Weekly Taxol group
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Gussy, correction on my point. I didn't mean that stress actually caused it, but rather brought it to light, so to speak, as you said. My worries (fortunately) have been mitigated by my taking control and learning to say no. I'm in a good place now 😉
So sorry for your loss. That had to be so hard, and you are a very strong woman to face such crisis, then have to go through this!
Hugs and prayers to you!
Vickki
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I am ok with being bald and go around with my shiny head everywhere & only put on a hat to protect myself from the sun. But last night I dreamed that my hair grew back overnight while on Taxol and that I woke up with a Phryne Fisher bob but in my hair color
Silly dream!
I have insurance that would pay for a wig and I'm still thinking of ordering one just for fun but I can't imagine wearing it much.
I had full dose taxol this past Thurs & I feel it in my hip & shoulder bones now but it's been pretty mild.0 -
Hello all!
I haven't posted for a while but wanted to get to place where I could report from the other side with as much info as possible. You can see from my bio that I've gone the neoadjuvant route for my treatment and am now just two days away from being four-week post-surgery. Some of you may have seen my previous posting that my MRI results prior to surgery showed that there had been reduction in the size in the tumors in my breast and right lymph node, but it was hard to tell exactly what was tumor and what might be new tissue growth. Well, unfortunately there was still tumor cells in my breast, but they were no longer a single mass, but microscopic focuses spread over a 3 cm area, with the largest being .8 cm. I also had cancer in 3 of the 23 lymph nodes they removed but all were less than .5 mm. Back when I first started my neoadjuvant treatment, I originally was just looking for shrinkage, so that I could have a lumpectomy, and several books I read made me think that the likelihood of complete remission was pretty rare, but as time went on I really hoped it would be the case. So, I was disappointed to see that some of it still remained and that makes me worry that if it survived in my breast and lymph nodes, could it be surviving elsewhere? There was no evidence of cancer in my left breast or sentinel node, so that does reassure me a little, but I know myself and know that I will never be able to fully relax, but maybe that is for the best, because every choice I make now I put through the "does this help prevent cancer?" lens.
For those of you on the Taxol train, I wanted to let you know that I feel for those of you heading into the summer months and thinking about head coverings! I am now 11 weeks post Taxol and just got my first haircut last week and bottle dyed my mousey blond/grey hair this weekend (I feel a little like Eminen). I started losing my hair after my second AC treatment last fall and just shaved it all off because I hated shedding, but I didn't lose my eyebrows and eyelashes until my 3rd Taxol. That was harder to bear than losing my hair, especially since my hair started coming back (albeit as white downy fuzz at first) during Taxol. I would say about 6 weeks ago my eyebrows started to come back and it was weird seeing these fuzzy things on my face! They came back with a vengeance about three weeks ago and were very thick and old man like. I also got a lot of very fine white hairs all over my cheeks - so much so that I had to shave! It doesn't seem to be growing back as fast, so I'm hopeful that it was a one-time thing. I had a wig that I absolutely loved and that many people thought was my own hair, made by Tony of Beverly, but when my own hair started growing back it started to drive me nuts and I couldn't wait to get it off once I got home. I know that TLC carries a bunch of hats that have hair fringe attached and if I was still in treatment in the warmer weather I would have definitely purchased a couple of those. My hair grew in fast in the front and top, but I had a baby bed head on the back and I continued to wear a baseball cap all the time until my surgery. As for other lingering side effects, at the end of my treatment I had constant pins & needles neuropathy in both my feet, and I now only have a lingering patch on pad of my right foot. My nails never turned black or fell off, but they had a reddish tinge and definitely started to lift about 3/4 of the way down. What I didn't realize was that this meant was that stuff could get under them, and I made the mistake of gardening two weeks ago (and not wearing gloves that would prevent muck from getting on my hands) and I got a whole bunch of dirt wedged under my nails that I couldn't get out and makes it look like I've shut them in a car door. I've had to let it get pushed out as my nails have grown (which is seeming to take forever) and I've continued to cut them very short to keep them from getting caught on something.
My next journey is radiation, and since I had residual tumor in both areas that have signed me up for six-weeks of M-F treatment. This was a huge disappointment to me, as I thought that since there was no evidence of chest wall incursion and they took everything off/out I might get by with a shorter treatment cycle. The doctor's response was basically since it was still there they want to blast everything so I'm getting chest wall, right armpit and upper chest radiation. Even though I've had my initial consult, I've got to wait two weeks before they can schedule me for my first treatment and that is when I get to pick my daily time slot. I'm very hopeful that the inconvenience of daily trips to the Dr. will be the biggest side effect of it all.
I wanted to tell you all in the midst of treatment that when I started it seemed liked it would take forever, but once I hit # five, the fact that I could count down to zero seemed to make all the difference to my mental state. I also wanted to let you know that I did massage therapy during my Taxol treatment, I would have a massage the day after my infusion because that was the only day my body didn't hurt, and I really think it helped me get through the experience with fewer SE. While I've heard and seen different messaging about massage and chemo treatment, I would encourage you to talk to your doctor about it (my health plan allowed me to get a prescription for massage therapy) as it was the only thing that I did to my body during that period that I looked forward to!
I'm sending you all positive powerful wishes – in the words of Rosie the Riveter, "We Can Do It"!
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Missmelissa what a sweet and generous post. Thank you so much for sharing. All the best going forward and please continue to keep us updated
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Echoing Ingerp -- Thanks Missmelissa for sharing your journey --- it is always helpful and uplifting to see that we will go forward from this tunnel and go on to easier days (although daily radiation will be a total PITA) it won't be ugly like chemo!
I had Taxol #10 yesterday and was finally able to let the hours pass without the constant checking of the clock (did I mention how much I can't stand that cold capping machine!!!).
Where I had lost patches of hair (around ears, top, back of neck) it has been slowly growing back in a downy grey fuzzy --- much akin to road kill or a baby goose. Then agin, cold capping sets me on a different course than others.
Can't wait to not spring facial hair. In fact, other than the absences of whoo-ha fair (still to date) and bikini line hair, all those horrid weird chin hairs that have been sprouting for the past few years are finally GONE! Hope not to replace them with a full beard once my body is back to "normal".
I urge urge urge everyone to do the nail care (daily moisturizing). I have a slight discoloration where the tips meet the beds but thankfully no lifting (fingers crossed!).
Two more to go ----- and then three weeks of dose dense rads.
We CAN do this!!!!
xx
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Amelia--congrats on having the end in sight!! I'm coming up on #3 on Friday, and it still feels like a pretty long time until I can think of double digits. Trying to relax and enjoy my summer rather than wish it away.
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HI MODERATORS - DON'T KNOW HOW ELSE TO REACH YOU. I TRIED TO MAKE A DONATION FOR YOUR MATCHING CAMPAIGN AND THE SITE WOULDN'T LET ME CONTINUE SINCE I DIDN'T HAVE AN EMPLOYER.
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<Taco I have PM'd the mods before.>
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Thanks, Inger. Will try that.
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For Ingerp and all:
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#3, please.
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#12 of 12 Taxols DONE! Whoo Hoo. Today I feel like the healing can begin! No more poison! I slept an hour or so during the infusion (Benadryl!) and went straight to bed when I got home to sleep the rest off. Tonight I’m going out to our Non-profit’s fundraiser (Small, low key 😀) and will celebrate with my favorite meal at the restaurant, live music and my husband got a cake. Everyone who is there gets cake if they want it!
To those still early, hang in there! I think Taxol hit me harder than some, at least harder than I expected. Take it on treatment at a time and you’ll be done before you know it. Be good to yourself along the way. 😘
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mjb that is awesome!! Congrats to you and thanks so much for the encouraging words. (But am I the only one who didn’t get cake??
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You got ice cream lady!
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Alrighty!! I just ran my hand through my hair and for the first time a bunch came out. I guess I’ve officially started. I need to baby it along for 24 hours and then I don’t care so much. Everyone cross your fingers and toes, please.
Egads—the ice cream will help. Thanks.
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Wow egads—did it happen that quickly? It was so steamy around here yesterday we were all sweat balls at the reunion activities. I definitely need a hair wash today but will be super gentle. I will also try super hard not to touch it before shower time. Maybe it’s a plus that I’ve always thought I had too much hair? Feels like I still have a long way to go before being full cue ball
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Go knock em’ dead with your gorgeous mane today ingerp, I sent you a PM.
Can’t wait to read all the gory details of your day
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Oh I’ll pass on whatever I remember. ;-)
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My eyebrows and eyelashes are all gone but unless I'm imagining it, my hair is starting to grow a teeny bit!
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Yay Moth!! ((Hugs))Hang in, the brows and lashes usually come back much faster than head hair. Thankfully my lashes fell out but came back 4-6 weeks after my last infusion. I remember being down to only one lash, and still carefully applying mascara to it in a vain attempt (literally) to retain some kind of womanhood. Har! I looked like a minion!
Seriously though, at the time it felt like forever to see regrowth. Years later it’s just a foggy bad memory. You’ll be at the salon before you know it!
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Tomorrow is infusion 11# (actually the 10th as I skipped one).
My brows are still around for the most part - thinned and where they grew back from having fallen out on EC they are very light in color.
Anastasia brow pencils and brow pomade are great!
Lashes are at 50% and I can now attest that no single mascara claim to “longer lashes” is correct.
Good thing it is hat and sunglasses season!
I am having some neuropathy in my feet. I notice it mostly at night. I am taking the fish oil (2 or 3 capsules a day).
I feel that I just need to get this all over with quickly and back on the road to healing.
I’m supposed to take an intercontinental flight 4 days after last Taxol. I really don’t want to wear a mask.... maybe I’ll shoot myslef up with some filgrastim.
Is anyone doing Neulasta or filgrastim on Taxol?
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Amelia - I'm doing filgrastim injections while on Taxol. Every week, day 2-5.
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Hello,
I've not posted in a bit, but thought it a good time to share some information. I completed Taxol #12, my last dose, on Thursday. Yay! I will continue with Herceptin every 3 weeks for a year, but am hoping the worst is over since Taxol is the official chemo drug that is done.
Neuropathy started in my feet at about 5 weeks. I got on it immediately and this combination of things helped tremendously: L-Glutamine powder, L-Carnitine capsules, Alpha Lipoic capsules. I have been taking these 3 supplements twice a day and will continue for 4 weeks post end of chemo. I also increased my acupuncture to weekly, added reflexology (foot massage), and soaking my feet in epsom salt to pull out some of the toxins. The tingling and numbness is still present, but is about 70% better than it was before I started doing all of this treatment, and it has not progressed to worse.
I still have lashes and brows, but know they might go at any point. I have lost most of my hair, probably 95%, but chose not to shave and enjoy having little wisps sticking out under my cap. I know they might still all fall out too, but I hope it grows instead.
My body gets a little break before radiation starts in a few weeks. I'm hoping to get some energy back and start increasing my activity level. My endurance has tanked and I have to build it back one step at a time.
I will also post this in the "Starting chemo in March 2018" group. Wishing you all a pain-free, peaceful day.
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hello to all, hope you are doing well. I just had my #10 taxol on Friday and Sunday was so far my worst day. Except from fatigue I've had an extremely bad psychology. I want to cry all the time, didnt have appetite at all and all of that was result from the twitching that I've had before I tried to fall asleep that scared me a lot...yesterday had the same: when my eyes closed my leg, my arm or my body did move a little. I remember I had it before but know it concerns me....
I asked my onc and said is probably from anxiety or fatigue ...
Does anyone have that???
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NoteRed--sorry I can't be of any help. I had so much going on this weekend I sort of forgot to look for any SEs from #3 last Friday. ;-)
Downdoggie--while we have you, do you remember the timing of your hair loss? Like how long it took to <mostly> come out? I got my first handful of hair on Friday, the day I had #3. I've had pretty full shower drains since, but I'm really just kinda curious when it'll be time to get the buzzers out. I haven't had any neuropathy yet but will try to remember your excellent suggestions for if/when it hits. And I have been curious about the timing of rads following Taxol. I know my MO said "after you've finished", and didn't think to ask, but I've been assuming there would be a short break to recover a bit. I'm just kind of trying to plan my fall--if I stay on schedule, I'll be finished with the T at the beginning of August, so I'm wondering if after Labor Day will be good for starting rads?
Ennyhoo--I'll have #4 this Friday, and my first check-in, not with my MO but with a NP. Anybody else geeky enough to look forward to seeing the results of the blood work every week? Mine have been showing up in my patient portal on Wednesdays. Fun for me to check the numbers, and you can even graph them over time. <heaven!>
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Hey all...I was just wondering if anyone who has finished Taxol, or is close to the end, has had any eye floaters? I had infusion #12 on Friday and I had a spell over the weekend and again today. It's driving me nuts! I see my oncologist on Thursday, so will definitely ask. I know some chemos can cause eye issues...
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Ingerp, I was told by onco staff that my hair would go at day 8, 15, 20....I was pretty obsessed about it every day. I had my hair cut down to about an inch all over. I didn't start to lose hair until closer to 30 days after first chemo infusion. I got scary handfuls in the shower for weeks, and in my hats. It has slowed now. I'm not sure if it's because I have less to lose or if it's done shedding. Someone suggested that I buzz it so it comes back even but I'm not doing that. Funny how so many people feel comfortable telling us what we should do as we battle this disease.
My radiologist said that my body should have 2 weeks post chemo to rest before they schedule the CT scan simulation. Once that is done, they will put me on rads schedule, so I'm guessing 3 weeks break.
Chemo has definitely affected my vision. I can't see out of my new glasses, so I guess that means my vision improved, although it changes daily. How weird is that?!? My MO says it is a typical SE and not to make prescription changes till it's all done.
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Thanks, downdoggie. I still look okay (I think!) but am wondering when it'll hit me that I've crossed the threshold of looking obviously balding. And I'll think more like a couple of weeks rather than 4-5 following Taxol. Things move fairly quickly where I'm being treated--a benefit of being in a small-ish town.
And after #2 I felt like my eyes were a little more myopic than they normally are--not bad, just like my prescription could have been a little stronger, although now they seem back to normal. I *have* heard about women who think their vision gets better on chemo--cool beans!!
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