Summer Rads 2014

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  • rettemich
    rettemich Member Posts: 369
    edited August 2014

    Welcome to all the new sisters.

    Izzy, WooHoo you made it!!!!!!! Doing the Happy Dance!!

    Raidergirl, I used Domsboro soaks per my nurse, they felt Sooo Good.

    Nancy, an Integrative Oncologist is one that is a Medical Oncologist, that is also trained in the use of Complementary and Holistic medicine. My IO I believe, really saved me in a lot of ways. He really helped me in both mind and body. They look at treating the whole person, not just the cancer. Mine trained with Dr. Weil who is a founding father of Integrative Medicine, he has a center at Univ. of AZ. Just google him.

    Also I just wore sports bras that hooked in the front when I went out. I would use a cut up tee shirt to cover any areas that might get irritated from the bra rubbing. Otherwise at home it was usually just a tee shirt or tank. You RO or nurse will tell you what to use, usually they will give you a bottle of whatever they use. I am a firm believer in Aloe. But, it has to be no dye no color. Fruit of the Earth, or straight from the plant. I hated using Aquaphor, it's petroleum based and greasy. I did end up using it in a few sore spots. I used a emu. aloe, calendula lotion that I had. I still use it in fact I need more. LOL

    And ladies don't forget to Massage, massage, massage. This will help with the fibrosis. Good way to get the significant others involved.

    Rosie, what a way to get your mind off everything. I am so happy you are able to return to your classroom.

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited August 2014

    Yay Izzy!!! I hope you do something fun to celebrate! 

    Life's been normal busy for me! I had a sleep study last night and of course I slept rather well in their big cozy deluxe bed that was minus my snoring husband lol.  My MO said the best thing I can do is get restorative sleep.  I haven't slept well in YEARS! So I made the appointment.  The tech said I never entered the restorative sleep phase and there's no wonder I'm sleepy all the time! 

    Anyhow....it's Friday and for those still in rads happy two days off!!

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  • ncollett
    ncollett Member Posts: 862
    edited August 2014

    Izzy you bet I am a Big Colts Fan. I watched the game against NY last night. It was a good game and we have a lot to look forward to. I am a DD so I am worried that I wont be able to go without a bra, however I went to the Womens Center at the hospital today and got a couple of mastectomy bras and OMG what a BIG difference. They feel so much better then regular bra's. I couldnt believe the difference. I am still awaiting to hear when my next surgery will be so I can started on my Radiation. 

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  • CoastalXPat
    CoastalXPat Member Posts: 83
    edited August 2014

    IzzysMom and Kazzy - Congratulations!!!

    Raider, I would definitely go for a second opinion. It seems there can be a real balance between size and aggressiveness of the tumor which guides standard of care. And even then there can be gray area so you want to be sure you've got an MO who's up on all the latest studies. Hopefully the second opinion will concur with the first, but it might not. Btw I can certainly relate, I also really really really didn't want to do chemo but my HER2+++ made it a non-question.

    Lisaj, thanks for the link. Wow there are a lot of amazing ladies out there who have gone through what we have. We are so awesome!!

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  • vettegirl
    vettegirl Member Posts: 235
    edited August 2014

    Just finished number 14 of 33 today...19 to go.  Getting pink but nothing too horrible.  Putting aloe gel on nightly.  Tired but working full time too so havent really seen too much extra fatigue yet.  Will be sooo glad when this is over with. 

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  • Rosiesride
    Rosiesride Member Posts: 513
    edited August 2014

    lyzzysmom....woohoo!!!  Wednesday I am done too!!  

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited August 2014

    Yay Rosie!!! My last week of rads poked by! I finished on a wednesday too! Here's to hoping those last three days go by quickly! It's a freeing feeling to walk out of the rads center on that last day!

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  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited August 2014

    Rosie, Wednesday will be here before you know it!!!

    Have a happy weekend everyone!!

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  • 3rdtimenow
    3rdtimenow Member Posts: 256
    edited August 2014

    9 more to go, frustrating day for me machine broke down when I was on the table uncomfortable, as I had to lay still for awhile while they tried to fix it, scary. They let me get up and waited in the waiting room for awhile, and then started again. Will read more later, off to dinner with friends, I need it tonight. Best to all and welcome newcomers. Stephanie

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  • cybermab
    cybermab Member Posts: 25
    edited August 2014

    Just finished my course of 16 radiation treatments and two boosts. My skin is kind of a blotchy reddish brown, and there is more itching than anything else. Nipple and areola are much darker than normal, a dark purple brown color and exquisitely tender. Have been using Aquaphor and Udderly Smooth , as well as Solarcaine Aloe Vera with lidocaine. The lidocaine helps with the itching and tenderness. Just got some BurnJel which has more lidocaine and was recommended by my RO. I understand that things will get a bit worse before they get better, but I'm doing pretty well, other than an unusual (for me) need for naps. In 4-5 weeks, I start my Femara, which I am referring to as the devil drug, based on what others have to say about it. Hoping that I am one of the few who tolerates it without a lot of problems. Stay tuned...

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  • mripp
    mripp Member Posts: 106
    edited August 2014

    Check out thr thread "a rad onc weighs in on radiation burns" Very interesting!

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  • optimi
    optimi Member Posts: 67
    edited August 2014

    Hello everybody, I started my radiation last week and had a bit of a rough start. During the dry run on Monday my RO found a bump in the skin that turned out to be cancer upon biopsy. My surgery of bilateral mastectomy and DIEP reconstruction were only three months ago and thus you can imagine how shocked I was about this sudden recurrence of cancer. Fortunately PETscan did not show any spreading of cancer and I am hopeful that radiation with a little help of an oral chemotherapy drug will take care of what's left of the beast.

    Congrats to all of you who have finished or are close to finishing! I still have a long way to go but your posts and info are very encouraging. Besides, my husband who takes me to the hospital and I have been so surprised about how quick I am in and out of the rads sessions.

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited August 2014

    krazzy  you finished the hard part, rads should be much easier. 

    Lyzzsmom. Woo hoo.  All done now go live your life!,

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  • aff
    aff Member Posts: 279
    edited August 2014

    optimi - welcome! So happy for your good news on the PET. I will pray with you that rads and the new chemo drug takes care of it!

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited August 2014

    cyber an. Congrats on your finishing.   You got off with much fewer sessions then most of us. Maybe they were more concentrated.  Hope you heal up. 

    I am 3 1/2 weeks post RT and my nipple and areola are still darker then the other side but no longer black looking.  My bad burn at the collar bone area is just ever so pink now. 

    3rdtimenow nothing worse then a mechanical breakdown. Good they got it fixed and you did not miss a day. 

    Optimi. We will be rooting for you to get this "bump in the road" fixed. Are they doing or have done surgery on it?

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited August 2014

    Optimi I'm glad your observant RO found that bump! I'm sure you were disappointed but like Barbara said hopefully this course of treatment will get rid of all that! 

    3rdtime.... Those breakdowns can be so frustrating! I think it happens to most of us during treatment though.  

    Cyber I agree! That liodcaine gel was awesome! Just be careful to not rub it on an open place.  I accidently did that and it set me on fire! 

    I'm a month out from my last treatment.   You can hardly tell that anything has ever been done.  I've got just a couple of peeling spots left, nothing is swollen, there is no pain and my energy level most days is normal.  So there is light at the end of this tunnel.  

    Happy weekend to all, it's a rainy day here in KY so I'm going to clean carpets! 

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  • ncollett
    ncollett Member Posts: 862
    edited August 2014

    Optimi thank goodness your RO found the lump. Good luck with your treatments. I have not started mine yet. I had my lumpectomy July 30 and found out they didnt get clean margins so I have to back for more surgery. I am ready to get going on the rest of my treatment. God Bless everyone 

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  • Susug
    Susug Member Posts: 193
    edited August 2014

    Hello Optimi, if you don't mind I have a question. If you had a double mx don't they take all the tissues ? Where did they find the lump. 

    I finally have my RO consult app Monday ready to get this show on the road.

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  • Amelia123
    Amelia123 Member Posts: 96
    edited August 2014

    Iyzzy - that's fantastic! Congrats on finishing.

    Optimi - that must have been a shock, but thank goodness they were vigilant and noticed that bump. Hopefully it's all smooth sailing from here on out.

    aff - Our warm flashes sound almost identical. My first chemo was Dec 17, just a few days before yours.  Do you think you'll get your period again? My ONC couldn't answer that question. I noticed that you had chemo before surgery, whereas I had surgery then chemo. And yet we still started rads around the same time.  Funny how different doctors do different things, yet we all (hopefully) come out fine in the end.

    Welcome to all the new ladies. It does go by pretty quickly once you start rads.

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  • optimi
    optimi Member Posts: 67
    edited August 2014

    Thank you all for the kind words and warm welcome! I am so glad my oncologist called me last night itself to tell me the great news or else I would have been a wreck all weekend long lol.

    And like you ladies said, I am so grateful that RO found the bump in time. In fact she wasn't my RO but somebody filling in for my RO who was out on vacation last week. She was certainly godsend!

    ncollett, I am so sorry you need another surgery. But it's certainly better to get it fixed now rather than having to worry later. 

    Susug, I was initially diagnosed with IBC with skin involvement. During Mx, they removed all tissue and a lot of skin in affected breast. However, this sneaky beast came back in the little skin left in the same breast and RO found a little bump right underneath my new flap. Good luck to you for your appointment.

    Wishing everybody a restful and fun weekend!

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  • 3rdtimenow
    3rdtimenow Member Posts: 256
    edited August 2014

    Hi Optimi, I am there with you, I had a double mastectomy 2 years ago and am being treated for cancer again, so glad your doc found it so quickly. Susug, there is big misconception about risk after mastectomy, even the best surgeon can't get every last bit of tissue and there is always risk of something left behind. My RO explained that, last time I had the internal radiation (brackytherapy) and that does not treat the skin, so maybe there was some cells left behind in the skin. Stephanie

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  • 3rdtimenow
    3rdtimenow Member Posts: 256
    edited August 2014

    I appreciate all of you ladies so much, I am so bad at remembering all that is going on when I read these posts. I am going to do my best, first of all welcome, Optimi, and Ncolette, I also did not have clear margins after one of my surgeries and had to go back for 2nd. surgery, frustrating for sure,hope you get it taken care of soon so you can get on the road to good health. Sunshine and Crazy, thanks for the encouragement. Izzysmom, cybermab congrats on being done. For Aff and Rosie and the others close to my time table, we are getting there, yay us. For all of those, I have not named, if you are done congrats, now get on with your lives, for those starting treatment, hope it goes quickly for you. For anyone suffering emotionally or physically, you are in my prayers, or good thoughts if you prefer. Having been through this 3 times and gone through many of the treatments you have been through, I truly know what you are all going through, Chemo, radiation, many surgeries, including double mastectomy with immediate reconstruction, Tamoxifen, arimedex, every scan known to man, etc. not to mention all of the emotional turmoil that comes along with our diagnosis. If I can be of any help, please ask. I went through the first 2 times without reaching out to a support group and I am so glad I found all of you this time. Thanks, Stephanie

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  • Debster
    Debster Member Posts: 82
    edited August 2014

    Stephanie, I know what you mean I can read the posts and forget who wrote what by the time I get to the end. :-)  I am glad you are here with us and we are on the same days for rads so we can encourage each other. I come here and read all the posts everyday but don't post much. There are a lot of times I will start to post and then delete it for one reason or another.....

    I hope everyone has a great week end and gets plenty of rest and relaxation.

    Hugs to all

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  • mortmain
    mortmain Member Posts: 63
    edited August 2014

    I've been researching radiation options, and am glad of this thread. Seems like most all of you have had or will have External.

    After reading the ABPI Consensus Paper (on Internal Radiation), I find I fit in the 'suitable' category in every way except that I am just under age 60.

    If you had the option of Internal or External, what helped you decide one way or the other?

    A few questions to those of you who have had internal radiation: was age a factor in your Rad onc's decision to administer the Savi radiation? Are any of you younger than the 60 years minimum recommended by these guidelines? Was Internal suggested to you or did you request it? If you had the option of Internal or External, what helped you decide one way or the other?

    My Sim/CT is scheduled for next Thursday, and the more information I have on the subject the better. I also posted on the Savi radiation thread.

    Thank you all!

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  • Erinsoule
    Erinsoule Member Posts: 16
    edited August 2014


    I know this sounds silly to you gals, but what are "boosts"? Im starting RADS next week (Aug 21st) and my rad onco said she is doing higher dose but shorter time, about 4 weeks and a day she said, as long as my mapping appointment shows it will be doable, what does all that mean? Thanks :) Cancer sucks! 

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  • jbokland
    jbokland Member Posts: 890
    edited August 2014

    no silly questions!   Boosts are focused treatment to the tumor bed only...where the tumor was removed from. 

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  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited August 2014

    Cyber, Congrats on finishing rads too!! I expect to be put on one of those "devil" drugs by the end of the month after I see my MO. Not sure which my poison will be yet.Exercising and eating extra protein already and will start on Vitamin D, melatonin,  Black Cohosh supplement and Biotin for hair if the MO agrees.

    Optimi, Your replacement RO does indeed sound like a Godsend. It sounds like you have a good team. I'm glad you onc. was considerate enough to get your results to you quickly and not leave you worrying all  weekend!  Here's to the rads and chemo pill kicking a$$ once and for all!!

    Stephanie, Sorry the machine broke down, but glad you didn't have to miss a day. These machines do seem to breakdown a lot. I guess they must be so horrendously expensive that only a really large facility may have more than one.

    Sunshine, Its great to hear that everything has been healing so well and your energy is getting up there!                                     I am surprised my skin is settling down so quickly. The boosts gave most of it a weeks rest. The peeling is very superficial and the skin underneath seems ok. I put a ton of Eucerin cream on last night as the areola had gotten swollen, red and sore the last couple of days and it worked like magic. I was interested in your sleep test. Its so debilitating to never get a good nights sleep!  I have been wondering for a long time about asking but also have had the thought that I too may go out like a light if everything is so relaxing and conducive to sleep! Was also thinking that the melatonin may help a little provided they sell it in truckloads LOL!

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  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited August 2014

    Erin, My onc suggested asking the RO if it was possible to do rads over a shorter period; He mentioned something to to with a Canadian system that only took half the time. There was just so much to take in that I forgot to ask the RO and they decided on a typical number of sessions, 33 days. It sounds like the onc was suggesting something similar to what you will be having. 

    Mortmain, I have a friend in England who had internal radiation for BC 3 years ago but afraid I don't have details other than she would have been around 62 at the time.

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  • 3rdtimenow
    3rdtimenow Member Posts: 256
    edited August 2014

    Hi, Mortmain, I had internal beam radiation at 59 it seemed like a great, fairly new procedure, that would cut down treatments from every day for 6 weeks, to only 5 days. I went for it, I found it very uncomfortable, no painful really, had the device in for 7 days total. My RO said this time, that because it does not get the whole breast, maybe a few cells were left behind, so I'm sorry I did not do whole breast at that time. This being said everyone is different and each cancer unique, so do all of your homework and go with your gut. Best of luck, Stephanie

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  • jstundie
    jstundie Member Posts: 12
    edited August 2014

    Hello everyone!

    I've been a bit lazy on the board, but I've been pretty tired from the treatments. I will be done this Friday! I'm so excited. I'll only be getting boosts to the surgical site now. I'm red around my clavicle area, neck, back and my underarm has it the worst. My breast is red, but has more of a rash on it so my doctor gave me a prescription. The lotion seems to be helping.

    I was wondering how long does the fatigue last? I've heard anywhere from 1 week to 2 weeks after treatment. And how long does the redness last? I'm sure everyone heals differently (I have a very fair complexion). I didn't really start to turn red until this last week, and now it seems to be getting redder. Weird.

    Congratulations to all those that have finished their treatments! I'm so happy for you.

    Raidergirl, I too had a lower OncotypeDX (16) and I selected to opt out of chemo. After visiting with my MO I took a week to decide after going through my medical records and doing some research and went from there.  It's really a personal choice. You have to feel comfortable about YOUR treatment. Everyone is different and I believe it's important that everyone do what they feel is best for them. I'm happy with my decision and have decided that I can't control what the future may hold, but I can live life the best I can. I won't let cancer define who I am. You too will make the best decision for you!

    I've learned so much from this board. Each one of you are so special and I thank you for all your knowledge and all the help and encouragement you have given me. Shine on!

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