Summer Rads 2014

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  • jbokland
    jbokland Member Posts: 890
    edited June 2014

    Rosie,

    I am also a ILC patient.  Did you have any discussion about genetic testing with your MO?   I will be following up on that today.

    Initially, when I asked about my risk of ovarian ca, he said I was not a candidate for a prophylactic oophorectomy......I'm not feeling too confident about that.  I am considering consulting with an GYN Oncologist.

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  • Rosiesride
    Rosiesride Member Posts: 513
    edited June 2014

    Jbokland....my gyno..not gyno onc...suggested BRCA test from the start of my diagnosis...when I asked my MO, he said I didn't fit the criteria to get it...didn't think it necessary?  So I went back to gyno and she said I can get the test and DO NOT PAY for anything...if they charged me she would talk to them...so my test was negative( Yey!)...she has taken care of me and watched my fibroids well before my dx...she is concerned with the effects of tamoxifen...I take all my docs input...then I try to decide what will be best for me...like we all do!  We are our best advocates and know our bodies...my docs are awesome but they can't possibly know everything about us!  It's our responsibility and it's scary...that's what I have learned through this journey...now I always get my reports and read through them.  For my kids too...I was never one to do that...always just took things in stride and did what docs said.

    I just finished chemo Monday, rads to start on June 23rd...

    My MO said to have gyno check my hormone levels...after rads in august...then when I meet with him he will see about what meds I will go on...I will have the conversation then and questions about prophylactic ooph. He knows I am concerned about bone loss as my mom had osteoporosis...he ordered a bone scan...

    I have been back and forth with maybe doing a hysterectomy for years, well before my bc due to fibroids...just didn't want to take parts out and chance the shifting of other parts and other problems!  Due to insurance I would like to decide and do it before end of year since it will be covered...isn't that sad that we also have to think about finances during this?? Another Christmas with medical crap... Ugggg.....let me know what you find out! Rosie

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  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    Rosie Congrats on your completion. YEAH!!!! 

    I honestly don't really know why they decided to change from an AL to the Tamoxifen. I was just glad they did. I don't know if I would have taken

    the other. To be honest. 

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  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    Rosie Congrats on your completion. YEAH!!!! 

    I honestly don't really know why they decided to change from an AL to the Tamoxifen. I was just glad they did. I don't know if I would have taken

    the other. To be honest. And from what my MO said yes, it does offer the same protection as the AL's just goes about it differently. AL's stop the production of estrogen wile Tamox blocks the absorption of estrogen in certain cells. That is why it doesn't have the osteo problems because estrogen is still being produced. At least that is my little pea brain understanding.

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited June 2014

    Rosie, I am taking a hair, skin and nails vitamin that has a lot of biotin in it.  Congrats on finishing chemo.  Sitting waiting to get called back for rads #4

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  • aff
    aff Member Posts: 279
    edited June 2014

    Congrats on finishing chemo Rosie!

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited June 2014

    just started rad today. Recognize some of you from other forums. I have a question..I had 3 small tattoos done (cleavage, underarm, and just below sternum) but then also all this permanent marker with x's, triangles, lines, circles that I have to keep on the whole time. The marker is on my chest, underarm, cleavage and upper stomach. They will highlight them when needed as they fade. I thought that was what the tattoos were for, to line up the machine and beams, but all this marker?! I didn't expect to have to keep this on the whole summer, I thought just for simulation and planning. Of course with the heat and sweating and hot flashes they will have to draw in me frequently I think.

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    Hi Lisa my marker was replaced with 3 more tattoo's.  So I have a total of 6 now.  They replaced them on my 3rd visit.  There's no way I could have kept all that on. Night sweats and hot flashes are just to crazy.  They use a laser to line me up.  

    I'm on treatment 12 of 33 so far so good!

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited June 2014

    Lisa, I have 5 tattoos now, two in cleavage area about 5 inches apart one on either side of chest bottom level of breast and just near edge of axilla, the added a fifth one on day of dry run upper mid breast. That one is so tiny they keep circling it and re-dotting it every few days. 

    We are getting good at this, undressed, positioned, zapped and dressed in about 15 minutes. I see the RO tomorrow for my first weekly visit.  Not putting anything on my skin yet. 

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  • JoTro
    JoTro Member Posts: 57
    edited June 2014


    Hi ladies, just checking in for summer rads,  I start on June 23rd.  It is winter over here now so I will be having the opposite of what you will as far as heat and being comfortable goes, but after completing chemo recently it all sounds really easy.

    I have to travel 4 hours to the nearest hospital that has radiation, chemo was done at my local hospital thankfully.  So my issues will probably be more about being away from my kids and partner, how they will cope and what I will do with my down time whilst so far away. 

    I am going to be using a film over my skin to help protect against any nasty SE's.  It has been used on trials here and found to be very effective.  My rads onc suggested it.  I don't think it is available anywhere else in the world, it's called mepitel film.

    http://www.ncbi.nlm.nih.gov/pubmed/24486117

    Jo

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited June 2014

    thanks joTro for the article. I'm all for prevention of problems rather than waiting and treating once they occur. This sounds like a great treatment without SE's. Do you know if you use one dressing for the whole treatment or how often will you change it? I found an online site that has it. (Medical mega) anyone want to check it out? Is it non adherent? I'm going to ask my RO next week. I just started rads today. You have to move away for the rad treatment..that's to bad.

    "78 patients undergoing radiation therapy for breast cancer took part in the trial. Each patient’s irradiated skin area was divided into two halves, with Mepitel Film used on one side and aqueous cream on the other. The study found that there were no cases of ulceration or severe skin reactions on the skin under Mepitel Film, whilst cream-treated skin developed these wounds in 26% of patients. In addition, the skin reactions that did develop under Mepitel Film were 92% less severe than in the cream-treated control group.

    Dr. Patries Herst, a senior lecturer at the Department of Radiation Therapy at the University of Otago and principal investigator for the trial, said:

    “I am absolutely delighted with the results! We finally have a product that really works; this is fantastic news for cancer patients.”

    Phil Cooper, President of Mölnlycke Health Care’s Wound Care Division, said:

    “The dermatological side effects associated with radiation therapy can be very severe. Not only do they cause physical suffering, but also impact the lives of patients, limiting the clothes they can wear and activities they can engage in.

    “By using a transparent, thin and pain-free dressing, patients can drastically improve their quality of life during and after treatment. I know I speak on behalf of all of my colleagues when I say that we are very proud to be involved in making that possible.”    

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  • Jodi040812
    Jodi040812 Member Posts: 383
    edited June 2014

    I have simulation tomorrow and start on Tuesday.  Is anyone here still have some cancer left?  I feel alone here because it seems everyone is cancer free heading in to rads.  I still have some nodes in chest wall.  Dr says doensn't matter but I am just looking for someone else who might be in same boat?  

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  • JoTro
    JoTro Member Posts: 57
    edited June 2014

    The film can be worn for about one week, its adherent but has a specially designed feature that makes it not lift skin when being removed.  I think I had something similar over my LX incision after surgery it was also water resistant.  They said they will organise the film for me.

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited June 2014

    Jody, I am also getting RT  to the internal mammary nodes, behind the chest wall just by the sternum.   They were enlarged on the MRI and hopefully any cancer cells in them were killed by the chemo but the RT will hopefully finished any stragglers.  Really no good way to Bx them without entering the chest cavity so it is usually not done and they are not routinely removed either. 

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  • AnnBR
    AnnBR Member Posts: 853
    edited June 2014

    I saw my RO for the first time today since starting treatments on Monday. She called up my images on the computer screen and explained how the treatment works. Fascinating. I am doing the deep breath treatment and she showed me how my heart dropped, away from the treated area. Since I am doing a combination of a fixed beam and rapidarc treatment, my brand new flap won't be compromised as much if I had a traditional treatment. I heard lots of good things today and I couldn't be more pleased.

    I also saw a nurse that will be accessing my skin each week. She gave me a list of products to use including Dove or Ivory soap, Aquaphor, pure 100% aloe vera and aluminum free deorderant. Off to the store!

    Hope everyone is doing well! Ann

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  • jbokland
    jbokland Member Posts: 890
    edited June 2014

    summer rads....here I come!

    image

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  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    WOO-HOO!!!!! Congrats!!!!

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  • Rosiesride
    Rosiesride Member Posts: 513
    edited June 2014

    WOOPWOOP!WOOHOO!! And YIIIPPPEEEE!!  It sure is a good feeling! My last one was Monday!  Still on cloud nine!!  Congrats! Rosie

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  • AnnBR
    AnnBR Member Posts: 853
    edited June 2014

    YAY! Great picture, thanks for sharing! 

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    So happy for you Jbok!!

    So ladies of summer that have already started... how are your rads going?

    I'm 12/33 as of today.  So far so good!

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  • anmarie63
    anmarie63 Member Posts: 2
    edited June 2014

    I had my last RAD last week. I used unscented Dove (bar) during my treatments. I also used cold pressed Castor Oil on the area the got the radiation. I had zero burning! Looks like I have a slight tan

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited June 2014

    Anmarie that's great!!! Congratulations on zero burning and being done!

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  • jhodro
    jhodro Member Posts: 240
    edited June 2014

    Huge congrats Jbokland!!!

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  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    Just came home from my 7th. Skin is doing good, so far. Getting some pain and swelling.

    Does anyone know how many grays/rads it takes to kill/damage cancer cells? I have been scouring the internet but can't find an actual answer. Anyone?

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  • ohiofan
    ohiofan Member Posts: 206
    edited June 2014


    Congratulations!! 

     

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  • ohiofan
    ohiofan Member Posts: 206
    edited June 2014

    rett,   I had my 7th, too.  Pink, but no burning.  I use Dove unscented body wash and Aquaphor which were recommended by my RO.


     

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  • jbokland
    jbokland Member Posts: 890
    edited June 2014

    I had to share!  The local BC foundation donated this bell to the chemo clinic ( a very mundane, factory like place) all of these friends showed up to surprise me.  We shook that place up!  3 loud rounds of hip hip hooray in the elevator!!!  

    image

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  • rettemich
    rettemich Member Posts: 369
    edited June 2014

    That is so Awesome!!!!!!

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  • ohiofan
    ohiofan Member Posts: 206
    edited June 2014


    Wonderful!

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  • ktfelder
    ktfelder Member Posts: 45
    edited June 2014

    Today was day 4. The first 2 days I was miserable due to my arms and hands throbbing. I am now taking Aleve beforehand and they are putting a blanket on my arms to help keep them from freezing, so the treatments are becoming bearable. But I am quickly discovering that I hate Aquaphor! I am supposed to put it on every night. In the morning, even after I shower, the whole area feels sticky. Yuck! 

    In the scheme of things, this is a small price to pay, and if this is the worse thing I have to endure, them I am truly lucky. It's just one of the MANY surprises that come with BC.

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