Starting Chemo March 2015

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  • pboi
    pboi Member Posts: 663
    edited January 2016

    Hope you're feeling better today, Bekah.

    PB


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  • rleepac
    rleepac Member Posts: 755
    edited January 2016

    I am feeling somewhat better today. Pain is better but not gone. Basically back to my baseline pain.

    Question: Does anyone else have scalp tenderness? I know we may lose eyelashes about 3 times. I just wonder if there is some small amount of hair loss too. I haven't noticed any thinning but my scalp is very tender for about a week now - like it was before my hair fell out.

    Anyone

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited January 2016

    no tenderness here, but I feel like I still want to scratch my head a lot.

    May I wish you a VERY HAPPY BIRTHDAY, Bekah!

    🎉🎉🎉🎉🎉🎉🎉🎈🎈🎈🎈💃💃💃💃🎂🎂🎂🎂🎂

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  • rleepac
    rleepac Member Posts: 755
    edited January 2016

    Oh thank you! I've had better birthdays but I feel a lot of love today and that's what is important.

    I stupidly scheduled a colonoscopy for the day after my birthday which means I'm on clear liquids and I don't get to eat a piece of cake tonight or even a decent meal. I swear I still have chemo brain

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  • Meme117
    Meme117 Member Posts: 194
    edited January 2016

    So sorry Mo that you didn't go on your trip, hope yyou're feeling better.

    Sorry Lee!! Big hugs! Agree with getting a lawyer and I'll add seeing a therapist. With all the shit you've endured now this, wtf! Thinking of you, prayers for both.

    Theresa sorry about your mom, dementia sounds awful. Hugs!! Did u ever get your scale to budge? I feel like mine should be going down but nope. I'm working out hard and watching what I eat, majority of time😉 I'm gonna need to change it up.

    Bekah I don't feel head tingling. I do have thinned out lashes, eyebrows and nose hair.

    Met with MO today and have 3 more herceptins, great! Last one 4/19. Asked about port removal and boo-hoo she wants to keep it in for another year, what??? I had to breathe deeply to stop myself from bursting out in tears. Why? Due to more likely recur in first year, 😥 omg hearing her saying it just brought me so down. How can I move forward away from cancer when I'll be carrying this reminder??? Really WTF

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  • eheinrich
    eheinrich Member Posts: 792
    edited January 2016

    Bekah, without being gross, my GI nurse told me to drink that horrid gallon of liquid until things "are clear". To me this meant clear like water. I drank that junk until I was squirting and vomiting on my feet because what was coming out was yellow & I was looking for clear. Yellow clear is what they mean. TMI? That's what we are here for :P


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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited January 2016

    yeah... That prep pack is N-A-S-H-T-Y

    On this birthday you'll definitely be giving more than you receive. If you catch my drift.

    I had to lay a trail of towels from the bed to the bathroom.

    What WERE you thinking? I was gonna say "in your pocket", but I might just this once prefer your purse if that's ok. And do not. Under any circumstances. Trust a fart.

    Why does joking about poop make me laugh so much?????

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2016

    Bekah,You deserve to earths whole birthday cake after your procedure tomorrow. I had one s few years back; prep is worse than procedure. I am guessing I will have another in a few years, but am in no rush!!!!! Feel better soon

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  • Italychick
    Italychick Member Posts: 2,343
    edited January 2016

    Katy, i love poop jokes, call me sick. One of our kids favorite rhymes was "fatty and skinny jumping in a bed, fatty let a fart and skinny was dead. Fatty called the doctor, the doctor said, one more fart and we'll all be dead!" Can you tell I've been around my three munchkin grandkids today?

    Eileen, be warned, there is a kid intestinal thing going around, both granddaughters got it. Granddaughter Addison, one of the days she was here, I had to shower and change clothes three times from being squirted on. And today, Ella, the two year old, was sitting on the floor playing, and her diaper must have been primed just right, because she had diarrhea and a poop geyser shot up in the air and covered her, the wall, and floor. I took her outside, hosed her off, and we got in the shower, me clothes and all. It was in her hair, on her hands, everywhere. At the time I was traumatized, but typing it up I am laughing my ass off! So since you are teaching two year olds, you might want to keep a change of clothes in the car. It is a wicked intestinal thing, I am not kidding

    Maryellen, my scale has budged six pounds since chemo, so I have ten more to go. It really is slow going.

    And so much for being disgusting!

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited January 2016

    "Poop geyser", ha, ha, I'm laughing so hard I can barely catch my breath.


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  • Italychick
    Italychick Member Posts: 2,343
    edited January 2016

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  • rleepac
    rleepac Member Posts: 755
    edited January 2016

    What a vivid image you paint! I'm sure it wasn't funny at the time but I did get a chuckle out of your 'shitty' day description

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  • eheinrich
    eheinrich Member Posts: 792
    edited January 2016

    Too funny! We have had so many kids out with that or the cold with high fever over the last few weeks. It does seem to be dying down. 2 Fridays ago there were 10 of 18 out.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2016

    meme - it is common for us Her2+ to get the recommendation to keep the port for the short term.  I am fortunate that my port is very small, I still have it and I finished Herceptin in Jan of 2012.  I ended up having too many other surgeries for there to be a right time to remove it.  I actually liked having to go get it flushed because it kept me on the radar of the onc nurses so that when I needed something they were right on it for me, and it has been useful.  I am not one who has any negative association with the chemo room, so going back for a port flush is not a big deal for me.  Once you are done with infusions I think continuing to have your port will bug you less.  Hope so anyway!

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited January 2016

    Special- how are you healing from your recent surgery? Wishing you well.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2016

    jackbidie - doing ok, have had 5 small-ish fills now and the incision is healing fine.  My original problem with skin integrity was higher up on the front of the "breast" and it seems to be holding up ok.  Since I came to this new PS after much surgery with another doc she was dubious about success at first but now seems encouraged.  I am experiencing some rib pain below the expander but it is tolerable, more concerning is some lumbar pain, which is unrelated.  My PT who saw me Monday wants an ortho consult, so I have to start that process.  How are your eyes doing?  Also wanted to ask about your liver numbers - is that improving?  What do you do on a regular basis for that?  I am asking because I have a friend who is experiencing high AST/ALT with no discernable cause - negative labs (hepatitis, etc.) and clear MRI and US.  She has no chronic illness of any kind - just high values.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited January 2016

    Special- my liver is a bit of a mystery to me. The best consistent numbers I get are when I completely eliminate certain meds from my diet (there are many which seems to cause elevations for me- but the two notable ones are gabapentin and Tamoxifen, which I determined through process of elimination. Before chemo last year I did this plus took the juice of a fresh lemon in hot water every morning my numbers were beautiful all through chemo.

    This time, when levels quintupled in 4 months on Tamox, I tried eliminating the drug and took apple cider vinegar every morning instead of the lemon. My levels came down only slightly. I think possibly the long half life if Tamox could be why.

    I remain off endocrine therapy and see the MO with new labs drawn tomorrow. I didn't bother with the vinegar in the last 30 days. I thought I'd isolate the variables. If they are still high on tomorrow's labs, I'll go back to the lemon. I like that the best, but organic lemons (any fresh lemons actually) are quite expensive. If lemons are available and reasonable that is my first choice. After cleaning up the meds. (Tylenol and Vicodin et al are also a problem.) I'm sure there is a list on Google

    I have reassured myself that liver mets are rarely dxd via liver enzymes. Often people with mets never have elevations at all. It is most likely fatty liver from earlier days if alcohol consumption and overweight. Other than ALT and AST my liver functions are good. It just bugs me. A lot. Especially since I know they are capable of bring normal for long stretches of time, even during 4 1/2 months of chemo. An ongoing mystery indeed.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2016

    jackbirdie - aren't mysteries frustrating?  My friend doesn't drink, never has, and has little to no body fat due to regular soccer playing several times a week (at World Master's Games level), and regularly cycling - both mountain and road, weekly.  She is very careful of her diet, takes no daily medicine other than calcium and a multi-vitamin, and her GI doc is out of ideas but has now recommended a specific type of MRI called MRCP(magnetic resonance cholangiopancreatography) to try to determine if the problem is really something in the other nearby structures and organs that is influencing the liver.  He has also mentioned excess B vitamins as a potential issue - in Gatorade or SportBeans, or Gel.  There was also a discussion of too strenuous exercise causing inflammation but that is still under discussion.  I did tell her about your success with the lemon/hot water in the morning and we discussed the timing, now that all of her labs have been completed.  Hope you can get resolution with your numbers!

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  • molly1976
    molly1976 Member Posts: 403
    edited January 2016

    I have a friend too with high ALT/AST numbers and no symptoms or cause that her doctors can determine! She has finally given up trying to figure it out and is just living her life and not worrying about it. I wish I had that not-worrying gene.

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  • Trvler
    Trvler Member Posts: 3,159
    edited January 2016

    Happy Birthday, Bekah!

    Too funny, Theresa.

    I had to stop reading this am because I was eating breakfast….

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2016

    Happy Birthday Bekah! I hope all went well with the colonoscopy. I hope you're feeling better soon.

    Special, I hope all continues to heal well. Hoping the lumbar pain comes back to good old aging! When is the ortho consult?

    I've been doing some redecorating in my house (which I NEVER do), just put some temporary color in my hair to cover the gray patches (have never done that either) and just scheduled my work physical which I put off since it was scheduled during chemo. I feel like finally I am moving forward; just hoping it does not bite me in the ass this time!!!!!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2016

    kbeee - I have to jump through some hoops to get an ortho consult, first of which is to see my PCP on the military base for a referral.  I will ask for a new lumbar MRI done on base before I see the ortho, since it has been almost a year since the bi-lat hip and lumbar MRI, which was ordered by my MO to rule out bone mets after sudden onset severe hip pain.  That turned out to be stress tears in the gluteus medius, trochanteric bursitis, and excess fluid in the hip joint.  I have been in PT for the last 9 months dealing with that, but was thrilled it was not mets and that I am just old, lol!.  The imaging from last March showed degenerated disks at L3/4/5, and bone spurs at T12 - all pretty normal for someone my age.  The concern now is that I am so deconditioned from all of these surgeries - six since Mar 2014 alone -  that my spine is becoming unstable with this degree of degeneration and no strength.  I do have an ortho doc (same university based sports med facility as PT) that I saw for knee problems after running into a trailer hitch on the back of a truck while looking both ways before crossing the street - safety first, right?  Due to aromatase inhibitors the knee swelled up like a balloon and got painful and hot.  A big-ass shot of cortisone fixed that and the ortho doc became my new BFF.  So, the good thing is that I just need to ask to see him - I like him too - he doesn't discount the joint stuff that occurs with AIs and made sure I knew I could come see him anytime.

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  • SueH58
    SueH58 Member Posts: 632
    edited January 2016

    Happy Birthday, Bekah!

    You guys are all such a hoot. How wonderful that, at this point, we can chat and joke more than compare symptoms and recommend cures. Does this mean we're moving on????

    Hugs to all!

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  • rleepac
    rleepac Member Posts: 755
    edited January 2016

    Colonoscopy and endoscopy done! Doc said everything looked good and he took some biopsy samples to look for micro-inflammatory issues but I got the all-clear GI checkup today.

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  • Italychick
    Italychick Member Posts: 2,343
    edited January 2016

    Got my tumor marker results, everything looks normal and they were identical to one year ago. Of course, I know they aren't reliable, but still....

    Bekah, awesome that your results came back so good!

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  • neverthought
    neverthought Member Posts: 90
    edited January 2016

    Just sending love to Lee.

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  • avmom
    avmom Member Posts: 324
    edited January 2016

    happy birthday, Bekah. And a colonoscopy thrown in, too. Some girls have all the fun. Hope you are feeling better.


    DH had his ultrasound, and confirmed that he has gall stones. He will have to find time for surgery sometime this winter or spring. At least that can be done laparoscopically, so he won't have too much downtime. That said, he doesn't bounce back very quickly after being sick or having surgery, so we shall see.

    I've been under the weather for the past few days with some intestinal upset and feeling chilled all the time, but I'm trying to sleep it away. Maybe tomorrow will be better.
    Hugs to all.
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  • Italychick
    Italychick Member Posts: 2,343
    edited January 2016

    Avmom, hugs, sorry you feel bad. I think my granddaughters have nailed me with that same intestinal thing, ugh.

    My daughter had to have her gall bladder out. My only advice is watch his fat intake until he gets it dealt with, eating fat for her was a trip straight to the emergency room with dilaudid pain meds to get it under control until she could get her surgery.

    Allison, sorry about the breakfast/story thing. Next time I do a crude post, I will issue a disclaimer. After four kids, a niece and three grandkids, nothing phases me anymore

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  • slothabouttown
    slothabouttown Member Posts: 449
    edited January 2016

    image

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  • Meme117
    Meme117 Member Posts: 194
    edited January 2016

    GGreat news Bekah! Happy birthday!!

    Also great news Theresa!! Your stories are a hoot!!

    Avmom hope you feel better soon, best wishes for your hubby.

    Scheduling mammo and echo today, truly tired of appointments.

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