Summer Rads 2014

Options
1…1819212324…57

Comments

  • count_it_all_joy
    count_it_all_joy Member Posts: 130
    edited July 2014

    Thanks for the well wishes for finishing up.  Funny how it makes it more real to see "congrats on being DONE."  I made a joke with the techs on my last day that I might be smiling so big it would throw off my positioning - then I shocked myself by crying all the way through.  It's just been a long haul for me, with nearly constant neutropenia and the restrictions that come from that, several infections, having to get my port taken out and a new one put in, 3 hospitalizations, lots of IV problems, severe shortness of breath and a bunch of trips to ER for CT scans…  I thank God that radiation went so smoothly, I was just not up to more crises!

    Last bit of potential stress… I was filing away my paperwork the night before my last boost, and came across a letter from my insurance agency saying I was approved for a max of 8 boosts… and I was about to get #10 the next day.  I called the RO office and asked for them to get it straightened out, and when I came in that day, they still hadn't been able to get the last 2 approved.  But the techs explained to my RO what was going on, and he came over and said not to worry - if he couldn't get them to change their minds, he would just write it off.  Amazing how much that meant to me!

    For all you wonderful ladies just starting… I'll keep reading until I get to hear you say that you're finished.  I promise, it really will go fast! Especially if you've already been through chemo, this will seem so much shorter.  And this is a place where no detail is too small to share, no one will ever be bored or shocked by what you have to say, and every single woman understands the feelings you're having.  I'm way old school… my girls laugh at me for this… I don't do Facebook, don't text, don't blog… I like face to face… but without this forum, where would I find so many women who "get" this whole experience?  It's good to have a safe place!

    Mary

    · Share on FacebookShare on Twitter
  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited July 2014

    Jbok I had the zingers too! They're random little almost electric current hitting the area! I'm two days out and I've not had one in a couple of weeks now.  I think they're nerves or tissue changes in the breast.  My onco recommended aleve so after I started taking one daily they great diminished.  

    · Share on FacebookShare on Twitter
  • Sofiejo
    Sofiejo Member Posts: 11
    edited July 2014

    I just started radiation this week. My oncologist said I could begin taking the Tamoxifen after radiation was complete or anytime before if I would like.  Any thoughts? 

    · Share on FacebookShare on Twitter
  • tangandchris
    tangandchris Member Posts: 1,855
    edited July 2014

    Thanks for the feedback ya'll. I'm going in today for more mapping or a simulation...honestly not sure. They left a bunch of stickers on me and 2 of them came off, I hope that doesn't screw things up too much. I'm ready to get this going! I'm on short term leave from work and hope to have this finished by september when that ends.

    Chemo was hell, so this is supposed to be easier. Honestly though, not to sound negative, but if it could go wrong with me...it has. I am taking everything with a grain of salt this time. :)

    ((hugs))

    · Share on FacebookShare on Twitter
  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited July 2014

    Sofie I started tamoxifen the same day that I started radiation.  I figured that since mine was so hormone driven (100% ER &PR positive) that I wanted to get it in my body as soon as possible. 

    · Share on FacebookShare on Twitter
  • 3rdtimenow
    3rdtimenow Member Posts: 256
    edited July 2014

    To the first week club, so far so good here too. I saw a nutritionist yesterday. Here are her tips, to help us through rads. High in  lean protein, I am on 70 grams a day, but it goes by weight so it varies, very important for rebuilding skin,etc. 7 fruits and vegetables a day, several servings of whole grains, 3 or more of calcium. Limit sweets and white carbs. Discuss all vitamins with you RO some are contraindicated while on rads. Lots of water. Some tumeric is okay in your food, but no supplements and a couple of cups of green tea won't hurt. Also important don't gain or lose more than 5 lbs. while under treatment, because they might have to change your markings. Good luck with that, eating all that food. LOL, Best of luck to all, Stephanie

    · Share on FacebookShare on Twitter
  • Sofiejo
    Sofiejo Member Posts: 11
    edited July 2014

    Thank you! I will be talking to my RO on Monday, but was thinking, why what to get started. I am a teacher and was hoping to see how I react to the Tamoxifen before school starts. 

    · Share on FacebookShare on Twitter
  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited July 2014

    I had a few side effects the first two weeks Sofie and since then it's been pretty smooth except for night sweats. Tamoxifen from what I've read on these boards is weird though.  It depends on manufacture etc.  I currently take Teva brand.  I've heard Mylan is good too.  Watson seems to be the one that most people have lots of side effects with.  Just search the boards and you'll see! 

    · Share on FacebookShare on Twitter
  • rettemich
    rettemich Member Posts: 369
    edited July 2014

    count, Last Day WooHoo!!!!

    lyzzy, I had several meltdowns when I first started. I also started Tamox that month. I think it was the combination of the two. We all go through a lot physically, mentally, and emotionally. We reserve the right to meltdowns. A Reiki session sounds wonderful!!

    Keep the energy up walk if you can. I did a little until it started hitting 110. Yeah not doing that. LOL

    No pain during treatments, but I did have pain, however, that being said, I also had a reduction. My tissue was only about 6 out so I wasn't completely healed. The rads caused inflammation.  Which may now have turned into fat narcosis. And zingers I think are pretty common. Nerves trying to heal. From my understanding.

    Yes, I got a certificate and rang the bell (my family made me LOL)

    Healing energy being sent to all.

    · Share on FacebookShare on Twitter
  • aff
    aff Member Posts: 279
    edited July 2014

    3rdtime - thanks for all the nutrition info. 

    #2 today - same routine...PT, rads, then 2.5 mile walk. So far so good. I was not nearly as anxious today. 

    Congrats to all that rang the bell this week! Can't wait to join you. 

    To all that have started this week - we got this!

    · Share on FacebookShare on Twitter
  • Rosiesride
    Rosiesride Member Posts: 513
    edited July 2014

    izzysmom...I was prescribed radial lex ex gel and it seems to ease the burn and itch..ice packs help too!

    We do have a lot in common....I was walking my beach last summer and passed my chair and could not find my spot!!  I ended up going on the street and asking an "islander" where a certain road was...I finally got my bearings and found my chair!! Kind of scary....talk about a senior moment at 53 years old...lol!

    · Share on FacebookShare on Twitter
  • jbokland
    jbokland Member Posts: 890
    edited July 2014

    Saw my MO today for my 5 week PFC visit!  All is well!  I asked for am ultrasound off leg up see if something is causing foot swelling.   Otherwise going great 

    He said no tamoxifen until AFTER rad.  He said it increase radiation dermatitis and said it's better to wait and not risk additional skin issues. 

    · Share on FacebookShare on Twitter
  • tangandchris
    tangandchris Member Posts: 1,855
    edited July 2014


    Finished mapping today and start rads Monday. They said mine will take longer than others, so I'm scheduled for the last of the day. Kind of stinks because I'll be dealing with traffic. no sure what that meant that mine will take longer, I will ask more about this Monday. The mapping and picture taking made me realize that I'm more nervous about this than I realized.

    ((hugs))

    · Share on FacebookShare on Twitter
  • aff
    aff Member Posts: 279
    edited July 2014

    I'll be starting Tamoxifen about half way through rads. My MO said she does not start it with rads so she can isolate any side effects. It continues to amaze me how different all our doctors are. Jbokland - I will ask her thoughts on increasing the chance of skin issues to see what her response is. Also, I have been instructed to use Aquaphor twice a day. Once after rads and again before bed.

    · Share on FacebookShare on Twitter
  • daisydoo100
    daisydoo100 Member Posts: 13
    edited July 2014

    My Ro told me the same thing about the tamoxifen and side effects during radiation, I also started this week however got a unexpected day off today because the machine was down, 4 down 29 to go 

    · Share on FacebookShare on Twitter
  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited July 2014

    It is funny how all the doctors have different ideas. My MO is waiting for rads to finish before starting me on an AI and the RO does not want me to use the aquaphor yet. 

    The nipple is looking very pink tonight but not a problem yet and its Friday yeah! Its been looking not exactly indented but I think it's trying to hide Lol! 

    Stephanie, the nurse from the health insurance called and also mentioned getting plenty of protein. My husband gets protein powder so today I started making smoothies again and adding some in. The smoothies need a lot of help as they contain Garden of Life Perfect Food (veggie superfoods).This gets really great reviews probably because it tastes and smells so bad it has to be good for you. I make them with almond milk and throw in some fruit. We do have quite a bit of lean chicken and turkey breast but will need to increase that too.

    Tangandchris, I hope your sessions are not too long.Good luck on Monday!   ((hugs back at ya))

    Rosie, My senior moments get more frequent. The office where I work (occasionally) is a maze of cubes. We have been there about 12 years but I still get lost. Its not just me though. People follow each other to meetings and hope the person at the front knows where they are going!

    Daisy, what is it with these machines? The one here broke twice this week..

    JB, the techs loved the idea of those toes!!

    Happy weekend everyone!

    · Share on FacebookShare on Twitter
  • 3rdtimenow
    3rdtimenow Member Posts: 256
    edited July 2014

    Iyzzismom, I don't know much about protein powder, but  check to see if it has A C and E vitamins, too many will effect the way the rads work, that's why my nutritionist said get it through food. These anti oxidants protect cells, but also will protect the cancer cells. Stephanie

    · Share on FacebookShare on Twitter
  • Cannoli1
    Cannoli1 Member Posts: 49
    edited July 2014


    One more radiation left on Monday, then, I am done. HappyUnderarm is very burnt, but getting better since this has not been in the boost area. Went back to work at the office part-time a couple of weeks ago; going back full-time Monday.

    · Share on FacebookShare on Twitter
  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited July 2014

    Stephanie, Thanks for the advice. I will give it a miss. I have only had it a couple of times since I started rads. Will go nibble on some chicken instead!! It seems like its easiest to go with the most natural foods. So many things seem to have extra vitamins added now.

    Cannoli, I bet you can't wait for Monday to be done. Do you get to ring a bell there? I have not heard any bell ringing where I go so I just googled "radiation bell ringing at Shields" and  Dr. Google just cracked me up with the following response "Martian Astronauts to use human waste as radiation shield", Talk about finding humor in odd situations!

    · Share on FacebookShare on Twitter
  • Rosiesride
    Rosiesride Member Posts: 513
    edited July 2014

    So, ANYONE, I have had only 13 out of 25 whole breast and the area looks almost purple in color...sort of a whole square of reddish purple and pretty itchy...my upper back right shoulder area as well ( exit radiation)...just really wonder if this is normal and how will 12 more whole breast effect it?  He already cut 3 treatments off due to redness after 11 rads...do boosts cause as much burn??  I just think it happened pretty early...I  am only using radiaplex rx gel and ice packs...I may also start aloe plant gel in between...ugggg!! I see RO  Monday ...Rosie

    · Share on FacebookShare on Twitter
  • Cannoli1
    Cannoli1 Member Posts: 49
    edited July 2014

    Rosiesride:

    My redness did not start until about session 18 or so, but I started out putting Fruit of the Earth 100% aloe vera gel on my skin as of day one. The only place that has gotten really bad is under my arm. I have had 4 out of 5 boosts, and I really have not noticed my boost area getting much worse. I have been putting both the aloe vera gel and Aquaphor under my arm, but I just think it needs time to heal now.

     

     


     

    · Share on FacebookShare on Twitter
  • Rosiesride
    Rosiesride Member Posts: 513
    edited July 2014

    cannoli...I am using the prescription 3x per day and I asked if I could also use aloe and he said just use the prescription...I have aloe plants and it helps a lot...I am using it too...I really like my RO but he isn't the one with a purple boob!  I don't see how aloe could interact with the cream...

    · Share on FacebookShare on Twitter
  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited July 2014

    lizzysmom- I had a discussion with my MO about when to start the AIs. He said some people think the AIs may slow the cancer cells so they are not as actively dividing radiation is not as effective. He did not believe that this is really of any significance. He also said because my tumor was "very worrisome" he wanted me on the AIs as soon as possible. I started them actually the day before my radiation.

    My poor nipple seems permanently  erect.  The whole areola area is also much darker than the other side.

    Cannoli1. Early congratulations on finishing up. My armpit is so numb the redness does not bother me. 

    Rosie - I have been lucky with the breast itself, very mild pinkness only and not putting anything on it, just the burned collar bone area. So far my 2 boosts do not seem to have caused any additional skin changes. I was told they were a different frequency of radiation that went deeper so maybe less skin reactions for this reason. Good luck. 

    · Share on FacebookShare on Twitter
  • rettemich
    rettemich Member Posts: 369
    edited July 2014

    lyzzy, Funny about your nipple, mine was always standing at attention and I kept telling it to run and hide. Now I'm just having some light peeling.

     I have some pretty blotchy patches that are very colorful.

    · Share on FacebookShare on Twitter
  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited July 2014

    Mine skin currently looks pretty healthy.  I'm certain I'll have more peeling but I have no redness.  

    Rosie you insist on something to minimize discomfort.  I used lidocaine jelly on all unopened areas and I had zero pain after using it.  What I found during rads was they were not as willing to help those that didn't speak up.  I spoke up and I think that's why I finally got help and relief! 

    What healed me was Miaplex and silvadene.  

    Ummmm on the nipple aerola issue, I look like an albino! I have zero color in the aerola and a bit of color to the nipple.  Thank goodness that area was numb because had I need able to feel it, I'm certain it would have hurt!

    · Share on FacebookShare on Twitter
  • peterandwendy
    peterandwendy Member Posts: 10
    edited July 2014

    I could not get my treatment on Friday, machine needed a part. So holding at 4/28, I have zero side effects from rads. or Tamoxifen, except for hot flashes at night. My energy level is fantastic, I hope I stay this way, I told my DH, he'll have to run to keep up with me in Disney World. I also have senior moments and I am only 50, which is worrisome, since I am working on two masters degrees. I find it necessary to use Google, because I have forgotten how to spell certain words and I forget where we are seated when DH and go out for dinner. However, life is starting to seem normal again, I'm enjoying reading again and no longer need twelve hours of sleep. Oh yea, I love my regrowing hair, it is so soft. You know, life is pretty good right now! 

    · Share on FacebookShare on Twitter
  • lyzzysmom
    lyzzysmom Member Posts: 654
    edited July 2014

    Rosie, You do need to try to get them to find something to help. We have both done 13 and I have been lucky so far. Very little itching. Is there anything else that could be making it worse like laundry detergent?  One thing that I have been doing is showering in the morning and not using the 4 hour rule. No  cream or deod. goes on between shower and rads even on the days when the appt. has changed to pm. The Elta and Toms goes on immediately in the changing room after and then again in the evening. 

    I feel really bad for you. My RO is on vacation next week but I will ask the one there why this would vary so much at this stage and what they would suggest.  I am wondering if the chemo can increase skin sensitivity.

    · Share on FacebookShare on Twitter
  • AnnBR
    AnnBR Member Posts: 853
    edited July 2014

    Yippee, I am DONE! I completed treatments yesterday and was a total mess. It began when I stepped into the treatment room and saw my team of therapists waiting for me with the biggest smiles on their faces. I'm emotional anyway, so I knew this would happen. I could feel the tears running down the side of my face as I was lying on the table. When finished, I got hugs and well wishes from the therapists who all said, 'we are going to miss you'. Before I rang the bell my husband helped me hold a banner which said 'I DID IT' and was signed by family members, friends, my medical team and people from Hope Lodge. I rang the bell three times and started crying again. My brother and his family recorded it using my ipad so I can show it to family & friends who were unable to be there. I continued to receive hugs all day long and shed many more tears but it was ALL GOOD.

    The radiation covered quite a large area since my cancer was a recurrence. My RO used a hy-brid type of treatment which consisted of fixed beam and rapid arc therapy along with the deep breath technique. I have some redness under my arm and in the middle of my chest so I've been using aquafor and silvadene which seem to be working quite well. Hopefully my shoulder will get better but my RO said it may take a few weeks or up to a month for it to heal.

    Congratulations to everyone who have completed treatments and best of luck to those of you who are just starting out. We are kicking cancer's butt!

    Ann

    · Share on FacebookShare on Twitter
  • aff
    aff Member Posts: 279
    edited July 2014

    Congratulations Ann!!!!

    · Share on FacebookShare on Twitter
  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited July 2014

    Yay Anne!!!!

    · Share on FacebookShare on Twitter

Categories