Weekly Taxol for Stage 4

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  • springwatch
    springwatch Member Posts: 548
    edited February 2015

    This thread is very quiet...

    How is everyone doing?

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  • Aoibheann
    Aoibheann Member Posts: 555
    edited February 2015

    Still hanging here, Springwatch. Tx #50 and ct scan on 24th. I've been feeling very low and fatigued for the last few weeks which is a bummer as I thought I was beginning to tolerate taxol better. How're you doing? Did you watch that prog last night on BBC1 aboout the Royal Marsden and their research on cancer and genetics?

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  • NYCchutzpah
    NYCchutzpah Member Posts: 415
    edited February 2015

    Getting my 5th dose of taxol tomorrow, hair is very thin and shedding a lot. I do have a wig and plenty of scarves. So far the hair thing is the worst side effect. Just wondering if I will last long enough for the hair to grow back. I am determined not to go anywhere at least until after Jan 2016. My first grandchild should be here sometime in late Sept. and I will see her/his first winter holiday.

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  • smiley47
    smiley47 Member Posts: 215
    edited February 2015

    I've been on taxol since july/august, shaved it at the beginning because it had grown back wiry and curly from last taxol. I had a three month break from chemo went back on and expected it to all fall out, so shaved it and it is gradually and very slowly growing back in straight and grey/white

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  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited February 2015

    after a 6 week break over the Xmas New Year period because of side effects Ive started back on Taxol on a reduced dose. So far so good I had no 65 on Tuesday.

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  • springwatch
    springwatch Member Posts: 548
    edited February 2015

    Aiobheann, I watched it on i-player this morning. (Last night was reserved for Wolf Hall). They are doing some brilliant work with targeted therapies but I thought the most promising were the results they were getting from immunotherapies. I am thinking of the lady with melanoma who had mets to her lungs. It was a shame there were no ladies with advanced BC shown, especially as it is the most common cancer effecting women. Although I suspect the lady with the ovarian cancer may have been BRCA 1 or 2 as her mother had had BC. I thought the 82 year old with advanced prostate cancer and the 10 year old with the rare tumour showed that given to the right patient some of these new treatments can keep the disease under control for years.

    I am doing OK at the moment on gem/carbo. My tumours have shrunk, there is reduced activity at all disease sites. Overall my last scan about 2 weeks ago was positive. The carboplatin knocks me for 6, the gemcitabine is easier to tolerate. I only get carbo once every 3 weeks and gem in weeks 1 and 2 as part of a 3 week cycle. My hair was growing back nicely after taxol did it's worse but I had RT for skull mets in Dec and I now have 2 large bald patches. Today, I detected a hint of fine stubble in the bald areas so hopefully they will fill in eventually. This is my week off treatment and I have more energy. I spent 15 mins in the garden doing some light pruning, The first time I have done anything out there for months. Sadly, I left my reading glasses on the top of my head and now I can't find them. I hope they are not on the compost heap!

    I am sorry that the taxol is leaving you feeling exhausted. It is/was my favourite chemo and I tolerated well. Good luck with your scans on the 24th. Do check in with your results.

    NYCchutzpah, Hair loss was the worst side effect for me but after about 3 months it was starting to slowly grow again. Curly and very white. Congratulations on the upcoming birth of your first grandchild. They are so fun.

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  • diana50
    diana50 Member Posts: 2,134
    edited February 2015

    Hi Taxol Peeps

    good to hear from you, the thread has been quiet.  Sping I am happy for you that your scan was a good one and your cancer is responding to the chemo.  it is so hard doing this stuff. nice to know other peoples hair is white, straight and gray.  I have the same stuff; duck feather.  it seems my hair has stopped falling out; I am getting a clean up trim next week for some shape. 

    had a clear pet/ct scan jan 19.  all the mets around my kidneys; ureters had disappeared.  tumor marker still in the 300s;  onc decided to keep up the taxol into march; scan...and see where we are.  I hope to move on to something less toxic.  I have not thought this taxol is an easy chemo at all.  I hope you Shazza are feeling better with that break. 

    I have had 24 taxols.  thank goodness my shingles have cleared up although the skin where the rash was is still very sensitive.  no necklaces or clothing can tough the area.  feels like a really bad sun burn but WAY better then December and January.  hope you all had the shingle shot because you never want shingles.

    wishing all good days; and tolerable hard days.  hang in ^5

    diana

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  • Dana_27
    Dana_27 Member Posts: 45
    edited February 2015

    Hi Springwatch.

    My name is Dana, I'm a new Weekly Taxol (single dose) indefinitely..

    I have stage IV mets to liver bone lungs lymphnodes pleural space, pericardial effusion space (fluid building up) and brain!!!! UGH. Sounds like a lot when you write it out. But I'm still standing! Like you women too. I could use a few friends on here to help get through the taxol infusions. I'm only on my second treatment (will be this Monday) I am scheduled for chemo Mondays. Any advice or support you can give will be appreciated. I had taxol in 2003 but was dose dense and only 6 weeks I think? So now I'm wondering how it's going to be doing it until it stops working.

    Will it work? So many questions..

    I just finished up 10 whole brain radiation treatments for the brain mets. Got through that...with the help of the boards too.

    Thanks for befriending me in advance 💕

    Dana

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  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited February 2015

    hi Dana, welcome to our little group. There are a few of this who have been doing this for a while. It does have its moments but I think it's easier than a lot of chemos. I've been doing weekly taxol since Sept 2013 and it's kept me stable all this time. I hope to get a lot longer on it.

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  • springwatch
    springwatch Member Posts: 548
    edited February 2015

    Hi Dana, Welcome to the weekly taxol group but sorry you have joined. I only did 21 weekly taxol IVs before it failed me and I had to move on. As Shazza says there are several here who have been on it a long time and can offer you a wealth of experience. I still look in as it was the first place I posted after I was diagnosed with mets. I mostly post on the liver mets thread these days but like to look in and check up with those who first held my hand when my cancer returned.

    Shazza, I think out posts may have crossed. I hope you enjoyed your chemo break. I hope the side effects don;t hit you too hard now that you are starting your taxol again. 65! it's mind boggling.

    Diana, I didn't realise that your kidney and ureter mets had disappeared on your last scan. That's amazing news. I hope the taxol continues to do it's job. Are your TMs a good indicator of your disease? Have they come down much since you started taxol?

    Paying the price today for my little bit of gardening yesterday. My hip (the one with cancer in it) is very stiff and sore. Upped my naproxen to hopefully get some relief.

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  • Dana_27
    Dana_27 Member Posts: 45
    edited February 2015

    hi Shazza ! I love your avatar pic! Looks just like our cat! 😀hi Springwatch 💕 thanks for welcoming me. I am hoping taxol works for a while as well. I know my MO could of chosen a harder regimen, so I am grateful it's Taxol to start. I am heading to NY today for baseline scans PET/CT. I'm on steroids the brain radiation and now have to fast until 4pm! I'm sure I'll be a gem to be around today! 😜 my MO's plan is to get this baseline..continue taxol weekly while monitoring TM's..my TM's are almost 1000 right now 😢and in 3 months rescan to see how things are. If not working then on to some other drug. And that's how my life will continue. I'm happy to have OPTIONS! Except in 3 months they also have to do a brain MRI to see if radiation killed the 5 lesions I had...not sure what would happen if it didn't because I can't do anymore radiation to my head, and chemo doesn't cross bbb.. Well...As long as she has options to give me nj the IV..then I'm here with my kids and family. Right? Quality of life is important to us all tho. So my feeling is based on what you've said is....taxol has quality of life even when you are 30 treatments in? I know I should just focus on each week and not that far...it's my hope that keeps me ahead. I can't let the fear of it not working get me.

    Sorry if I'm rambling...I appreciate your "ears" ❤️❤️❤️🙏🙏 hope everyone has a great weekend and I will be praying and thinking bout you all!



    Dana

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited February 2015

    are there protocols for whether the Doc orders taxotere every 3 weeks versus the Taxol weekly?

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  • diana50
    diana50 Member Posts: 2,134
    edited February 2015

    Dana. Welcome to our group. My TMs were in the 800's when I started taxol and now in 300, don't know latest count but the taxol not only dropped the TM but cleared the cAncer out if my belly. My TM are very accurate for me.

    My experience on weekly taxol is usually third day after infusion is hardest. After steroid wears off. Be sure they are watching your magnesium levels because even with supplement I need IV mag after infusion. This started after a few months of taxol as over time it drained the mag out of my body. DiareahhA day 3-4. Usually recovered two days before next chemo. Drink a lot of fluids. I used pepto Bismo. For me the more i do the harder it is. Some cycled easier then others. Hair started falling out after two chemos. I shaved my hair. It comes back white and fluffy. No eye brows or lashes. Lol

    Dana good luck. Taxol is a good chemo. I have three more then another scan. Then we go from there.

    Beat mom

    I don't know about protocol taxol vs taxotere It seems taxol @ three weeks is used most often. I had taxotere back in 2002 TAC. Google it. Most studies are with taxol @ three weeks.

    Best to all

    Diana

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  • Aoibheann
    Aoibheann Member Posts: 555
    edited February 2015

    Hi Dana, welcome to our group too. I've been on taxol since Jan 2013, starting out on weekly infusions, then fortnightly and now every three weeks. I'll be having #50 on the 24th. Like Diana I find some cycles easier than others. Fatigue and neuropathy are the worst SEs for me but it's kept me stable so far. Nails drying out and contracting etc can be a big problem while on taxol so it's best to keep them short and protected by nail varnish. I paint mine with Sally Hanson 'Miracle Cure' to keep them moisturised and put a top coat of very dark polish (deep purple/black) to prevent UV rays penetrating. Some people take vit. b12 and other supplements to help with neuropathy but my onc doesn't allow any supplements so check with your onc to see what their view is. I'm on Lyrica which helps with neuropathy and nerve pain but you may not have this SE. Day 3 after tx is usually my worst day for nausea but I pre-empt this by taking stematil and valoid. Also I find dairy doesn't agree me. I'm on fairly strong painkillers so the big D isn't a prob for me as it counter-acts the big C the painkillers cause (too much info. I know, I know). My hair fell out about six weeks after starting taxol and started growing back when I began the three weekly cycle. It's grown back thin (especially on top), straight, flat and white/grey, v. aging (oh vanity, thy name is woman...) with scanty eyebrows and lashes. I dyed it initially and it started to fall out again so I've resigned myself to looking white and ancient but, gratefully, here! I have 'dry' eyes (which water a lot) and 'sticky' eyes on ocassion which is another SE. I have to wear sunglasses out of doors because of this. Oh and you may have a leaky nose because your nose hair falls out too! Having said all this, very many people find taxol one of the easier chemos. Take care, hugs xx

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  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited February 2015

    Dana I'm another who would have to agree with day 3 being the worst. I actually have found working on chemo day and having that day off works better for me. I also found getting my dex dose reduced down as low as possible helped as that's what causes the day 3 crash. I'm another that gets the big D usually from day 4 for about 3 days but it's not to bad and there are plenty of meds for that.

    I'm lucky that I'm not really affected by neuropathy but I know that it can be a real problem for some people. I haven't needed to take anything for that but I'm sure the others will be able to chime in with some advise.

    I will ditto wearing a dark nail colour as Taxol can do a real number on them. I have been very diligent with my fingers and have had very few issues with discolouring and lifting nails. Unfortunately I can't say the same for my toe nails. Quite a few of them lifted and getting rid of the resulting fungal infections that grew under neath has been an on going project.

    My dark hair fell out fairly quickly and grew back white. After a year of and a 6 week break its short but doesn't scream Cancer paient. On my break my long lost eye brows and lashes have made a return. Yay.

    Hope they stick around

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  • springwatch
    springwatch Member Posts: 548
    edited February 2015

    I forgot to mention nails. My fingernails are brittle but doing OK. My toe nails are terrible, especially the big toe nails. I fully expect some of them to lift and fall off.

    I kept all my nails trimmed short but for some reason my toe nails deteriorated to a point where I may never put on a pair of sandals again.

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  • NYCchutzpah
    NYCchutzpah Member Posts: 415
    edited February 2015

    So far for me day 2 is the best. The steroids given during the infusion still have a nice effect on me and give me energy at least until the evening. Question when did you shave your head? My hair is darn thin now and I'm debating when I should do it. I do have a wig and plenty of scarves but I'm putting off shaving for the last minute. So glad to hear that Taxol works for a long time for others, hope it does it for me. Gmemzar only worked for me for 9 months,

    Charlotte

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  • diana50
    diana50 Member Posts: 2,134
    edited February 2015

    my hair started falling out after 2-3 infusions. Your scalp will start to tingle. Feels like a little sun burn. Then hair starts to go. I think with the taxol you may not lose all your hair. For me I wanted a consistent look. Lol. So I shaved it. Hair is a different color and texture. White/grey and fluffy. Keep finger nails and toes nails short. The nail comes off bed. My toes are worse then fingers. The steroid is an upper but there is also a crash when steroid wears off. 😱

    Hope taxol does its job. !!

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  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited February 2015

    Diana when your kidneys were affected. What did your blood work look like particularly Pottasium etc. I had lesions in one kidney which taxol did a number on early on and my scans have been clear but now my body salts are increasing at each set of bloods especially Pottasium which is a sign my kidneys may not be working properly. They are just monitoring at the moment but may bring my scans forward if it continues to rise.

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  • diana50
    diana50 Member Posts: 2,134
    edited February 2015

    Shazza

    My creatinine and bun levels were high. They elevated very fast but b/c the ureters were blocked. My kidneys are still swollen. My kidney doc moniters kidneys with ultasound, urine sample and creatinine levels. Each week I get a copy of my blood work and keep track. The taxol cleared out the cAncer wrapped around ureters. You want to know Metabolic bloodwork. Kidney failure or issues raises creatinine. Other stuff can be affected too.

    Best.

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  • Dana_27
    Dana_27 Member Posts: 45
    edited February 2015

    hi diana50 and everyone! Thank you ALL SO MUCH for the input! I am so appreciative. So encouraging to hear that your TM's started dropping and yu were Hugh like I am Diana.

    Gives me hope.

    Don't care about the hair. It's been gone for a month because brain radiation took it. I lost it all by the 5th brain rad. Was told it wouldn't grow back on Taxol and I'm ok with that. (Won't have to shave my legs in shower for a while) and summer is coming so bare legs without the fuss is a plus! Lol

    It's the lease of my comolaints or worries..but it is a legitimate huge SE. Don't mean to minimize it for others.

    So far you are right on, day 3 worst fatigue. Also the big D...well I call it my "toddler moments" I just melt down and cry if I feel the slightest bit stressed or even for no reason...just talking to someone I will start sobbing. Then I feel better but also worse because I know it was not "me" and random? So that's the steroids! I'm thinking yes it is. Day 4,5 let down. Right now I'm on a 10mg bag infused before taxol on Monday and also I'm tapering down from a 8mg Dex daily dose from brain rads.

    That's got to get better once in done w the tapper. Should I ask her to lower the mg's getting infused? Do you get 10mgs before each taxol?


    Xoxxoo thanks for answering

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  • Dana_27
    Dana_27 Member Posts: 45
    edited February 2015

    And one more thing Disna!!! 3 more!!!! Way to go!! That's almost to the finish line my friend!

    (Cheering you on from the sidelines))

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  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited February 2015

    Dana I was on 10 mgs of Dex and I couldn't sleep at all so I spoke to my Onc after I had been on it a while and we started reducing it. I'm on 2 mg now and feel much better for it. No 3 day crash.I also got one of the antihistamines changed as it made me quite doolally and I needed to be able to drive to work after chemo. If we are going to be on these treatments for a while then we need to be able to change things around to suit.

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  • Dana_27
    Dana_27 Member Posts: 45
    edited February 2015

    thanks Shazza.

    I will see about lowering the dose of the IV bag today when I go. You're right we have to be on these for the rest of our lives, we have to speak up and no it's comfortable for our own bodies. Everyone reacts different everything. Right now my biggest concern is not knowing what is coming from the damaging side effects of brain radiation or a damaging side effects of being on steroids. I feel like the only way to find out is coming off the steroids completely but I never will because I keep getting through the IV every week with Taxol.

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  • Missy328
    Missy328 Member Posts: 31
    edited February 2015

    I have had six weekly tx with Taxol and my nails look like they did when I took prenatal vitamins! I think it may be because I take 2500mg of biotin daily. I also completely changed my diet, eating no sugar and a lot of veggies. I've noticed the third day being the worst for fatigue and nausea, also. I have had some muscle aches like the flu, rash on my hands, red splotches on face (very temporary), numbness and tingling in some fingertips, and loss of most of my hair. I finally had it shaved! My liver enzymes were elevated but the ct scan was fine. They may adjust my dose. The decadron keeps me up the night of tx. I do feel more emotional and am on antidepressants, but I thought it was because I was just dx on Dec 23. On thebright side(and we NEED them!) is my rash (IBC) is almost completely gone!

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  • Aoibheann
    Aoibheann Member Posts: 555
    edited February 2015

    Having #50 tomorrow and CT scan. Feeling anxious...

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  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited February 2015

    Aoibheann good luck with your scans tomorrow. And Taxol no 50. Who would have thought we would get so many. I just off out the door to chemo for no 67.

    Hope everyone else is going well.

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  • Aoibheann
    Aoibheann Member Posts: 555
    edited February 2015

    Shazza, good luck to you too. #67 is amazing, long may it last! Take care xx

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited February 2015

    In the bag Aoibheann for your scan tomorrow. How long do you have to wait for results?

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  • springwatch
    springwatch Member Posts: 548
    edited February 2015

    Good luck with your scans, Aoibheann!

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