Summer Rads 2014

Options
24567…57

Comments

  • count_it_all_joy
    count_it_all_joy Member Posts: 130
    edited May 2014

    Hi all!  Welcome to all the ladies who joined up this week.  Best wishes as we all get started down this road.  Compared to chemo, it's a pretty short one, anyway!

    Rosie - I think my RO must be the only one saying limited sun exposure is not a problem.  He just does not want me to risk any sun burn.  So I've been outside some, always with the actual radiated area covered, and sunscreen on non-treated areas.  I hope I don't have regrets, but we're in AZ with 2 kids, so I tend to go ahead and do what I have permission for!  Some of the other ladies may tell you something very different.  

    Ann- thanks for sharing your story.  Praise the Lord, indeed, that your spot was found, and that the other tests are all negative… I had to laugh when you said you were "looking forward to it"!  You must be the only woman on this board to feel that way, but 6 weeks at a hotel with family and friends bopping in and out… that does sound rather fun!

    Barbara - ok, now I get it!  I was a little afraid you were saying that a cancer site had not changed at all after chemo.  That would be discouraging!  Your news sounds much, much better.  Congrats to you!

    So I'm doing it… going for the "don't do anything until I start to have problems" approach.  Two of the women on the spring board said they just minimized washing/touching the area, and made it though several weeks without a problem, and then started with the lotions regimen.  So, I have my products, but all I'm doing is keeping the area dry, occasionally moisturized, and wearing the men's undershirt with a front-close bra to reduce friction on the skin.  Consider me your "control" group!  

    Sunshine - did your RO give you an order to have your blood drawn, or did you go through your primary care dr?  I just quit having weekly draws last week (after 6 1/2 months of them), but now you've all got me curious about my Vit D levels.

    Night all!

    Mary

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

    Hi Mary! 

    My RO told me to go to my PCP and have a baseline thyroid function done and D level checked.  My D was really low and as I read across these boards a lot of us BC ladies have low levels. 

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

    @gramof2boys....Yey for being done with rads!  I meet with RO Thursday ...last chemo is June 2 and if all goes well I am hoping to start mid June...hoping as the sooner I start the sooner this is OVER...this part of the journey anyway!

    My question is about main side effects of rads. With chemo I was terrified of being nauseous most of the time...well that wasn't the case at all!  But the exhaustion was the thing..sooo tired about 8 days after....do rads make you totally exhausted?  Or manageably tired??  I just want to be able to do more things...living in a beach town when all my school buddies will be off I just want to have some fun! Each treatment left me with an uncertainty of how I will feel...is it more predictable with rads?  I know everyone is different...maybe I should ask on spring rads board too...thanks!

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

    Rosie I can only relay what I've been told. At 10-15 treatments is usually when side effects start up. Mine told me to stay well hydrated more than average and to walk and that would help with the fatigue.  I'm only on treatment 5 tomorrow so I haven't experienced any side effects yet.  

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

    hello sisters!

    I am on my last 2 taxol treatments and will begin Rad early July.....right after my wedding!

    I had a Bmx on Christmas Eve, 20 weeks of AC and taxol.  I have 700 cc in my left TE, and 800 in the radiation side. 

    I am a lousy stick too but want this port out.  It's in my jugular and quite distracting. My MO said it's ok, i can be positive and not look back.  However, I may miss it when I go back to the OR for the exchange when they are fishing in my wrist for a vein!

    I find myself pouring over these threads looking for people's experience with fatigue. I am tired of being tired and hope to hear of women who were not completely knocked down by the rad. 

    Has anyone researched or discussed the benefits of turmeric with their RO?

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

    Hi Jbok! I intend to discuss the tumeric with my RO on Tuesday when I see her.  It's such a good supplement and a lot of our fellow sisters do take it.  I'm not sure how it affects the radiation or the tamoxifen I'm on so I just need some reassurance before I start! 

    · Share on FacebookShare on Twitter
  • count_it_all_joy
    count_it_all_joy Member Posts: 130
    edited May 2014

    Rosie & jbokland - did you notice there were a few women on the Spring rads board who said they weren't really fatigued as they went through?  Gives me the possibility of the possibility to hope in!  Don't we do a lot of wait and see??  I do share your feelings, a fair amount of my energy has returned in the break between chemo and radiation, and it will be disappointing if it all goes again!  Today I'm signing my family up for a summer membership at a local gym. It's hard to exercise outside in Phnx heat, and I am hoping that walking and all will help.  We'll see!

    Sunshine - thanks, I'm going to ask for the same.  Why the thyroid, by the way?

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

    Mary I think she wanted to get a baseline of that because undoubtedly radiation can sometimes affect the thyroid.  I also did all the other stuff CBC, liver functioning, A1C just because I hadn't had it done.  I truly have had no test ordered by my surgeon or onc team other than the MRI of my breast before surgery and the ct scan of them before rads.  

    · Share on FacebookShare on Twitter
  • ohiofan
    ohiofan Member Posts: 206
    edited May 2014


    Sunshineinky,  I bought some Caltrate today and it only has 800 mg.  Don't think I will have to worry!  My bs also wants the D level checked.  I will look for the Zeasorb, too.  Thanks for responding!

    · Share on FacebookShare on Twitter
  • jhodro
    jhodro Member Posts: 240
    edited May 2014

    Hello all! I am half way through my chemo treatment (yay!) and wondering how I'll feel on radiation, so I figured I'd start following this discussion. I have my first RO appointment the week of July 22, so it's still a little bit out.

    Originally I was expecting to have a lumpectomy and radiation, but they didn't feel comfortable with the HER2+++ to not do chemo, so I'm in the middle of 4 rounds of taxol (3 weeks each). I'm also hoping the fatigue isn't terrible on rads. 

    Congrats to JBokland! Planning a wedding through all of this - - I can't even imagine!!

    Best of luck to all of you!!

    · Share on FacebookShare on Twitter
  • count_it_all_joy
    count_it_all_joy Member Posts: 130
    edited May 2014

    Welcome, jhodro!  Sorry to hear you couldn't escape the chemo after all, but the hard now can prevent the hard-er later.  That is what I keep reminding myself.   :)

    I enjoyed this 3-day weekend so much.  Even went ice skating for 2 hours with my girls today - had to quit a little early, my legs started shaking!  And almost forgot that I even have rads again in the morning.  It's nice to completely forget now and then.  Just a 4-day treatment week for us all.  Hoping starting out with the 3-day week, then the 4-day week, will delay any effects just a bit.  My sister is coming to visit in a week, and I'm realizing I have a good chance of still feeling pretty energetic.  Woo hoo!  

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

    It's back to treatment today! Had a great weekend celebrating my 3 year old grandsons birthday! I woke up yesterday and today with a horrible sore throat.  It's weird because it's only on one side so I'm hoping it's allergies.  

    I literally feel like I'm falling apart!!!! 

    Have a great day! 

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

    Sunshine,

    Did you get to discuss the turmeric with your RO?

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

    No Jbok I forgot to ask...my brain just wasn't functioning well today! Hopefully I'll be able to ask her tomorrow! 

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

    you will never have to apologize for a brain fart with this crew!  No worries!

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

    Ha!! I think my brain has diarrhea right now!!!

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


    haha! funny....right there with ya sista!

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

    I had my mapping and tattooing appointment today and I am ready for treatments to begin next week. Apparently there will be six weeks of rads instead of five. We had a tour of Hope Lodge which is where cancer patients undergoing treatment can stay for free. It's a beautiful facility and I will be well taken care of.

    Ann

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

    Ann we have a Hope Lodge here in Ky too.  My husbands cousin is currently staying there as he receives Chemo and Radiation to his face.   They are amazing facilities and his experience has only made me want to support them more! 

    Good luck with treatment! 

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

    so, sunshineinky...I notice in your signature you are on tamoxifen with radiation?  I was assuming I would start hormone therapy after chemo and radiation...I will add that to my list of questions for my RO tomorrow....I am 54 but was not in official menopause going into treatment ( had a full blown period feb 10 on my first infusion day!!)...I guess I will start on tamoxifen...I really hope I get more energy back after chemo...last one on Monday!,  hoping radiation is not as draining!  Being tired and muscle aches was probably my worst side effect of chemo...Rosie 

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

    Hey Rosie! Yes, lucky me I started both the same day.  I'm 100% ER and 100% PR positive so I think my team (MO & RO) felt it best to roll them both out at the same time.  I was totally ok with it too. I've had no issues yet with either.  I expect redness, fatigue etc.  with rads but my techs say that'll occur around the mid point of treatment.  I've been so inspired by the ladies on the spring rads thread.  Some have just done amazingly well with minimal side effects from the radiation. Do ask your RO, some it seems have different thoughts about starting two treatments at the same time.  I'm 45 and very premenopausal so I keep waiting for hot flashes to start! I had night sweats the last two nights but nothing major! 

    · Share on FacebookShare on Twitter
  • Deblc
    Deblc Member Posts: 479
    edited May 2014

    Hi everyone I am two weeks post chemo but still on herceptin. I am supposed to start radiation soon but encountered a problem I didn't anticipate. I went to get the simulation done today, but my arm/chest area  is STILL very tight after surgery and I couldn't get/keep it in the position they wanted without a lot of pain (both arms above my head). They say I need to do physio before I can do radiation to get my arm in this position and to be able to hold it there. Did anyone have a delay in treatment due to this? How long after chemo did you start radiation, I am a little worried about the delay.  Also the techs told me to put NOTHING on my skin unless/until I had a reaction  (no aloe, or lotions whatsoever), and not to bathe that area at all. I was very surprised at this, as from everything I've read, most people do put something on their skin after treatments.

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

    Ok, now you've got me thinking of questions regarding Tamoxifen.  I too was still menstruating like a champ right up until chemo. so I guess I was considered premenopausal.  Nothing since, but I swear I've had menstrual cramps a few times!  I've had a few hot flashes...I think.  Its weird because I do not sweat (never have) and was always a bit concerned to know what would happen during menopause. 

      I was assuming that Tamoxifen would start after Rads, but now I am not sure.

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

    I started chemo in Dec and that's when my cycle ended in Jan. I also have hot flashes daily but they are not terrible. They just last a few moments. Even though I have not had my period my body still thinks it's coming and reacts the same way it did before chemo...chocolate cravings, my face breaks out, some bloating, etc. It's very interesting.

    My surgery is next Fri, then rads. Tamoxifen will start after rads.

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

    I thought I would get a blood test to see if I am near menopause..hell, @ 54, you would think yeah!  Or if lack of period is chemo induced ....I think that would be important as to the drug prescribed...tamoxifen if pre menopausal but arimidex if in menopause....I think.  I will ask tomorrow...but doesn't MO prescribe those drugs? Too many doctors!!! Rosie

    · Share on FacebookShare on Twitter
  • lisa137
    lisa137 Member Posts: 569
    edited May 2014

    I had my 15th (of 30) treatment today, and so far as "fatigue" goes, I'm mostly just sleepy a lot. Nothing like the total body fatigue of chemo at all, just lots of urges to nap. I've been listening to my body and sleeping as much as I can, and drinking lots of water, and so far, so good. I also haven't even turned pink yet, really, which surprises me, since I'm very very fair skinned. I had a BMX with no reconstruction, am getting the IMRT type of radiation, and a bolus every day thus far. I'm using Aquafor, but not religiously because I tend to forget all about it. Some days I haven't used it at all. 

    If the second half of my radiation term isn't much worse than the first half was, I'll be very happy.

    All in all, it's more of an inconvenience than anything else, so far, and I feel silly for having dreaded it so much. Of course that could change and I could start to burn, but the FIRST half at least has been a breeze.

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

    Rosie the MO prescribes your hormonal therapy.  The RO just your radiation therapy.  I have 19 whole breast and 8 boost left! 

    Debic, I injured my shoulder about two months prior to being diagnosed.  I still cannot get it completely above my head.  My techs though to keep from delaying treatment have figured it out! I still need treatment for my shoulder.  My biggest fear is this will further injure it since I'm in a really weird position.  

    · Share on FacebookShare on Twitter
  • Deblc
    Deblc Member Posts: 479
    edited May 2014

    Sunshine, I wish the techs could've altered my position. I have a friend who has less range of motion than me and at her treatment centre they were able to accommodate her. There is only one treatment centre where I live, so I have no choice, and they were pretty adamant that I HAD to be able to do it a certain way.

    · Share on FacebookShare on Twitter
  • jhodro
    jhodro Member Posts: 240
    edited May 2014

    Lisa137: This is great news to hear! I'm looking forward to just getting it all over with!! Thanks for sharing.

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

    yes...like hearing some good news about SEs from rads  not being as "exhaustion induced " as chemo!!  I hope good things continue...we are almost done with this crazy ride!!! Woohoo! Rosie

    · Share on FacebookShare on Twitter

Categories