Spring 2014 Rads
Comments
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mikesgirl, good to see you here, too! I guess we would both rather be somewhere else though:). Don't sweat the melt-downs; they are part of the healing process. I think since I have completed my chemo, I am pretty much over them. But for those of you who went directly to rads from surgery, it's probably harder. Then again, those emotions can sneak up when we least expect it!
Have a good week-end ladies. We've got this!!!
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Hey gals. Good to hear about everyone's progress and to compare notes. Well, I had trouble sleeping last night because of leg pain. Took Tylenol an then waited for it to kick I before returning to bed. Seems when I don't take the D3 I get like pain or cramping sort of. Just made the association yesterday when I realized I had forgotten to take it., I have been on anastrozole the whole time since I was diagnosed o help shrink the tumor before surgery. Dr decided to just keep me on it during rads since I was already taking it. MY hot flashes had pretty much subsided from my natural menopause (I'm 60), but now are back in full tilt. Wake up at night with night sweats. I take mine at 6:30 at night because it was making me tired during the day. When my tx are over I will start taking estroven again which helps curb the flashes and sweats.
Next week will be week three for me and I hope my skin will continue to hold out. I haven't needed much moisturizer this weekend and haven't been using aquafore as much as I do when getting treatments. Kinda nice to not be greasy and free boobing it this weekend My under boob area is quite red but no peeling yet. Had tons of energy this morning so got a lot done around the house. Feels good to catch up, so I can cruise through next week when my energy level will be down. Atleast I know I will be feeling back to normal when the tx are over. Looking forward to getting this behind me as I am sure you are all feeling. Hang in there, we are fighters, and we can see the light at the end of the tunnel. Have a great weekend, BC sistas!
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Hi All,
This is the first time I've posted on this thread. I started rads April 1 and have completed 4 of 33
Keepingthefaith...we are on the exact same rad schedule
MaryFox, I'm a day behind you. Are you getting 33 treatments too?
Pam, I hope you are done with all the snowstorms now and don't have to spend more money on hotels. Reading about what you have had to deal with makes me VERY grateful to be able to be getting my rads close to home.
I don't expect much of a problem with SE's until toward the end of rads and for the two weeks afterward. That's the part that has me concerned. There is a really good explanation by a doctor on another thread here about what happens to the skin during rads. It's not really a "burn". Instead, it's just that the new skin cells don't get produced rapidly enough. So as the old ones slough off, there just simply aren't enough new cells to replace them. There's nothing that can prevent this from occurring according to the doctor. All the lotions just alleviate symptoms until the body is able to create enough new skin cells. That's why some RO's don't recommend using lotions until the symptoms occur. After I read that, I kind of relaxed about dealing with this part of treatment. I figure I might as well enjoy the symptom-free period.
Hubby had wanted to take a trip the day after rads ended, but I've decided I would rather wait at least two weeks afterward in order to be over the immediate aftermath of rads.
Wishing everyone a good weekend!
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Lojo: It was day 6 or 7 post rads that my skin made a miraculous recovery. You are almost there. I am still shedding skin like a snake, so am wearing a cami. I could wear a soft bra, but it is the weekend, so will wait until Monday to give it a try. For the others, Lojo and I had rads to our chest as we both had a mx without reconstruction. It is predicted that we will have (and had!) worse skin reactions, so do not despair. Now that it is over, I realize that it went quickly and you soon forget about the 6 days of pain. But I was pretty miserable during those 6 days. Lojo, your description of your experience was almost identical to mine.
Redhead: Your description of your hot flash in a store made me laugh and I think it could be written into a sitcom. How the heck does your dr know what a hot flash is even like? Don't you love it when a male dr starts to talk to you about hot flashes?! They mean well, but really? How would they like us to describe the pain from being kicked in the testicles??
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Simple: yes, it is 33 for me, too. No problems yet, but I'm not looking forward to the last couple of weeks or to the immediate post rad week.
Had a nurse practitioner tell me yesterday that I don't need rads. Um, I think I'll stick with my onc's opinion on this one.
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Mary-- shaking my head-- ITA, stick with the onc.
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I have my first tx today. Not sure if I am nervous or not....
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faery, good luck with your first TX! You'll do fine. I am going in for #5 today.
Have a great week, ladies!
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Hi - it's me again. I had a wonderful time with little Lucia, but my arms are very sore from holding her so much. In fact, that's why I came back to Atlanta - I couldn't be with her and not hold her, and didn't want to push my luck too far. Anyway, just got off phone with RO office. They STILL don't have a start date for me, and both the Dr and the "chemist" are unavailable today. I told the tech that I needed some kind of explanation by the end of the day as to why it is taking so incredibly long to figure out my rads. It's been over 5 weeks. I am feeling really down today- it's a nasty day here, dark and rainy, I am down to my very last sleeping pill, so I have to go out in this mess when the mail comes to get a new Rx filled. The scar on my right side ( the cancer side) is really itchy and that's new. And I am in total limbo. Saw my three grandchildren in Fl on FaceTime this weekend and realized the emotional distance this situation has caused. I was part of their lives on an almost daily basis before BC, now I have seen them once since Sept. We always had stuff to talk about, they wanted to be with Grandma every minute of every day, yesterday I was almost a stranger they were being forced to be polite with. After the how are you's, they really had nothing to say. It broke my heart. That is for me, the toughest part of all of this- I am going thru it all, but not in my normal circumstances. I am with my daughter in Atlanta, and I couldn't be in better hands, but it is her home, her life. I feel very lonely and isolated. 2 out of 4 of my other kids call almost daily, one texts about once a week, the other is having a very tough time with my situation, because she watched her best friends mom die front BC when they were about 15. She already has major abandonment issues ( we adopted her just before she turned 2), so she emails once in a while. Meanwhile, I can't make any plans to get back my life, because I have no idea when I am going to start rads. UUURGGGHHH,! So, I will switch the laundry, empty the dishwasher, plan dinner - then sit here reading and playing word games on my ipad, and wait ....
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Anne, so sorry you have to go through all that waiting and not even be able to enjoy your regular life around you.
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Hope you’re doing really well, Dogsneverlie – You know what I’m talkin’ about
– all this crazy medical equipment designed to deal with our GirlParts . . . . Anyway,
I’ve had 4/33 and so far it’s pretty much a nonevent. You doing OK?Got the simulation last Tuesday, which took over a half
hour. Since the room is pretty chilly, the lovely tech brought me a warmed
cotton blanket. I liked that and mentioned, in jest, maybe they could make that
a standard order on my chart. Wouldn’t you know, I’ve been met with a warm
blankie each time! Feels kind of silly
since I am the table for only about three minutes (I’ll time it tomorrow) and I
even said that but the techs responded that I should keep taking the warm
blanket – they want to provide any little bit of comfort they can during this
darned treatment. Sweet!Thank you, Lojo, for sharing what to (maybe) expect. I saw
the RO on Friday and expressed my surprise at how relatively easy this is, so
far, and he said, “Give it two weeks” Sigh. And, I guess the skin irritation
might continue for a week or two after, so I should figure that in. I have a
calendar and I’m putting a little gold star on for each treatment – it’s a riff
on the potty training trick we used with middle DD (now 25!). She got a doll if
she pooped in the potty for 20 days. Gotta figure out what my little reward is
going to be. Oh, wait, it’s to start taking Femara which the MO told me to
start the last day of rads . . . haha.Anne -- so sorry for this delay. The worst parts of this little journey are when there is uncertainty, with diagnosis, with treatment, with timing. Hang in there and share when you need to.
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Anneb, I am so sorry you are having to deal with feelings of isolation and loneliness. Everyone deals with BC differently -- I remember watching my mother's friends go away when she was sick with cancer many years ago and it made me so angry to think that people could be like that. I guess they felt uncomfortable but I know it hurt my mother very much. I think it shows that even in a day and age when treatments are so much more advanced and can save / extend lives much better than they used to, people still fear that word and do not know how to respond. I hope that as time goes by, your situation gets better. The delay is frustrating and you will feel much better once your treatment is under way. You know we are all sending you lots of hugs from here.
faery: I hope you were not too nervous today for your first tx. Easy to say right? I was nervous but as the txs go on, you become much less nervous. I completed by last whole breast tx today (that was No. 16) and am at work and I feel fine. Met with my RO today and even he was surprised at the way my skin is holding up. No redness yet. My treated breast feels a little sore and I feel a bit worn out at the end of the day, but this has been very manageable for me. I hope it will be for you as well.
After my tx today, they remarked me for the 5 boosts I will receive starting tomorrow. They put two extra pieces on the machine today as they marked me and I noticed what looks like a piece of silver material (lead probably?) that fits inside one of the pieces and looks like the shape of the area the machine will target. One of the techs drew a circle on me which encompasses the nipple area and then made a couple of X's and put tape over those, so tomorrow I can just go in and get my first boost. I will keep everyone posted as to how I am feeling during these final 5 txs. The end is in sight and I am so glad it has not been too hard on me as of yet. We will see how it goes.
LidzyWidzy, hope all goes well for you too! I like the idea of a warm blankie too, although the room I am in is not very cold and I am on the table maybe 1 or 2 mins max, and then out. Keep us posted on how you do -- everyone is different and you may have very little skin issues. Keeping my fingers and toes crossed for you!
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Anneb1149 - That kind of wait would drive me nuts. I can't believe there is no explanation either. I had to wait 1 month because of TE fills but will finally start next Monday. I hope your radiation place gets their ducks in a row soon.
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anneb: have you thought about going to another RO? What does your MO have to say about all of this? I am frustrated for you but wish you the best.
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Thanks so much for all the encouraging words. I guess I sounded stressed enough when I called the RO's office. They FINALLY called back this afternoon. I go for the simulation Wed and start Thurs. My appts are scheduled for 3pm which is fine, because I don't work, but I already have a conflict on Fri. I will be at the hospital for a check-up with the MO, then the once every three week infusion of herceptin. If they start it in time, I will be cutting it close, but if there is any delay, like last time, I will be in trouble. It's an hour drive from the hospital to the rads. But at least I am out of limbo, finally! I also got my sleeping Rx filled, so that is another stress gone. Things are looking up!
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My first of 33 tx start tomorrow, Tuesday! Staying positive - just want to be done!
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Anneb1149 Glad to hear the good news and that you are starting RADs. It will soon be routine for you, they can adjust your schedule if needed. Mine gets moved around all the time when the RO's schedule changes. You can request another time, I wanted mornings since I don't work and they moved me up.
Started week three for me and no different so far from the beginning. Skin slightly tan= some redness after treatments but overall great. I am only in for two zaps about 18 seconds each for 33 tx. I know we all have different tx protocols. For those of you starting just keep breast area moist even if it doesn't look like it needs I. I started using the aquafore from day one and I feel that is why I have no reactions. I seem to be getting used to the rads and I think that is why my skin is fine. Just like when you build up a tan in the summer. Hugs to all
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Mary / can't imagine an NP would say that. Wow!
Anne - glad you have a schedule! That's a relief. We all just want to be moving this forward. We will be on similar schedules. I start Wed.
Seneca- you go! And thanks to all if you who are leading the (my) charge!
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Anneb1149 - Yipee for starting soon! I hope you can get your appointment schedule sorted out too. I'm trying to go in the afternoons when my baby naps. That way I can leave the baby monitor with my husband and everyone is happy.
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Hi ladies - Had x-rays and my first tx today. Was told by 2 people to not to forget to put aloe on your back, as the rads go through you. I was wondering if any of you are using olive oil and/or organic coconut oil on your chest area instead of or with the aquaphor. My skin is so dry still from the chemo. I started using the olive oil during chemo because it didn't irritate my skin and lately I have been reading about how great organic coconut oil is.
Mikesgirl&keepthefaith - Thanks for the well wishes today.
Anneb - Glad to hear that you have a start date.
Kim
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My Mom had #11 out of 16 treatments today. She's holding up fairly well for her 86 years. We notice her skin is looking more tanned and the breast has become firmer than it has been for many years! She's faithfully putting fresh aloe on it twice a day, and started taking serious naps - a first for her, so we know the fatigue is becoming significant. Her RO surmises that her skin will likely hit its worst after she is done.
We've talked with other rad patients with wretched "sunburns." One lady had to walk with her hand on her hip because her underarm area was too sore to let her arm touch it. She was on about 30/33, and showed us part of her fire engine-red skin.
The courage you all show is awesome and a real inspiration to me. I so hate to have anyone have to go through cancer treatment. Just bought a magnet that says "Cancer sucks. That's all." God bless you all.
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Yeah Anne!!! So glad you now have a start date and time. If you have a conflict, they are pretty good about changing times on an as needed basis. Be sure to ask. I will be done with 20/30 today!!!! I actually have 25 rads and then 5 boosts. I am going for remapping today, I will start my boost next week. Skin in red and starting to darken but no open areas and my TE is holding up pretty good too. I am pleased and blessed to have gotten this far with no real issues. Eat, sleep and be well my BC sisters.. -
I had 7 boost treatments at the end of 33. The area of the boost became very red and blotchy. It was hot to the touch and itchy. The nurse said that I should continue to use the Radiagel twice a day, 1% hydrocortisone 3 times a day (at least 1 hour after the raidagel) and aguafor in between if needed. I finished last Thursday, and it has yet to begin to subside. I have also noticed that my nipple area turned very "tanned" and is now starting to peel. My entire breast turned pink and warm and swelled within the first 3 whole breast treatments. My nipple got very painful with just 3 whole breast treatments left, but began to settle as soon as the whole breast treatments stopped. The pink on the entire treatment area is fading, but gets more visible at the end of the day. I guess that is just from being up and moving. I have been weepy on and off since last weekend and have felt mentally exhausted and more physically tired then during the rest of the treatment. I think that is because I knew what I had to do to kick cancer's a$$ while I was going through my rads treatment. Now I know I have to go back on the Tamoxifen, but am not really sure of the path from here. I meet with my MO on May 5 and have lots of questions for her to answer. Until then, I guess I have to be patient and try to just live in the moment and enjoy the fact that I am not driving to a treatment session every morning.
Anne - I am glad that things are starting to look up for you! Once you start, it really does go by quickly
LD - Nice to hear that your Mom is holding up. I could not imagine going through this at 86. God bless her, and you for taking such good care of her
To those who are about to start, or just starting - I hope the SEs are minimal and very manageable for all of you. Remember that we are here for you and that we are sending hugs your way as you go take this journer
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I finished Boost No. 1 today. Just a single 30-second zap to the area where my surgical scar is. I am at work and doing fine.
One thing I want to share with everyone: there have been double-blind studies done on the effects of Tumeric/Curcumin on radiation dermititis. I have been taking a product found on The Home Shopping Network made by Andrew Lessman. I have taken Andrew's multi-vitamin for several years but only starting adding several of his other supplements since my diagnosis. His products are expensive but they are better than any other supplements I have ever taken. I am going to put a link here to the supplement I have been taking since before my rad txs started. Take a few minutes and watch the video as Andrew explains the importance of this supplement. You can google and find the information online about the studies I mentioned above. I am near the end of my treatments and have had no redness or itching. I am having some mild pain right now, but with a ibuprofen it is totally manageable.
I cannot say this would work for everyone but I plan on showing this to my RO when I see him at the end of my tx. He was surprised as I said yesterday at the fact that my skin was not even red at this point.http://www.hsn.com/products/andrew-lessman-turmeric-400-240-capsules/7373550
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BigDBeatingBigC - how much are you taking a day. My RO has me taking 6grams a day ( I take 2grams 3 times a day because of the absorbsion or spike issue). Your supplement has also vitamin C, my RO said no vit C at all during rads. But I could see it as a problem only if you were taking more than 3 a day, since yours contain 30% of daily value of vit C. I am very glad and encouraged that you had great results while on it. The prices of curcumin supplements seem to be across the board and so are the additives or ways to make it absorb better.
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Hey Inks: I take one or two daily, so either 400 - 800 mgs, I try to make them last as long as possible as I take a lot of this man's supplements. Taking something that is liquid or in powder form is the best because in order to get the nutrient from whatever you take, the capsule must break down in the upper intestine. With a solid or hard pill that is compressed together (at high temperatures, that is the way they get the binders to stick and it actually takes nutrition out of the pill), it cannot break down until it reaches the lower GI tract and even then sometimes they do not break down. So the benefit is minimal, if any. I showed both my RO and MO what I was taking in terms of supplements and they were fine with it, but I do not take any extra C as I get a lot from the fruits and veggies I consume every day. As to whether or not this particular supplement is doing the trick for me, of course I cannot be certain, but when I read about the studies I was intrigued and decided to add this to my list of supplements. I also take Breast Health which has Turmeric in it. I figure it cannot hurt and ever since I have been taking Andrew's vitamins (for well over 15 years now), I have gotten maybe 3 colds. Prior to that, I could not even be around anyone who was sneezing without catching whatever that person had. At the end of my treatment, I am going to talk to my RO at length about these two products and see what he thinks. And I want to see how I am holding up on Monday after my final boost. I will let everyone know in here.
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BigDBeatingBigC - I am so excited to start my rads now after hearing about your great results with curcumin. My RO is the one who did one of the studies so I am just following her protocol. I have only $70 invested in my curcumin but the benefit for me would be far greater since I will have reconstruction to finish up. There is a high failure rate for TE reconstruction after the rads because the skin just wont heal.
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Spring girls- I had my rads sim yesterday, tattoos ( pin prick dots). I will start my rads hopefully on Monday 4/14, my first day back at work. I think they gave me a 3:15pm time so it should work. I'm doing 25 tx and poss 5 boosts. My RO will decide since I did have MX and had a complete response to chemo. I think the tech said it should take about 10 minutes for the tx. We will see.:)
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Inks, I am really interested to know how you are progressing, so keep posting here during your treatments. You can find articles online that say do not take Vitamin C or any antioxidant, then you can find others that say there is no evidence that they cause any harm during treatment. Each one of our cancers is different. If I have done myself harm, I will have to live with that, but I am taking what I consider to be not very high doses of anything, including Vitamin C. My MO actually does not believe in supplements. He does not think they work. I totally disagree. I feel good today, no fatigue this afternoon. It varies from day to day but I have gotten through this pretty well so far. I am eating healthy, getting plenty of sleep, exercising, drinking a lot of water, green tea (yes, an antioxidant), and taking supplements. I have not taken many multi-vitamins during this time and they have more C. Anyway, good luck to you and I will look for your posts.
And good luck to you as well, Gram! Your first day is my last day. My txs go so fast, I am out of the room in about 5 mins. You will do fine!
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I finished my radiation treatment today - 30/30 which included 5 boosts. My skin has held up very well so far. Unfortunately I'm suffering from a pretty nasty upper respiratory infection (nothing to do with rads). Sending encouragement to all that are still in treatment, and those getting ready to start. The anticipation for me was far worse than the treatment. Best wishes to all!
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