June 2012 Radiation Rads

NancyHB

Bonseye - I'm so sorry for the loss of your friend.  This time is difficult enough as it is, without also losing someone you love so much.  I hope you have some time to enjoy your happy memories of her.

So okay - I succummbed to peer pressure and had a drink last night.  :-)  I know some think I'm a little crazy for giving up alcohol, but I've had some damaging things happen to my liver in the past, and my biggest fear in the world is mets, so I wanted to give my liver a chance to live happily without added stress of processing alcohol.  Sometimes I miss it, but for me I'm not very good at "once in a while" - it usually turns into "once a day".  I have no willpower - it's the reason I simply cannot seem to give up sugar.

I had my fourth treatment this morning; so far so good.  I am noticing, however, the my left arm is achy and my fingers a little more numb than my right arm.  I had no node involvement so I don't believe they're radiating my nodes, and I don't think it has to do with lifting my arms above my head (it's such a short period of time).  I don't know - anyone else experience this?

Denise-G

Nancy - I haven't had a drink yet, but sure am ready to have one!  Waiting for next blood test to see liver results!  If they are near normal, at least having one glass of red wine!

Had a lymphatic massage yesterday after treatment (my hospital provides it for people with node surgery).  Anyway, therapist said radiation can tighten the tissues.  I notice the tightness but thought it was just cuz of nodes, but really, it seems it could tighten up anywhere!

mamabee

Bonseye - I'm so sorry for the loss of your friend and your overall bad day. I hope today is better. Hugs to you!

Nancy, I don't think you're crazy for giving up alcohol. I've mostly given it up - a glass of wine no more than once a week - because my tumor was 100% ER+ and before I started treatment it would actually hurt when I drank a couple of glasses of wine so I figured the alcohol must have been helping to "feed" it. I'm going to a graduation party tonight so tonight's my night - cheers!

The radiation does shrink up the tissues/muscles - like bacon in a microwave my rads tech said - so it's important to continue to do any PT stretching exercises. 

Good luck to everyone doing Tx today - yay for our 2-day break! 

Denise-G

EWWW, bacon in a microwave, huh?  That image sends me to the wall to do the stretching exercises!

Thanks, I needed that to keep on track!!!

rava

10 down 15 to go Skin looks great Now I'm having a friday in total relaxation, almost are celebrateing my oldest daughters birthday whit her classmates before school ends. They are downstairs so we don't see or hear them... Dinner is almost ready, my own version of Kleftiko and red wine )



Have nice Friday!

Bonseye

Lagata,Neeners, Believe--thank you all so much for your kind words....today was a better day.  I did have an awful headache from all the muscles being pulled....I went to RT with lots of medication on board and my husband drove me.  I was feeling queasy after I was done...met him in the coffee area and realized my stomach wasn't in good shape.  I wound up being sick, was able to sneak to the bathroom....but that was out of the blue.  I have no idea where it came from.  I came home and slept for 3 hours. Overall I feel better mentally.  My dear friend came by at the request of my husband and it really helped me immensly.  I am staying focused and moving toward the end......

 To all us ladies receiving Radation--I think a glass of wine is in order.....I am in need of a glass for sure!!  Whatever it takes to get through this.  I was in a bad place and wanting to quite...but I am in no way a quitter--so if a glass of wine helps--I am there!

Happy weekend to all you amazing ladies!!  Thank you so much for your support!!  I am moving onward....21 to go!

Believe777

Bonseye- so glad you had a better day. Maybe it's all the prayers we sent your way.

I had my 4th treatment/zap today. Yesterday I came home and went right to sleep (bad, since my appt. is at 1:30) I'm doing much better tonight. TGIF has a whole new meaning! Hopefully we all get two days off, enjoy! I know I will.

kcobp

I just finished radition. Canadian, 16 treatments & 5 boosts. I have a large jar of aquaphor & I apply it very generously. Bali has a bra that comes in s-xl. It's microfiber & it felt good and actually supported. I just wish I had brought a size larger than what I needed.

At the end I had the boost straight on and my nipple is a bit raw. I'm wearing a couple of Jockey camis with a shirt over them. The camis are soft & they keep the aquaphor off the shirts. I'm going to spend tomorrow trying to get the aquaphor out of some shirts. I'm told dawn will help.

akinto

I have been off at a conference the last couple of days. The RT was scheduled with a travel day so I could fly out for a long weekend.



I have finished 8 of16.



I feel just fine. I am walking at least 3 miles a dazy now, as exercise is supposed to help. I am eating an unbelievable amount of protein. I am taking North Amrican Ginseng (2000mg per day) and a big fish oil capsule. I didn't know what to do so I did it all. something is working.



My breast is sometimes achey. But I have way fewer symptoms than I worriedI would.

So far, so good.

babette54

My appointment for radiation mapping is next Thursday (6/21/12) with actual zaps to start the following week.  I've read on several discussion boards explanations of what to expect which are very helpful.

I am a new member (finally decided to join) and have a couple of questions:

1.  I had a complete pathological response to neoadjuvant chemotherapy--NO sign of cancer in my breast or nodes.  (Cancer was discovered through biopsy in one node prior to chemo.)  My RO says I still need radiation therapy to kill any cancer cells that may still be "lurking around" after my lumpectomy/lymph node dissection.  Apparently, this is the standard of care, but seems excessive.  Does anyone have experience with this situation?

2.  I have a small (?) seroma under my arm where the nodes were removed.  My BS says that he didn't see any problem with starting radiation and that the seroma will be absorbed by my body eventually.  My RO has not seen the seroma yet as my appointment is next week.  Can I proceed with rads with a seroma?  Are there any negatives to doing rads with a seroma?  I'll ask my RO but am looking for an immediate answer.

Thanks.

Neeners815

Last night I started 'feeling the burn'.  I don't see any red spot, but I definitely feel it.  It's almost to the middle of my chest, by where a seatbelt (!) would rub.  Sort of cleavage-y.  Oh boy.

Today is the Relay for Life so I need to figure out something I can wear that won't irritate it.  I'm definitely going to lube up! 

janiemomof2

Babette,

You and I are on the same exact schedule - 21st for final set up, 25th begins rads. I'm doing the Canadian protocol - 16 treatments. I'm happy about this for exactly the reason you are saying - it all seems so excessive. Although I'm in Philly and the "usual" protocol is the 33 days, I'm being treated at Penn and they always have research happening. When I heard my RO is leading a study to show the efficacy of the Canadian protocol for tx of lumpectomy patients I jumped at the opportunity to be part of it. His belief is that we are "over" radiating b/c our protocols haven't kept pace with our technology. We use the same amount of days to treat but our radiation has continued to get bigger/stronger/faster.

However, I do understand why rads is helpful when you have only had a lumpectomy. Cancer cells are so small, and certain types do like to travel... if this can finish them off and decrease rate of recurrence then it makes sense to me.

Re: seromas... OMG! I struggled with that little pocket of fluid for weeks and weeks after surgery. My surgeon had me come in every few days (when it got uncomfortable) and they would drain the fluid out. I probably went in about 7 times before my body started processing the lymph fluid properly all by itself. As far as rads with seroma I don't know of a contraindication for it, perhaps they can just drain it for you so you don't have to be uncomfortable at the start of rads...

Good luck! and welcome to the boards ~~~

julz4

Hi All! I'm new to this thread. I have been reading some. I have my simulation on the 20th. Not sure when they will start the RADS. I'm still waiting on the final DX of HER2 being + or -. As I'm in a gray area for other meds or Chemo. The test should of been in this past week. I see the MO on Monday....not sure what all we will discuss if the test isn't in. But that aside, my ? is can I start RADS if I just had a tooth pulled? I go in to have it pulled several hours before my MO appt. It's good to see all the info & suggestions! Thanks!

Denise-G

Julz4 - Welcome!   Gosh, don't know about tooth pulling and Rads! 

Started Week 2 of Rads...so far so good.  Saw RO today.  She told me to keep slathering my lotions and potions

it is helping.  How are all of you doing???

NancyHB

Hi Denise!  I just started my second week, too (5th tx).  Last week was easy-peasy; today, I came home after and fell asleep for an hour.  I *think* it was because I had a hard time falling asleep last night, but I have found I'm generally a little tired.  I was off chemo and starting to feel so good, and I just don't want to go back to that super-exhausted place! 

Hope everyone else is feeling great!

MiniMacsMom

What do you ladies think is more important, the number of rads treatments or the total volume of radiation.  I am scheduled for 25 fractions for a total of 50 gy and 5 fractions of 2gy boosts.  Becuse of the fourth of July, we have to stay an extra weekend for the last boost treatment on a monday.  (I start today).  I see the RO on the 21st and I am tempted to negotiate a treatment change.  for instance, dividing the 2 gy of rads from one of the whole breast treatments over the course of 24 days instead of 25.  MDA is doing all sorts of trials with shortened rads times and two dose a day treatments (which i didn't qualify for : (  )  Any suggestions.   Why this matters, I traveled from KY to TX for these treatments with my two year old.  I didn't realize how hard being away from home would be until I got here   Its a pretty significant chunk of change to be able to leave on that friday instead of that Monday, between the apt and the car rental, gas, food, ect...

akinto

The study showed that the outcomes (for women  with invasive breast cancer who had undergone breast-conserving surgery and in whom resection margins were clear and axillary lymph nodes were negative) were the same between 16 doses totalling to 42 units and 25 doses totalling to 50.

I don't think they have tried it for people with positive lymphnodes.

Believe777

Off to my 5th radiation treatment. Sorry I read about Scatter this past week end. I wonder why they don't put a cover on our good parts, like the dentist does , when they take x rays? I will ask today and report back. I only see the tech today, I meet with my RO on Thursday.

Denise-G

Minimacsmom - you certainly have made a sacrifice to go with your 2 yr old to Texas.  You mentioned MDAnderson, so I take it that is where you are receiving treatment?  I have a friend in Ohio who just went for a second opinion at MDA.  Her 2 children in their 20s had rare forms of cancer.  They gave them no hope in Ohio.  They have been cancer free for many years now.  She will go no where else but MDA.   I hope your experience has been good there.

Would appreciate your thoughts about MDA and why you chose it, other than #1 Cancer Hospital!  Wishing you well.... 

Hi Nancy - I was tired today too!  I told the RO I wasn't planning on being tired over Rads since I got all that over with during Chemo.  She laughed.   Maybe we are just tired because we aren't used to doing much!  Now I am trying to do a lot and enjoying all of it!

mamabee

Minimacsmom - What did your RO say? Hope they can work something out for you.

Started my second week and had #6 today. Feeling a little itchy, especially near my collarbone. The tech thought it looked a bit red there too so she told me to slather lots and lots of Miaderm.  I already put it on 4 times a day - don't know what else I can do. 

MiniMacsMom

Don't get to see the RO again until the 21st, just trying to put together an arguments  

Denise:  I chose MDA for a few reason's.  Initially we were going to go to Vandy but my regional onc said if your gonnna get a second opinion, go to the best!  I could have gone to either sloan kettering or tx, I have friends or family in both locations.  We chose TX because of the winter travel needed.  I used to live in Jersey and I didn't want to deal with canceled flights and black ice!  Unfortunately, the family we planned on staying with in TX for Rads didn't work out.  They are older and retired and having a 2 year old turned out to be too much for them!

 I like MDA, free child care, 90% of appts in one building.  All the docs I have met so far are great.  Each person you see for BC ONLY does BC, including the pathologists. 

They also have a travel agency, if you book your plane tickets through them and you need to change plans, there is no charge and you don't have to provide any medical paperwork.  We didn't use them the first time we went and it took 4 months and a personal letter from the doc to get out money back the first time when we ended up having to stay 4 extra days for tests. 

I also love the my.mdanderson. Its a website that allows you to read all your reports and tests, you can watch videos and read MDA info on treatments.  You can also email all your doctors directly.  In the end, there are just a BUNCH of little perks that add up to making it a great place to go.  I also saw today in the rads changning room athat a woman is advertising her gated garage apt for really cheap for MDA patients staying for treatment.  I gotta get the info so I can post it!  Its really a nice thing to do. 

Mamabee: they let you use something.   The ROs here said I wasn't allowed to use any products, lotions deoderant, nothing for two weeks.  After two weeks if the RO thinks I need something I can only use what he gives me...   I hope it gets better, I had #1 today.  I find it really creepy.  I was actually more comfortable with chemo and the funky chemo nurses!

Lagata1276

Today was my number 5 too. My regular machine had a glitch so I had to wait for the first time before they called me in, about 15 min., still back in my office in less than an hour.

I think I am just tired due to interrupted sleep from my sinuses. However my nipple is definitely tender as of today. That bums me out, hope it doesn't last or this is going to be a LONG 6 weeks. Faithfully applying my Biafine, maybe tonight I'll put some Aquaphor on top too. RO sees us on Tuesday's so I'll see what he has to say.

BLinthedesert

Diana -- the RO sees us on Tuesday's, I am still giggling.  

Myna

Hi All.  I completed my 6th of 34 treatments today.  Starting to get a little painful and a bit of pink is now present by the scar (lumpectomy) on the L breast but all else OK.  RO said this was normal and the redness would increase as we went further in the treatments.  At least she is honest about it.  I started taking Aleve twice a day since Friday and the RO said that was fine.  I am using the calendula gel from Boiron and some 99% pure aloe vera.  Both are approved by the rads center. 

I am a new member to BC.org, but have been reading the posts since I was dx in January.  Still trying to get used to this new deal.  The daily treatments are just difficult because I live about 45 minutes from the hospital where I am getting the rads.  But all my MDs are there, so I am doing it. 

Good luck to everyone!

Hildy910

Today was number 11--took last Friday off to travel for a family event, so now my nice little five-day treatment chunks are all bollixed up. However, by Thursday I'll be more than halfway finished--yay! Skin is doing well thus far, fingers crossed that it will continue. I started using the MyGirls three weeks before rads began as a sort of experiment to see if it helped. Of course, I have no idea whether it is or not as I have no way of comparing my skin without the MyGirls, but no complaints....

Lagata1276

BLinthedesert- hee hee, that was a funny! The NP gave me several sheets of Tefla non adhesive dressing to put over my nip. The doc just said some dressings can peel your skin off at some point, so be careful. Other than that, they took an X-ray and said everything looks good so far.



Myna - god bless anyone that has to drive that far everyday to get treatment.

sweetpea23

Hi. Just thought I would say hello after lurking around for a few weeks. I had my 2nd rads dose today. I have been pretreating w/ Aquaphor per the RO instructions. I was just wondering if any of you all feel like a fluttering?, a light shaking?, when the rads are zapping you. I did not feel anything yesterday but today I did. It felt kind of weird. The rad techs at my center are very nice and the non rad boob gets covered in a small quilt that I got to select and get to keep made by volunteers. I think I probably will hate it by the time I am done and never want to see it again, but the idea is a nice one! Also, does anyone have a brand name of a 100% Aloe that they are using that works? Thanks.

Cindyl

Sweetpea23 look for fruit of the earth.  It should be available at WalMart or Amazon.

julz4

Thanks Denise-G!  Tooth's out feeling better now.  As for the boob!  Well that's a whole other story!  I went to the MO yesterday.  He thinks that any meds or chemo for what I have is too risky for me.  The risk is much more than any benefit.  So that leads into Genetic testing as I have maternal Grandfather (DX late in life was never treated)  & Uncle (much younger & has been through chemo) with Prostate CA .   Maternal Great Aunt (died of BC)  & her Daughter (BCx2 still living in her 80's now) that had BC.  What is way more prevelent is Strokes & Heart Attacks.  I also have had issues with heart, high BP & high cholesterol.  BRCA testing was done today.  If it comes back positive then we will discuss a BMX!  As the chance of my cancer coming back goes way way up!  So I will still go in for the RADS simulation tomorrow.  But I won't get the RADS till we get those test answers, as I may not be getting RADS if positive.  So more waiting & am probably just gonna sit in on next months RADS group.  It's all a crap shoot!  Don't know whether I'm coming or going these days!  Thanks for letting me pop in!

Lagata1276

Hi sweetpea, no fluttering here. I don't feel a thing, get zapped about 45 seconds each side of my boob. Nice that you get a personal quilt! I get a warm blanket that they "try" to keep on me, seems like it always slides off and both my boobs are showing. Sometimes I wish I could walk into the rad room and take off my top there and lie down with the blanket... Why bother putting a gown on?