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Weekly Taxol group

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  • Katjadvm
    Katjadvm Member Posts: 117
    edited September 2016

    Hang in there everyone. I had my last taxol almost two weeks ago and I am almost completely back to normal and weaning off of the glutamine. Thinking of you all.

  • fireheart438
    fireheart438 Member Posts: 85
    edited September 2016

    Thanks to all of you for asking how I am doing. I was actually worlds better within 24 hours. Phew! Over the years, if I have felt something coming on, if I could get some rest I usually fared much better. It was scary because I didn't know if the same would be true now. But after cancelling last week's infusion, I got home and took some Tylenol and Claritin. Took a 2 or 3 hour nap. Was even able to enjoy some time out that evening. Spent most of the holiday weekend reading, napping, and getting in the occasional walk.

    This week I am definitely wearing a mask at school whenever I'm around a group of students. It's actually led to some interesting questions. The kids are all so sweet about it. Actually, the youngest ones don't even seem to notice. They just want to talk about their iPads and all the stuff they do on them. Pretty sure I've also gone through a gallon of sanitizer the past 2 days.

    Saw the BC's nurse yesterday - 8 weeks post BMX. She really liked how things were looking. Noticed some tightness in my left pec/delt area and encouraged me to keep stretching. Gave me an order for PT because she thought my expansion process could make it tighter. I do have good range of motion and was thinking the tightness was just the feeling of the expander. So it was helpful to hear her take and know I can move more.

    Oh...and I think my Mohawk will only make it for the rest of this week. I'm shedding like crazy. Hair is also feeling coarser than it usually does. Thought the first few hairs I found were actually from the cats shedding. Came to realize it's my own gone chemo crazy.

    Katjadvm - So glad to hear that you are feeling improved. It's encouraging to know that we all can make it through.

    Going to be a hot few days here in the MidAtlantic. Ugh. Sooooooo ready for fall.

    Wishing everyone a wonderful day!

  • MLMSC
    MLMSC Member Posts: 31
    edited September 2016

    Checking in after second treatment. I had minimal side effects the first week and was so much more relaxed for the second infusion. In fact, the Benadryl portion seemed to really effect me. I dozed for most of the remaining 4 hours.

    As for the side effects, the second treatment was Tuesday ( it is now Friday) and I think they have been minimal. I've had minor stomach issues and are treating them with OTC meds.(mostly constipation) Have noticed the tiniest "pinging" in my hands, but not my toes. I lasts for just a few seconds. The MO told me not to be concerned unless it became so bad that I could not use my hands for tasks such as closing a button. I am taking a B-Complex daily. Yesterday ( 2 days after treatment) I was fine in the morning, even went to water aerobics class, but was hit with major fatigue in the mid afternoon and it lasted all evening. Luckily I am retired so I was able to rest as needed. I felt great this morning and did my usual 2 mile walk, at the gym. Doctor wants me to continue on my usual moderate walking/water aerobics 3-5 times a week. - can't catch a break!!!!!

    I use Tree Tea Oil several times a day on my finger and toe nails. Actually I think my nails were more important to me than my hair. I had lovely mid length natural nails that I had manicured regularly. I've since filed them shorter, and use the oil to try to preserve them. Chemo teacher said nail polish was not an issue but the oil will not penetrate the polish. So the nails are natural for now.

    I seem to have very dry skin, and have noticed my nose is dry and bleeding a bit on a tissue. I think Saline Spray will help that. Hair is short, head is tingling a bit as I type but no "release" yet. Is the tingling a sign of things to come?

    What do most of you do about any social interaction, like crowds. We generally go to college football games but have decided, even if I am well enough, that being in the crowd is a bad idea. Dr. agrees. I play Mah Jongg (Sort of like cards) with some ladies and last week I wore gloves. Not sure what we will do about worship services. I need to be more careful around others. Never noticed till now, how many folks like to great others with a kiss or hug.

    Again - thank you to my new friends on these boards. Your experiences and comments have helped me a good bit. I made a post or two on the September 2016 chemo thread, but most in that group are not on the weekly regimen and seem to have greater and more significant tissues.

    Best wishes to all for a peaceful weekend. I'll check back soon.

    M

  • jojobird
    jojobird Member Posts: 99
    edited September 2016

    MLMSC, good question about crowds. I'm avoiding them in general, but my blood counts have been pretty good so the onc says "go ahead and live your life, just wash your hands." How are others handling this? Curious.

    I just finished round 7 of 12 Taxol treatments, and boy after the infusion I was truly exhausted. As in, can't get out of bed all afternoon exhausted. That was Tuesday. Today is better - went for a 3 mile run and am up and about the house doing chores. A few minor pings in toes and fingers, but they are brief. My nose is running and my eyes are watery, but overall side effects are pretty minimal. I continue to ice my hands and feet during treatment and take glutamine, ALA, and B vitamins -- hope that helps.

    One other thing - my facial complexion has oddly become very smooth. I've never had great skin so this has been a real perk, even with no hair! LOL. Such an odd thing, chemotherapy.

    Wishing everyone a great Friday and rest and enjoyment over the weekend.

    Jojo


  • Imkopy2
    Imkopy2 Member Posts: 214
    edited September 2016

    MLMSC-everything you are experiencing sounds about accurate. I have completed 8/12 treatments, in the beginning I had some stomach issues first it was constipation then things loosened up a bit. I found caffeine to be an irritant of my stomach so I stopped and things cleared up. Fatigue comes and goes, there's times she I have a bunch of energy and then there's times when I can't seem to stay awake. There's no rhyme or reason but it's definitely better than my previous treatment. I walk whenever I can just to give me some normalcy. Taxol wipes out my skin especially on my feet & hands, I use tea tree oil on my hands and moisturize everyt time I wash them. My feet is a whole other story, they peel horribly. I soak them in warm water, Epsom salt & coconut oil, it has helped tremendously. Just make sure to have your towel handy to dry off your feet, once I finish soaking them, I pat them day & massage the oil into them.


    Jojobird- As for crowds, I try to avoid them as much as I can unless it's something I really want to do. For instance, I shop early when there's very few people around. But I always have sanitizer with me & I carry wipes with me just to be safe. Big crowds probably not the best idea, small crowds are doable...for service, sit in the back & don't touch too many things. Your congregation will be very welcoming and understanding I'm sure. Bring a mask & use it of need be. Playing cards with your friends go for it, you have to live your life in someways!


    I did experience some neuropathy early on, my onc gave me Metanx & it has worked very well. I was somewhat of a Guinea pig for that because my onc wasn't sure how effective it was. Good luck ladies, remember we.ve got this!

  • Katjadvm
    Katjadvm Member Posts: 117
    edited September 2016

    Jojobird: my skin and scalp were great on chemo. Now that I have finished, I am starting to have flare ups.

  • cris8325
    cris8325 Member Posts: 28
    edited September 2016

    Finished Taxol #8 today. I somehow ended up with a stomach bug but they went ahead with chemo and gave me extra fluids. Took a very long nap when I got home and feeling much better. Four more to go. Hope everyone is doing well. Getting quiet... Lol

  • Katjadvm
    Katjadvm Member Posts: 117
    edited September 2016

    This may sound a little strange, but I ate a lobster roll every week during my Taxol. I don't miss the chemo, but I do miss the lobster roll. Felt a little spoiled. Hang in there everyone. It goes by quicker than you think.

  • roofcat59
    roofcat59 Member Posts: 33
    edited September 2016

    Up early this a.m. with no return of sleep yet - hooray for steroids. Has anyone in this group tried Vit B6 and/or R-lipoic acid (stabilized alpha lipoic acid) for neuropathy symptoms? Would love to hear of anyone's experiences if you've had any.

    I've read about quite a few of your successes with glutamine but am hesitant to try for a number of reasons. Am rather late to this particular discussion topic, having had 7 rounds of taxol already and fairly good luck with only intermittent neuropathy. However, when it does hit it is driving me crazy. The other day when grocery shopping I wanted to tear my hands off. "Borrowed" a large bag of frozen peas to wrap around my hands til it finally let up :).

    Yes, chris8325, it has been strangely quiet on this group. I suspect it will get busy again when the August AC-T group finshes up and starts taxol. But as they say, no news is good news I guess. Maybe if I ate a lobster roll weekly it would help with neuropathy, Katja?

    Hugs to you all. ((♡))

  • jojobird
    jojobird Member Posts: 99
    edited September 2016

    Roofcat and Katja, a lobster roll sounds lovely. Maybe we should add it to the repertoire of neuropathy-prevention strategies?

    Finished round 8/12 of Taxol this past Tuesday. Very small and intermittent neuropathy symptoms, knock wood. I ran four miles yesterday morning and then crashed - slept for two hours in the afternoon and just had major fatigue the rest of the day. My nails are changing color, but it's not really noticeable, and I do see some slight peach fuzz growing back on my head. No other major symptoms, other than intermittent fatigue.

    Still eating healthy for the most part. Lots of fruits/vegetables, smoothies, maitake/shiitake mushrooms, less meat, and more green tea. I am wishing everyone else healing on this road and a restful, peaceful weekend.

    Jojobird


  • Zoziana
    Zoziana Member Posts: 102
    edited September 2016

    Hi ladies: Update from 8 weeks post final chemo (PFC). I had only Taxol and Herceptin, but some very rare for Taxol, uncommon and debilitating side effects that kept me bedridden.

    The good news is that I feel really good! (I'm guessing most people would feel "great" at 4 weeks PFC, but it took more time for me because of the rare side effects; you can search my posts by name to read about those if you need to.) Anyway, I am hiking 5 miles, using my rowing machine, and headed back to work ( I did have to take a lot of time off.)

    I do get more tired than pre-cancer, but it is nothing that interferes terribly with my lifestyle--I just do a bit less around the house and spend more time reading and relaxing at home. My skin is now back to normal, and not crazy over dry , and eczema patches which appeared on my face and torso in chemo are gone. My hair is regrowing. I didn't loose my final 4 lashes until about 4 weeks PFC, but they are already growing back and are tiny stubs. Eyeliner was and still is the solution... I never lost all my brows, but I lost most, and they are growing back so I've a nice line now to follow when I put on eyebrow makeup. I lost lots of hair (I looked like a top bald, shabby monk) and shaved my head around 8 weeks in chemo), and it is all growing back now. I have gone out a few times without a scarf or wig, but it isn't at all a "style yet", but it is a rather tough or avant garde high fashion very shorn look which I feel comfortable wearing with glasses and some bright lipstick (but it can still get sunburned as it is thin and I'm fair, so I have to be careful.)

    The Herceptin every 3 weeks is easy, though I feel flu like for a few days after, but many have no problems at all with Herceptin. And in comparison to "regular" chemo, it is a piece of cake!

    I wish all of you good luck going forward! You will make it, and be on to the next steps. And next steps, a good future for all of us, is what it is all about! Best wishes to all!

  • Katjadvm
    Katjadvm Member Posts: 117
    edited September 2016

    Roof cat: I added in lipoic acid and b6 when my neuropathy got worse around 8th week of taxol. I started glutamine after my first dose of taxol due to tingling in my hands. I weaned off the glutamine two weeks PFC, but still take the lipoid acid. I found that all three were essential to controlling my neuropathy. No residual effects. Thinking of you all. Fuck cancer!!!

  • Houston2016
    Houston2016 Member Posts: 248
    edited September 2016

    Hello everyone, I finished Taxol 09/01/16 and BS said I need to take break for four weeks before surgery. What I've been feeling I'd tight stiff front of upper legs muscles that it's a discomfort to stretch, bend my legs, I don't really know where that came from. Overall, I feel fairly good and energetic with Taxol, don't have neuropathy. I did use Jacuzzi in my bath tub several times a week. I thought that would help more.

  • KQHill
    KQHill Member Posts: 28
    edited September 2016

    I finished #9 on Thursday and have been blessed with pretty minor side effects from AC or Taxol except bad headaches. This time the cumulative seems to have hit me harder - or I'm fighting off a cold. Nose is either pouring or dry and bloody when I blow so saline drops to the rescue. No neuropathy, however the joint pain is getting a bit worse, and I'm still taking glutamine with my morning protein shake. I'm clumsy as heck, which is not normal for me, and I've taken to using a cane when I'm going to be out for quite a while or I'm tired.

    I'm taking a break next week to go to Mexico for a business conference with 12 of my agents, one of whom is an ER nurse for her day job, so I'm in good hands. MO requests I wear a mask on the planes but no other precautions.

    Counting down to DONE!

  • Imkopy2
    Imkopy2 Member Posts: 214
    edited September 2016

    Houston 2016 congrats on finishing chemo ...I have taxol #10 tomorrow (Monday) enjoy the most welcomed break! What type of surgery will you be having? Please keep us posted, I will be thinking & praying for you <

  • tsu
    tsu Member Posts: 37
    edited September 2016

    Hi roofcat59! Did u ever find out from the onc what the inner thigh/groin pain was? I forgot to ask last time I was there. I felt pretty good so I hopped on the treadmill and did a slow 5 k. a few days in a row and haven't had that pain since. Don't know if it was treadmill or coincidence. Hope you all are feeling not too bad and getting by, thankfully the really stifling heat in the east has changed

    Tsu

  • MLMSC
    MLMSC Member Posts: 31
    edited September 2016

    HI all - tomorrow is the 4th of 12 weekly treatments. So far no major issues. The minor issues have been accommodated with OTC medications. I seem to have a pattern of fatigue the afternoon/evening two days following my Tuesday treatment. I am retired, and can simply adjust my schedule. I have been vigilant in some preventive measures and I hope it helps.

    I made a comment earlier that I didn't care about hair loss. I don't think I was honest with myself. I started to lose hair last week and I think what made it difficult for me was that it made the cancer real. I have wigs/hats/scarves so it is not the appearance issue, just the realization issue. I have had a good bit of hair shedding/hair loss. It is not coming out in clumps, just wisps ( I guess 30 strands) anywhere/anytime I put may hands through my hair. (ha - I am waiting for someone to tell me not to put my hands through my hair Happy) I have washed it gently, use a wide tooth comb and just use a hair dryer on a cool low setting. I don't dare put a brush through it. Every day the amount of hair that comes out seems to get worse. I had my shoulder length hair cut short, after the first treatment and I am so glad I did that. So my question to you is, is the hair loss likely to continue till the loss is significant or complete, or will the hair release taper off at some point? I know there is no definite answer. I was told the loss can be thinning to complete loss so I am just trying to get some general consensus.

    I am guessing that for other SE, the chemo will build and I may experience them.

    On the light side, sometimes I don't know if I want to laugh or scream. We had a laugh last night and started to sing the 12 days of Christmas to the 12 weeks of treatment. Made us laugh. Try it - singing........On the first week of treatment, chemo gave to me, lots of anxiety....On the second week of treatment chemo gave to me, simple stomach issues...and lots of anxiety.... On the third week of treatment...You get the idea. Feel free to add your verses. Laughter helps - Honestly it was the best I've felt for weeks!

    OK - so number 4 is tomorrow. I still have not gotten used to the Benadryl but will take advantage it and hopefully nap for most of the 4 hour treatment.

    I hope all of you have a good day and find strength. I know many of you have hectic schedules, young children and current jobs and I am thinkimg of you as we all move forward.

    Regards,

    M

  • KQHill
    KQHill Member Posts: 28
    edited September 2016

    Hi, MLMSC (fellow SC'ian)!

    AC took about 80% of my hair, Taxol only my eyebrows and eyelashes. I've 9 of 12 done and everything's coming back nicely. Well, "nicely" is stretching it a wee bit.

    And stop running your hands through your hair! Loopy

  • roofcat59
    roofcat59 Member Posts: 33
    edited September 2016

    Hello everyone - quite a few posts recently. I answered tsu in a private message, but will repeat info here for all re: muscle problems (myalgias) in general. Muscle pain, cramps, stiffness, twitching, etc. all fall under the umbrella of the neuropathy and myalgias and arthralgias caused by taxanes. Taxanes cause intrinsic toxicity and injury to cells resulting in these side effects. Myalgias can include muscle spasms, twitching and prolonged contractions.

    Round #8 for me was this past Wednesday. Yesterday while I was doing some lengthy cooking, standing relatively still, I got some major calf muscle cramps. Had to walk around the house for quite a while and do some prolonged massage to get things back to normal. I guess the bottom line is to keep moving as Imkopy2 and tsu have said.

    So Houston2016, I would bet the stiffness in the front of your upper legs is a Taxol myalgia side effect. Congratulations, by the way, on finishing chemo and enjoy your break before surgery!

    MLMSC: Like your variation idea on the 12 Days of Christmas and happy that the ensuing laughter made you feel better. After 8 rounds of Taxol, I'd have to say the hair loss does taper off a bit. I buzzed mine after round #4 so that it was easier to deal with. I still lose some every day, but I do believe I've reached an equilibrium point because I am not bald and the remaining hair seems to stay relatively the same. I use a lint roller to pick up the pieces from my pillow and a mesh drainer trap to catch the stuff that falls out in the shower. I can honestly say that the amount getting caught is much less than it used to be. Oh, and by the way, I have eventually come to tolerate the benadryl better. This last round I was able to walk under my own steam to the elevator and to the lobby, which is quite a distance, since initially I could barely stand up straight after the chemo was finished and had to get a wheelchair to make it to the lobby.

    KQHill: You are one round ahead of me. Am having the same issue with nose "pouring" after round #8; have had nosebleeds pretty much the whole time. In my "pre-chemo" world I would assumed I was getting a cold, but I'm pretty sure it's the Taxol. I also am clumsy as all get out; as I explained to the oncologist and her fellow, it's not that I can't feel what I'm holding on to, but it's just that my movements seem too fast or uncoordinated or something - anyway, I constantly knocking stuff over and dropping things. VERY frustrating and I hope it doesn't last too long after I'm finished with chemo. Hope you enjoy your business conference in Mexico!

    Zoziana: thanks for checking in. Good to know that there IS life after chemo.

    To everyone, hope you have a good week with minimal side effects. Keep looking for the light at the end of the tunnel, regardless of how far away it is!


  • tsu
    tsu Member Posts: 37
    edited September 2016

    HI MLMSC!

    I am having treatment number 8 this Wednesday. About treatment 4 I started to lose hair, so I went, got it cut short, and hairdresser didn't find bald spots just "thinning" So... I thought since I was going to be a bald person again anyway, I decided that I would dye it platinum blonde. Did it and it was quite a change, went from light brown to almost white! It was fun, but then about a week later, it stopped falling out and started growing again-yikes! Now, coming up to treatment #8 -I am not bald, my hair is not falling out, and it is really short, and a crazy platinum blonde colour! Go figure. I still expect it to start falling out again, who knows???? I do know of other people whose hair fell out and grew, and then fell out again. So you never know. I just try to keep it short so if it does fall out, it is not so messy. I really hate having hair all over my pillow in the morning

    Good luck with it!


  • KQHill
    KQHill Member Posts: 28
    edited September 2016

    Roofcat59, I've taken to bringing a cane when I'm going to be out and about without something to hold onto, like a shopping cart. I'm so afraid of falling! Wheelchairs coming up at the airports too. Even if I don't stumble, I'm going to be tired out. Which reminds me to call the conference and request a room near the conference center. The resort is quite spread out!


  • Imkopy2
    Imkopy2 Member Posts: 214
    edited September 2016

    Finished week 10 today... Yay! 2 more to go... While I'm happy for my progress I felt so bad for the others today. Usually Monday is a very busy day in the infusion room, today it was somewhat if a ghost town. There was only another guy getting treatment and a couple getting hydration, the rest were either sent home or to the hospital, very sad. One lady who is BC patient told the doctor I'm done, I have 2 more treatments to go & im so weak, I can't take anymore. I wanted to cry for her...consider myself blessed for being tolerant of the treatment & pray for all cancer patients out there. Hope everyone has a good week, I'll be thinking of you all <hugs>

  • highhopes
    highhopes Member Posts: 51
    edited September 2016

    Katjadvm and Serenity/STA - thanks for the tips, have been taking B and B12. will add the others to diet.

    Shazz Kelly - WOW! 3 years on Taxol. God Bless!

    Finished my 20th weekly treatment of Taxol. My last sets of scans were good and the TMS are down to 170. My doctor ordered another 12 weeks ending on Dec 5. We're hoping to achieve our goal by then. Wouldn't it be nice to receive an early Christmas. - scans show nothing and TM is zero. What a wish to dream on.

  • farmerjo
    farmerjo Member Posts: 239
    edited September 2016

    Hi everyone -

    I am new to this thread and had a few questions. I just completed dose-dense AC and will start weekly Taxol next week.

    What is the benefit of a weekly lobster roll? Glutamine?

    I have lost all my hair but still have lashes and brows. Can I expect to lose them? I've heard that some women experience head hair regrowth when they start Taxol.

    I am taking GD to Disney next month. MO did not say anything about a mask on the plane..."Only works the first 15 minutes..". Hmmm.

    Thoughts?

  • MLMSC
    MLMSC Member Posts: 31
    edited September 2016

    I've read a few posts of those on weekly Taxol ( after other protocols) seeing hair growth. I don't understand. I am losing my hair on weekly taxol (my initial protocol), how can some have hair regrowth when on weekly taxol?

    Thanks

    M

  • KQHill
    KQHill Member Posts: 28
    edited September 2016

    MLMSC, I had AC first and lost my hair then so maybe that has something to do with it?

    Farmerjo, welcome! I went to Disney World between AC and Taxol and MO had no problem with me being in crowds, though we drove. I think it's just a precaution to use the mask and I'm willing to do it, sooo... :)

  • MLMSC
    MLMSC Member Posts: 31
    edited September 2016

    I see that some of my blood stats are falling/rising and I am concerned that I will have to miss a treatment. Nothing critical yet, but I see a few numbers ( especially white/red blood count) in a downward trend. There are a few others rising that I know can mean potential issues and I suspect my MO will talk to me about it at my next scheduled office visit. I want to stay on track and get the weekly treatment over with, so I can get the radiation and then start to get back to my normal life.

    So, have any of you had to postpone a treatment and if so, did it happen more than once and were you able to have treatment after just missing one week.

    Thanks and good wishes to all!

    M

  • Imkopy2
    Imkopy2 Member Posts: 214
    edited September 2016

    MLMSC- My numbers fluctuated up & down as well...I was nervous because my doctor is pregnant and due a month after my final treatment. I have no room for delays! My recommendation is to keep your nutrition up & you should be good. Like you I just want to close the chemo chapter and move on to rads and get back to my life. Praying for you.

    Farmerjo- welcome and I'm sorry you're going thru this...AC was far worse than weekly taxol. Glutamine helps with neuropathy, my hair started to grow back, I have two treatments left and my lashes and brows are sparse...good luck!

  • tsu
    tsu Member Posts: 37
    edited September 2016

    Hi All

    Had number 8 today. I too am tolerating the Benadryl a lot better. I was really "loopy" for the first few...today not so bad. One time I was slowly walking down the stairs, holding the railing, and my knees "buckled" and I went down the last 4 stairs on my left shin. I was ok, but wow, shin pain, I swore my head off. Anyways, if u feel unsteady, be extra careful. I thought I felt ok-but I think my brain didn't tell my body that I was on the stairs. ??

    Does anyone have to take zoledronic acid (bone strengthening drug) with pre meds? Had my first dose today, just wondering about side effects

    Be kind to yourselves

    Tsu

  • cris8325
    cris8325 Member Posts: 28
    edited September 2016

    Taxol/Herceptin #9 finished today. Wbc is steady falling. Three more to go...

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