April 2015 Chemo Crew... Starting in April? Please join us!

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  • lovlilynne
    lovlilynne Member Posts: 405
    edited August 2015

    Tina, I don't think I ever responded to your question about traveling after Lumpectomy. I think you would be fine to fly 3 weeks after. I had mine on Wednesday, took it easy/in bed (but worked from home) on Thursday, and I was back to normal schedule on Friday. I just had incision care for the next week or so. I was planning on getting on a plane, and not one doctor or nurse ever said that I couldn't, shouldn't, or even check in with them if I was considering it. I wouldn't have even thought to ask. I only had sentinel node removed. I know that doesn't matter as far as lymph edema, but I believe that the limited numbers does reduce the risk (but not remove it completely).

    KB - ok, so I was thinking that the bolus was just another term for boost, but I looked it up and see that they put a piece of rubber on you (I was wondering why you were saying it was cold). Seems like they should keep it warm! Like how they have warm US gel, etc.

    I've decided that Mass General Hospital is the most laid back cancer care in the country! :-) I get no advice or warnings about food or beverages. I had my Dunkin' Donuts cup with me at my simulation today LOL. Here's the list of "recommendations" that I was given:

    • Keep the skin in the treatment area clean and dry (oh, GTK- I'll have to get in a schedule of bathing!)
    • Use warm water and gentle soap - avoid deodorant soaps.
    • Apply a small amount of Natural Care Gel to the skin the treatment area twice each day (this is the 4 oz gel they gave me)
    • Dust the skin in the treatment area liberally with cornstarch several times (4-6) each day.
    • Do not rub, massage, or scratch your skin. Please let your nurse or therapist know if you are experiencing "itchy" skin. (To me, this is why all the lotions, etc. help - to keep from scratching, therefore breaking, the skin.)
    • Avoid wearing tight fitting clothing on the areathat is receiving the radiation treatments. Wear soft fabrics like cotton against the treated skin.
    • <paraphrased: Nurse will prescribe a cream for itchiness, use only that cream, skin has to be free of lotion or creams before receiving treatment> Notice no time limit.
    • Do not expose the treated area to extreme temperatures (ice packs, heating pads, sun lamps, Jacuzzis).
    • Do not expose the skin in the treatment area to the sun during your treatment. Protect the area with clothes or a sunscreen (SPF) 30 or greater.
    • If you experience any skin discomfort in the treated area, please notify your nurse.


    The nurse wrote in a couple other recommendations - but they were all duplicates of the above except for "no shaving" - not that I have hair to shave, but I guess if it starts coming in, I'm not supposed to shave it.

    I (finally) had my simulation today. First I went and had my bandage removed from my port removal incision. They said it looks great. The simulation went fine, got 3 tattoos, only bad thing was at the end when they gave me the date for my first appointment - 9/8!

    Grr, why 11 days from today? Ok, I know that there are two weekends and a holiday, but still! And, that's not even my first treatment, it turns out there is some sort of run through they do (like KB), and then first treatment will be on 9/9. And, the times - one appointment is for 1:24 PM, and the other 1:48 PM - what's up with the random time? So, if I show up at 1:49 I am late? Weird - also not conducive for returning to work.

    I didn't get a chance to talk to RO about it, so I emailed her, and she emailed me back and said to call, so we talked on the phone and decided I could return to work through this, and she's going to communicate with MO. Not sure of return date yet, but I'm sure MO will be in touch. I'll have to work appointments to either the early morning or mid-day for least amount of work disruption.

    Beach was gorgeous yesterday - we went back to our vacation beach in Maine. My sisters and two daughters came, and my BF was able to join us for a few hours too. The water was so warm - 70 degrees, I'm glad i didn't go in until just before we left, since I can't swim for another 2 weeks, I would have been bummed if I had known how nice the water was.

    Back to school stuff this weekend - taking Russ to college on Sunday, have to go BTS shopping tonight or tomorrow.

    I'm going to make a list of a bunch of stuff I'd like to get done before rads starts and before I have to return to work.

    Lynne

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  • AndreaC
    AndreaC Member Posts: 220
    edited August 2015

    Good day all!

    Rad 10/28 today and all is still well - I think I am a little more fatigued than before radiation but my skin is still fine. I was speaking to a BC survivor the other day and she had 30 sessions of radiation. She said that her skin was fine all throughout but it was two weeks AFTER rads finished that she started to blister and peel. So it seems to be very individual.

    My cancer centre is pretty laid back too. I have had no instruction on diet and have been drinking coffee all along. If I had been told to cut out caffeine I am afraid I would have been the most non compliant patient ever. I need my coffee!!!!! I only drink usually 2 cups a day though so I don't overdo it.

    Ksusan - you crack me up!! Emu semen...hahaha!

    Re the film in which I was an extra - it was made for a small film competition and is a short film with no dialogue, set to music. I doubt that it will be screened anywhere except at one local venue next month - I'll see it although I hate watching myself on video! So sorry to others who want to see it!

    Home today after DH gets off work! Can't wait to cuddle with my kitties!

    Andrea




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  • Rpayton
    Rpayton Member Posts: 235
    edited August 2015

    Andrea: That's great skin holding up and all well! I was told the same. Two to three weeks post radiation is when skin starts blistering, peeling and itching. Fun times coming for us.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited August 2015

    cold zombie skin and emu semen! We do live in a horror show lol

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  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited August 2015

    Kbeee and Lynne - sorry about all those damn delays and scheduling issues. Seriously, people have to step it up when it comes to the two of you. I mean...you are such fabulous people, hardworking, do so much for your families, saving grace for our discussion board....Yup, I am going to take a page from Littleblue and moon the scheduling people.

    Scarlett152 - thinking about your post. My MO told me that plantar fasciitis sometimes worsens with chemo. Sounds like that with heel/ball of heel pain and walking. I have this as well and it got worse through and after chemo. I am doing joint exercises with a PT/Lymphedema person. WHO, I must say this, seems to have healed some the cording that I got under my breast scar. She massaged it and I swear it doesn't hurt anymore. I am in awe. Mondor's cords.

    Andrea is FAMOUS, y'all!!!

    Littleblue - the food issues. It will get better and eating healthy is the right way to go for cancer/general health. Whine loudly! If I was there, I would walk out to some mountains with you and wail away. If I did it here, I would get arrested (dementia, they would say....or she finally broke down or she gangsta with that low cut hair).

    And beach time, Lynne. YES - we went to Cape Cod on Monday...beautiful! Kids finally got to the beach.

    A question about scans: I was told no scans or mammos (I had a BMX). Is it worth pushing for a PET scan or MRI?

    Have a gentle weekend, beautiful people.



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  • Stephmoen
    Stephmoen Member Posts: 563
    edited August 2015

    positive spirit it's hard with the scans because I know it's exposing you to unwanted radiation but I simply can't live without knowing for sure although there are no guarantees with cancer and scans it feels good to hear there is nothing there I pushed for a brain mri not very hard but I wanted one so I didn't worry about every headache I am also happy I got those pet scans knowing that nothing lit up takes a huge load off my shoulders..also had an ultrasound today the tech finally asked the Dr to come look because she couldn't find anything left where my tumor was and he couldn't either! Although I hated it at times I thank god for chemo

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited August 2015

    Scarlett and positivs- can I join the plantar facitis got worse with chemo group? Oh how I limp in the morning!

    Positive, mooning is where it's at!

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited August 2015

    Soooooo grumpy today. Too complicated to get into details, but family is driving me bonkers. Parents and husband annoying me constantly. And yes, I am 100% sure it's them and not just me! ;)

    The grace with which I have tried to handle this whole BC thing has run out. I so want my life back!!! I want my house back!!! I want my time back!!! I want my hair, eyelashes, eyebrows back!!! I want my old problems back!!! I want people to see the old ME when they look at me and not the new ME!!! I am so sick of looking sick and feeling sick. *!€#_/=&÷*÷£÷*=^! Tantrum over.

    Littleblue, I echo your frustrations about healthy lifestyle and cancer. I've watched everyone around me eat horribly and get no exercise for years. I've tried to set a good example and have been proud of myself for my dedication. So, now I am the one with cancer. £*#%!!! I wanted a freaking gold star!!!

    SE's seem about the same at last round. Taxotere/neulasta pain not as intense, but is still around on day 6...should have eased up yesterday. Much more tired mentally and physically, but still can't sleep more than 5 hours at night. Still off the ativan. No worse or better with or without.

    Thanks All for letting me vent!!









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

    I've been surprised to learn how many of the women I know don't get annual mammograms.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited August 2015

    Dizz, you deserve a gold star. 😀You seriously do. We all do!

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  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited August 2015

    Dizz - so frustrating!! I get you, boy, do I get you. We all need a ton of gold stars. Working hard to get to a new normal, whatever that may be.

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  • Scarlett152
    Scarlett152 Member Posts: 175
    edited August 2015

    Positive and Littleblue - it looks like we were on different chemo cocktails, but all have foot pain. Are either of you on Zoladex injections or have started tamoxifen? Also, feet and hands are so swollen and I have neuropathy a few times a day in legs. I'm hoping that it will resolve, but concerned this is the new normal.

    :-(

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

    Scarlett, sorry for your foot pain :(

    image

    image

    12 weeks PFC. Filling in but still sparse at the crown and getting a little disheveled-looking as the grey is coming in faster than the brown. My normal growth is straight; this may be coming in with a little curl or wave, but I don't know yet.

    I begin orienting new employees and students in 2-3 weeks. I'm thinking about these options:

    • Leave it alone through orientation and re-assess options at that time
    • Get a trim to clean up the Einstein hairs so it's tidier and looks more intentional
    • Do a neutral henna treatment to give it a little more body
    • Do a neutral henna and a trim, either now or in a few weeks.


    I'll definitely do something before I present at a conference in late October, bit I'm leaning toward doing something before the orientations. What do you think?

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  • gkodad
    gkodad Member Posts: 188
    edited August 2015

    I think I would trim a little and neutral henna. My white also seems to be growing faster than my dark hair, so I definitely understand the "Einstein" look. My first meeting is Sept 17 which will be about 9 weeks PFC. My hair is super short right now {like 1/4 inch) but I would love to chunk the wig and scarf. I've stopped wearing anything but my ball cap to radiation.

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  • gkodad
    gkodad Member Posts: 188
    edited August 2015

    I've had neuropathy since the start of Taxol, but it seems to come and go during the day, which is actually progress. I hit my husband with a plate the other day...it was in my hand and then it wasn't. He decided to empty the dishwasher without my help....just in case the next time it happens, I'm holding a knife.

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  • Scarlett152
    Scarlett152 Member Posts: 175
    edited August 2015

    Susan, I'd do one thing at a time. Get a trim to give yourself a little evenness and then see how you feel. I've heard chemo hair doesn't take color the same way your old hair did, so if you henna maybe do a test spot. Not sure where as there's no way to hide it, but better than it being orange all,over if it goes wrong!

    Gkodad - going to try to use that to get out of dishes (and cooking while I'm at it). The worst is in the morning when I try to drink my coffee in bed and my hands go numb! One of my few pleasures left post treatment is coffee in bed! Ok, I've been having wine too even though I know we are not supposed to. I keep telling myself that the studies say 2-5 glasses a week, but I keep having more, rationalizing that I didn't drink at all January - July. I know that doesn't make up for it but I feel that every study says everything causes cancer and the studies on wine's effect on recurrence risk is even less clear. Part of me know no wine is my new normal and the other part of me says I tired of being told what my new normal is and just want my old life back. I was already eating very healthy before diagnosis, but was definitely having more than 4 oz of meat a week - I miss meat too! Luckily I love veggies and fish, but it does get a little repetitive. Anyone else mentally rebelling again the new normal??

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

    Thanks. Yeah, I wouldn't color with henna (too much grey, anyway), but a neutral henna might give me thicker hair shafts for better coverage at the crown.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited August 2015

    ksusan, tinted dry shampoo? Temporary fix.....

    I thint my feet hurt because I broke my foot last October and taxol settled in it...

    Also, I need a bikini wax. WTF????! STILL BALD ON MY HEAD!!!

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  • Scarlett152
    Scarlett152 Member Posts: 175
    edited August 2015

    I didn't know that about henna. I'll have to look I to it! Sorry for the tamoxifen fueled new normal rant!

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited August 2015

    Scarlett, I'll see your tamoxifen and raise you 33 rads lol

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

    Rant away!

    Littleblue, I still sport a functional Brazilian.

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  • Scarlett152
    Scarlett152 Member Posts: 175
    edited August 2015

    LittleBlue - I just told my husband last week how I didn't realize how lucky I was to avoid radiation until reading this board. It seems a lot more common and difficult/painful than I thought. Hang in there!

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited August 2015

    ksusan, it's not zz top, but it appeared over night. Clearly you have a more sociallyacceptable overall body hair growth pattern...

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  • ksusan
    ksusan Member Posts: 4,505
    edited November 2019

    Depends on where one is, I guess :) I'm not an armpit shaver, but few see them AND I live in the 1970's, or as we call it, Cascadia.

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  • Italychick
    Italychick Member Posts: 2,343
    edited August 2015

    ksusan I dyed my hair with the Clairol touch up kit for between hair coloring. I used dark brown. It worked great, no orange. Made my hair look a lot thicker too, and nothing fell out. I've been going natural at work for two weeks, no head coverings.

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

    Thanks, Theresa.

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  • Scarlett152
    Scarlett152 Member Posts: 175
    edited August 2015

    KSusan, love the kitty in the picture! I've been lobbying for a kitty post chemo but so far the vote is in favor of a puppy to go with me girl in my avatar pic!

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

    I'll defer to Katy on the relative merits of a cat or second dog. My cat is 17.5 pounds, which for him is svelte.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited August 2015

    ksusan, lmfao! I may never wax again after this....every hair is sacred!

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

    I'm very ambivalent about getting a trim before school starts--I worked hard for that keratin!

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