Summer 2013 Rads

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  • Heart2930
    Heart2930 Member Posts: 139
    edited May 2013

    Pepper1973- I was also nervous about heart issues since I am doing left side radiation. I had read a recent article in the American Journal of Medicine that discussed just this issue and it had me pretty worked up. My RO and I discussed the article at length. One thing the article failed to mentioned is that it's data is based on radiation treatments from 20+ years ago. Nowadays we get much less radiation than they did in those days. But they still do all they can to try and keep clear of the heart. I am doing breath hold radiation. During my sim they measured my air volume and how long I can hold my breath. They took 80% of that volume and determined I can hold my breath for way longer than I need to for treatment. Everyday I use a snorkel type thing to monitor my breathing and I wear video glasses. On the glasses is a graph. When they tell me to I drawn in air until I hit he green line on the graph, and hold it for about 30 seconds. We do treatment from 2 angles so I have to do this twice. It is really easy, and has put my heart almost totally out of the radiation field.



    Lin43- they do offer at lot at my center, which is nice. I guess we take our perks where we can get them through this whole cancer thing huh? I am trying really hard to see this glass as half full. One big perk I have noticed is that I no longer have to wait for doctor's appointments. Before the big "C" if I wanted to see my PCP or OB/GYN it would sometimes take weeks to get an appointment. Now I always get seen the same day or next day. My DH thinks I am too negative (I see myself as a realist). So I am trying to find the positives with all we have to go through. No lines, no waiting at non-cancer related docs is a positive.:-) But acupuncture.....now I'm jealous!! I'll trade you some yoga or reiki for some acupuncture.

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  • ldesim
    ldesim Member Posts: 1,333
    edited May 2013

    Lots of new people! Hi!

    Lin43, we go into double digits tomorrow.... hoooray!!

    So far so good for me, no skin issues yet... 

    Pepper, a second opinion cannot hurt.. and I understand your frustration, my treatment changed too after the pathology... meet with the MO and get your answers for peace of mind.

    Sciencegal, some great info.. thanks for sharing.

    Heart, so sorry to hear about your pain.. I hope it gets resolved quickly!

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  • ldesim
    ldesim Member Posts: 1,333
    edited May 2013

    Double digits today, #10!! We're cruising now Lin43!   Have a good bit of redness today.. boo hoo.. no pain or irritation though.  I'm a little worried because tomorrow I get the bolus... hope everybody is doing good!

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  • TMM60
    TMM60 Member Posts: 190
    edited May 2013

    12/35 for me. Only tenderness at old lumpectomy and snb sites. Otherwise, all good and on cruise...

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  • ChickaD
    ChickaD Member Posts: 1,025
    edited May 2013

    Love cruising....I own my own CruiseOne travel agency....



    www.travelbydana.com



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  • Robin3
    Robin3 Member Posts: 145
    edited May 2013

    I hate to sound stupid. But can someone fill me in on what a bolus is? Should I be scared? :-)

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  • melody46
    melody46 Member Posts: 279
    edited May 2013

    yes plz what is Bolus?

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  • TMM60
    TMM60 Member Posts: 190
    edited May 2013

    I haven't heard that term, but I think it's the same thing as a "boost". A boost is a higher dose of the radiation aimed right at where the tumor was. In my case, the boost will be done at the end of my rad treatment (the last week) and will use electrons instead of the high energy X-rays that are being used for my first 30 treatments. I will have a second simulation for this as the angles will be different. The "big zap" as I like to call it. If those cancer cells aren't all already dead, they will be after the big zap!

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  • LakeGirl2
    LakeGirl2 Member Posts: 68
    edited May 2013

    My RO also told me not to buy anything - that she will provide creams, etc. I am also interested in the cough as a side effect - does anyone know if that is a short term or long term s.e? I developed a dry cough after my last chemo that I think has finally resolved after about 10 days. A little concerned about this with rads.

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  • Lin43
    Lin43 Member Posts: 108
    edited May 2013

    A bolus is a plastic/gel sheet that they tape down over your chest to draw the radiation closer to the skin's surface. I get the bolus every day--10 days now--and I have a little redness, heat, and tenderness/itching but so far no blistering. Maybe bolus is something that only ladies who had mastectomies get since we have so little tissue between our skin and ribs? Or maybe it depends on where our tumors were located. My RO would like to continue my daily bolus for all 30 treatments if she can. I am a bit scared about that! No, not a bit scared...a lot scared!!!! But meanwhile, I slather on the emu oil.

    Go idesim! It does feel good to have 10 down but I know what you mean about the red skin and the bolus fears! My RO is so sweet it will be hard to fight her if my skin starts falling off from this bolus treatment. I kind of wish she was louder and nastier instead of quietly vicious (jk, I think). You and I both started Herceptin the first week in December. We can celebrate the end of that once November is over....and hopefully the end of this beast forever!!! But then again, I'm thinking about doing reconstruction next April......

    Heart--I am with you. We have to take the perks wherever we get them. The acupuncture was pretty cool. I think I'll ask for it every infusion day. I get Reiki too but am not sure whether or not it helps. Your comment about being a realist hits home. We are tough and we will make it through this, but there is no sugar coating here. I am looking forward to the day when I don't wake up and go to sleep thinking about treatment and cancer. Arghhhh!!!

    Only two days left this week. The weekend is coming! 

    Gentle Hugs

    Linda 10/30 

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  • Heart2930
    Heart2930 Member Posts: 139
    edited May 2013

    After today 10 down for me too!!!! Only 20 to go, but the last 5 are boosts. 1/3 of the way done!!!Laughing

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  • melody46
    melody46 Member Posts: 279
    edited May 2013

    Is anyone experiencing pain in the breast or chest area being treated? I noticed yesterday I had some pain in my chest and my arm felt weird which worries me.

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  • Heart2930
    Heart2930 Member Posts: 139
    edited May 2013

    Hi Melody46,

    I am having pain. It is so sore that even if my arm brushes my breast it hurts. I see my RO today to talk about this. My arm is a little achy too.

    I am also having shooting pains that go through the breast into my arm. My RO said this is normal with radiation (on a prior visit).

    Hope this helps and you feel better!

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  • Lin43
    Lin43 Member Posts: 108
    edited May 2013

    Interested to see what the doctors say about the pain, Heart and melody. I still have some leftover chemo pain so it is hard to sort it all out. I hope whatever is inflamed calms down soon!

    Idesim--After tomorrow we will be 2 weeks and 2 days down...3 weeks and 3 days to go. Not too bad when I think of it that way though I now officially have some radiation dermatitis going on, according to my RO. That is her nice way of acknowledging that I am a bit red and itchy. Blasted bolus! Ya, I know it is doing me good long term but arghhhh!!!! 

    Happy (almost) weekend to everyone! 

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  • IamNancy
    IamNancy Member Posts: 1,158
    edited May 2013

    I have 12 down and 18 to go... some aches in my breast,  a little sore on my side but it really hasn't been bad so far.. hope it stays ok.. I wasn't allowed to use deodorant but after reading how many of you can use Tom's and because today was so hot and I knew I smelled awful, I bought me some Tom's - i just plan to use it after the treatment which for me is at 7:45 in the morning on my way to work. I usually follow doctors orders to the T but this is just too much Undecided

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  • TMM60
    TMM60 Member Posts: 190
    edited May 2013

    I find that the Tom's controls odor but not wetness. The formulation of Tom's that is an antiperspirant has aluminum in it that is a big no-no for rads. Be sure to show the Tom's you bought to your rad nurse to be sure it's OK. I got the Tom's that is labelled "long lasting, aluminum free deodorant, wild lavender" which was Ok to use.

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  • ldesim
    ldesim Member Posts: 1,333
    edited May 2013

    I have arm pain, wasn't sure if I had done something or if its from rads or what is going on.. I also have twitching in one of my eyes... again, I have no idea what is related to what anymore lol.  So far so good on the skin, a little itchiness here and there, but nothing too extreme.

    11/30 and two days off coming up!!!

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  • AnnieLane
    AnnieLane Member Posts: 856
    edited May 2013

    Hello, everyone. I'll start my treatments on Monday. I am stocked up with alcohol free Aloe Gelly, Aquaphor, Emu Oil, Tom's deodorant without aluminum, and talc-free cornstarch baby powder. I guess they'll also give me some kind of cream at the treatment center.

    Tomorrow I go for what I guess some of you have called a simulation, but at my center they call it a validation. Last week I had the CT scan and got tattoed and marked up.

    Next Friday I will also be having outpatient surgery to have my medi-port out; can't wait to get rid of that thing. Hopefully I can manage to get my radiation treatment that day too. When I had my medi-port put in, I worked half day afterward, so I don't anticipate any problem if we can work the scheduling out.

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  • rosalia56
    rosalia56 Member Posts: 3
    edited May 2013

    Anything on Canadian radiation protocol of 3 weeks?

    Anyone had this one? please let me know

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  • IamNancy
    IamNancy Member Posts: 1,158
    edited May 2013

    TMM60 - I made sure its the aluminum free one.. can't ask the nurse as they all (nurse, doctor and techs) say - no deodorant.. but it isn't them walking around stinking.. Surprised I do notice, I dont really sweat on that side now...

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  • TMM60
    TMM60 Member Posts: 190
    edited May 2013

    IamNancy- who would have thought we would have a 90+ heat wave here on East Coast in May?!

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  • Heart2930
    Heart2930 Member Posts: 139
    edited May 2013

    IamNancy & TMM60- Can you believe it. 90+ on the east coast in May. The humidity in NH is awful. BTW- Not super excited about the Tom's. I use it but I can't wait to be able to use my old deo/antiperspirant.

    Lin43- Saw my RO yesterday. He is concerned since I had a really bad post-op infection (it traveled the lymph nodes into my left arm and even my hand swelled). He said radiation can stir it up if there was anything left of it. So we are going to watch the pain. My left arm aches pretty bad too. He said that the radiation field covers most of my left shoulder since they want to get the breast tissue under the arm. He thinks the radiation may be aggravating the nerves in my left arm. As far as the shooting pains go...it was expected. Nerves are regenerating, and radiation can cause shooting pains anyways. So no worries on the shooting pains. Just watching the soreness and the left arm ache.

    Welcome AnnieLane!

    Doing the weekend dance!!! Two days of no radiation!!!!!Cool

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  • caitlin61
    caitlin61 Member Posts: 214
    edited May 2013

    Saw my new RO on Wednesday, had my simulation and will start treatment this coming Wednesday. Have the same left side concerns that many of you have expressed, but RO assured me that they wouldn't radiate the chest wall unless benefit outweighs risk. Think I've mentioned before that I wss born without a pectoral on that side, so my mastectomy scar aeems to be lying right on top of my ribs. He's talking about using the bolus technique, but every other day. Supposed to get 33 treatments, but might not get boosts, depending on what simulation showed.

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  • melody46
    melody46 Member Posts: 279
    edited May 2013

    My rads area is left breast also but RO assured me there would not be any involvement with the heart and only a slight chance it would nick the upper part of my lung.  Has anyone else been told that?

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  • Heart2930
    Heart2930 Member Posts: 139
    edited May 2013

    I was only told we would do what we could to keep my heart out of the field. Hence the breath hold. After the sim we talked about it again, and my RO said we were able to get my heart almost completely out of the field. We never talked about my lungs. Since it is my lungs expanding that is getting my heart out of the field, I guess I always assumed that my lungs are in the field.

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  • klaudiak
    klaudiak Member Posts: 25
    edited May 2013

    melody46, Yes  my RO told me the same, and showed me the grafics and I saw it, now I am felling more calm about it.

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited May 2013

    Hi everyone, I go for my sim on June 17 and start rads a couple of days after that. Feeling very nervous. I know I have to do it, even though I had the mastectomy, because my tunor was so huge and I had positive nodes before chemo, but I still am scared.

    Oddly this seems way scarier to me than chemo or the three surgeries I have had so far.

    Thanks for all your posts to let us know how it is going to be.

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  • Lin43
    Lin43 Member Posts: 108
    edited May 2013

    Welcome to the new radiation sisters. Together we can do it!!! Smile

    Heart--I hope that the two days off radiation allow your body to heal so your arm is better by Monday. Big yay for weekends!!!

    Nancy--Like a lot of the women on this board, my RO said Tom's or any other deodorant without aluminum is fine on the non-radiated side. My other side does seem to have dried up temporarily. We are over 100 here in AZ and it is bad enough feeling wet given that antiperspirants are banned, but I sure wouldn't want to try to get by with no deodorant at all. That would be inhumane. :/

    sciencegal--Radiation also creeps me out more than chemo did, though the red devil was a close second. There is something very creepy about red chemo and red pee.... I try to think of an angel wrapping her wings around me as I get zapped but it is still hard. When I get my weekly Herceptin infusions, I look at it dripping down and think "liquid gold". 

    Happy Weekend to ALL!!!!

    Linda 12/30

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  • Rhonda2
    Rhonda2 Member Posts: 133
    edited May 2013

    Hi Everyone,



    I'm new to this thread and starting rads June 10th. I will be getting 5 weeks of rads in the prone position and the last week a boost in the supine position. I feel better knowing that I will be in the prone position as medical case study shows it is better and less radiation to my lung. I had a lumpectomy on my right side so I'm not too worried about it hitting my heart. I have a friend that has burned from the radiation which does scare me, but my MO said the prone position is also better for my skin. I don't know what is offered in your area, but I'm glad my DH researched it so I could receive the best treatment. Prone position was not originally offered to me. It was only after we asked about it that I was referred to a place in my city that is trained and doing it this way for 3 years. In all of our cases, I pray that we are receiving the best care available and for our speedy recoveries!



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  • melody46
    melody46 Member Posts: 279
    edited June 2013

    I asked about rads in the prone position but I dont think the facility I'm at does it.

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