May 2012 radiation

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mckenna
mckenna Member Posts: 413
edited April 2017 in Radiation Therapy - Before, During, and After

anyone else starting radiation in may?

END OF RAD DATES:

SILVIAZARA: 6/7 Cool

JAN24: 6/12 Cool

JITTERSMOM: 6/12 Cool

BEACHBUM22: 6/14 Cool

MCKENNA: 6/18 Cool

ETHEIZE: 6/18 Cool

ANNIEM353: 6/22 Cool

BLINTHEDESERT: 6/25 Cool

ELAINE2TERVS: 6/25 Cool 

MOPSY: 6/26 Cool

JOANNE2012: 6/27 Cool

PATTY: 6/28 Cool

DIZZY: 6/29 Cool

SPOKANELLIE: 6/29 Cool

GOODIE: 7/2 Cool

RACHEL: 7/2 Cool

STLMOM: 7/9 Cool

AEM47: 7/12 Cool

SELIZABETH: 7/17 Cool

JNBG88: 7/11 Cool

NEENERS: 7/17 Cool

SUSANNAH 7/28 Cool

Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool  Cool 

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  • Dizzy215
    Dizzy215 Member Posts: 74
    edited April 2012

    Hi Mckenna. Looks like I will be. Just got my RO appt for May 7, so am guessing the treatment will start soon after. Can't wait to get it over with but I'm so happy I don't need chemo.

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  • mckenna
    mckenna Member Posts: 413
    edited April 2012

    May 7 was supposed to be my start date tom. Was supposed to be simulation. How many weeks do you have to have. I need 5 weeks

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  • Spokanellie
    Spokanellie Member Posts: 46
    edited May 2012

    Hi, McKenna and Dizzy. My first RO appointment is May 8, so I'm right behind you. Like you, Dizzy, I felt like a huge weight was lifted when my MO suggested strongly that chemo would be an unnecessary risk after an OctotypeDx score of 15. I didn't have any trouble agreeing with her after doing a ton of reading on these boards and elsewhere about the taxotere/cytoxin cocktail we had originally talked about.

    I don't know how long it'll take after the RO appointment to get measured, tatooed and simulated, so I don't know when I'm actually starting. Do either of you know any more? Heading to Houston for a long weekend to visit two sisters or I might've had the RO appointment earlier. Meanwhile I'm reading up about creams and such. I've bookmarked a couple on Amazon, but I'm not buying anything till I can talk to the RO - or more likely his nurse. Wink

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  • mckenna
    mckenna Member Posts: 413
    edited May 2012

    when i was supposed to have my simulation today, they said i would start on the 7th.  so i would say you start about a week after simulation?  but that is just a guess.  i really want to start asap as we have a vacation planned in in july and if i started on the 7th that would leave 6 weeks between end of rad and vaca.  if this infection doesn't clear up soon i don't know how far i will be pushed back and want time to heal before swimming in a chlorinated pool on vaca.  i have an 11 am appointment with surgeon to see what needs to be done about this infection.

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  • mckenna
    mckenna Member Posts: 413
    edited May 2012

    glad both of you do not need chemo. i have not even started investigating creams because my rad onc said that would be provided?  guess i need to do more research. 

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  • mckenna
    mckenna Member Posts: 413
    edited May 2012

    oops i see both of your RO appointments are your initial appointments.  my initial was 4/27.  just called to reschedule the simulation.  how were your cancers found?  are you married? single?  have children?

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited May 2012

    Hi ladies, can I join your group?  I've lurked on the March/April thread but since I had my first zap today I guess I am technically a May girl!

    Simulation and tattooing for me took about an hour.  I then waited a week for my plan to be put together.  Yesterday I went for pre-rads xrays and started today!  I just finished chemo on 3/22.  Sounds like I'm the only one who did chemo....be glad for that.

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  • mckenna
    mckenna Member Posts: 413
    edited May 2012

    hi kelloggs,

    sorry you had to have chemo too.  i am a little wierded out by the whole molding process.  did they give you any topical creams to use during radiation? how many weeks of radiation do you need.  sorry you have to be the first in our group to start but you will also be the first to finish. about how much time from arrival to departure did it take for your first zap :)

    i have two kiddos (7 & 11). am most worried about having a enough energy to keep up with all thier school, camps, extra curriculars etc. 

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited May 2012

    mckenna - Hello!  I haven't gotten any creams yet....but my MO talked about using Aquaphor.  Yesterday was #1 and it was pretty uneventful.  It took longer for me to undress than for treatment.  I got zapped for about 30 seconds each in 3 fields....so total of about 5 minutes on the table.  I have 28 regular zaps and 7 boosts for a total of 35! UGH!!

    I have children too (18 and 24) and the youngest is in her freshman year of college.  She will be home for the summer next week.  I got married last year 5 months before my diagnosis and have 2 stepkids (13 and 16) who are with us alot.  I work full time and did so all through chemo.  The fatigue was tough but I was able to manage.  I think rads will be easy compared to what I've already done!  I also started Tamoxifen yesterday.

    I don't advertise it in my signature but I am stage IV with lung mets found during my pre-chemo scans.  I had 6 rounds of TCH and my PET scan last month was clear! NED!!!!  I want everyone to know you can do this...and we can support each other through it all!

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  • schatzi14
    schatzi14 Member Posts: 1,647
    edited May 2012

    I just finished 16 rads and I found using GLAXAL BASIS 3 times a day saved me from any redness at all...I had no SEs at all...I realize that some have many more rads than that but I swear by Glaxal...can be bought at CostCo or any drugstore. Was $28 for a huge jar. The RO told me to continue using it for at least 2 weeks after rads were done. I did and it was amazing!

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  • CindyT
    CindyT Member Posts: 51
    edited May 2012

    I start my rads today.  I had the CT and tatoos last week.  I'm a little nervous but anxious to get it started and over with!

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  • mckenna
    mckenna Member Posts: 413
    edited May 2012

    kellogs,

    sorry to hear about stage 4 but so happy to hear the clear scans!!!  congrats.  i have an aunt who had bc in her early 40s and she had little to no side effects from rad or tamoxifen.  my med onc said not to start tam until 2 weeks post rad.

    welcome CindyT.  good luck today.  did you have chemo first?

    schatz, thanks for the recommendation, i wll be on the look out.

    i likely will start the 11th or 14th, i am sort of hoping for the 11th because that is a friday and memorial day falls in the time frame and there is no rad on that day so if i start on a monday, i will end on a monday and i would rather just end on a friday and be done :)

    hope everyon has a nice day

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  • schatzi14
    schatzi14 Member Posts: 1,647
    edited May 2012

    Honestly girls, of all the ladies that were sitting with me waiting for rads, just one older woman had any redness to speak of. The worst was having to go every day and hoping the machines didn't break down. There were 6 machines and at least one was being serviced or not working. It just takes minutes to get you in the right position and then the actual radiation just takes about 2 minutes. You aren't even aware anything was done, and off you go! Sometimes you may feel a little fatigued but that's it!!

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  • schatzi14
    schatzi14 Member Posts: 1,647
    edited May 2012

    Kelloggs...I did MONTHS of chemo before rads.

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited May 2012

    schatzi - I know what you mean about MONTHS. I started 12/8 and finished 3/22 but still have to go for Herceptin every 3 weeks until December.  UGH!  It's neverending!

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  • CindyT
    CindyT Member Posts: 51
    edited May 2012

    Mckenna, no thankfully I did not need chemo.  My Oncotype was a 4.  I did 6 months of Arimidex to shrink the mass so I could have a lumpectomy.  

     Thanks scahtzi14 for the good info! 

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  • schatzi14
    schatzi14 Member Posts: 1,647
    edited May 2012

    Kelloggs

    I started Sept 23...finished Feb 8th.

    Congrats on the NED :D

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  • schatzi14
    schatzi14 Member Posts: 1,647
    edited May 2012

    Cindy T

    That is the first time I heard of giving Arimidex before treatment. Each case is different so it's interesting to hear all the different options. Thank goodness for them.

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  • CindyT
    CindyT Member Posts: 51
    edited May 2012

    schatzi14

     My tumor started at about 4.8 cm and shrunk to less than 1 cm. at the time of surgery.   It was 100% ER+.  The surgeon could not guarantee that she could get it all out and I might still have had to have a MX.  But she was awesome and got it all out!  So now rads here I come!

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  • schatzi14
    schatzi14 Member Posts: 1,647
    edited May 2012

    Cindy T

    That's amazing!! Good for you...sounds like clear sailing from now on. Will you have to continue taking Arimidex for 5 years?? I am on my 3rd month of it. Did you have any SEs with it?

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  • etherize
    etherize Member Posts: 423
    edited May 2012

    Hi all,

    Can I join in? :-)  I had 3 1/2 months of chemo, finished Mar 29.  I got my rads CT scan and tats on Apr 19th and tomorrow is the dry run.  They may do an actual tx then, I guess it depends on their schedule.  I don't know how many tx I'll have, or if I'll get boosts -- they'll let me know tomorrow.  I'm really curious about the fatigue and how bad it will be (or not).

    Are any of you getting rads to the supraclavicular (collarbone) nodes?  I have 3 fields: breast, underarm and collarbone.  I'm kind of worried about lymphedema, since I've had 17 nodes removed already.

    Kelloggs, congrats on NED!!  That is so great! 

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited May 2012

    Welcome etherize and thank you!  I am having 3 fields also with supraclavicular nodes.  I had 9 nodes removed so I guess we can watch for lymphedema together!  I had tx #2 today...no big deal yet.

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  • mckenna
    mckenna Member Posts: 413
    edited May 2012

    etherize, welcome of course you can join in.

    i did not have to have any lymph nodes removed but i have to have total breast radiation not just localized to the cancer site because of my age (38).

    i was thrown into all of this about 42 days ago Surprised  i still feel like my head is spinning and don't know all the ins and outs of things.  reading some of your posts has me so lost.

     i am still worried i am going to get to RO tomorrow and they are going to say my surgeon is crazy there is now way i can start radiation any time soon due to this strange irritation/infection going on.

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  • CindyT
    CindyT Member Posts: 51
    edited May 2012

    Schtzi14

    Yes I will have to take it for 5 years.   The only SE's I am having are menopausal symptons, you know hot flashes, don't sleep well etc.  First treatment went just fine today.

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  • mckenna
    mckenna Member Posts: 413
    edited May 2012

    hope those that have started are still having uneventful experiences.

    they did not make a mold of my back?  did everyone else have this.  i declined the tattoos because i have a skin infection and i did not want anything else entering the skin no matter how small.  did anyone not have tattoos and have issues with the markings staying on?

    i am ver frustrated with no one seeming to listen to me or care that there is a human attached to the other end of their scheduling.  i have two kids that do not have a second parent and i work a full time job.  the nurse came in and said my rads would be at 8am, perfect, i can get the kids to school go to rads and only be semi late for work.  after simulation, they say, my first appt is on the 11th at 12:30 and after that 10 am.  that is not doable.  my car is 15 minutes from my office, the facility and parking and getting to the office is about 20 minutes from my car.  i would work for 45min to hour, have to leave and not be back for 2 hours.  i am so sick of not being listened to.  everyone seems to have thier own agenda and they just let me talk and then do what they want.  i called back and begged them to change it, they are working on it.  i sort of yelled at the nurse but she was just the last in a long line of people who are not listening to me. 

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  • dlsrzbb
    dlsrzbb Member Posts: 6
    edited May 2012

    I would like to join the group. I actually started Radiation on the 30th of April, but really, I feel like a May girl. I have only had 4 treatments, am on arimidex for almost a month and today when I went to the bathroom, I lost blood into the toilet. I have had a hysterectomy, and I just don't know. Where did it come from? I did have a bowel movement, not hard though, no strain. Is it normal? Should I call and ask Dr.?

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited May 2012

    dlsrzbb - I would definitely call your doctor to be safe

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  • dlsrzbb
    dlsrzbb Member Posts: 6
    edited May 2012

    Kelloggs

     Thanks. Called Dr. who found cancer, not in Nurse doesn't know, recommended I call Radiation Dr. He's not in receptionist recommended I call other Dr.  Oh well, Dr. will be in in the AM when I go for Rad and I will ask him then. Thank you for anwering me quickly. I was in process of getting ready for work and now I am shaking. Blood big deal. huh? I just feel like I do not know what is going on with my own body. Rant Rant Rant. Sorry. I am sure it is nothing.

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  • Kelloggs
    Kelloggs Member Posts: 965
    edited May 2012

    It may very well be nothing, but no sense taking chances. Did it just happen that once?  How much blood?  Did you try your PCP?

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  • mckenna
    mckenna Member Posts: 413
    edited May 2012
    rant away, i feel the same way about not having any control of my own body and it sucks.  i am sick of being thankful for stage 0 cancer.  at the end of the day i still have cancer, i still have to have a lot of radiation, i still have to take tamoxifin, i still have this undiagnosable infection that my stupid surgeon said was a bug bite, are you kidding me.  it has been a bad day, sorry for the rant, but i have not really every got emotional over this whole thing because i know i am lucky but i can't take much more, now the air in our van is out and our dryer broke.  Cry
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