that a ct scan guided needle lung biopsy takes 4 hours at a hospital, and they are wanting me to stay overnight. I have been emailing my doctor back and forth and he said that my lungs have changes after years of smoking and those changes are emphysema. I have an email into him that asks why we never discussed it. I asked him how can I have it when I haven't experienced one symptom of it and take no medication for it. Now the lung biopsy is in limbo again. He wants this done at UCLA hospital, and I so much dislike them, but he is telling me St Johns can't do it. Now that this Dr. wants me to stay overnight for a procedure that takes 4 hours I do not trust him. OMG I feel so overwhelmed.
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(((Kate))) Hang on, I'm on this roller coaster with you...so happy you had a good day and got your hair done...but so sorry about this unexpected plan for an overnight stay. Yes, it is kind of strange that you were not informed of this finding. Have you been to a pulmonary specialist? All this waiting must be unbearable. I hope it isn't postponed too long. I know it is difficult to be sent to a large hospital in which you are uncomfortable...especially if it's overnight. I don't know if I'd mind staying overnight, but I don't like being in unfamiliar surroundings either.
I don't know what else to say...I guess you can either get another opinion or just go with it.
For now, sending hugs & prayers....
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Hi Janis, thanks for the personal "hi" above....I, like you, have not been here every day and keeping up is sometimes a challenge. You are starting to sound like your young self again...doing the things you like to do...
Josie, that foot of snow must have been quite a springtime surprise. Glad to hear it is melting away...I know the changes you are going through are uncomfortable and unnerving...most of the symptoms I had went away within 2-4 weeks. I still have some of the "tan" effect but the irradiated skin on the nipple just peeled away one day...leaving it shades lighter. It is still that way...the peeling freaked me out but except for a raw spot in the crease under the breast, and some itchy spots on top, side effects were minor. I'm a year out and things are pretty "normal" considering...0 -
April, I was just reading about the gold seeding and it appear to be for precise location of the site during scanning. When more focused radiation is given, such as boosts, it's important to be accurate. Good luck with your appointment. I took a xanax on the way to my setup appointment, another half when I arrived, and when I saw the machine I took another. I am claustrophic; however, the machine turned out to be completely open - just a circular noisy scanner that appeared like an amusement park ride. It took awhile, but was not bad at all. Of course, I was a bit loopy...
April, my trip to Ct got rescheduled for today...DD and grandkids live in Westport near Compo Beach. I visited 3rd grade today and came home exhausted!I did not find the boosts to cause any further skin damage or discomfort. As soon as I was done, the healing began. I was quite swollen and it went down pretty quickly. I did not shrink overall; however, once the swelling went down, I could feel the post-surgery lumpiness and changes from rads. It is still tender a year later, but does not bother me. It's just that constant reminder of BC...
Lemon, I found rads to be extremely emotional. My appointments were at all different times ...At my BC center MSKCC satellite, we had a very private women's dressing and waiting room. I loved the privacy...and we had nice thick spa-type robes. But every day I met women - many young - who were going through so much...my heart would break. I would usually get their first names and I would put them on a list in my phone so I could say prayers for them...they were going through very great challenges. The whole experience was overwhelming emotionally. I managed to get my fears and claustrophobia under control which has helped me in many areas of life. I am glad it's all behind me now.
Sew, how wonderful that you hiked at Pt. Reyes. I was there last spring and loved it. There is a fault line right through there and you can see how the earth moved during the last big quake. The scenery is wild and beautiful.
I am going back to SF in 2 months.0 -
whew a lot going on here.It's nice the thread is active but I am sorry we all have to be here,if you know what I mean.
I found when my skin was so hot I could use a babies teething ring that had been put in the freezer.It felt so good and I could move it around to get all the spots.Those are good because they are gel and don't freeze completely.We're not to use frozen tx on raded skin.I ended up getting an over the shoulder gel thing that I used during pt. It treated the shoulder and came down far enough to cover the breast and wrap around my underarm.Pure heaven.
Kate,hope you are hanging in there.I was dx as having COPD,but it turned out that I don't really have it.My lungs were really compromised and the docs kept talking about a biopsy but I never did have one.It's confusing when you find something like that out unexpectedly.
on a different note,I had a tooth taken out today.It's kinda funny to be thinking about a different part of my body for a change.I'll have to wait on the cake balls.0 -
mac - what a great idea to use the cold gel products. wish I had known that. I hope you are feeling OK after dental surgery.
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Ahh ladies, where do I begin? So much support from all of you! You have no idea what that means to me. Where else would I know about calendula cream and cake balls? Honestly, I would be much more terrified without the information you all patiently provide for us "newbies" and for those presently going through rads. THANK YOU! xoxo
Whomever asked me if my Mom named me April cause I was born in April, (birthday is April 8th) I have to confess that my name is not April (although I do love that name and my best friend's DD's name is April and I also had a cat named April when I was a kid) My real name is Joyce! I used the moniker because I thought it unwise to use my real name here since it is a public forum and I did not want any discrimination (workplace or otherwise) based on my diagnosis (or at the time I joined, possible diagnosis) So, there you have it. My name is Joyce! Nice to meet all of you!
Kate, sweetie, I find it hard to believe that they can diagnose you with emphysema when you have no symptoms? What the hell? That is strange and I would want to know all of the information on that for sure. Praying that you can find the strength to deal with the overnight stay. I imagine a lung biopsy is not without some risk of bleeding or other complications, so that is likely why they want to keep you for one night. Hugs and know we are there with you in spirit. You will get through this just like you have been since your diagnosis! Huge hugs!!
Joan, I was told the gold seeds (an inert metal) help guide the rads to the exact spot they need to be so I am ok with that part. The CT scan, tattooing and simulation is a bit scary and will make this breast cancer stuff very real for the first time and I think that is why I am nervous about it. The surgeries (lumpectomy and re-excision) while a little disconcerting were a cake walk in comparison to this rads stuff for me, at least emotionally.
I can only imagine how attached you get to the people you meet that are going through rads at the same time. I know it will drive home the point of how lucky I really am as there are likely to be men and women who are much worse off than I am and I know I will be sad when I see this. I am already affected by the "Angels" threads here on BCO. I get sick whenever I see "So and so has gotten her wings" Breast cancer should have been wiped off the face of the earth already! I can't believe they are not farther along in a cure for all cancers! As far as they have come, I am still so very sad they have not found a cure.
My mother in law is stage 4 colon cancer. She is very ill and not likely to live too much longer. I am so sad for her. She has been through hell and back in the last two years. She is 80 and she took excellent care of herself. She walked 4 miles every day, went to the gym, does not drink or smoke (anymore as she quit both over 20 years ago) and keeps her weight on the low end of healthy. Yet, here she is. I have not told her about me. I don't want to add to her burden. She is such a doll and I adore her!
This morning I will get the gold seeds put in my breast. I will go to work right after the appt so hoping I have no reaction! I have a lot to get done before the long weekend so I could not take the whole day off. Oh well, we shall see!
Ladies, sorry not to give individual shout outs this morning. Suffice to know that I am with you all throughout whatever challenges you face. You are all amazing! Thank you for being here, for me and for everyone! xoxoxo
KATE! For you! xoxoxoxoxoxoxoxoxoxoxoxo
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Kate - Wanted to tell you I have had a lot of kung stuff done in LA. First had a broncopcopy and I had a lung biopsy at UCLA back in 03. Mine was an open lung biopsy and I had to stay 4 days from complications. They have a really good pulmonary team there. That is how they found my Sarcoidosis and I had no symptoms either. They found my problem when I was about to have surgery for sinus problems. I will look at my past medical stuff and see if I still have the name of my pulmo. If not it will be ok. Really. A needle biopsy is not as bad. You need a pulmonary doctor.
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