Chemo in July 2015

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  • Cheesequake
    Cheesequake Member Posts: 264
    edited October 2015

    Beautiful post, Batesburg. Thank you. We do definitely all need that reminder while we're busy just trying to slog through chemo. I'm going to take myself for a walk in the rain!!

    (as an aside, you ever have one of those moments where you COMPLETELY misread something?! My brain just mangled the last two lines of text of the original post, turned "Monday" into "monkey" and put it into the sentence above, so at first I read "You are ALL such capable, loving, kind monkeys." I blame chemo-brain!!!)


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  • mdoc524
    mdoc524 Member Posts: 336
    edited October 2015

    Batesburg - you ROCK ... I have to say that I have given myself a big pat on the back just getting thru the 4 brutal rounds of AC (LOL) ... but I agree .. I was talking with my Sister-In-Law also BFF and sharing probably too much TMI about how you really feel during the low points and she said she really had no idea and neither did I before now .. I know people who have battled cancer but never really knew how brave, beautiful, courageous etc they really are ... won't take it for granted again .. thanks for sharing

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  • mama26
    mama26 Member Posts: 40
    edited October 2015

    mdoc524-

    No chemo for me today due to my low grade fevers all week. They are running more tests checking for anything viral.

    Hopefully it's a go next Monday.

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  • mdoc524
    mdoc524 Member Posts: 336
    edited October 2015

    Oh Mama26 - so sorry - hate delays - but maybe for the best .. hopefully they can figure it out and get you better and ready .. I have all kinds of crazy Taxol se's going on - if I find any tips will let you know .. nothing like AC but at times not fun .. keep me posted on how you are doing .. hugs to you

    Mary

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  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited October 2015

    it's true... If we were cowards, we'd give up and not fight. Thank you, Batesburg!

    I don't know that Taxol is any better than AC. it's just different. I still have a lot of fatigue and now bone pain although only for a couple days. Less issues with mouth sores, though.

    I take 1000mg of l-glutamine per day. I thought the pain was slightly less this cycle than last. I don't find it unbearable.

    Just two more cycles for me, then surgery then radiation. I'm wondering how they'll handle scheduling during the holidays.

    Originally we'd decided on a BMX, but that was before I tested negative for BRCA and chemo shrink my tumor down to nothing. Wondering if a lumpectomy is possible!

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  • Batesburg
    Batesburg Member Posts: 199
    edited October 2015

    Hi Twnkltoz

    I cannot feel my tumor anymore like I could before- haven't had a mammo or anything yet to really get a look at it- suspect that will happen before my surgery. If all goes well, my surgery should happen around the holidays (Dec 1 finish with chemo).

    I would LOVE to just have a lumpectomy but awaiting BRCA results (about another week) and also wonder if they cannot find the tumor how will they know if they get clear margins???? scar tissue? Other?

    have to admit, I AM a bit timid of the upcoming AC- I read such awful things with it on this discussion board......I have to remember, though, that I got through carbo and taxol, so like you said, just DIFFERENT, NOT better or worse. :)


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  • SVGsurvive
    SVGsurvive Member Posts: 87
    edited October 2015

    Batesburg, thanks for posting something so inspiring & introspective.

    mdoc524, I drink a cup (aka 8 oz) of liquid w/ the L Glutamine powder. Not much, but it's all I need to mask the flavor/texture. I guzzle it too, but I'm peeing all the time so it's hard to blame any of it on this newer regimen. :)

    As for when I do it - it varies hugely - I'm not consistent at all. The packaging says to do it after exercise, and again 2 hours later. The Kaiser infusion nurse said "whenever, but people tend to take it once in morning and once in evening so they don't forget."

    I had the same issue you were - not putting in enough scoops! If you bought the kind where 1 heaping teaspoon = 5000mg (aka 5 grams), then you need 6 heaping teaspoons per day.

    I take a general multivitamin everyday, but I'm going to ask my team why no one's suggested I boost my B vitamins. I've already asked why they don't suggest the icing of fingers/toes during Taxol - they don't believe in it, and my oncologist doesn't support it. Ugh neuropathy.....



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  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited October 2015

    when it says to take after exercise, that's if you're specifically using it for muscle recovery from working out. Not applicable for our purposes.

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  • Peabrain
    Peabrain Member Posts: 268
    edited October 2015

    Happy birthday to me! I turned four dozen today and tried to buy 48 donut holes to take the treatment center, but none to be had at three different donut shops. What up? I did get to have my 4th TC treatment even though my counts are low - what a weird birthday event. Anyway, I am now halfway through my treatments and happy about it.

    Hope everyone has a great day.


    image

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  • Cheesequake
    Cheesequake Member Posts: 264
    edited October 2015

    Aw, happy birthday Peabrain!! Here's hoping the rest of your birthday is as good as it can be. Glad you're having one :)

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  • mdoc524
    mdoc524 Member Posts: 336
    edited October 2015

    Aw Happy Happy Birthday beautiful Peabrain - weird on the donut holes .. hope you got to enjoy some of your birthday minus chemo :)

    SVGsurvive - thanks again .. my MO first told me any B-Complex vitamin will do .. I talked to nurse yesterday telling her I could barely bend my thumb and index finger and she advised up B6 to 100 mg 2x per day and B12 to 1000 mcg 1x per day.. my B-Complex that I was taking had 2 mg of B6 and 30 mcg of B12 - obviously not enough. I went out today and bought new ones and took right away with food .. I also increased my L Glutamine to 6 mg 2x per day and my neuropathy right now is all but gone so not sure which did it ... for the L Glutamine I read you should take it on empty stomach ... I put mine now in Cranberry juice to see if that will help bladder.. I feel like I have a UTI or Bladder infection - does Taxol do that ?? Not to be TMI again but my "pee" area actually throbs at times ... it is horrendous .. I went for pee test but I am sure that will come back undetermined ..

    Batesburg - so sorry to scare you about AC .. but there are so many that do not have major se's on AC .. everyone is different ..for me Taxol has not crushed my stomach the way AC did .. the fatigue I find though at times worse that AC .. with AC you have definite downs and then ups and I am finding with Taxol there are not many ups in energy or feeling OK ... hope that helps

    Twnkltoz & Batesburg - good luck in deciding on surgery - let us know if we can help .. I had BMX with TE - any questions happy to answer..

    Mary

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  • Jbandkb1
    Jbandkb1 Member Posts: 82
    edited October 2015

    So saw mo today & had chemo 2nd taxol. Found out that I will have to have radiation which wasn't 100%. MO wants to throw everything at this cancer. So now after chemo I'll have BMX then radiation. I'll also need to still get my ovaries removed too. Aw well such is life no biggie just makes things longer. Hope you are all doing well.

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  • 27heart
    27heart Member Posts: 151
    edited October 2015

    I didn't realise that so many of us are doing neoadjuvent chemo. I, too, am finishing my chemo in early December, then surgery, and radiation. My tumours have gone down by a lot, and im glad for that. I was told that I could take Dec as a rest month, and have surgery in Jan instead.

    It seems like most of you are opting to have the surgery in Dec, so I'm a little paranoid about the cancer coming back during the break.

    I'm wondering if you ladies are opting for surgery in Dec by choice, or by doctor's recommendation?

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  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited October 2015

    Happy birthday, peabrain! Mine is Thursday. Since my treatment schedule got thrown off a week, I should be feeling pretty good for it.

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  • 27heart
    27heart Member Posts: 151
    edited October 2015

    happy birthday, peabrain!

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  • 6feetover
    6feetover Member Posts: 320
    edited October 2015

    Bappy Hirthday, dear Peabrain!

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  • courtleboo
    courtleboo Member Posts: 72
    edited October 2015

    Happy Birthday Peabrain!

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  • SVGsurvive
    SVGsurvive Member Posts: 87
    edited October 2015

    mdoc524, so glad to hear your neuropathy improved, regardless of what did the trick! I'm hoping for the same once I dose up on the B vitamins. Also, I don't recall anything about bladders or UTI infections from Taxol in the documentation or what I've read online. Throbbing I've not had (except for husband - TMI!), so please ask your team & let us know.

    27heart, re: neoadjuvant, they told me we need 4-6 weeks of healing from chemo prior to surgery (lumpectomy, MX or BMX). Like you, my last infusion is 12/9 so the earliest I can do surgery is 1/6. They made it sound very standard, so I'm welcoming the break & healing time (physical/mental) prior to the big day. But I too am curious about others' timing. Maybe it depends on toxicity of the cocktail, amount given, etc.?

    Peabrain, happpy birthday! Mmmm donuts.

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  • 6feetover
    6feetover Member Posts: 320
    edited October 2015

    27heart and SVGsurvive: I'll be completing my Taxol/Carbo series (12 infusions) mid-late November. My onco team's told me that their protocol calls for surgery to take place no more than 4 weeks from the date of the last chemo... Interesting how the protocols vary..? Having the surgery/beginning the long, arduous process of recovery during the holidays isn't something I'd ever have chosen. I'll be meeting with my breast surgeon after next week's infusion; my meeting with the plastic surgeon is slated for the following week. *Sigh*

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  • mama26
    mama26 Member Posts: 40
    edited October 2015

    mdoc524- can you share your SE's so far on Taxol?

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  • Peabrain
    Peabrain Member Posts: 268
    edited October 2015

    @mdoc - just got back from the MO, had to have a second neupogen shot this week AND have a UTI from yesterday's Treatment. I kept thinking it was just burning, like I had with the Cytoxan, but no amount of water was helping. So it seems like that might be a Taxol SE we can put on the list

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  • mdoc524
    mdoc524 Member Posts: 336
    edited October 2015

    JBandkb1 - we are similar with Rads - mine was up in the air and MO said same thing - throw it all at it due to being under 50 and 2 lymph nodes positive .. I also am having my ovaries removed - my choice - my Maternal Aunt died of Ovarian Cancer and maternal grandmother breast cancer although testing negative for BRCA - still alarming...

    SVGsurvive - I think the combo of increasing the L Glutamine and increasing B Vitamins did the trick .. tips of fingers still numb but not more pain when bending and not Red or swollen .. whew I was really nervous I would have that for the duration.. hope yours does the trick.. I take my B Vitamins (500 mcg of B12 and 100mg of B6 - you can take 2x per day - I only take once will up it if needed) with my lunch everyday and the L Gutamine I take on empty stomach - 6-8 grams when I first wake up with Cranberry Juice and then again about 2 hours after eating lunch and try not to eat anything until dinner.. I figured if it comes back I can always increase the L Glutamine since not taking the full 15 grams each time .. that just seems like so much ..

    mama26 - hope you are better and no more fevers... here are my se's so far - now my MO's nurse said today that some could still be lasting effects from AC since I did get so sick the last round and no break in between.. 1. Major Fatigue - could shut my eyes at anytime; 2. Immediate Neuropathy on Day 2 - right hand only - Thumb and index and middle fingers - red swollen - hard to bend especially the thumb - see above on B Vitamins and L Glutamine Powder - I wish I had started them the week before starting Taxol - would highly recommend - my neuropathy is all but gone now - only minimal numbness in finger tips 3. Pee area / Vagina Pain/discomfort - throbbing at times -excessive peeing - no UTI or infection - I have been tested (nurse said they have heard this but no confirm it is caused by Taxol or could be residual from Cytoxan); 4. Muscle/Joint Pain on Days 2,3 and into Day 4 - I now started taking the Claritan with Aleve at night and even an Aleve in the morning if needed .. this was recommended for Neulasta Shots and if you get any bone pain - this combo works - it does not take away but more manageable. And lastly White counts - I understand Taxol impacts White counts which we both had issues with on AC - I will get my CBC drawn on Friday and will find out then if any impact and how low - will let you know on that one.. Stomach (knock on wood) has been pretty good - taking Ultimate Flora ProBiotic everyday .. Hope all this helps and everyone different so maybe you won't get any of these ;)

    Peabrain -thanks for sharing and I am jealous you have UTI and mine came back negative - so wanted it to be positive so they could give me antibiotic and move on .. hope yours goes away soon :)

    Have a great night all ...

    Mary

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  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited October 2015

    I don't really have tingling, and my fingers and toes aren't exactly numb, but there's less sensation. Does that make sense? Does that happen to anyone else? It's hard to describe...they just feel different.

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  • mdoc524
    mdoc524 Member Posts: 336
    edited October 2015

    Twnkltoz - I think it is mild neuropathy - any change to how fingers feel is how I look at it .. for me I started with mild neuropathy right hand from previous severe neck injury 5 years ago (was almost paralyzed) ..so my finger tips always have less sensation and at times no sensation .. so I was not surprised that I got it severe as soon as Taxol started but the B Vitamins and L Glutamine seem to have put it back to the mild side for me .

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  • SVGsurvive
    SVGsurvive Member Posts: 87
    edited October 2015

    Apologies for what may seem like a dumb question, but for those of you ladies doing neoadjuvant - how did you find out you had positive nodes? Did they do a Sentinel Lymph Node Biopsy prior to starting your chemo? Did an MRI show something suspicious which triggered the early node check?

    I'm driving blind and am told I won't know if I need radiation until after my BMX surgery, by which point I'll already have TEs in - which could interfere w/ radiation.

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  • 27heart
    27heart Member Posts: 151
    edited October 2015

    I'm doing neoadjuvent, and like you, radiation is scheduled to be after my surgery. I'm opting for immediate reconstruction, which could hinder radiation, so I'm a little confused about things now.

    Anyway back to your question on nodes, my lymph nodes were visibly larger under ultrasound, so my docs are sure about node involvement. Is this the same as being node positive? My docs aren't letting too much info and it's frustrating because I need to ask my own questions!

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  • SVGsurvive
    SVGsurvive Member Posts: 87
    edited October 2015

    Hi 27heart. I'm no expert here, but I believe being node positive can only come from the sentinel node biopsy which is normally done during your surgery. It's where they take some nodes out (any that the fluid from your breasts travel too, and perhaps others which they decide during the surgery.) It sounds like they saw enough on your ultrasound to warrant concern & radiation. Are you getting regular breast exams and armpit checks during chemo? I get one from my MO every 2 weeks. They should be able to feel if your lymph nodes and any lumps are shrinking. They also ordered me a mid-chemo ultrasound. Perhaps you can get one too? My docs don't dispense a lot of info either. The majority of my appointments are me with a huge list of questions based on research I did on the side and general fears/confusion.

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  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited October 2015

    my axillary (armpit) node was enlarged during the ultrasound, so they biopsied it. Then they did a PET.

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  • 27heart
    27heart Member Posts: 151
    edited October 2015

    Oh yes, and they biopsied one of my larger lymph nodes. And yes, I do get felt up every 3 weeks by my onc. My tumours have shrunk significantly, but I'm not sure if it's enough..

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  • Gretagirl
    Gretagirl Member Posts: 182
    edited October 2015

    Mdoc may sound crazy but the two times I have taken B vitamins I have developed a UTI. I do not take them anymore. I am having some neuropathy issues in right foot this round (4). It finally subsided and I ice my fingers and toes every Time during my Taxotere. I will bre starting radiation after chemo. My surgery (lumpectomy) was prior to treatment. Spoke with MO and Rad doc at length about lumpectomy vs mastectomy and both agreed mastectomy was not necessary. Then of course herceptin continues and will start tamoxifen.

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