Summer 2013 Rads

CLYDAY

I am starting RADS a week from Tues.  Had DMX with TE.  I understand why you need the RADS to target the area where the tumor was, but for me the tumor and breast tissue was removed?? The RO said I need it due to my age, TNBC, and the tumor was near my chest wall.  I am so scared my skin will be damaged to the point I will not be able to continue with reconstruction! Any advice??

ldesim

Heart and Iam Nancy.. sorry to hear about the fatigue... hopefully its a result of something else and not the radiation... I'm worried about that as well since I can't really take any more time off work.. and 27 more seems a long road!  For me, the daily grind of it all is going to take its toll.  Hope you gals get plenty of rest!

Hi Peg, welcome  I can't wait until I can say 6 more to to go!!! The finish line is in sight for you!  Sorry about your arm.. not like you didn't have enough on your plate.. sheesh!

Back on the radiation grind tomorrow with #4.. it's going to be a long week!

Sydneyluv

Hi Idesim,



The Savi device is a tool for the delivery of internal radiation. There are several types for partial breast radiation, most all of them for a 2x/day for 5 days treatment. It's for women with early stage BC with negative nodes and est +. The device is inserted in its own surgical opening and it looks like a torture machine but I understand its not that uncomfortable. It has to conform to the lumpectomy cavity though and that's part of my nervousness. Will it fit in my situation?



Thanks for welcome. I am so appreciative of this website! It has helped me so much. People are so well informed here and caring!

IamNancy

Sydneyluv - I looked up the Savi device and it looks like it will be so efficient and also save you from ending up with burned skin, etc.. I wish I had been offered that - even though you hve to go for treatments 2x a day- you'll be done in 5 days..

melody46

First treatment today but Im not sure if its just a dry run or not but pretty sure tomorrow is the real deal. Still have realy really achy legs and fatigue but I keep reminding myself it does get better.  The leg thing really caught me off guard and has been going on for days

Heart2930

I looked up the Savi device and it looks interesting. Unfortunately, I need whole breast radiation not just site.

Idesim- I actually feel much better today. Ready to start another week of radiation . The fatigue was really weird and came out of nowhere. In the beginning my RO said he doesn't think fatigue is really a SE. Since it usually starts around the 4th week he thinks that people are just worn down by the grind of coming everyday at that point. Not entirely sure I believe this. We'll see if the fatigue happens again.

Peg- You're almost done!! YEAH!!!!!

Lin43

Radiation is the most scary for me also. You'd think that after doing the red devil chemo and other chemos and mastectomy that nothing could phase me anymore but radiation creeps me out. I am trying -- not very successfully -- to picture warm healing rays. Arghhhh!!!

Love your picture ChickaD. We need bright and cheerful here. I went shopping and bought myself two very lightweight and soft cotton shirts yesterday--lime green and hot pink. The colors make me smile and they are cooler with the tank under them than a lot of my other clothes.

After Tuesday, we will be 1/6th of the way done, Idesim.

Sorry to hear some ladies are experiencing fatigue already. Will your doctors allow you to take any supplements--B12 or ?  I never know whether to blame my symptoms on radiation or Herceptin or just plain tuckered out from months of treatment!  Arghhhhh again!!!

Already looking forward to the three day weekend!

Gentle Hugs

Linda

IamNancy

Heart - I talked to my RO today about fatigue after only 4 treatments and he said it was from the treatments

Lin - I am taking a multivitamin - never thought to ask the RO if I was allowed to take it..Didn't take vitamins during chemo though..guess I should ask.

ldesim

Hi Linda.. I love the way you think....  1/6 of the way surely beats 24 left to go lol.

I think the combination of months of treatment and the daily aspect of this helps fuel the fatigue to our poor battered bodies.  Good idea.. putting the shirts on will give you that little boost

So glad you're feeling better Heart... 4 more days and we get 3 off  

Clyday, that's why I have to have radiation even though I had a mastectomy.. because it was near the chest wall and I had the added bonus of lymph node involvement.  I can't comment on the reconstruction aspect, but you'll get lots of input here and in other boards.

Sydneyluv, I don't know what I'd do without these forums.. they have been so helpful to me and it's so nice to chat with others that understand exactly what you are going through.  Thank you for explanation.. that is really fascinating, and how great that you'll be done so quickly. I hope it works out for you!

I'm going to get my rest... glad everybody appears to be doing well so far!!

AnnieLane

Hello Ladies, I am 11 days out from my last chemo treatment and had my initial consultation with my RO today. I really liked him. I'll be doing 5-6 weeks whole (right) breast radiation, probably starting the end of May / beginning of June.

My RO said I could wear any deodorant or antiprespirant I want. He says the taboo on it is old-school and unnecessary. He's no spring chicken himself and has been doing this a long time and has seen a lot changes. I had already bought some Tom's of Maine, so I'll probably just use that. The idea of going without in the San Antonio summer heat was pretty gross.

Heart2930

IamNancy- I think I agree with your RO. Maybe mine didn't want me to watch for the fatigue. You know how some patients can manufacture symptoms if they expect them. I think he was just trying to head that off. I don't think my Radiation Nurse Practitioner (is this RNP for short) buys into his theory since she is constantly talking about ways to ward off the fatigue. I really feel it today. It's a weird fatigue though. Not like when you are tired after a day of doing something, and are just kind of sore maybe and worn out. It is like I have lead weights in my arms and legs. I just discovered those new Crystal Light Energy packets. I think those are going to be my friend today. Go Caffeine!!!

peki007

I asked my RO today about the fact that I was having the 4 week regiment instead of the 6 week that most people receive.  He said that if I lived in Canada or Europe the 20 day cycle is the standard.  I didn't realize that.  I was just worried it wouldn't be as effective and he said it is - you just get a little more that last week - I guess in the form of boosts.  As long as it does the job, I am happy.

blackcat2012

I finished chemo last week and go in next week for my RO planning meeting and I am assuming it will also include the tattoo's and scans that go along with it.  What questions should I ask my RO?

Lin43

I met with the integrative medicine oncologist today. She likes calendula for reducing inflammation and cooling the skin. I already have pink/red areas (maybe cuz of the bolus every time?) so I will give it a try.

She also said not to take a multivitamin with retinyl palmitate (a form of vitamin a) during rads, but beta carotine is fine. She shared other info about diet and supplements for the future--to reduce cancer risk--and I will post that here when I have more time.

So sorry some ladies are feeling fatigued already. :-(

My biggest complaint is warm, pink, kind of tight feeling skin.

Right now, off to bed cuz my rads are first thing in the morning but first a message for Idesim--after Wednesday, we will be 1/5th done. :-)

Heart2930

Hi Blackcat2012,

I think it depends on what side you are having your radiation on what you need to ask. I am having left side radiation. I was really concerned with effects to my heart, but we ended up doing breath hold radiation. During the sim they determined how much air volume I can take it and how long I can hold it for. They used 80% of those numbers as a treatment guide. By holding my breath I expand my chest so it gives them more room to miss my heart. I actually can take in enough air that we have gotten my heart almost totally out of the radiation field. Every 5 treatments we will do a series of 6 X-rays to make sure we are still on track and to check for any lung issues.

I really didn't have to ask too many questions. My RO and my radiation nurse practitioner gave me so much info that they answered questions I had not even come up with yet.

I am currently done with 4, 26 to go. The last 5 will be boosts. It is really not as bad as I thought it would be, eventhough I am starting to burn a little and have some fatigue going on. I actually thought it was going to be much worse. My RO explained to me that skin tone and if you sun burn easily really has no bearing on radiation burns. But even with this info in the back of my mind I expected the worst, and have been pleasantly surprised that my burn is rather minor at this point. I guess I expected this because I am VERY fair skinned. My Dad is a red head, and I have his skin tone so I am kind of pasty white year round. I have never been able to tan and always burn. But so far... not too bad..Good Luck!

melody46

peki007 I am starting radiation today and am also having the 4 week treatment, I thought it was some good news finally!

blackcat2012

Thank you Heart2930 for your response and I am also having left-sided radiation and I believe from what my RO told me in our consultation visit back in January that I will have approximately 36 treatments.  Ugh, the fatigue does not sound good. 

ldesim

Blackcat.. congrats on finishing chemo!!  

Day 6 done and a little fatigue, but I think it's the result of crappy weather and busy at work more than radiation. Tiny bit red... I have the urge to itch the area, which I am trying not to do.  They gave me me cream, but I think I am going to get  calendula.. or maybe I should have RO prescribe something so it's cheaper.

Linda... thank you for the cheer up!!! 1/5th done!!!!!!! Glad you're doing ok.

Melody hope everything went ok for you today.

Lin43

Blackcat--welcome to summer rads and great that you finished chemo. I figure that each day we move forward in treatment brings us one step closer to normalcy. It is quite a marathon, isn't it?

Idesim--Yes...1/5th done. Really looking forward to the three day weekend! So, out of the next 11 days, we will only be getting radiation on 6 of them. That is doable. I get pink/red and then it fades a bit by the next morning. I like the calendula but wish I could get it for free or reduced cost. Sometimes prescriptions are the cheapest way to go. This all gets so expensive!

AnnieLane--welcome aboard! I can commiserate with deodorant issues as I live in Phoenix. 102 here today. Not a time to be without.....I am using Tom's and so far so good. 

Heart--I am also fair-skinned but guess that doesn't matter with radiation. Weird, isn't it? Glad it is going ok for you right now. 

Melody and peki--great news that you are doing 4 weeks instead of 5 or 6. 

Nancy--I hope your fatigue is manageable. We were all battle weary before this weren't we, so this is extra tough!

Sydneyluv--The savi device sounds interesting. We have all learned so much going through this...

I had a caramel ribbon crunch Starbucks this morning. Caffeine!!! I am also drinking a lot of water to keep hydrated. My onc said to do whatever I need to get by these next few weeks. I am taking B vitamins and hoping they help a bit. 

Here are some recommendations from my integrative oncologist for breast cancer patients who are post-radiation and chemo: 

Nature's Way Ashwagandha--vegetarian capsules in a purple capped bottle and available at Walgreens.

Nature's Way Astragalus--also available at Walgreens 

Gaia Herbs Turmeric Supreme (with black pepper)--for inflammation and these can be taken during radiation and beyond.

Pickled foods--Deli pickles, Kimchi etc. She says not to overdo it but there is evidence that they help keep our bodies in balance. 

She also referred me to the nutritionist, the exercise physiologist, and the acupuncturist so I'll share anything I learn from them. She is interested in treating the whole patient so I am excited about learning new things to keep me healthy in the future. I have met my copays and coinsurance so these services will be free. Yay....I guess.....though I do not want to reach these levels of medical bills ever again! Much rather spend the money on a cruise or something!!!

Hugs

Linda

melody46

Hi Everybody, Radiation was a breeze! have lots of questions for the dr when I see him next though.  Also had my 4 week post chemo appt today and got the prescription for tamoxifen.  Has anyone else started taking it?

IamNancy

Lin- interesting about the various herbs - I guess they are herbs.. and deli pickles.. looking forward to other info you share.

melody - I have my post chemo appointment next week - I may get my prescription but I don't think they will start me on it until radiation is done - that way they can tell what side effects are from what..

ldesim

Lots of great info Linda, thanks so much for passing it on.  They are taking great care of you for sure I find that radiation for me has been a very impersonal experience.. this leg of the journey I feel like just a number.

Congrats on first one down Melody  I've been on Tamoxifen for 2 1/2 weeks.

melody46

My Dr. has been telling me terrible things about Tamoxifen and I'm really scared to take it! Mood swings, depression, blood clots and uterine cancer, geez where do I sign up? Sounds like a vacation,  I just want to feel a little normal for a while before I start but he says I should start now...

ldesim

I know exactly what you mean.. I put it off for a few weeks, just wanted to feel normal for a bit and the side effects scared me.  So far so good.. I haven't gotten anything, but I've read on here that it takes awhile for them to appear.

PoohBear-61

Finishing rads tomorrow.... 30 rounds .

Skin is not so bad ..a few pink spots like a mild sunburn and nipple is a little sensative ..

I am very faired skined , freckled , and sun burn easily ( never tan)....so i am surprised that i didnt have a bigger reaction .

I didnt use any cream either ...i tried 2 times with Glaxol base but i would develop a little rash after application so i stopped .

Start tamox and zoladex shortly.

Good luck everybody !!!!!!!

AnnieLane

Hello everyone, had my CT scan and simulation today, so of course I'm tattooed, stickered and marked up. It was pretty quick though. Now I wait for my RO to work up my treatment plan and for the treatment center to call in a few days with my schedule. Somewhere in all this I hope to get my port from chemo out as soon a possible. I'm tired of that thing.

Heart2930

Melody46,

I was really worried about Tamoxifen too. My BS told me about all the horrible side effects, and basically said that I didn't want to take it. My RO had a totally different opinion and referred me to a MO. Both the RO and MO feel VERY strongly that I need to take it, expecially since we were not able to achieve negative margins. Finally, decided to visit my OB/GYN who I have been seeing for 20+ years to get his take on Tamoxifen. He also felt VERY strongly that I needed to take it. So I am going to give it a try and see. I actually just found a very interesting thread in the Hormonal Therapy discussion area. This thread was started by someone asking for people to chime in who have had little to no SEs from Tamoxifen. There was a surprising number of people who had no SEs or very small manageable ones. The name of the thread is "Tamoxifen, Its not all bad is it?" It made me feel much better about the whole thing.

melody46

Thanks Heart, I'm going to pick it up today and probably start the beginning of next week.  I know at least I need to give it a try, there are so many things associated wit BC that cause depression and anxiety I was thinking I really dont need one more.  Maybe I'll get lucky and be one of the people who dont experience its SE's.

AnnieLane

Melody46, Melrose from our chemo thread is on Tamoxifen. You might want to send her a private message and see if she has any pointers for you. One tip I have heard is to start off with a half a pill and then transition to the whole one to sort of ease into it.

ChicagoJane

This forum has been a huge help and now serves as my "morning paper."  It's so interesting that we all have things in common...but also encounter "unique" treatment reactions/outcomes...and feel differently about them.  I am in "get this thing over with" mode now...so the crying and denial had to end. 

A few observations after my 12th radiation treatment...

Fatigue came out of nowhere today - for the first time.  I feel dizzy and just bone tired.

Saw my Doc yesterday and he said my skin looked good.  (I am fair skinned so have been expecting the worst.) Today my entire chest is irritated and pink.  I'll see what he says next week. I'm slathering myself in Miaderm during the day and Aquafor at night.  I have been keeping up with my Pilates reformer class, but last night felt uncomfortable with some of the arm movements.  I will keep going until I can't stand it.

I do have had a weird sympton that my nurse says is not related.  Namely, I am very thirsty and have been getting up 1-2x per night to pee. This is not my typical.  Anyone else have this?

I hope you all have a nice long weekend. I am thrilled to have a day off on Monday.  Thank you Veterans!