Weekly Taxol for Stage 4
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Reporting from week 13:
I lost my eyebrows yesterday! I had a few stragglers, so I got rid of them as they looked weirder than nothing. Still bald, bald, bald. BUT, my TMs are down to 300 (from a high of 2,600), and the Neurontin is keeping neuropathy at bay. Except for the fatigue after the steroid insomnia nights, I'm actually feeling pretty good.
Except that I have gained a pound for every week of chemo. Damnitalltohell. What is it about the steroids that makes you fat? In my case, fatter. I'm not eating more than normal (well - not a pound a week more - sometimes the only thing that makes me sleepy on insomnia nights is a big serving of carbs).
I'm not looking forward to cold weather and bone mets (healing bone mets - giggity!).
How is every one else doing?
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Not sure how liver function and TM's are looking at the moment but I'm in hospital with a pulmonary embolism. Doc says thus is quite common if you are on chemo - surely this can't be true. I don't think they ever mentioned it before chemo started.
Anyway I am on pain relief (lots), blood thinners, antibiotics (for an umknown infection) + oxygen to help me breathe, ho hum
Tillycatxx0 -
Tillycat, NO
I don't know anyone one with cancer that has had that, but my brother survived one. They actually put him in a light coma until he was better. I went to the ER because I thought I had one. Unfortunately, it was liver mets.
I hope that can put you in a light coma until you have healed so you don't have the pain.0 -
Tillycat,
Nooooooooooooooooooooo.
Hope you are out of there soon, with that embolism kicked to the curb. How dare it sully your lungs! The nerve.
Big hugs. I hope you are entertaining the nurses with your sly humor.
Jennifer
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(((Tillycat))) I've never heard of that, but really hope they can get you sorted, out of hospital and pain-free soon.
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Hi all
I have posted exactly this post in another thread so I'm sorry if you have to see it twice - I'm just not up to typing in two diffent things at the mo, sorry
I am still in hospital (what would I have done before wifi? - probably tried even harder to make my escape, although on third floor so not likely to jump just yet!)
I have been loaded up with pain relief, 100mmg fentanyl patches + declofenac 3 x per day + 60 mg oromorph when I need it (up to every hour if ness) I had so much yesterday I kept seeing my cat (Colin) sitting on my bed looking at me - although I miss him it was a bit worrying to have him there with me :-) I haven't had as much morphine today and he hasn't visited either. I may be able to go home on Sat, depends on how I feel and whether Colin has come to visit again!!
Love tillycat xx0 -
It's hard when your brain throws a party without telling you, isn't it? Tell Colin to sit by you and purr the blues away - you must miss him bunches to "see" him at hospital.
Hope you get home soon.
Jennifer the Eyebrowless
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I'm hoping Colin was there to do the reconnaissance for the escape party who are going to bust you out of hospital tomorrow, Tilly! Thinking of you.
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I am home, it's a lovely sunny day but a bit chilly so I am happy to be tucked up and cozy in my bed. Feeling pretty good which is nice because I suppose that the last few days have been a bit of a roller coaster ride.
I dont know about the rest of you but i tend not to think to deeply about things when bad stuff is happening to me I just get on with it - which i guess is why everyone always says how brave we are - I'm sure you all get it as well :-) but after, when thing start to calm down, I think it all through and feel quite overwhelmed and sometimes quite panicky. The doctor at the hospital seemed to realise this - he gave me some lorazepam to have at hope 'just in case I needed them'
I also have blood thinning injections which I will need for at least 6 months. I did the first injection in my tummy this morning and it left a lovely bruise - only another 179 to go!!
Colin and Harley (our labradoodle) have been my shadows since I got back, they are both asleep on my bed as I write this post. Maybe Colin has learnt the art of astral travel and was checking out where I was and when I was coming home :-D
Tillycat xx0 -
Tillycat,
So glad to hear you are home and on the mend (despite the sticks). Tell Colin and Harley that they are to take beautiful care of you, cuddles only, with no furtive farting - unlike my lot who seem to point their nether ends in my direction and let fly when I'm at my lowest.
Lorezapam is a boon when caught out with the "oh my god, what just happened to me?" shivers.
Once again, just thrilled you are home and getting better!
Jennifer
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Gretings to my Taxol Sisters,
I'm checking in after my 8 weeks on the weekly taxol cycle. Got a report yesterday on the first CT scan results since beginning this protocol, and it shows that TMs have dropped several thousand points, liver function is good and appears to now be "stable", instead of deteriorating as at the beginning of the taxol series. So good news to celebrate! I'm still able to work 3 mornings per week (with big naps folowing) during this series and nausea is controllable, so I'll say that this weekly taxol is doable for me. Very thankful about that, since the TAC regimen several years ago was definitely a no go after 1 round!
Tillycat, I enjoyed following your adventures abroad, and was so thankful that you were back at home when you needed the hosptalization! (Very sorry that you needed the hospital stay, though.)
Jennifer, I enjoyed your phrase "furtive farting" from the critters...does that count as aroma therapy?! Ha, ha...
How's everyone else doing?
Gentle hugs and blessings to all for a good week,
Shoshanna
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Shoshanna,
That's fabulous news! Hip hip hooray.
I'm still baldish, but the TMs are down to 151 (from an all time high of 2,600). My counts are good, so off into the future I go.
How's everyone else doing?
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Just checking in with everyone. As of today, after 23 weekly infusions, my TMs are down to 57 (from a high of 2,600).
I'm still bald, but have no neuropathy - thanks to early use of Neurontin, I suspect. My nails are tight (except for one), my head is still very bald, and my nose runs a bit more than I'd like. I'm feeling a bit more fatigue, but am addressing it with Ritalin. That stuff is a life saver. If you are too tired to have fun, run to the Doc and demand this stuff. It makes a world of difference.
Still torn as to whether to continue on Taxol till it doesn't work anymore - either through resistance or intolerable SEs, or to try bigger, better anti-hormonals. I developed the mets while on Arimidex, and in the two months I was on Tamoxifen, my markers went from 800 to 2,600. I am tempted by the Faslodex/Arimidex combo.
How's everyone doing?
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Hi Ladies,
I've just finished reading this entire thread and so glad Jennifer started it!
I just learned today that I will be starting taxol next week....getting port tomorrow....checking out wigs this weekend. One minute I'm ready to cry (and I'm not a crier) and the next I'm ready to kick some cancer butt.
Thanks for all of the info....and I'm so encouraged by the positive results you've had.
I work full time in a high school athletic office so I'll be off for 2 weeks at Christmas. Just hope they don't want me to join the football team because I beef up on steroids!0 -
I had weekly Taxol for 6 months (18 txt) and kept my hair by wearing Elasto-Gel cold caps (from IceWraps). I know that without the Taxol, I likely wouldn't be here today. I do miss the dex when I'm fatigued ; ) But, seriously, the Taxol really worked for me and I'm hoping it works for you ladies as well. Now, get in there and kick some cancer butt. You may actually be able to feel it working. I had pinching and other sensations where my cancer was and that helped me know it was doing it's thing, and it started with my first treatment. Cancer is tough, but Taxol isn't a push over either.
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I just found this thread and also start taxol next week. I will have 3 weeks on, 2 weeks off. I hope I get the good results I've read about on this thread!!
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Bouncing Bettie's, have you Ritilan yet for your fatigue?
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I've been on Modafinil, 100 mg x2, since late September and it really helps. It has fewer side effects than the Ritalin. If not for the Modafinil, there's no way I could work not only full time for the last three weeks but an average of 3 hours of overtime each week. I have to admit though that when I crash, I crash hard if I push myself too hard, but that's to be expected.
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just finished first round of taxol..break next week yeahhhhh. The beginning of the journey
the 2nd journey of course. I love the first one so much i had to do a repeat..loltilltcat I hope you are still doing good and getting stronger.
Hang in there everyone , and thanks for posting more than I. Got to get here more often since this is what I am on now. It weird how you go from one treatment to the next and keep changing threads, cool to meet new people. I feel i just get to know the peolpe on a thread and then I have to leave, oh well, that's part of the journey. Night Night everyone
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Hi Taxol sisters,
Finished my 4 rounds of weekly taxol several weeks ago and am just not starting to get my brain back a little bit! Resuts show "stable" so I'm thankful to be transitioning back to hormone suppressors for awhile! Still having lots of fatigue. Worst part of the taxol journey has been the extensive neuropathy to feet and knees. I'm frequently using a cane when out and about now to keep my balance. Gabapentin was not helpful for the neuro, so will try something else. Wishing each of you lots of healing for the new year!
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puffins,
So sorry to hear about the neuropathy! I'm hoping it resolves quickly for you. I'm starting to get it myself, so I've total empathy for you. I was expecting it in my feet, and was unpleasantly surprised when it set up shop in my ankles and knees. Let me know how you are progressing.
I'm 6 months into weekly Taxol now, and am going to go on a 3 weeks on/1 week off schedule. If my TMs stay stable, we are going to increase the gap between treatments. If my numbers stay stable then, we are going to try a stronger anti-hormonal (I completely failed Arimidex and Tamoxifen). My TMs have gone from 2,600 at the start to 59, as of last week.
So far, my only complaints (besides neuropathy and baldness) are the unrelenting snot and a weird photo-sensitive rash on my hands. And, I seem to have become severely lactose intolerant, and gluten reactive. I spent most of the last week chained to a restroom, but am on the mend now that I've figured out the cause.
Stable is fabulous. Let me know how the anti-hormonals treat you. I will live vicariously through you till I give the Taxol the old heave-ho.
Happy New Year y'all,
Jennifer
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Ladies, please check with your onc and your cancer centre pharmacy first, but I went back on my non-flush niacin and a B- complex that contained benfotiamine after chemo, when my neuropathy started to get worse (which I was told would happen) and it worked! I also used a hand massager from Hammacher Schlemmer but my neuropathy would disappear after I ate pork chops which clued my Mom and I into the fact that it was a B vitamin issue. I take AOR brand B-complex but Swanson also sells Benfotiamine on it's own, so if you need extra, you can add it in, as I do. I really does help. And the modafinil helped get rid of whatever brain fog I had. There are things that can help = )
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Jennifer,
So glad your tumor markers are coming down on taxol. I had taxotere once every 3 weeks along with cytoxin & adriamyacin for 8 months. I did really well and have been stable for 3 years now even with bone mets. I'm also on Zometa & Femara.
vitamin B6 & B12 helped a lot for me with neuropathy. My nails actually became stronger and did not blacken or fall off. I took some melatonin to help me sleep and also had diahrea until my onc told me to take imodium which totally solved that problem. I have a gall stone and had gerd, something like extreme acid reflux for which I take panthoprozole daily to control. I did juice carrots, apples & kale regularly on chemo as I had a hard time eating and needed the enzymes & nutrition.
I'm so glad this is working for you.
Terri
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Thanks for the info bouncing Bettie's and Terri. I copied and pasted your posts so I can ask my onc about it. Just started noticing the neuropathy in my left foot is getting worse. Am on taxol, 3 weeks on, 2 weeks off. Will definitely give it a try upon his approval!
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I just had 12 weekly taxols with no breaks. This is my first ever chemo (just diagnosed with bone mets in September 2012). I am having bone scan, pet scan, and brain MRI this week. Doc says if they look good we may as well do 12 more.
But I am craving a break! Neuropathy feels like stinging ants, nose bleeds, chemo cough, fatigue and tired of going to hospital all week! (I get 2neupogen shots on day 3 and day 5 after the chemo day).
I am interested in a break and also these 2weeks on 2 weeks off schedules.
Would love to have some hair grow back too.
Thanks for all the experience, hope and humor that you all have posted here
Beth0 -
Beth,
Are your white counts terrible? I'm wondering at the 2 neupogen shots. Every week! That is unusual.
It's possible the neupogen is contributing to your fatigue and discomfort. I remember it as being an awful drug. Felt like an elephant was sitting on my chest, and the bone pain was intolerable. Do make sure you are enduring it for a darn good reason.
If you can tolerate the Taxol, more is better. That way, any future stability might last longer. Ask about a three week on/one off schedule. I'm on that now, and the off week is delicious.
All the best,
Jennifer
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There is a balance. Too many shots of nepogen can increase your risk of leukemia. What are your white cells? With this horrible cold and flu season, I can see them wanting to keep them up.
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I am happy to say the taxol (3 weeks on, 2 weeks off) is being very gentle tome. Other than neuropathy in the left foot, I am not having any major trouble. Hands are wrinkly and dry but I'm keeping them lotioned up. Forgot to ask about the B supplements but see him on Wednesday so will be sure to ask. THIS WEEKEND ENJOYING MY 8 year old grandson. Tomorrow we go to Emma's first birthday party. Hoping for some great pictures!
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Had chemo today, #3 of the second round. After just 5 treatments my tumor marker went from 70 to 48. The taxol is definitely doing what we want it to do! Having a bit of a problem with the big D but I'll take that over nausea any day!! Haven't needed neulasta or neupogen ... Yet! Hair is thin Inge a bit but not falling out like it did with taxotere. I'm hoping for a long run!
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hi ladies, just finished my 3rd month. sooooooo glad to hear the stories of those on this for much longer than I. I am hoping to be able to stay on this one for awhile. so far nothing terrible. fatigue and hip pain at night, but doing well otherwise. seem to be getting tired as it goes on, but figured it would. doc told me few get past the 5th month without finger issues. hope he was wrong, I am a hairdresser and it would be quite interesting if my fingers gave me problems...lol maybe I could start some new trends..lol
believe it or not I have enough hair hanging in there to sport a very very short grey pixie. big earrings help sport the look..lol
hope everyone gets a good night sleep
Susan
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