Weekly Taxol for Stage 4
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Marian I'm so sorry to hear that you are going through all of that with the pain. I was on a fentanyl patch and morphine sulfate every 4 hours, it took us a while to find the right combination of pain meds to keep 10/10 pain under control but that's what worked for me. I was also on gabapentin, which addresses nerve pain specifically (and I'm still on it for the neuropathy). The patch was key because it eliminated the rollercoaster of pain meds wearing off and smoothed everything out. . Yes, I lost use of everything from my shoulder down to my hand, couldn't even pick up a piece of paper, had to do everything with my left arm/hand. Until the chemo started working everything from my shoulder to my fingers would also swell like a balloon if I didn't keep my arm propped up with pillows. Thankfully my sister-in-law came and spent several weeks with us to help take care of things.
It didn't take long for weekly Taxol to start giving me relief last time but it was several months before I regained full use of my arm. This time with dose dense Taxol I think I'm going through some tumor flare because the pain has been increasing, but still not bad enough to want to go back on opioids yet. Too soon to tell if it's working this time. I'm icing my feet this time in hopes of preventing further damage.
Hope the chemo gives you relief quickly and that you find the right combination of pain meds.
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Fentanyl according to my team, is not effective for my kind of neuropathic pain. Am praying that Paclitaxel will actually shrink something. There has been no change in tumour size since the diagnosis in August 2017 and in fact the mass has grown further around the neurovascular bundle. I have to say that I am a mess of stress and actually look forward to chemo tomorrow LOL.
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I understand that, it was actually a relief for me to start chemo again too.
The fentanyl I was on may have been for the skin mets, my IBC had ulcerated at the time. Between all of it I was in so much pain I was out of my mind. It's the gabapentin that it is specifically for the nerve pain (some people take Lyrica if they have problems with gabapentin), but I only take enough to dull the pain and I doubt that the gabapentin alone without the morphine would have been enough.
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Is anyone on the pill form trial or has looked into it? It seems like it might be a very promising solution to the IV route.
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Daniel86, pill form for what drug?
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Taxol
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Link to the trial? I know there are a couple other taxanes they are trying in pill form (CONTESSA is tesetaxel in pill form plus Xeloda, but I'm not HER2-) , but I can't find any info about Taxol - paclitaxel, in pill form.
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Sorry LoriCa, my bad. I mispoke. I meant the CONTESSA trial. I didn't realize it wasn't Taxol but another taxane.
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No worries Daniel86, all the taxanes can be confusing. It would be nice to see Taxol in a pill form since it's the cheapest and I believe still the most widely used (and for me personally, one that I respond to and tolerate well), so you had me curious.
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I did ask and not known here in my cancer center anyway.
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You got me thinking and ended up googling to find out that there is indeed a Taxol pill trial. Unfortunately it's only for HER2- folks and as a first liner. I wonder why as it seems to me taxanes are broadly used.
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Interesting, I didn't find that one probably because I was searching for "tablet" and "pill" rather than "oral". I see that it's in RoK. Will be interesting to see how it goes.
My guesses on why only HER2- and 1st line - most people are HER2- (bigger benefit) and HER2+ is a bit more stubborn, can skew results. After they get a baseline on HER2- I would think they would take a look at HER2+. And first line only because toxicities from taxanes are cumulative, so to get a true picture of toxicity it needs to be 1st line treatment.
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Thanks lorica and pboi...
Yes had faced constipation alot but been tackled by laxative and herb... By the grace of God...
Mets are lungs, liver and bones... Still the pains come and go on their own but sometimes untolerable.... As my strengths are drained out literally in this reoccurrance:(...
Is it due to Taxol or something else going inside... Scans are not in near future so scanxiety killing me already...
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I made it 13 treatments before my anemia levels made my MO decrease my dose for the next treatment. I have no idea if that is good or bad.
Anyone out there who has experience with this?
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leftfootfor, what is your dosage? And is it Paclitaxel? Mine is weekly for three weeks then a week off which translates to two weeks off. Math is not my strongest suit so at first I thought it would be like my Xeloda, pills twice a day for three weeks then a week off. I have just finished the three weeks for the first time and so far so good. I am ER+ and PR+ and HER-.
Up at 0500 this AM, probably the leftover Dexamethasone. But I have got 3 trays of my grandmother's ice box cookies with candied maraschino cherries in some, coconut in the others. My boys' faves. I am hoping that I will be up on my own for a while yet. Interesting US News on.
Marian
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I'm on Abraxane weekly. I've had a good six weeks break did to the se's. Will start back after New Years. Not looking forward to it after five months on it, but it's working, so I'll do it!
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leftfoot many women have to go on a reduced dosage or stop altogether when Taxol affects their blood counts - anemia, neutropenia, low platelet count. I seem to be one of the "lucky" ones whose blood counts never waiver on Taxol. Was on weekly Taxol for 5 months last year, this time doing 3-week dosage. I thought the higher 3-week dosage would make SEs more severe but I honestly think this is easier than doing it weekly, at least so far.
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Hi lorica
Wish you all the best on Taxol...
Did you feel lower abdominal pain with taxol???
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SanJF I do get some sharp pains in my lower abdomen occasionally. In my experience Taxol can really mess with your GI system and I think that's what causes the pains. Right now it's just at the annoying level for me, no big deal honestly, doesn't happen often and when it does it's usually after I eat.
Last time I was on Taxol I had to stop after 5 months because the abdominal pain was severe and constant and my lower GI tract was completely trashed. I tolerated it fine for several months, then all of a sudden began having problems. After the last dose, for 8 days straight I couldn't even take a small sip of water, let alone eat anything, without going into spasms and having to run straight to the bathroom. I wanted to die and thought I was going to. My body went from tolerating Taxol without a problem to completely rejecting it overnight. We're keeping a close eye on my symptoms to make sure it doesn't happen again, at the first sign there's any indication of trouble we'll take me off Taxol, but so far everything has been fine.
We all have different pain tolerance levels and mine is pretty high, but if the Taxol is causing your abdominal pain, I wouldn't stress too much if it's just occasional because in my experience it is a SE of the drug. If all of a sudden you start experiencing uncontrollable explosive diarrhea that gets worse after every infusion, definitely worry because you might be having the same severe reaction I had. Taxol can cause constipation or diarrhea, some is expected and shouldn't worry you, but you'll know when it's so bad that it's dangerous.
Hope your treatment goes well!
Lori
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Lots of love and pray for your treatment!!!
Yes it's occasionally yet mild to severe... But along with no appetite... Facing constipation too...
Onc said that its not somewhat because of taxol... Its your thoughts that are damaging Ur GI too... As I have had stomach and GI issues in the past aswell...
So keep in touch... Stay strong dearie!
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Hi All,
Well I am moving on again with treatments, unfortunately Doxil didn’t work out to be long term for me ;(
So I am actually starting Carboplatin and Abraxane three weeks on, one week off, next week and I am nervous. It was suggested that I join this thread also, due to the fact that the treatments are close in nature.... anybody have any experience with the combo? I am actually going to cold cap, I am desperately trying to keep my secret. Any advice would be so appreciated.
Hope all are feeling well
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Hi dear
Anyone experienced low BP 90/60 on taxol and loss of appetite
Plz respond
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SanJF- I lost 29 lbs when I first started taxol sndceatingvwas not a priority. Several months later things seem tobhavecdrablrized and I dm no longer losing weight.
I can’t speak to low BP as I am on BP Meds to help my heart recover from Herceptin and perjeta. So my numbers are lower than normal.?
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Dear friends,
although I am a member of the list I do not post often. My wife has just exhausted all hormonals and is starting weekly taxol (3 weeks on 1 off) next week. I was wondering if there are any long runs on Taxol. Any info regarding metronomic chemo (some kind of maintenance low dose chemo) is highly appreciated as well.
So far we have been fortunate enough as hormonals kept her NED or stable for 7 and a half years.
Many thanks for your consideration.
Grigoris from Greece.
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Dear friends,
although I am a member of the list I do not post often. My wife has just exhausted all hormonals and is starting weekly taxol (3 weeks on 1 off) next week. I was wondering if there are any long runs on Taxol. Any info regarding metronomic chemo (some kind of maintenance low dose chemo) is highly appreciated as well.
So far we have been fortunate enough as hormonals kept her NED or stable for 7 and a half years.
Many thanks for your consideration.
Grigoris from Greece.
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Just started Taxol on Friday. Sunday - around my jaw line near closest to my ear swelled up, felt like a muscle cramp too. It’s still sore and swollen but not as bad.
Tried Benedryl per on call doctor but that doesn’t make big difference.
Any ideas?!
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I will be starting weekly taxol tomorrow morning. The plan is to do it weekly for 8 weeks then 3 weeks on and one week off. I have been reading the posts on this thread,but I have a lot more reading to do. The thread seems to be quiet lately. I don’t know if that is because not many people are on taxol or if people just have no issues to post about
Hugs and prayers from, Lynne
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Hi Lynne, I had to discontinue Taxol last month because I was resistant this time around, but since I've been on it twice so far (weekly the first time, and the 3-week dose the second time) I'm happy to answer any questions you may have. One thing I will recommend is that you give some thought to icing your feet and hands because the neuropathy is no fun at all if it affects you. I didn't know to ice the first time and luckily only had only minor problems with my feet (and none in my hands). My neuropathy worsened drastically while I was on Herceptin so I did ice my feet the second time I did Taxol to prevent it from getting any worse. Some of my friends have it so bad they need to use walkers or canes, others had to discontinue Taxol because the neuropathy got too bad, and I'd do anything to prevent both of those situations.
Hope the taxol works well for you and that you have minor SEs.
Lori
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Hi Lynne,
I'm here but not exactly on weekly Taxol, but Taxol/Gemzar. I've been getting dose dense Taxol and Gemzar week 1, Gemzar only week 2, and week 3 off. Been at it 5 months now and SE have been minor.
I recommend icing hands/feet if possible. I've had no neuropathy yet, so I think it's helping so far. I also suck on ice chips, and changes in taste have been pretty minimal.
Praying for you that all goes well tmr.
PB
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Lori and PB, Thank you for your advice. Did you use cold gel gloves and socks, bags of ice, or some other method to ice your hands and feet?My MO warned me that neuropathy is the most frequent SE of Taxol and that he considers it a reason to discontinue that treatment. I have had to change treatments too often lately, and I would like to stay on this one for a while. Avoiding neuropathy sounds like an excellent idea.
Hugs and prayers from, Lynne
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