Chemo in July 2015

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  • 27heart
    27heart Member Posts: 151
    edited January 2016

    @svgsurvives - I got PCR too! Happy dance!!

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  • MissBee123
    MissBee123 Member Posts: 186
    edited January 2016

    Svgsurvives and 27heart I am SO happy for you both!!! Wonderful news! Dancing in my living room for you. Slowly dancing because I'm nauseous, but it's an unmistakable groove

    Headphones

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  • 27heart
    27heart Member Posts: 151
    edited January 2016

    Aww MissBee, you're so sweet. :) Jump that nausea away! How have you been?

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  • mdoc524
    mdoc524 Member Posts: 336
    edited January 2016

    WooHoo Congrats to you SVGsurvive and 27Heart too!!! Great news!!!

    Twnkltoz - thanks for the info on Gabapentin - so does your 1 dose at night help hot flashes during the day?? I started with 1 dose in the evening and did not wake up as much during the night but have had a few flashes today already so thinking I need to take it during the day..

    All - forgot to share - I got my Port out on Friday - what a great feeling that is - almost as good as last day of chemo!!! Kids on their 2nd day of no school due to Blizzard - UGH... hoping for school tomorrow!

    Mary

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  • MissBee123
    MissBee123 Member Posts: 186
    edited January 2016

    27heart, this time (so far at least) my two rounds of AC+T have been much kinder than TCHP. It's had it's own side effects: immediate nausea, usually with 4-5 hours of infusion; I'm maxed out on premeds so I just have to find at home help. I get a weird rash each time that looks like a sunburn all down my trunk. It's painless but it makes all of my scars bloodred for about 48 hours, which is jarring. MO didn't seem too concerned about it, just prescribed a hydrocortisone cream. I also feel like I have a golf ball lodged in my sternum, which is uncomfortable but not unmanageable.

    So far no diarrhea, no change in taste, no heartburn, a few tiny mouth sores, hair is still hanging in there at day 15 (not that I've got much), and flu like symptoms come and go but aren't too bad.

    Overall I'm doing pretty well on this regimen. If I can get the nausea under control I think I can get through the rest of this! Here's hoping I don't finish AC and then find Taxol knocks me on my butt!

    Congrats again. So happy for you!

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  • mdoc524
    mdoc524 Member Posts: 336
    edited January 2016

    MissBee - glad you are hanging in there with AC .. the red sternum sounds alarming and weird.. I mainly had severe diarrhea and fatigue on AC with a little nausea - I found Ativan worked best for me for the nausea if you had not tried that and I also found Ginger chews at Wegman's Grocery Store .. "Reeds Ginger Candy - chews" - they gave temporary relief - pretty strong ginger. Nausea sucks hope it subsides for you .. Do they give you Emend and Decadron to take for the few days after AC ?? Always continued thoughts your way!

    Mary

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  • mdoc524
    mdoc524 Member Posts: 336
    edited January 2016

    All -shared this on the RADs board and figured will share here - I read this article today and found it very interesting and a little alarming with all the hype on increasing Antioxidants into diets and juicing ..

    https://www.washingtonpost.com/news/to-your-health/wp/2015/10/14/antioxidants-may-give-a-boost-to-cancer-cells-making-them-spread-faster-study-suggests/

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  • 6feetover
    6feetover Member Posts: 320
    edited January 2016

    Mary: During chemo, I was advised to NOT take vitamin supplements, especially C, for the exact reasons detailed in the article. Ok, so: WTF should we be doing to stay healthy?! Does this mean that folks who're veggies/vegans are at ultra-high risk of cancer (or of metastasis if they've already got cancer)? Should we all be eating potato chips, candy, and donuts, then?! This sh*t really makes me angry!!!

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  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited January 2016

    Mary, that is scary... Thanks for sharing!

    As for the hot flashes, I might get a... Well, warm flash or two during the day. I'll get hot, but not as bad as before gabapentan.

    Thinking of you, @missbee!


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  • mdoc524
    mdoc524 Member Posts: 336
    edited January 2016

    adarkadapted & Twnkltoz -totally agree - this article freaked me out .. I am a firm believer in all things in moderation .. and their is so much hype on juicing with high dose antioxidants .. I was going to add a juice meal replacement each day to eat a little better and it is scary to think that we could actually eat something we think is healthy and that could add fuel to cancer cells .. I also get that this is only 1 study and may not be the actual case for us - who knows - that is what is scary

    Twnkltoz -thanks for the additional info on hot flashes ..I am noticing a small difference and have not increased dose yet

    Mary

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  • MissBee123
    MissBee123 Member Posts: 186
    edited January 2016

    Thanks all! I've got some decadron to take as needed. I'm trying to avoid it and deal with nausea with the million other things I have (ginger tea, ginger ale, ginger chews, ginger candy...people like to give me ginger...as well as probiotic yogurt and toast) but I'm not afraid to take it if nothing else is working.

    Drinking a lot of water also seems to help, which I figure can't hurt.

    I'm going to ignore that article entirely, ugh.

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  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited January 2016

    @missbee, how about peppermint? I used those swirly mints like you get at restaurants and even sniffed essential oil. For me it worked better than ginger, but then I don't enjoy ginger.

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  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited January 2016

    I saw my MO today. He said joint stiffness is common with chemo-induced menopause. Joints like estrogen, and the sudden drop in estrogen levels causes them to stiffen up. It should get better over time as my body adjusts.

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  • mdoc524
    mdoc524 Member Posts: 336
    edited January 2016

    Twnkltoz - thanks for sharing .. my MO advised my leg pain is all neuropathy related since my hands and feet are so numb - never said anything about menopause playing a role ... sometimes I really think they don't know much about some of the side effects .. I am 4 weeks post chemo and while I feel better than I did 4 weeks ago - the fatigue & neuropathy are still crushing me. I am supposed to go back to work in 2 weeks and not sure if I can - starting Radiation Monday which will only add to the fatigue .. UGH .. thanks for listening!

    MissBee- hope you can overcome your nausea and find what works best for you!

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  • Batesburg
    Batesburg Member Posts: 199
    edited January 2016

    @ Mdoc- I am six weeks post chemo and am still having some tachycardia although shortness of breath is gone. It seems to be slowly getting better- not by each day but by each week. I had some bloodwork drawn last Friday and my total WBC was only 2.2 and my ANC was still a tad low!!! I am having bloodwork done again this afternoon to see if there is a trend upward (however small, I presume). I had forgotten that with the neupogen/neulasta boosts each week I was not given the true picture of what my bone marrow was producing on its own and now the "naked truth" of my counts come out!

    All this to say that things simply take time. We all showed so much patience (well, you all better than me!) during the chemo phase, we just have to practice some more of it. Damn it!!!!

    My BMX is next Thursday....so nervous but have to trust in my surgeons.

    Happy Friday everyone!!!

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  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited January 2016

    patience... Ugh!

    I won't be going back to my dance teaching job until after radiation. While the fatigue has improved greatly, I'm just not ready.

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  • mdoc524
    mdoc524 Member Posts: 336
    edited January 2016

    Batesburg - thanks so much - patience is not my strength! The fatigue & neuropathy / muscle & joint pain is still just crushing me! When I try to be more active the pain is worse when I stop & sit down .. I started taking Gabapentin & increased the daily dose today so we shall see! Good luck & so many well wishes for you for your upcoming BMX - you will do great!!

    Twnkltoz - thanks for sharing - I am approved on short term disability thru 2/14 & have a very demanding job... I am just not ready either & expecting radiation which I start Minday to only add to it - like you said - going from one treatment to the next without being recovered is not easy!

    Hugs to all - have a great weekend!

    Mary

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  • 6feetover
    6feetover Member Posts: 320
    edited February 2016

    @ all: Seems like I only check in here to complain - and this time's no different! LOL! *UGH*

    Anyone else experiencing severe, full-body, rash-less itching during hot flashes that feels like "prickly heat?" This also happens when I shower in hot water. There're no visible bumps or eruptions, it's "just" an all-over, maddening itching that flares up whenever I get warm or sweaty. As soon as I cool off, it dissipates, then disappears. I'm allergic to everything environmental (house dust, animal dander, etc.), so I'm well-versed in allergy-related itching. This is totally different. Does this have something to do with being in medical menopause, perhaps? Or is this a lovely chemo-related SE that the onco team forgot to warn me about?

    Looking forward to your thoughts!

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  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited February 2016

    i itched for several weeks. I also seemed to have goosebumps all over. They and the itch went away about the same time my body hair grew back, so I think it was that.

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  • SVGsurvive
    SVGsurvive Member Posts: 87
    edited February 2016

    adarkadaptedi, hmm I didn't have any itching during hot flashes. Sigh - you gotta love the SEs that add insult to injury. ThumbsDown

    27heart so happy for you too!!


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  • 6feetover
    6feetover Member Posts: 320
    edited February 2016

    Twnkl & SVG: Thank you for the input! I'm thinking that I should probably talk to my MO and find out if this is something I should be worried about (vs. something that's merely frustrating)... *Sigh*

    MUCH LOVE and *GENTLE HUGS* to everyone whose awesome milestones I've missed!

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  • mdoc524
    mdoc524 Member Posts: 336
    edited February 2016

    adarkadapted - first you can always come here to complain - we are here!! I do not have itching with the lovely chemopause hot flashes however during Taxol before my chemo rash broke out I was itching all over with nothing there - hope yours is nothing like that .. Good luck so hope it subsides for you.. if your MO is anything like mine she/he may doubt it is related to chemo. Everytime I would share a rare weird SE - mine would doubt it was chemo related until I called her on that ticked me off.. hope you get some answers and help!!

    I had an issue yesterday I will share here and vent if you all don't mind .. so I exactly a month post chemo and no where near where I thought I would be as far feeling better - horrible fatigue still and leg pain neuropathy are both still crushing me. I am out of work on paid Short Term Disability which I have a total of 48 weeks to use as long as it is medically approved. I am approved right now until 2/14.. MO's office requires 5-7 days to fill out paperwork and then Metlife requires 5 days to review info once received from Dr office. So yesterday I called the nurse at MO's office to discuss the possibility of extending my leave and this nurse whom I really like and have known now for 6 months immediately says that I need to go thru RO's office for that since I am getting Radiation now.. I immediately pushed back since all SE's are chemo related and Radiation will only add to the fatigue - why would the RO submit paperwork to take me out of work I just started Radiation yesterday!!! She then did agree to talk to MO about it and we ended up having a really good conversation. I was so ticked that she saw an opportunity to dump me to someone else and went for it.. now I am concerned MO may not agree to extend the time even though I have not see her since 12/11 and next appt is 3/28 ... UGH!

    Hugs to all!

    Mary

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  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited February 2016

    good luck with that, Mary! Good for you for standing up for yourself.

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  • Peabrain
    Peabrain Member Posts: 268
    edited February 2016

    @mdoc - I'm thinking your MO does not get off the hook so easily. Way to push back! I also am going to need to extend my return to work. Guess I should look into that paperwork...another task for the chemo brain list.

    @Batesburg- I am two months out from chemo and just last week I noticed I was striding across a parking lot, instead of shuffling. That energy level didn't last long with the rads, but now I have hope of future striding

    @adark- I had weird itching like that for just a couple days right before my hair started coming in. Here's hoping it's only that and ends soon.

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  • 6feetover
    6feetover Member Posts: 320
    edited February 2016

    Pea: Heya!

    I had the very same symptoms that Twnkltoz mentioned when my head and body hair were coming in; I'm past that stage now, though, so I don't think it's related to new hair growth. *Sigh*

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  • Peabrain
    Peabrain Member Posts: 268
    edited February 2016

    drat! That would be such a benign answer

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  • SVGsurvive
    SVGsurvive Member Posts: 87
    edited February 2016

    Question! Has anyone dyed their hair since chemo? If so, how many weeks out from your last infusion were you - and did you try to get a "gentle" kind? (ex., I found one an ammonia-free one called "Natural Instincts" by Clairol - but is that gentle enough)? Thank you!

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited February 2016

    SVG, I haven't tried dying my hair yet and plan to wait until 6 mos. out from chemo which puts me into April. I might do it before our spring break trip to Tempe. I would think the hair color you describe is gentle enough. The non-ammonia ones are not permanent, so can be washed out pretty quickly if need be. Good luck and curious to know how it turns out.

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  • mdoc524
    mdoc524 Member Posts: 336
    edited February 2016

    SVG - I am dying to dye my hair as it is all white and I look like my 9 year olds grandmother but I am trying to wait it out - I am only a month out of chemo and was going to wait a few more weeks. I bought the Root Touch Up Dye - have used it before - not sure if it is gentle enough! Definitely let us know how it goes if you do dye it.. I know Ruth dyed hers so she might chime in ..

    Hope everyone doing well or as well as expected ..

    Mary

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  • Peabrain
    Peabrain Member Posts: 268
    edited February 2016

    The women in the April chemo thread discussed hair dye. If possible, search that thread for recommendations on products and some tips

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