Summer 2015 Rads

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  • movingsoccermom
    movingsoccermom Member Posts: 225
    edited July 2015

    Darumama, my underarm also turned black. Turned out they were treating much farther into my armpit than I thought, and boy did that end up hurting. I am almost 3 weeks out and finally able to knit again, but still not able to wear my underwires. Sigh.

    4pink, so sorry for the change in plan. I also had a lumpectomy so can't help, but supporting you in spirit. It was a daily effort, but I just took it one day at a time. Took about two weeks after wbi, which was one week after boost for me to start feeling better, and things are still improving. Hang in there.

    Good luck everyone!

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  • april25
    april25 Member Posts: 772
    edited July 2015

    Hopeful82014 -- I have no idea if the proton/electron explanation is correct or what everyone is getting! My tech just explained it today... but I could have got it wrong, or it might just be the way they do it! I'm not sure at all! But I'm guessing it's pretty standard. Although I was wondering if all those commercials on tv about Proton treatment is the same or different???

    I'll be curious to know if you get a different treatment for a deeper tumor, too.

    I was sort of worried about them shooting stuff straight into me, so the explanation of the electrons stopping on the surface was reassuring!

    My tumor was not near the chest wall. It's kind of close to my areola, fairly close to the surface, but not right next to the skin... on the upper part of my breast... So treating the surface makes some sense. Oh, and they said they wanted to treat around the incision area. And the tech was trying not to fry my nipple, which was a bit alarming, but also good since she was trying to avoid that... geesh...!

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  • queenmomcat
    queenmomcat Member Posts: 3,039
    edited July 2015

    Movingsoccermom: couldn't knit? (cries in sympathy) But I'll make a point of asking Dr. RO that. He's at least aware I knit, because I was when he came in on our first visit.

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  • SweetHope
    SweetHope Member Posts: 439
    edited July 2015

    I HAVE HAD IT!!!

    Today was to be the celebration day: no more antibiotics, no more steroids, no more slash, poison, burn. Just a big, fat frozen marguerite to toast surviving all this crappy treatment since Nov 12, 2014.

    So I go to bed last night with my skin so sensitive in both armpits and boobs and across chest (exactly the path that lymph must flow to be eliminated out the kidneys). At 1 am I am weighing myself and I had put on 4 pounds of fluid.

    DH keeps saying "call the doctor". Well, which one? The BS who removed 29 lymph nodes assuring me a whopping case of lymphodema? The MO because chemo left me with bouts of edema about once a month? The RO because rads disrupted the flow of lymph even more. Or the LE Therapist who likes to remind me that insurance only covers so many sessions?

    So I took a diuretic (guess what I will be doing all day?) and I will postpone my big, fat marguerite 'til I can truly celebrate being finished with this hellish experience. Rant over.

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  • Peruna
    Peruna Member Posts: 16
    edited July 2015

    dearest @SweetHope, I truly feel for you. Given my complications and how I handled just the past 10 days, I urge you to take a deep breath and call your main oncologist for an immediate appt. My understanding is that the oncologist navigates, treats or refers all breast cancer related problems. Don't self-treat (and I'm the biggest self treater!). Your lymphatic issues must be seen and handled by the pros! I know I know no more energy to run between doctors...I get it...but you must. Please go see doc & let us know what happens. We'll have the margueritas here waiting for you. Hugs xo Perun

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  • sailorbev
    sailorbev Member Posts: 75
    edited July 2015

    Woah, SweetHope, that is SO disappointing and scary, too. I hope you get the help you need and hVe that margarita soon. Please keep us posted. 

    April24, thanks for the info about the boosts. I had no idea about the electrons/protons thing. I had one close surgical margin and will also get 8 boosts. The skin in my surgical area is getting quite pink and the area under my armpit is very dark. I am fortunate that it doesn't bother me. 

    Peruna-- thanks for the dosage info on the melatonin. I took 3 mg last night and slept very well. Yay!

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  • dragonista17
    dragonista17 Member Posts: 50
    edited July 2015

    april, i start my boosts tomorrow. They described the beams as you described but nobody mentioned anything about a bolus or copper or whatever. Guess I'll find out tomorrow. Sometimes I'd just rather not know/deal. Anyway, 5 more treatments to go. I thought this would seem like forever, and am surprised to find myself so far along.

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  • dragonista17
    dragonista17 Member Posts: 50
    edited July 2015

    Oh no:( How upsetting, and aggravating. I hope you can at least put in a call to your drs. It's beyond exhausting, but don't ignore this, not that that's possible.

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  • wpmoon
    wpmoon Member Posts: 270
    edited July 2015

    Summer camp is on a break for me today - the machine is down. And I was actually looking FORWARD to going today. It would've been 15/30.

    Underarm is dark and irritated, and getting little bumps all over my breast, I think from the Calendula. I've been itchy a lot, too, so finally bought hydrocortisone cream.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2015

    WPMoon - isn't it funny that some days we'd LOVE to have the machine go down but on the days it actually does, it's a real disappointment? I hope the cream helps the bumps and itchiness. I know calendula is supposed to be very healing but I'm pretty sure it's an irritant for some of us :(

    SweetHope - What a blow! I can almost feel your poor, swollen, irritated torso and that general sense of malaise. You're probably putting ice on your chest instead of icing that margarita. :( I hope by now you've reached someone and are getting some relief.

    With a very gentle hug - Julia

    24/35 - only 3 more whole breast and 8 boosts before my body can start to think about healing!

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  • april25
    april25 Member Posts: 772
    edited July 2015

    SweetHope -- These treatments are horrible, even if they fix the cancer. We mostly try to stay positive because the other choices aren't good, but we do need to face the bad as well. I totally understand you reaching the end of your rope with all this. I wish you the best at holding on and getting to the end of the worst of it and having that celebration. Sure, that isn't the end, but at least things will be looking up by then. Soon: a nice margharita (or however that's spelled!) coming your way!!!

    wpmoon -- I think some people get a reaction to Calendula. Or your skin could be reacting to something else in the various lotions, or the radiation... so hard to tell when so many weird things are happening to your poor skin! --I've been using calendula, but someone else was told that their people no longer recommended it due to some people getting reactions. My RO and techs never warned me anything might happen. But luckily, I haven't had a reaction so far.

    dragonista1 -- I didn't know anything about what the boosts were going to be like until I showed up for mine. That's when I got an explanation from the tech. It wasn't from my RO, so I hope the tech had it all correct! But she's been very friendly and helpful so far--always explaining things, the tech. Seems very trustworthy. Good luck with your boosts. It's pretty similar to the whole-breast treatments, really. Just set up slightly differently. Takes about the same amount of time because there's a bit more positioning going on, but quicker burst (or whatever you call the actual radiation part).

    They told me that aside from the area they are treating with the boosts (area of the tumor and incision), which will get redder and peel, the rest of the breast will now start healing up since it won't be getting more radiation there. That's a good thing, anyway.

    Got my 2nd of 8 boosts today. Area isn't noticeably redder yet. The rest of my breast isn't getting worse. We'll see how it goes!


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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    I asked my RO about boosts. She said it varies according to the person's treatment plan and there are several ways to do it.

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  • SweetHope
    SweetHope Member Posts: 439
    edited July 2015

    Thank you, sweet friends, for the kind words. I spent yesterday under three blankets running a fever again. BTW the outside heat index was 102. I have lost eight pounds of fluid in two days! You can't imagine how painful your skin is when you are full of lymph. I almost asked DH to take me to the ER, which I never would want to go to if I was in my right mind. The only reason I didn't go was because I would have to get out from beneath the blankets.

    I see the RO at 11 this morning. (My MO is unavailable til Friday.). And I see another certified LE Therapist tomorrow. My regular therapist is on vacation.

    I just hope I am taking the bullet for all of us, cause I wouldn't wish this on an enemy.

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  • dragonista17
    dragonista17 Member Posts: 50
    edited July 2015

    Had my first boost today. I'm getting photons now instead of electrons. No bolus, and a different set-up. No more body cast. It did take a bit longer to get me in position, but it also took a while when I first began treatment until they figured out the quickest way to work with me. I don't want to jinx things, but my skin has been holding up pretty well. I just use fresh aloe and cornstarch, and those Walmart camis:) Fatigue and dizziness have been my biggest problems. Four more treatments, then I guess we see.

    SweetHope - so glad you're seeing your doctor today. I'm so sorry you're dealing with this. I hope you find relief quickly.

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    SweetHope, you poor thing!

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  • 6doggies
    6doggies Member Posts: 96
    edited July 2015

    Hi Ladies, today was #2, but I'm confused about a couple of things and was going to ask the technician but she left and her helper wasn't sure. Is it standard procedure to keep the area that is getting the radiation covered? So far, they undo the gown, make an x, put the gown back over the breast and give me the radiation. When they are done with the radiation, they have also taken 2 x-rays both days, is that normal? I guess I just feel like the entire radiation process was not explained very well and since I have had different techs each time and they just get you in and out, with little to no chit chat.

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  • ksusan
    ksusan Member Posts: 4,505
    edited July 2015

    6doggies, my techs cover me back up after aligning me. I've told them they don't need to, but they do it (I assume as part of a humanizing/modesty protocol). Additional X-rays are taken periodically to be sure the machinery is still calibrated to your body--weight loss or weight gain, for example, can shift the calibration. I get X-rays every 5 days, and on the day after that I get quick confirmation X-rays for the new calibration (if one was needed).

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  • Metta
    Metta Member Posts: 84
    edited July 2015

    SweetHope, I'm so concerned and sorry for you. So it's truncal lymphedema or some kind of infection? With that fever, please let your husband take you to the ER! Please let us know what the doctor says today.

    Darn these doctors! I know this is irrational, but I get the feeling from my busy doctors that they just put us through this grueling treatment with no thought of our futures: the heart disease that radiation and chemotherapy can cause, the lung scarring from radiation, etc. The list is long and daunting. I get this sense from them that since we'd die without treatment, since we wouldn't have a future, we should just submit to this punishing regimen without complaint. Like "Well, you were stupid enough to get cancer in the first place." I just can't stand my doctors right now (even though my RO is a cancer survivor who has lymphedema--so I know she doesn't think this way). I am just sick of doctors and wish I never had to wait in their stupid waiting rooms ever again. Temper tantrum over.

    Yep, April25, that cough could be lung scarring (fibrosis) from radiation. I cough when I exercise now. I used to run four or five times a week, and I'm trying to get back to it. I started at the beginning of radiation and had no problems. Now, however, I can't catch my breath and start coughing. Something is definitely different about my breath. Maybe I'll ask my RO if I should just walk for now and let my lungs heal.

    6Doggies, I felt as bewildered as you at the beginning of radiation. Ask as many questions as you want--jolt those techs out of their robotic stupor! After a few days, I understood the routine and would count through the beeps. I had three different positions/angles. You will get to know your treatment in about a week, but in the meantime, ask questions until you feel more comfortable. They really should explain the process more than they do.

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  • 6doggies
    6doggies Member Posts: 96
    edited July 2015

    ksusan, thank you so much for the information! I was beginning to think that maybe something was wrong.

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  • Midgiemoon
    Midgiemoon Member Posts: 174
    edited July 2015

    Sweethope, I am sorry you are going through this. I hope your doctors had a solution for you.


    6doggies, my techs don't cover me, only my radiated size is exposed, though, I am on the table for less than 3 minutes each time. I think once you get the routine figured out you'll be in better shape.


    In my center, we have a beautifully painted ceiling, so once the techs line me up and leave, I take a deep breath, and say a prayer for them, and offer up gratitude that this kind of treatment is available so close to home. Before I know it, I'm done.

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  • Darumama
    Darumama Member Posts: 135
    edited July 2015

    Thank you everyone for your congratulations for finishing. This is such a wonderful community! No one else I know understands the excitement of finishing rads like you ladies do.

    Pboi- so far Lupron and Arimidex are going fine. I haven't really noticed any major SEs so far, although I have been dealing with hot flashes. Next week I'll get my second Lupron shot. I saw my gynecologist for my annual visit a couple weeks ago. Boy, did we have a lot of catching up to do! She told me that even though she couldn't give me hormones for hot flashes due to ER+, the antidepressant Effexor is supposed to help. It just so happens my MO gave me a script for these when I started chemo and I never took them. I guess if the flashes get bad enough I couldtry.

    6doggies - my RO did an X-ray once a week, but there were extra ones the first and second day to make sure things lined up according to the sim properly. My RO did actually tweak my treatment based on an X-ray about 1/3 way through. My techs were usually pretty good about covering me up after marking me. There was one day out of 28 when just the two male techs were there and they weren't as conscientious about it. I probably wouldn't have even noticed (because I have no shame anymore), but it had come up in conversation on this board earlier so I was more attuned to what they were doing.

    Sweethope- I sure hope you feel better soon! Just not fair for this to happen after you think you're done.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2015

    SweetHope, all I can say is that I hope by this point in the day you've seen an MD and have some clue as to what's going on and what they can do about it. This must be incredibly frustrating, as well as miserable and pretty concerning. (Or maybe you're too sick to be worried?). Sending lots of support and healing wishes.

    25 down, 10 to go as of today! My RO is really impressed with how well my skin is doing and assures me that all the odd effects WILL resolve (eventually) after treatment ends. I'm not looking forward to the boosts which start next week but I AM looking forward to the end of the WBI.

    Stay cool, everyone, and drink your water!!

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  • pboi
    pboi Member Posts: 663
    edited July 2015

    Sweethope...so sorry to hear this is happening to you. I hope you feel better soon.

    Darumama...So happy to hear you're doing well on those. I haven't noticed much on the Lupron yet (day 3), but nervous about about the Arimidex. I hope I do as well!!!

    PB

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  • movingsoccermom
    movingsoccermom Member Posts: 225
    edited July 2015

    Sweethope, echoing everyone's sympathy. I am so sorry you are experiencing such horrible symptoms. You will be in my thoughts.

    Hang in there everyone!

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  • InStitches
    InStitches Member Posts: 80
    edited July 2015

    SweetHope, I hope you are feeling better. Please let us know what the Dr said.


    I had treatment number 13, 20 more to go. So far so good. But...I am starting to get tired. I am working full time and have my radiation at 5:20, then I go home. I am getting to the gym 4 days a week in the early morning.

    inStitches

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  • april25
    april25 Member Posts: 772
    edited July 2015

    I got covered up during all my regular treatments. Even when they were checking the position, they'd only lift the sides of the robe to check on things.

    The boosts are different. I guess since the particles tend to not go through things??? Anyway, that side of me is left uncovered and the machine with the stencil-like block is inches or less away from my breast, pointing at an angle down towards the area.

    ------

    Tech said I probably wouldn't notice things getting red and peeling until maybe half-way or more through my 8 boosts. And it may continue a week or so after the end. So far things look much the same--red skin, but no blisters or peeling... Not looking forward to it, but as long as it will eventually heal up, I won't complain!

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2015

    InStitches - Good for you for keeping up your workouts even though radiation is catching up with you. Working full time AND working out AND commuting AND doing RT is a lot. I think the psychic tension of wondering just how your skin will react takes a toll, too. Hang in there and grab any extra shut eye that you can. Hug - Julia

    April, that's got to be odd having the machine so close to you after all the previous weeks of having it positioned differently. And just when you get used to it, you'll be done!

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  • Midgiemoon
    Midgiemoon Member Posts: 174
    edited July 2015

    In stitches,

    Today wi be 17/33 for me! I will be on the downhi side of this!!! I'd give anything to be able to go to my spin classes but my skin started blistering at TX 8!! My Ro said to try to avoid sweating, and since my chest and sternum are a mess, spin is out. I have been walking instead.


    You sound busy, listen to your body! I have a long commute, so I am working part time when I am up for the drive, and also from home. The biggest issue for me is dressing professionally for work. because of the blisters, I am bra less as much as possible. It doesn't work to well for work as a 38D...


    It will be over before we know it!


    Cheers,

    ~Midgie

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  • SweetHope
    SweetHope Member Posts: 439
    edited July 2015

    Thanks everyone for the concern and well wishes. I'm back on Levaquin (antibiotic) and perky this morning. It might just be because I am so furious, that I have the boost of energy to type what I think will be a long dissertation on yesterday.

    Me to RO: I have fever, elevated WBC, signs in blood of inflammation, and dry cough for over weeks now; and here are all the pills, syrups and inhalers I am on.

    RO: Well, it can't be from radiation.

    Me: Of course it can!

    RO: (No response, only a Cheshire Cat smile on his face.)

    RO: But you had IMRT. We didn't radiate the lung.

    Me: Of course you did! (Pointed out on the CT scan with overlay of radiation fields.). You still radiated the lung to avoid the heart. (I was told it was necessary to get the chest wall completely.)

    RO: (No response, only another Cheshire Cat smile.)

    UGH! We went round and round like that for ten minutes. He - denying. Me - calling him out on it. He - grinning!

    Then it got interesting. He listened to my lung. (Pneumonitis usually has no tell-tale sound and needs a CT scan to be seen sometimes; which is why I previously refused an X-ray). But he did hear some crackling in my other lung...the one I had the encapsulated pneumonia in when I was first dx with BC. So off I go to the hospital for some X-rays which turned out to be clear.

    So, I have no answers. But I am responding to the antibiotic - no fever this morning. RO wants me to return to Pulmunologist for follow up, but I have pretty much had it with doctors for now. I know I have to have a PET scan in my future about that right lung. But I can't have one now anyways, because of rads. So I'm resting, taking my pills, syrups and inhalers; and dreaming of that Marguerita once antibiotics are done.

    This afternoon I see the LE therapist. I'm still down that eight pounds of fluid...whew! Hopefully, she will get more out of me.

    I really felt good getting all your support and care throughout this. If anybody understands how much I want to get back to a non-treatment life, it is you all. Continue your great progress and know I am your biggest fan.

    Gentle hugs, Becky

    P.S. I left with my Radiation Treatment Summary and the CT scan. It shows days of rads, number of grays, fields hit, boost info, etc. Anything that I might need in the future. Don't forget to ask for yours at your follow up visit.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited July 2015
    SweetHope - What a saga! It's reassuring to know you're responding to the antibiotics, that your lungs are clear, that you're dropping fluid and feeling so much better. Still, take it easy!! You have really been through the wringer and need to re-establish your equilibrium.

    Good luck with your LE therapist today and thanks for the reminder about copies of our treatment plans.

    PS I'm impressed by your restraint in dealing with the RO. That smirk would have set me off big time!

    MidgieMoon, I hear you on the subject of dressing professionally through all this, particularly in the summer. It's pretty challenging, to say the least, isn't it?

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