Winter 2015-16 RADS

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  • Brimton
    Brimton Member Posts: 87
    edited March 2016
    I hope everyone had a Happy Easter. It is the time of rebirth and we are getting reborn Cancer Free. VICKIERIDES that story seems scary to me. Anxiety about rads which we all have. I hpoe your dreams are more pleasant tonight. Something like a long ride in the country with the wind blowing in your hair. thanks SUNNYONE for the survey I will be interested in the results. Are we all so different like we think or is there a common thread. FINDAWAY that table did a number on my back too. It's metal and you have to lay there is a special position. I must tell you though it gets hbetter once your done and your getting close just a couple more weeks. Thinking of all of you as you begin your week. WARRIORS of life.
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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2016

    Warriors of Life....I like that!

    RO's nurse called to say they'd "look into" the fact that the techs told me the rays are hitting part of my stomach. She said no, but my stomach says yes!! Anti-nausea pills don't help....am I going to have problems later or will my stomach rebuild itself....?

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  • DurhamGirl
    DurhamGirl Member Posts: 100
    edited March 2016

    Hi everyone! I had my last two boosts on Friday and, finally today, I think my skin might have turned a corner. The very dark area under my armpit started peeling and is lighter pink underneath. The area outside the boost area, which hasn't been radiated since Monday, seems to be fading a bit too. I can finally wear a camisole without it really irritating my skin terribly. There is a light at the end of the tunnel.

    So I wonder...when do I get to say I "had" cancer, as opposed to "have" cancer? My doctors don't do any final scans or anything like that, so now that surgery with clear margins, chemo and radiation are all finished, can I say I "had" cancer? I know I will never be "done with cancer," as my 10-year-old likes to put it, but the end of all this treatment seems so unsatisfying and ambiguous. Anyone else struggle with this?

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  • Musosgirl
    Musosgirl Member Posts: 387
    edited March 2016
    Barbe1958, I posted this in the Triple Positive Group awhile back so I am just pasting it here. It may be even more different being rads induced, but maybe something will help.

    I found chemo-induced nausea to be different than my severe hyperemesis (vomiting) when pregnant. BUT, some of the tricks still applied. First and foremost, stay hydrated. At the first sign you start to feel like you can't do this or feel depressed--get to hospital and get fluids! That was a mantra on our hyperemesis boards. Being even slightly dehydrated worsens nausea/vomiting and a nasty cycle ensues. Secondly, stay on top of your anti-nausea medication, and don't worry about taking more than 1 or 2 meds either. Find your cocktail and use it! Eat what you can stand. Yes, ginger and lemon ease stomach ache, and carbs are easier to keep down, but ultimately whatever you find that you can keep down, eat it. Lastly, separate liquids and solids by at least 30 minutes. When I was pregnant I waited at LEAST an hour between drinking and eating, but didn't find it necessary to be that extreme during chemo. So unless chicken noodle soup is your go-to food, avoid soups.
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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2016

    Thanks, Muso, I'm going to pay attention to fluid today to see how I do. Strangely, I've been eating more vegetables than meat lately which is opposite to what I'd normally want. I guess the carbohydrates do help.

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  • KateB79
    KateB79 Member Posts: 747
    edited March 2016

    DurhamGirl, I switched to past tense a couple of months ago and am now referring to "having had cancer" vs. "having cancer" 100%. After I finished chemo (right before Thanksgiving), it still didn't feel past-tense to me. . . Even during rads, there were days when I felt like a cancer patient.

    Now that I'm done with active treatment, unless you count taking Tamoxifen for ? years, it's past-tense. And the mofo better stay that way.

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  • edwsmom
    edwsmom Member Posts: 346
    edited March 2016

    I arrived for my treatment this morning and was told that the server for the entire hospital is down so they can't do any treatments. I can wait to see if/when it comes back online. Geez. So I'm sitting here waiting for a little while, then I need to leave to get in to work. Probably will be missing treatment today and have to make it up at the end.

    In other news, my MO wants me to start Tamoxifen soon. She sent in the prescription and was going to consult with the RO on the timing of starting. I think she forgot that I take Wellbutrin. She previously told me that I can't take Wellbutrin and Tamoxifen at the same time (it makes the Tamoxifen ineffective). So I likely need to wean off the Wellbutrin before I start the Tamoxifen (not sure how long that will take to do).

    I'm pretty disappointed that I have to stop the Wellbutrin. I really think it helped me get through all of this.


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  • BellaV
    BellaV Member Posts: 27
    edited March 2016

    Durhamgirl, I struggle with the "have" vs "had" issue when thinking about cancer. Maybe because a gal at work just got diagnosed stage 4 -- just two years after finishing tamoxifen.

    People ask me if I am now cured or in remission. I don't know what to say. Maybe "for now" is a good answer

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  • KarenR0618
    KarenR0618 Member Posts: 78
    edited March 2016

    Today I got a call from the Radiaolgy Office. The computer system shut down and it wouldn't be up the rest of the day. No treatment today. As of now I have to make up 3 treatments at the end. So off to work I went. I sure hope that is it for makeups.


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  • edwsmom
    edwsmom Member Posts: 346
    edited March 2016

    KarenR - we must go to the same place. :)

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  • Lou53
    Lou53 Member Posts: 81
    edited March 2016

    Hi all,

    I have my last chemo this week and will be starting 30 rounds of radiation soon. I was wondering where you got the Miaderm cream. Did the doc give it to you or did you get it online?

    I am scheduled for breast, up to collar bone and under arm lymph nodes. I am a bit worried. Any tips or advice? Thanks in advance for any info! :)


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  • KarenR0618
    KarenR0618 Member Posts: 78
    edited March 2016

    edwsmom it sure looks like it. :-)

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  • Musosgirl
    Musosgirl Member Posts: 387
    edited March 2016
    Seems today is the day for technical difficulties. My machine is down today, and I was SO happy. I needed another day off. Was not mentally prepared to start up again this week. 11 more, just 11 more...

    Edwsmom, I have read Paxil interferes with Tamoxifen but my MO has not said a word about me switching, yet. I think Effexor is the go to med. He was so very careful to help protect my mental stability through chemo, I wonder if he is willing to try Tamoxifen with Paxil--I wonder what the risk will be. But PTSD is no joke and he has taken me very seriously and I appreciate that. But I am also willing to try Effexor. I do not currently have a psychiatrist to talk this through with--my PCP has taken over my meds after my last round with a psychiatrist ended me up on a psych floor. No desire to do THAT again!
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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2016

    I take Wellburtrin and was put on Arimidex. I just checked and there is no interaction. If anyone is post-menopausal, Arimidex could replace Tamoxifen, couldn't it?

    I found out today that I am getting 5,000 g's to my chest wall and 4,500 to my axilla/clavicle lymph nodes.

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  • Moondust
    Moondust Member Posts: 510
    edited March 2016

    Barbe, I think I had 5000 gY to my whole-breast, and will have 1000 to the tumor bed. I found out the boosts (staring tomorrow, yay!) will be electron beam.

    Lou53, the gift shop in my cancer center carries the Miaderm. But I think it is the same price online. I used two tubes.

    I haven't decided what to say about cancer. Right now I say I'm being treated for cancer so that it won't return. After I'm done with rads and chemo, maybe I'll say I had cancer and hope not to have it again. Or we could use the medical terminology - NED - no evidence of disease.



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  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited March 2016

    once I was declared NED in December after my surgery, I started saying "had cancer." Although, I'm not above saying "have" and playing the cancer card if needed!

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  • Musosgirl
    Musosgirl Member Posts: 387
    edited March 2016
    Barbe1958, that is my understanding. I am WAY pre-menopausal. Apparently chemopause just pissed off my ovaries and they came back quickly, and with a vengence. My MO does not want to do an ooph at this point, but he is planning on ovarian suppression in addition to hormone suppression. So my options, as I understand them, are switch to Effexor, have an ooph, or "wing it" on Tamoxifen with Paxil. He keeps pushing the talk down the road but I finish rads in three weeks so it's time to face the music...
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  • MissV123
    MissV123 Member Posts: 79
    edited March 2016

    Lou53, I ordered the Miaderm thru Amazon, it came in 2 days.....I loved it.....

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  • 7of9
    7of9 Member Posts: 833
    edited March 2016

    Wow they weren't kidding when they told me symptoms / skin could keep showing up getting worse up to 7 = 10 days after.... I was looking mighty cooked then on day 11 I saw the new skin underneath starting to show through and it looks fantastic! I don't know if I can look at this like a really overdone chemical peel...NOT, but I think this will be ok. Still using damn greasy Aquaphor but mixing with a little neosporin as directed where peel/burn area looks little intense but healing up faster. Now I'd better get with my physical therapy and yoga or my physical therapist will have my butt. Too bad I have to do chemo now :( but it's the last of the three step...surgery, rads then chemo. 2/3rds done with this crap. Happy healing to all!

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  • 7of9
    7of9 Member Posts: 833
    edited March 2016

    Hi Bella V....we have similar diagnosis though mine was recurrence. I keep thinking have though doctors say had. Going to try to keep my hair during chemo with cold caps and I find out if 4 rounds Taxotere or 6 of Xeloda this week. It took a good 6 - 9 months to put it in the rearview mirror and another year to have days I'd "forget" "c" for most of the day...screw it. I went out and bought furniture this weekend after confirming what we are getting back on our tax return. I feel better already!!!! :)

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  • Brimton
    Brimton Member Posts: 87
    edited March 2016

    image

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  • Moondust
    Moondust Member Posts: 510
    edited March 2016

    Looking good, Brimton!!

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  • Brimton
    Brimton Member Posts: 87
    edited March 2016

    two weeks out tomorrow from boosts three from reg radsThere is hope you all hang. In there. This spot was where all the skin looked like a big blister had peeled off. It's still Frankensteinish hair on upper part none on most.


    Question going to RO do you all have who have finished have any questions for her? They have told me to use lotion without perfume. I read I should be taught how to do my breast exam. Anything else?? Thank you

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  • justmaximom15
    justmaximom15 Member Posts: 264
    edited March 2016

    Last week before leaving a little spring break vacay with my son, I had my RO follow up. Got a call that he was unable to be in the office and did I mind seeing his associate. I was fine with that. She said everything looks great but she really talked to me a lot about eating healthier and losing weight. At first, I thought she was being too blunt for someone I'd never met before then I realized that I really needed to hear what she was saying. I can't say that I've rushed out and changed all my ways but have started some small changes. Hope it works.

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  • KateB79
    KateB79 Member Posts: 747
    edited March 2016

    Brimton, that looks so much better! Congratulations!

    The body is an amazing thing.

    Do tell us more about these new breast exams we're supposed to be doing, yeah? I had a BMX, so my guess is "feel around and don't worry if you feel your ribs in there."

    Justmaximom, that sounds like tough love to me. And it all starts with small changes.

    Tamoxifen is weird. Just thought I'd put that out there for everyone. :)

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  • VickiRides
    VickiRides Member Posts: 211
    edited March 2016

    Brimton, that looks great. You give me hope.

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  • Peabrain
    Peabrain Member Posts: 268
    edited March 2016

    Someone asked me the other day about my hair and ended up asking me if I was cancer free. It was the first time I said yes, I am cancer free. And I meant it. So I'm running with that!

    Four weeks out from rads and the ooph surgery. Everything is healing so much better, even my pec muscles from the BMX from way back in June are finally healing. And my neuropathy changed for the better, my thumbs are still tingly, but don't feel like they got squashed by a hammer anymore!

    My main complaints are continued chemo brain, hot flashes, difficulty sleeping, the usual. And I am developing tendonitis in my wrists and ankles. What's up with that? The doctors are all saying that's not related to chemo or rads or ooph, but we sure hope it gets better for you soon. Thanks, guys!

    Hugs to everyone! Happy Spring.


    image

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  • brithael
    brithael Member Posts: 224
    edited March 2016

    I just finished #11 of 31 and have small bumps on my upper chest which the RO says is from the radiation. Anybody have these?

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  • KarenR0618
    KarenR0618 Member Posts: 78
    edited March 2016

    Brithael, I have small bumps also. They are on the upper part of my chest also. The bumps do itch. I was going to ask them about it but for the last 2 days no treatment. I go to Medstar and the news say there was a computer hack. The office just say they computers are down. though.

    Peabrain nice picutre.

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  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited March 2016

    Muscosgirl- The cabbage leaves REALLY helped when my skin became like you are describing...hot and melting the lotions....sounds weird but def worth trying IMHO. Hugs!

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