Summer 2012 RADS HANG OUT

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  • eric95us
    eric95us Member Posts: 2,845
    edited July 2012

    Slawson is 5 days PFC. Her blood work lab results are good enough that they can start the RADs early. She'll be getting marked up 31 July, get another CBC to make sure her blood labs are still OK, and the treatments start.



    We are lucky in that the treatment place is less than 1/2 mile from our house.



    I've been trying to get her to post, but she's been doing other stuff..mostly reading and studying subjects that interest her. She's feeling fine, but tired.



    Eric

  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Eric:  I am glad to hear Slawson is doing well and done with chemo.  Still waiting to hear on when my rads start...

  • tina_jason
    tina_jason Member Posts: 147
    edited July 2012

    How cool is it that we are all starting at the same time!  We're all in this together!!  My consult and marking took 1.5 hours.  I also got a facial identification picture taken and I was wondering if I should smile too.  I did!! 

     I bought Bag Balm, hydrocortisone and aluminum free deodorant.  Already had aloe on hand for my very pale skinned husband.  I usually don't sunburn so when my doctor told me this would be like the worst sunburn I've ever had I told him I had no idea what to expect since I've never had a bad sunburn. 

     I am supposed to start on Monday but I am thinking it may be postponed because in the past two days I have had more issues with my incision from my surgery 3 weeks ago.  For whatever reason it doesn't want to heal.  The surgical nurse I talked to today said my immune system is probably still compromised from chemo.  When the RO looked at it on Tuesday it looked really good but the next evening a small area opened back up again, and the next day another small area opened back up.  I am praying that there is no infection and that it closes before Monday.  If not, I will have to go on a round of antibiotics and that will set me back at least a week.  Ugh!!!  I just want this over with and I hate setbacks!

  • slak
    slak Member Posts: 179
    edited July 2012

    I just wanted to add, that I thought it would be like a sunburn too.  However, it really isn't like a sunburn to me.  The skin has lots of red dots rather than an overall pinkness.  Also, luckily mine doesn't bother me at all (doesn't hurt, doesn't itch, just a tiny bit tender) right now, but does look a little traumatized.  However, as I think I mentioned the RO said I had a milder reaction than most, so maybe it is more like a sunburn for some.  I'm done with the whole breast rads so the worst areas (not in the incision area) should begin to heal according to the RO.  I have no idea how the incision area will fair with 8 more boosts.  I'll keep you posted.

  • nofear2012
    nofear2012 Member Posts: 160
    edited July 2012

    Just finished chemo 7/18, have an appt w my RO this thurs & I am sure ill find out more then. I want to wait at least 4 weeks, B4 I start rads, my body needs time to heal - chemo was hell on me. The place I will be going is right down the road from where I work, so that will be a blessing.

  • slak
    slak Member Posts: 179
    edited July 2012

    So had the first boost today (after 22 whole breast rads).  They put an attachment on the machine for localized delivery.  They marked my skin with pen using a clear sheet that they had made during the mapping set-up several weeks ago.  The size of the area of treatment was about 2.5" x 3" with the incision being about in the middle (rough guess on size).  They do a fairly straight-on shot.  It worried me so I asked about my heart being in the field.  They said the energy of the boosts only allows the radiation to go 2 cm deep.  They did two pulses (several seconds each) and that's it.  I have 7 more to go and then am done.

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    Welcome nofear! I see my RO today. In fact, I have appts every day this week. RO, bone/CT scan, preop, mugga scan, and surgery to remove port. We still have to schedule more pre-rads appts too! It is like a 40 hour work week of medical appts.

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    Slak you are giving me hope.



    PS nofear i had a tough time my last two chemos. I am 4 weeks 4 days post. Feel good aside from my muscle pain and neuropathy which may take months

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited July 2012

    Update- My case will now go before the Tumor Board next week instead of tomorrow.  Apparently there are a lot of cases that need to be reviewed before mine ( surgery decisions/recommendations.)  I'm okay with that since I now have a little better understanding of the time frame I'm potentially looking at if I have rads.  The absolute earliest that I would even start the rads track with initally meeting with the RO would be 4 weeks after my last round of chemo.  My onco wants me recover from the chemo before I would even begin with rads, (if I have them) and Tamox.  Glad there isn't any great urgency so I will have time to recover.

    Slak- Thanks for telling us how the boost works and the depth of radiation.  Since I haven't had any meetings with an RO, it just helps me understand a little better how the process works.

    Stacie- Thanks for the continual update on where you are in the process.  Now I know there will be intermediate preparation steps before actually starting radiation.  That is relief.... hate being put on a fast track without giving my mind and body to catch up with each other.

  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    Melrose - take that time to heal and enjoy!

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited July 2012
    onvacation- You betcha!!!! Now that I have an idea how things may go, the idea of getting time to rest and recover sure does have sound kind of wonderful to me!!!!
  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    I agree - knowing a timeframe is always a good thing!  With so many unknowns for us right now it is good to know!

  • retrochick
    retrochick Member Posts: 3
    edited July 2012

    Has anybody noticed that they've been taking off weight since ending chemo? My last chemo was on June 4. I've lost over 5 pounds since then, even though I've been exercising less due to the heat. I'm trying to figure out if this is because of the radiation or whether I'm losing weight that the chemo was keeping on. My appetite has been okay, but I'm getting fuller quicker. Lord knows...I'm not complaining...just more curious than anything. I see my RO tomorrow and am going to ask him about it as well. 

    BTW, today I completed rad 18/33.  

  • slak
    slak Member Posts: 179
    edited July 2012

    I've lost 4 lbs, but still crave sweets like when I was on chemo.  I really haven't gotten back to exercising yet, so hopefully the rest that I gained on chemo will come off soon.

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited July 2012

    Hi, I am starting 6 weeks of rads the first week of September. I am finishing 12 weeks of light chemo on August 10th. Yay! After rads I have to have twelve more weekly chemos. Boo! I'm not very sick and haven't lost my hair on CMF so I know I'm lucky. Just very tired, both mentally and physically. I've seen some of you on other threads, too.



    Let's keep encouraging and praying for each other!

  • Dianefightslikeagirl
    Dianefightslikeagirl Member Posts: 51
    edited July 2012

    Oh I sure hope I lose weight! I gained about 10 due to the lovely steroids during chemo. Trying to exercise like crazy now.. Ugh.

  • kjiberty
    kjiberty Member Posts: 1,385
    edited July 2012

    Lost/gained.  I am about 5 lbs. lighter than when I started. However, today, I pigged out all day.  DOn't know if I will get on the scale tomorrow. BTW--Still haven't heard on whe rads will start.  I am calling them FIRST thing in the am.  They keep coming up with, "the 'plan is not done, yada, yada".  It should have been done by now.   

  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    Karen I haven't heard about rads either!  Though when I went last monday they said 7-10 days - so I guess they aren't LATE in calling me!  Hope you get a date tomorrow!

  • Raelan
    Raelan Member Posts: 200
    edited July 2012

    I'm getting about a 4 week break as well between chemo and rads.  Finished my last session on 7/12 and will start rads sometime the week of 8/6.  My mapping appt. is set for next Wednesday and they want me to start rads about a week later. I get my port out tomorrow.....yeah.  I'm looking forward to not having it as a constant reminder of my chemo days....and it's just flat out annoying.  

    I'm using this 4 week break to squeeze in some much needed vacation time with my family.  We rented a cabin for 4 days on a private lake. There are only 2 other cabins on this lake and we'll have our own private dock and a few row boats for fishing....I can't wait!  I have 10 year old twins (boy/girl) and I know they're going to have a blast.  After everything we've been through as a family the last 4 months it will be a really nice break for all of us. We're going next week, which puts me into 3 weeks PFC so I should be feeling pretty good by then.  

    I've also lost about 12 pounds since I was diagnosed, but some of that was due to my c-diff infection during my first infusion.  I'm actually hoping to lose a little bit more once all the steriods get out of my system.   

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    I lost 18 since dx.

    saw RO today 5 1/2 weeks of RADS. My mapping is Monday due to me getting my port out Friday. Otherwise the surgeons will erase the mapping to do surgery. Will start RADS w/in a few days after mapping.

  • tina_jason
    tina_jason Member Posts: 147
    edited July 2012

    I wish I lost weight after chemo.  I lost 12 during chemo but I have gained it all back.  Ugh!  I was to start rads today but have a setback from my lumpectomy.  My incision keeps opening back up and draining.  It was scabbed over last Tuesday and I was all set to start rads but it opened and drained the next day.  Over the weekend 2 more spots opened up.  I had a CT scan today and there is basically a pocket of air under the incision where everything drained out.  Right now my RO and my BS consulted (I actually heard them talking on the phone about me!!!) and decided to put me on an antibiotic (4th or 5th one since February!) and wait 2 weeks to see if it closes up on its own.  I'm supposed to keep the wound as dry as possible and let it get air when I can.  I can't start rads until it heals so this is another setback to my "getting better" timeline.  I am beyond frustrated and having a hard time fighting off depression.  When I am being treated my spirits are so much better because I feel like I am doing something.  These next 2 weeks will probably be the longest of the year.

    Stacie, my surgeon doesn't want to take my port out until after radiation.  Does this mean they feel confident you won't need it again?  Was this your choice?  I hate it and can't wait to get it out of there but for now they don't want to removed it until after my "all clear" PET scan.  Just curious what your doctors said.

    Raelan, enjoy your vacation.  I "squeezed" one in between treatments too and it was wonderful to lift my mood. 

  • Belinda977
    Belinda977 Member Posts: 381
    edited July 2012

    Tina, I feel your pain.  I have been dealing with an open incision for 6 weeks.  Mine is still open but it's not draining anymore.  They are trying to start my rads next week.  My would doctor had me take zinc to speed the healing.  Besure to stop a day or so before starting rads.  Hang in there!

    PS -- When I was first diagnosed was really upset and couldn't eat.  I am glad I am feeling better about things but I wish my appetitte would not have returned..LOL. 

  • ali68
    ali68 Member Posts: 1,383
    edited July 2012

    Hi to everyone I start rads on 1st August I'm also on August rads ( more friends the better)

  • ali68
    ali68 Member Posts: 1,383
    edited July 2012

    Question for anyone who had Lumpectomy - I had mine a month ago and today where they cut around the nipple on the dark part it has caved in. WTF !!!!!

    I am going to have tattoos tomorrow and will ask if they know.

  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited July 2012

    I had a lumpectomy in Feb. 2012.  Afterwards, it didn't look like they had taken out the 6m cyst from my left breast.  It's because the body filled that cavity with fluid.  My breast surgeon showed me the film of my bilateral MRI.  I was amazed at the size of the cavity and how my body just adjusted.  In a way, it helped me cope with the initial shock of having such a large mass removed (I'm a small gal to begin with).   I did not have a drain after my lumpectomy and probably if there had been one, I'm sure my left breast would have been significantly smaller. 

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    Tina I asked about my port and my MO said go get it removed anytime. He does operate under a "think positive" code. I lucked out I asked and got it scheduled right in between chemo and RADS. You can't get it removed once you are mapped cause the surgical team will clean the markings off.

  • onvacation
    onvacation Member Posts: 1,344
    edited July 2012

    Man I wish my MO thought that way- everytime I see him I ask WHEN can I get my port removed, he just says he is conservative.  I said the only reason i see to leave it in is my cancer is coming back, which it isn't so I want it out!  He says we will talk about it.  Well I am going to ask him in 3 weeks when I see him again.  See no reason to leave it in after I finish rads!

  • Stacie
    Stacie Member Posts: 607
    edited July 2012

    I am planning to go on with my life after RADS. Can't imagine getting in that mind frame with a chemo ready port. I figured if the worse happens I'd get another port. But I ain't planning on it...glad too about my doc. He is a real "live every day" kinda guy.

  • tina_jason
    tina_jason Member Posts: 147
    edited July 2012

    Belinda- its encouraging to know I'm not the only one with an open wound.  I'm tired of explaining the situation and having everyone offer their two cents on what I did wrong to cause this!!! Like I drove too soon or I didn't eat enough protein.  Ugh!  I also have a dent where the lump and breast tissue were removed.  The fluid drained and now there is a pocket of air inside and a dent on the outside.  Its not pretty to look at! 

     My new date for rads is August 9 assuming everything looks good to my surgeon.  I saw a small scab at the top of the opening tonight so that is a good sign.

    I won't see my MO until after rads are over.  I will ask him about my port then.  Right now my main goal is to get this wound closed!

    Ali68- it looks like my new timeline has me starting rads in August too.  Initially I thought it would be June!  Too many bumps in the road to make that happen.  So we should be close to the same timeline now.

  • Belinda977
    Belinda977 Member Posts: 381
    edited July 2012

    Tina, I agree.  I was swollen for so long that I really didn't have a sense as to what the outcome would be until about a month ago.  I can get it fixed later.  Hang in there!  

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