Any February 2012 radiation gals out there?

GrandmaV

I had my first treatment today.  I found out during my first ct scan a couple of weeks ago that I'm claustrophobic, I freaked out a little.  But I didn't freak out today during treatment.  I think I can do this. 

 I decided to participate in a clinical trial my RO is participating in.   It has to do with curcumin.  It is thought that curcumin can reduce or eliminate radiation dermatitis.  It is a component of the spice turmeric and there is also some evidence that it fights and prevents some cancers.  Since it's a food product I thought it sounded pretty safe.  I don't know if I have the curcumin or a placebo, but I figure if I got the placebo, I'm no worse off than I would be without it.  I have to take twelve 500 mg. capsules a day (four 3 times a day) which makes 6 grams a day.  I hope I got the curcumin and I hope it works.   A researcher at MD Anderson has done extensive research into the benefits of curcumin.  It's very interesting.   This study is being conducted by the University of Rochester.   

 

belleeast

hi all,

5th treatment today, i paid close attention to position of machine today. it must have been my nerves fri because it looked to be the same.lol

saw ro today,asked if i had any questions,told him i had been having a little nausea. his reaction,not the radiation must be medications - uhhh nothing has changed. lost 2 lbs, but that's all right with me,i can afford to lose a lot more!!!

i don't care what he says, i think radiation just like chemo affects everyone differently.

mlm445

Just came back from my dry run. I start on Wednesday. I was disapointed... I was hoping to do 21 treatments and now it looks like 33. I had a large tumor (borderline stage 3)  but was negative in my nodes. But, because of a pet scan that showed some activity at diagnosis they want to treat the nodes and the breast. Has anyone else been borderline with this decison? I really would like to do 21 but want to be safe too.   

belleeast

mim, with you being triple neg. it's better to be safe than sorry!

misha99

mim we will be on about the same schedule.  I started this morning.  We can do it.  Grandma that sounds like a great study -- I totally would have done it.  They are studying the heck out of tumeric so i always throw it in the rice pot-- it is always associated with good!  Belle i also have a bit of nausea today but it may be because i skipped breakfast and then got to rads and the machine was down so i had to wait for a bit.  Also i was very tired yesterday from overdoing it on Saturday so i might just be tired!  I am glad i got started though because last week i was delayed and if the machine had been out of commission today I was starting to think the universe didn't want me to be radiated.  Well, best of luck to everyone-- how are you all who started at the beginning of the month doing??? I am still just counting my blessings that whatever this is -- It is not chemo-- I had a hard time with chemo. 

mlm445

Thank you Belleeast... I see you are triple neg too and you are right....just ready to be done with this as i'm sure you are too:) Hope your nausea is going away....I will be watching your path so I know what to expect... Misha...Yes.. we can do this and your are right...it's not chemo!!!!!  

itsjustme10

Thank you mim445 - I deleted it because I realized I'm apparently thread challenged - just because this IS February doesn't mean I started in February - LOL - and I didn't want to post in the wrong thread.  But thank you.

Christyn37

Grandma V - I'm from the January group and just finished rads today but I wanted to comment on your curcumin trial. I used turmeric heavily through my tx to hopefully fight the burns I was expected to get. I made a mixture of turmeric, black pepper and red pepper and put it on any of my food that it would work on. I shook it onto my eggs, my tuna, my salads, my salad dressings, my meats, well, you get the idea. I also ate a lot of Indian and Thai yellow curries. I finished my rads with my skin pretty dark pink in some areas and pink in others but no blisters and no peeling (yet anyway). And this is for a very fair skinned, large breasted lady. I know that the week or so after rads is the worst but my rad tech doesn't think I'm going to blister. I will be very happy if that turns out to be true but I'm also going to continue on with the turmeric (and of course my cream 4x a day). I really think it made a difference for me. Good luck ladies! You are all so strong and your last radiation day is coming up for you!

GrandmaV

Christyn37- Thank you for sharing that.  That gives me hope that this will work for me (if I'm getting the curcumin).  I also had a friend who went through radiation years ago and drank a quart of green tea everyday and didn't have burns.   She was convinced it was the green tea.  From my research on green tea, I found it helps herceptin do what it's suppose to do, so I've been drinking green tea anyway.  I told the nurse about it before I signed up for this and she said I should just keep doing what I'm doing and I can use any creams or lotions I was going to use.  I meet with my RO tomorrow and will ask what he recommends.  Thanks again.

beegee

I started to write a post, then lost it when I turned back a page.  

Anyway, I just did number 6 out of 34.  I am starting to feel sore a little bit--no redness yet.

I love the tumeric ideas and think I will do same.  

I wish the best for those trying to decide whether or not to do radiation.  In my case, I was scared not too.

Anyone feel fatigue from radiation yet?  I sure hope it's not as bad as it was with chemo. 

Sign on the door to the treatment room:  "Grave danger!  Very high radiation."  Cancer is not for sissies! 

dancetrancer

GrandmaV, thanks for sharing the information about curcumin.  I am aware it is thought to be very helpful, and it is really, really exciting they are studying this in a clinical trial.  I am going to ask my RO if it is ok if I try this (I've been given the all clear to eat as much antioxidant stuff as I want, but haven't discussed supplements with them).  

I've been drinking a grape smoothie with flax seed every day since starting radiation.  Grapes have reserveratol (sp?), which have been shown to help the effectiveness of radiation in killing cancer cells.  Flax seed has been shown to help reduce radiation lung damage (in animal studies).  I also stir flax into my soups and my oatmeal every morning.  I figure it can't hurt, and it is easy to add to my diet, so why not?  

dancetrancer

P.S.  I also drink lots of green tea and have been sure to get lots of cruciferous veggies in my diet. 

GrandmaV

dancetrancer - I use flax seed oil, is it just as effective as flax seed?

dancetrancer

GrandmaV, I am using the ground flax seed based upon reading this:

Which is better, flaxseed or flaxseed oil?

One study comparing flax seeds with sesame seeds (also high in lignans) came to the conclusion that the breast cancer protective qualities of flaxseed were due to its high α-linolenic acid content as much as its lignan content. Another study concluded that the lignan component of flaxseed appears to be most beneficial throughout the promotional phase of carcinogenesis whereas the oil component is more effective at the stage when tumors have already been established. Both flaxseed and flaxseed oil have been shown to be associated with reduced risk of breast cancer. Since flaxseed contains both the lignans and the oil, it appears preferable, on balance, to flaxseed oil.

Of course, this is an internet source of information, so consider that when making any decisions.  I may switch to chia seeds after my radiation, as I've read that chia may be better for you overall (there is some controversy over flax seed) - but I am by no means an expert, so keep that in mind! 

dancetrancer

Oh bee gee - that sign!!!!!!!!!!!!  Good gracious, do they really need to freak us out any more?  My doc takes an xray EVERY tx to make sure I am getting in the right position to protect my heart from radiation...but what will an extra 28 x-rays do to me, on top of the rads????  Ugggghhhhhhh.  Yes, cancer is DEFINITELY not for sissies.  Since I'm a sissy, can I opt out?  LOL

GrandmaV

dancetrancer,  Thank you for that info.  I've heard about the flax seed and oil controversy and whether or not ER+ should take it because it is a phytoestrogen, but I only plan on taking it during radiation for the possible benefits to the lung.   Next time I go to the whole foods store I may get the seeds instead.  Thanks again.

Chicago1958

Good information, thanks! I will stock up on tumeric, flax seeds, and grape juice. The day I got my diagnosis, I must have had 10 cups of green tea--guess I subconsciously thought it would fix everything. Keep those tips coming!

Beegee, I've only done four treatments, but I'm yawning all the time and I noticed in my Pilates class that my muscles were wobbly just doing my usual workout. I thought it might be my imagination, but the RO said, no, you have less of a reserve to draw on. He recommends... dark chocolate! Just a square when you feel low energy. Gotta love that recommendation. And I didn't do chemo, but I'm sure it's much less of an impact.

Sharie, I have felt concerned since I read your post yesterday. Maybe your frustration would be lessened if you spoke up--the loss of control is what makes me feel vulnerable. I think some doctors are indifferent (the bad ones) but I don't believe a doctor would punish you in any way.

Several women have mentioned their tatoos--was that for the side and front positioning marks? I have permanent marker with a clear sticker over them, and after a bath last night with bath oil, the one in front is coming off a bit--oops!

cupcakies

Now i'm confused. I was told to stay away from all antioxidants while doing radiation! 

dancetrancer

Hey GrannyV, I asked my RO about the curcumin trial, and she said she has heard about it, but would prefer I not try anything "off-trial" until the results are in.  So thank you so much for being a part of this trial! I think it could be a great help to future women.  I hope you are getting the supplements!  Sounds like we are on the same page re: flax - eating it now, but stopping after rads.  (I think I'll switch to chia seeds then.)

chicago, I've got the markers with stickers, and they drive me NUTS.  I'm forever worrying about them slipping off, especially when they start coming loose.  The techs reassured me that it is fine, b/c they confirm it all with an x-ray before they start.  Still...makes me contemplate just going for the tatoos instead... 

cupcakies, I am not allowed to take any supplements b/c I was told it may actually diminish the effects of rads.  I totally am on board with that - if I'm doing this, I want to get the most benefit!  However, I did ask if I can try to get as many antioxidants as I can from eating whole foods, and they said that is perfectly fine.  They feel that you are much less likely to get "too much of a good thing" if you are incorporating it through diet only.  Ask your RO - each one likely has their own opinion.  

Chicago1958

I showed the technician the sliding sticker and he said, "we'll just give you a tattoo!" A quick alcohol wipe, a tiny sting, and now I have a freckle marker--like a fleck of black pepper. Not bad at all!

And I'll ask my RO about diet the next time I meet with him. He knows that I'm medication-averse, so maybe he didn't even bother mentioning to avoid supplements. My guess is that he'll agree with what Dancetrancer says -- eat whole foods. Everything in moderation. He said my evening glass of red wine was okay. Now that I think of it, there's resveratrol in red wine too!

I did pick up some tumeric after my appointment and will be sprinkling it freely... thanks again for the info, it seems like a reasonable change to make.

dancetrancer

Cool chicago - so no stickers now?  Hmmmm...maybe I'll just go for the tattoo after all!  I've got so many moles, I doubt I'd even notice them much at this point.  And I'm all for the red wine, too (go resveratrol!).  Moderation is the key, as you said! 

Chicago1958

The stickers under my arms are still there -- they seem to be stuck on tight and I never even notice them. But after seeing how tiny this front center tattoo is, I won't mind if they ever do the sides too. I was imagining a tattoo would be a visible, lasting reminder, but you'd have to be looking for this to see it. The sticker was starting to itch a little too...

rozem

Hi ladies

would like to join this thread -

I am starting rads next wk, so maybe the march thread would be better but what the heck!

is anyone using emu oil?  i heard it was great to use after treatments

also - i had neo adjuvant chemo, had a complete response to chemo.  They only took 2 sentinal nodes - also all clear

if there is anything microscopic lurking in the axilla nodes/or lymph vessels the rads will get that right?  i thought that was what chemo was for!

rozem

chatsworthgl 

i read your post yesterday on why do a SNB if rads cause lymphadema aswell - i have spoken to many docs about this - rads cause a significantly smaller percentage of LE as a full axillary dissection.  I was wondering the same thing aswell.  My BS only took the 2 sentinals aswell - they were both clear after neo adjuvant chemo but i am doing the rads to the axilla just in case. 

GirlPowerDebbie

Well, I had #14 today ... no changes to my skin yet.

Beegee - I started feeling soooo tired over this past weekend.  Nothing like I was during chemo, but my butt is dragging, for sure.  I read that fatigue with radiation is cumulative, so I guess it's time to start feeling tired again.  I was enjoying feeling good after getting over chemo.

I have 3 eyelashes left on my lower left eyelid. Most of my eyelash fallout occurred after chemo was over.  Blech!  BUT ... I have about 1/8" of fuzz on my head!  It does not seem to have any color, but hey, it's hair! 

Re antioxidants ... on my first visit with the RO I took my bag of vitamins, etc I take each day, which was approved by my MO too.  It includes vitamin D, B6, B12, calcium, multi-vitamins ... and I use a topical antioxidant on my face and boob.  Neither of them said the antioxidants would reduce effectiveness of the rads.

Welcome newbies ... we are in this together.  Hang in there!

Debbie 

GrandmaV

rozem, The only thing my RO wanted me to use is emu oil.  I've only had 2 treatments so can't really tell if it works. 

bak94

rozem-congrats on the complete response!

patriotic-I am way behind schedule also because of infections. I start rads tomorrow.

I did find out that I do have to do the bolis thingy, I guess I get introduced to mr. b tomorrow. I think the nurse said I have to have it everytime. Isn't it the thing that makes the ray more concentrated on the skin and can cause you to burn quicker? I am a bit worried about rads this time. The first time I did rads on the otherside after a lumpectomy it was pretty uneventful, except my nipple turned black about a week or so after I was done! They said that was normal and it went back to normal pretty quickly. This time I have no nipples to worry about.

Is emu oil from an actual emu? Like emu fat?

bak94

Ok, I won't be using emu oil. What does it smell like? Is there something else as good that is vegetarian? I have nothing against others using it, but I have a weird thing about eating animals and using animal products, that being said I am sittng here on a huge leather couch and wear leather shoes and belts! (and I occassionly eat meat, as my mo said I should) Like I said, it's a weird thing I have, ok with somethings but not others, and never am I judgemental about what others do:) Does olive oil work?

dancetrancer

bak94, I am using Udderly Smooth cream.  This is what my RO wants me to use.  Check with your RO to see if they have a product they prefer you use - all the docs seem to have different preferences. 

mlm445

Had my first of 33 treatments today. 32 to go! It was just fine.

Rozem, I too had a complete pathological response from chemo (feel so blessed) and clean nodes.. the radiation is your back-up and added insurance from this mess coming back.

Regarding the supplements, my RO did give me a list of vitamins not to take but seems to ok with with a multi, B complex and calcium. I'm excited to hear about the red wine!

For the skin my RO said to use Boiron Calendula gel or cream. I'm also using Dove unsented and Tom's natural for soap and deo.    

Fight on strong women!!!