Winter 2013-2014 Rads

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  • lesliecusana
    lesliecusana Member Posts: 97
    edited December 2013

    Hello All,

    I will be getting Rads in Jan. Have not met with RO yet! Met with MO today after recent surgeries and no other treatment needed but Rads! Yay!  Looking forward to sharing the experience with you all! Hope to it all goes smooth sailing for us all! I will also be supporting my mom during all this who  got dx recently she is stage 4 and currently going thru chemo now @ age 80! She is a trooper but is having a hard time with fatigue!

    Leslie

  • SallyS70
    SallyS70 Member Posts: 947
    edited December 2013


    70charger, it sounds like your first zap went smoothly ... good. Hope the weather is more cooperative tomorrow.


    rosecal954, we will be thinking of you tomorrow. Let us know how your first day goes.


    I am waiting impatiently for my simulation date. I have met my RO. He seems very nice. He wants to wait 6 weeks after surgery to start rads which would be Christmas day. With Christmas and New Year's Day kind of clumping together, I have a feeling that I won't be starting until early January. It scares me not to start as soon as possible. I have started my anastrozole.

  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2013


    Sally, I am in the same situation. Last chemo Nov. 29, will not get released to even make an appt. with radiologist until Dec. 18...doing the waiting game again...my oncologist will not let me start Arimidex or what you are taking until after rads...did you chose the generic or did your Dr.?

  • TeamKim
    TeamKim Member Posts: 568
    edited December 2013


    Glad to see our group growing -- Welcomr lesliecusana, Peacockgirl, Rosecal54 & Sally!


    Congrats 70Charger on zap #1! What do you have planned to celebrate when the last one is crossed off the calendar?


    Lovewins -- you might go to the main BCO website and see if the information page they have on BC and your Job gives you any new information. Is there any way you can negotiate a different schedule temporarily -- come in earlier, for example?

  • SallyS70
    SallyS70 Member Posts: 947
    edited December 2013


    Holeinone, my MO said the generic was fine. He also said I could wait until after rads or start right away. My RO also said it was okay to start the anastrozole before rads. Both said a lot of people wait until after rads.

  • 70charger
    70charger Member Posts: 963
    edited December 2013


    Team Kim I really want to go somewhere. We having been saving for about 3 yrs to go to Mexico for a month supposedly this winter . Then this bc hit. But am leary to go anywhere for any length of time cuz it takes so dang long to get rid of all these side effects. Not to mention lymphedema from flying or hot climate. So I really don't know what or when to do it. But I do know I deserve it after all of this!

  • TeamKim
    TeamKim Member Posts: 568
    edited December 2013


    Lovewins, here is a website which might give you some info: www.cancerandcareers.org


    70charger, I hear you about the vacation. I am trying to save up some money to rent a beach house for a few days this summer. It won't be far away, just in case traveling is hard, but I want to carve out a week of cancer free time & to enjoy that with my family. With the costs of treatment, though, not sure I will get enough $ saved up. In the short term, I am planning to adopt a puppy once rads are over -- my beloved terrier passed nearly two years ago, and I have missed his unconditional love so much in this BC journey. Didn't seem fair to bring a new pup into our lives when I am so preoccupied with treatments....but looking through the local shelters and rescue groups adoptables has been one of my favorite activities in the chemo chair.

  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2013


    70charger...I am thinking the same thing. My SIL actually offered a condo in Palm Springs this week & next, before my next onc appt. I could not push myself to go. The fatigue is just never ending. I am only 10 days post chemo..I am home bound & then rads...we might take our kids ( young adults ) to Hawaii after rads. I think that would be super expensive but the whole family has had to weather this cancer nightmare...I also worry about flying. Have you gone to Mexico for that long before?

  • 70charger
    70charger Member Posts: 963
    edited December 2013


    Holeinone We have been to Puerto Vallarta area 4 times, 2weeks each time. We went to Mayan Riviera back in 2004 for 2 weeks. We never want to come home. 04 was our first all inclusive resort vacation. So beautiful there. Would go back in a heartbeat, but it is double the price of going to PV, unless you get a really good last minute seat sale. So we go the cheaper route to PV.

  • jpteacher1
    jpteacher1 Member Posts: 52
    edited December 2013

    I will be meeting with my radiologist in a couple of days to go over my plan.  I had my lumpectomy a week ago so I'm not sure how soon I will begin treatment.  I am thankful for this message board to help me with questions along the way.  I'm most concern because I live 28 miles away from the site where I will be having radiation and live in the snowbelt  area of West Michigan.  I am trying to convince my husband that we need to move into an extended stay facility during treatment, but six weeks is a rather expensive proposition.  Any suggestions on whether it would be a good idea?  I would hate the stress from worrying whether I would be able to get to my daily treatment. 

  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2013


    jpteacher, I live in S.Idaho, so I can relate to icy, scary roads. Radiation is obviously fast. I would think having someone that could go with you, & having studded snow tires would be a better option. It would be so inconvenient & like you said expensive to stay somewhere. Being that close to home I would stay home. If you are getting a foot of snow and lots of wind then maybe chose to get a room. Our roads are plowed constantly & my car has studded tires. My center is about 5 miles from home..


    I am also anxious to start...I hate all the waiting..it might be Jan. before we get going..arrrgg

  • DawnCT
    DawnCT Member Posts: 143
    edited December 2013


    Hi everyone.


    TeamKim- thanks for starting this thread. You were so helpful to me over on the oncoplastic reduction thread!


    Rosecal - I can completely relate to everything you have said. Out timing is similar so let's keep in touch!


    I am starting Rads on Monday (Dec16th) and am scheduled for 25 zaps. I had my simulation and tattoos already. It was all easy and getting the tattoos was nothing They are so tiny - I only have two and one I cannot even see. I am most nervous about this idea of receiving radiation. I know it won't hurt other than dry skin but it's a scary concept. I also worry about breast shrinkage. I had a breast reduction along with my second lumpectomy( due to unclear margins) because the surgeon said it would be disfiguring especially after radiation. I opted to get the breast reduced and have the other breast matched for symmetry. I am happy with the results and don't want it messed up by radiation!


    My hospital is just 5 minutes away and like everyone, it will only take a few minutes so that part won't be bad.


    I do not know what lotions/creams are recommended yet as I will meet with the nurse on Monday. My plastic surgeon did say to make sure that I moisturize during the process.


    I think I am going to be participating in a clinical trial where Herceptin is given before the 1st dose of radiation. My tissue was sent out to see if it was Her2+. If it is then I will be doing the trial.


    I hope I can be of help to everyone as I will be heading into radiation before some of you.

  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2013


    Team Kim & 70 charger...looks like the 3 of us are beach girls...I grew up in S. CA, nothing like walking on the beach to soothe the soul...


    DawnCT, they did not test your tissue for her when they did the lumpectomy?

  • lovewins
    lovewins Member Posts: 881
    edited December 2013

    thanks teamkim I checked out the website.  thanks for starting this thread.

  • DawnCT
    DawnCT Member Posts: 143
    edited December 2013


    Hi Holeinone -


    I'm a beach girl too! I was born and grew up in FL. :)


    They did not test my tissue at Lumpectomy because I have DCIS. The clinical trial is actually to test whether radiation is more effective ( a lower recurrence rate) in patients with HER+ DCIS. It is a phase 3 clinical trial so I guess they are optimistic.


    I hope you feel better soon. Hawaii sounds wonderful!

  • allebasi
    allebasi Member Posts: 81
    edited December 2013

    No fair, I'm from the Midwest. No beaches anywhere near me. Just cows, soybeans, and corn. Lol. I'm having 6 weeks of rads, so 30 zaps, I think.

  • TeamKim
    TeamKim Member Posts: 568
    edited December 2013


    Welcome jpteacher & DawnCT!


    I worry about you gals with the long daily commute in the snow and ice. I had a choice of one rads center at a large regional hospital about 8 miles away or one that is smaller, but half mile from my house. Chose the closer one because it will save me an hour in rush hour traffic. But give me the bumper-to-bumper any day over ice and slush!!

  • batcatlady19
    batcatlady19 Member Posts: 138
    edited December 2013


    Ah, I'm always on the cusp of these groups (maybe bec. I'm astrologically on the cusp; Aquarius/Pisces border ;-) -- I just finished my 1st week of rads, so I felt too late for the Fall Rads thread where everyone's finishing, but most ppl here haven't started. With chemo, I started the last week of August so didn't fit there but was a little early for the September thread. Oh well.


    Anyway, so far, rads are no big deal! Easy peasy. Especially compared to chemo (wouldn't wish that on my worst enemy). Treatments are fast & painless, everyone at the office is friendly, rad onc. isn't buddy-buddy like my chemo onc. was, but he's very detail-oriented & always asks if I have questions. I have a couple friends who went thru rads in the past year & they've warned me about possible SEs, so I feel pretty prepared. Hope everyone else has an easy time of it.

  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2013


    batcatlady, are you a stylist ? Love your photo icon ( are they called avators ?), I also started chemo late Aug., but did not know about BCO until Nov. I have really made up for lost time though. Talking my head off, holding the recliner down, hoping all the SE effects will go away.


    Just looked at your bio, we had our lumpectomy on the same day...ouch! Wished I was starting rads sooner, my cancer center is wonderful, BUT they are in no hurry to get things moving....keep us posted..

  • NoTime4This
    NoTime4This Member Posts: 21
    edited December 2013

    I'm on a similar timeline to batcatlady. Started Rads December 2nd, so today was my seventh. I had to do two simulations, which set me back a week. The first simulation was prone (on stomach), but after evaluating, the doc said my humerus was in the way and could get arthritis from Rads. So, the next week they did a sim with me on my back. Both sims were done in a CT machine that was a doughnut shape, not the actual radiation machine.

    They marked me with sharpie then put clear stickers over the marks. In the first sim, most of the marks were on my back. They said don't scrub, and the stickers should last all 30 treatments. Of course, when they changed my position for the second sim, they had to take the stickers off an make new marks on the front. Maybe this is why my doc doesn't like tattoos.

    The actual Rad machine at my cancer center has arms that twist and turn. One arm has a rectangular CT plate that robotically bends and slides forward and then the whole contraption moves in a complete circle around me. The CT plate then flips back before doing the actual radiation. My doctor remotely views the scan to make sure everything is in position before the techs proceed with radiation. It's a 3-D system, and the techs use laser beams to line things up. Sometimes the table jerks around a little for adjustments. There is a CT scan before each treatment with this machine.

    The radiation part of the machine then swivels and rotates into position. It's an arm with a big round plate with a large square glass lens in the middle. So, there is this glass layer. Then there are two flat solid metal plates that can be slid opened and closed behind the glass to block the beam. Then there is another layer behind the metal plates that are long rows of metal, teethlike things (sort of look like the metal teeth in a paper shredder) that individually slide to make different shapes for the beam to come through. It's all robotic. The whole thing reminds me of the Transformers cartoon. 

    They move the radiation lens/plate into one position angled below me for several seconds, then do another angled above me at about 45°. The only thing that moves while they are doing the actual radiation are the metal plates and "teeth" behind the glass. It makes a twangy whirring noise when it is zapping, sort of like a low pitched dial up internet connection. In the above position, it stops whirring, the lens rotates, then zaps some more.

    They have several changing rooms with lockers. I have to take things off to the waist then put on a short hospital gown. The whole process, including changing, takes about 20 minutes or less.

    My doctor sees his afternoon patients every Thursday right after treatment to see how things are going. He said he really doesn't care what kind of lotion as long as it's used no closer than four hours before treatment, but he recommends aloe or vitamin E. He recommends putting lotion on in the morning, after treatment and before bed. He said if you wear deodorant wet wipe it off in the changing room before treatment. His student doctor suggested Gold Bond with aloe and vitamin E. I take a shower an hour before my appointment and just don't use deodorant under that arm. 

    The tech said use lotion as often as possible outside the four hour limit. The tech said at some point it will probably be best to go without a bra. They don't expect me to see any radiation effects for another week or two, though. The only problem I've had was first using an aloe lotion that contained alcohol. I got very swollen. I thought I had 100% aloe. I finally found 100% aloe at Wal-Mart after trying three other stores. The pure aloe is sticky, so I may try the Gold Bond aloe/ vitamin E lotion if I can find it.

    My daughter's school was canceled for snow today. Winter weather is why I made my appointments for afternoon. They are really flexible about appointment times if something comes up. They said any days missed get added on to the end of treatment. There are three holidays the office is closed, so my last day as of now should be Jan 15.

    Sorry this is so long.


  • TeamKim
    TeamKim Member Posts: 568
    edited December 2013


    Batcat -- welcome -- no worries about being on the cusp!


    NoTime -- thanks for the detailed description -- really helps to demystify the process for me. I like the idea of the markings and stickers rather than tattoos! Keep us posted on how you do with SEs. Good tip on carefully reading the labels for no alcohol.

  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2013


    Notime4this, that was excellent, I have seen photos of the machine, but was not sure if all cancer centers had the exact same equipment. Great visual with the Transformer..lol...no wonder it is so expensive..


    Allebasi, I live in S. Idaho now....to be close to the ocean feels somehow primal to me...I live very close to the Snake River, so that is nice..

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2013


    NoTime: My dermatologist recommended CeraVe cream. It also comes in a lotion but the cream is thicker. It is available at my WalMart and at CVS. My MO has recommended Aquafor, which you can get most places.

  • rosecal954
    rosecal954 Member Posts: 79
    edited December 2013


    Thank you Notime4This for the information on the big machine; great timing since I am starting my treatments tomorrow morning. I hope the rest of your treatments fly by and go smoothly for you.

  • Oncearunneralwaysarunner
    Oncearunneralwaysarunner Member Posts: 252
    edited December 2013


    ooooh, so envious of the ladies who live close to the ocean. We have beaches in Ottawa but by the rivers and you can't use them for 6 months out of the year! That being said, I have the same concerns about snow storms and getting to treatment. I live only 14km from my treatment center so my concern is not the main roads but rather my street, we live on a crescent within a crescent. We are the last priority for the city's snow cleaning which has resulted in not being able to leave my driveway in bad storms.


    Notime4this - thanks for the great description. That was really helpful.


    I'll have to ask my RO about tattoos vs marker marks. I can see advantages of both and don't know what to choose. Is anyone planning in turning their radiation tattoos into something more elaborate when everything is said and done? It's something that has been percolating in my mind.

  • allebasi
    allebasi Member Posts: 81
    edited December 2013

    I've heard of people using coconut oil for their skin. Have any of you heard about/ experiencd it? The kind from the baking section. It's solid at room temp.

  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2013


    allebasi, never heard of using it, except for the stuff that is already in our sunscreen lotion. Smells yummy, reminds you of lazy days by the water, so I would give it a try.


    Oncearunner, something to think about, have no idea where my tattoos will be. ( Will I kinda know the general area, lol ) My lumpectomy incision is below my breast. Sounds like the tattoos are just a tiny mark. I might do something wild, out of character, after this nightmare winds down. Chemo was harsh.

  • SallyS70
    SallyS70 Member Posts: 947
    edited December 2013


    Oncearunner, when I heard tattoos, I thought maybe we would have a choice of marks. I was kind of excited. Then I heard that the tats were very, very tiny. I am 70; I will probably not turn my marks into something else, but I had fun thinking about the something.


    I am wondering if my 70 year old skin will respond differently to rads than the skin of younger women. I have not seen comments about that on the other rad threads.

  • allebasi
    allebasi Member Posts: 81
    edited December 2013

    Not sure if the age of the skin matters but I did ask my ro if fair skinned people who sunburn easily usually "burned" easier during radiation. He said he used to practice in Boston where there were a lot of dark skinned Italians and light skinned Irish. He said the skin color made no difference.

  • Moving-Forward
    Moving-Forward Member Posts: 11
    edited December 2013

    Hi all: I am new to this site and grateful I stumbled upon it.

    I began RT Monday December 9th. So far, so good! I finish up January 22nd for a total of 31 treatments. I am an active 42 yo that works FT and has a 7 year old at home that keeps me on my toes!

    I am curious to see when the fatigue and skin changes kick in, and to what degree.

    One tip I want to share is I found a great deoderant that works and is RT friendly. The brand is called Crystal and they have two lines for women- Crystal and Crystal Essence. I am using the Crystal Essence roll on, Lavendar and White Tea scent. I highly recommend.  In the US you can buy at Walgreens and CVS. It's available at other stores around the world and online at Amazon and Drugstore.com.

    Best of luck to everyone as we continue on our journeys. We can do this!!!

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