Weekly Taxol for Stage 4
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@glenna...gosh I hope not! I'm counting on getting a year out of this. Seems like I have had to switch out of my last 4 treatments before the 4 month mark. That's 4 treatments I basically got no time out of. I'm ready to be stable for a bit. If I have to deal with no feet, I'll do it till I drop. Thankfully, my neuropathy doesn't come with a lot of pain. Just complete numbness and some aches here and there. Ill keep praying that the neurontin kicks in.
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Geez Pat, hope your feet improve!!! Jo
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hope your feet improve pat...i am with you..not the numbness, but i have gone through 5 treatments and taxol has lasted the longest so far. going on 7 months. hang in there
susan
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I think I might be getting some improvement. Underneath my toes feels like I have something stuck there but the rest of my feet is starting to get the feeling ack in them. Yea, progress!!!!
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Pat, I'm with you .... I want a long run out of taxol. Seems I have had to make a lot of chemo changes also and it makes me very nervous to be running through them. I am almost afraid to mention SE's to my onc and I know I have downplayed the neuropathy. I've had it since my first chemo in 1987 and can just live with it. I'd love to get a year as well!! Good luck and glad to hear it is improving. I've had some swelling in my feet after this treatment but am at my mom's in Florida and have just dealt with it. I think it could be from the long car trip. Here's to long chemo runs!!
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Yes, very long chemo runs and short rides. I'm going to LA for a wedding over Memorial Day weekend. Hoping the plane ride goes well. Has anyone had to fly with syringes? I have to take 2 lovenox shots a day for blood thinning. I know I'll have to call the tsa and ask them, just wondering what any of your experiences might be.
Pat0 -
Frapp, I hope the neuropathy gets better for you soon.
I'm not having any pain yet, just numbness. I've had the same amount of treatments as this time last year and the side effects are not as bad. I do have a lot of nail pain. Anybody else have this? And how to manage? It really feels like I'm losing a couple of toenails.
Also I checked with my oncologist with regards hair regrowth. He was not concerned at all and said that anything is possible with these weekly doses.
So my total Taxol count is now up to 30.. oh I hope I get longer too as I am still feeling so well.
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Glenna...I don't complain to onco for the same reason so he asks hubby
(.
Anko I've had 11 shots of Abraxine since January 3/1 and onco stopped it as my s/e's were visible to him.....my nails are rotting off, neuropathy up my fingers and feet etc. I taped some fingers cause the nails are half lifting (yuck) and I can't touch or bang the ends it's so painful...so till they lift off or...good grief rip off (I'll die) they are taped...now that creates other problems...I can't do anything with my fingers, geez cleaning my ears etc. the tape also makes me more aware so I'm damn careful with them. Nail beds hands and toes are very sore.
I was on 172mg weekly and he reduced it by 20% half way thru my cycle. Se's improved but continued. My head hair started to grow 2 weeks ago.
No chemo till I see him June 19th but hercepton every 3rd week. Jo0 -
Hello everyone I need some encouragement. I'm on weekly taxol , perjeta and herceptin. The weekly taxol is really getting the best of me. I have mouth sores, nosebleeds, broke out into a horrible rash all over my face, it hurts to eat drink and talk because of the mouth sores. Started having diarrhea yesterday but that seems to have stopped. I lost my taste buds and just feel horrible I'm lucky if I feel good one day a week. Please tell me that the side effects start to weaken over time. I don't know how long I can do this. I do it again tomorrow for my third infusion.
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Dear Ready,
It sounds like you are having a rough time. For the mouth sores, I use a rinse of 1 tsp. salt, 1 tsp. baking soda, and 1.5 cups water. I make a fresh batch every week and keep it in the bathroom; rinse frequently. That will keep the sores from forming. For the ones that are already here, ask you Onc for a prescription for "Miracle Mothwash". Its got lidocaine in it to numb the tissues while they heal up. I think the stuff tastes foul, so I use a q-tip and put it directly on the sores, rather than swish. I've also used baby Orajel to numb the sores.
For the nosebleeds, use a little coconut oil gently rubbed up your nose. It keeps the tissue happier. All your mucous membranes will be taking a hit from chemo, including the lady parts, and I can't say enough good things about coconut oil to keep the tissues moisturized. The over the counter saline sprays are also good to keep the gunk in your sinuses loosened up and easier to blow out.
Taxol can make your skin and nails very photosensitive. I have found that using a sunscreen keeps the rash from forming. I get it on my hands badly if I forget. Hit it with hydrocortisone lotion at night, and sunscreen during the day. Plus, you may find you need to use very gentle bath soaps and shampoos. Using thick nail polish is also good to keep your nail beds protected. Since I started doing that, I haven't had a single nail try to lift up.
Taxol can do a number of your taste buds. The rule is to eat whatever looks good. Don't worry about "healthy" eating. A lot of us have found that the crucifer vegetables (broccoli, cabbage, brussels sprouts) taste super weird. Water tastes strange to me, so I amend it with a few drops of lime. You'll find your comfort zone.
Do let your medical team know what you are going through. Especially the nurses. They know all the good tricks and medicines to get you through. For the Big D, I like to keep the liquid immodium handy in the bathroom. That way, if I'm stuck on the throne, I can get a dose down. You may find yourself alternating between the runs and stopping up. Keeping your fiber up on a daily basis seems to mitigate that. Also, on chemo day, ask for an extra bag of fluids, and make sure to drink liquids frequently. Staying very hydrated seems to keep the side effect beast mollified.
If you start to develop neuropathy, ask about taking Neurontin. It's a GABA potentiator, and protects the nerves. I take 400 mg nightly and have no neuropathy at all. None. Not even a tingle. My nurses prefer Neurontin to Lyrica, as they think it works better and is a cheaper co-pay.
A lot of us use Ritalin to manage chemo fatigue. I depend on the stuff, and don't see how people do chemo without it. Talk to your Onc about it. If she's not willing to write the prescription (and some aren't), get your primary physician on the case. Shake the tree until some good meds fall out! Feel free to print out the Ritalin thread on this very forum to get your point across.
Don't forget to be good to yourself. This is a lot to handle, and as sick as I am of hearing the phrase "It's your new normal", it is. And that does take some getting used to. You can manage the SEs. If they get too bad, your Onc will change up treatment, so you don't have to fear feeling like this forever.
Let us know how you are doing. You are in early days yet for treatment, and I'll bet your head is spinning. I promise that it will get easier, and next year you'll be advising newbies. Double pinky swear.
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Ready2win,
Oh, I am so sorry for the extent of your SE's. Blainejennifer gave you some very good advice and I have nothing to add except to try sucking on lemon drops before eating as it will help with the taste of food. You might ask your onc if you could go 3 weeks on and 1 week off to give you a break. That's how I started and am definitely having an easier time than you. Also not getting the perjeta and herceptin so don't know if that contributes to how hard it is for you. Definitely talk to your onc and chemo nurses and let them know how tough it is for you. You're in the early stage of treatment and your body may need time to adjust to what they are putting into your body. Hugs to you!0 -
Ready2win, your young and they want to give nasty cancer a good shot. After 6 weeks they lowered my weekly chemo 20% and it really helped. Possibly that might be in your future, your onco will explain if you ask for your plan. Xoxoxox Jo
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Ditto on the magic mouthwash!!! Out of everything else, the mouth sores bothered me the most! I did 18 wks of taxol and had the h/p every 3...I finished taxol end of February and I'm still on h/p...I can say that, for me, the side effects sucked, but looking back, worth it for the result! I hope you find some relief soon. Hang in there!
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Thank you all you ladies for posting this thread. I have been reading it since I first started weekly taxol (with three weekly carboplatin) 4 weeks ago. I am truly grateful for the generosity that everyone on this site has for sharing advice and experiences.
I have been handling the treatment fairly well. The main SE so far has been fatigue. I am also finding that it is giving my liver a bit of a battering ( particularly ALT and GGT). I do not (cross fingers) have liver mets. I am not sure if this is the taxol or the carbo at work. Has anyone else had this SE?0 -
Good evening friends,
I'm sorry to say that my 4 months of weekly taxol was not enough to keep the bone and liver mets at bay for more than 2 months stability afterwards.
I ended up deciding to retire from my part-time chaplaincy position and began home hospice 2 weeks ago. I'm blessed to be suounded by wonder-full colleagues and friends now, just a differing set of drugs and learning to balance new pain and anti-nausea meds....And....advanced lessons in learning to receive help when asked!
Thank you so much to blainejennifer for starting this thread. It has, quite literally I'm sure, helped extend my life for the past year along with all the wonder-full companions on this journey that I have met here!
Blessings and love and courage and beautiful healing to each of you as we continue to walk this road together!
Shoshanna
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Puffins, I am sorry the taxol didn't give you longer stability. You tell us of your situation with such grace. Your comment about learning to receive help resonates with me. Wishing you comfortable and joyous days in the midst of changes. Saying a prayer for you now.
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Shoshanna,
So sorry to hear that the taxol didn't take care of the liver mets. Being surrounded by loving friends and colleagues is such a blessing. I can remember when I dealt with cancer the first time, in 1987, I felt so awkward re evicting help. A friend from church told me that if I didn't let them help, I deprived them if a chance to feel good about themselves. Since my children were newly adopted and quite young at the time, I accepted help. It was a win-win situation. My best wishes to you as you travel this journey.
Blessings, Glenna0 -
Shoshanna, I am sorry to hear about your progression. Blessings and love to you.
I am sorry I did not respond earlier. I ended upin the ER on Monday. I was very dehydrated and the nose bleeds were so bad. They gave me 2 bags of liquids and an antibiotic. My WBC is at 1.0 so they wanted to be safe. I did not get Taxol yesterday. I only received the herceptin. The plan is to give me a rest for a week and go back at it again next week. My onc was not there yesterday but the NP said that she is going to consider going 3 weeks on 1 off or something to help.
Thank you all for the advice on the se. I am going to start now. I did get the magic swizzle. It does taste nasty but it numbs the sores enough that I can at least eat.
Thanks again!!!
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Ready2win,
So sorry you ended up in the hospital but it definitely sounds like you needed to be there! I think adjusting your taxol schedule to 3 on and 1 off sounds reasonable! Hope they will do that for you!!0 -
Hi Everyone
I have now been on weekly taxol since October 2012. I had my PET scan and the tumours have shrunk amd my oncologist thinks the best course of action is to continue with the taxol until my body can no longer handle it. I suppose I am a bit pissed off that chemo is now my life. Is anyone else on long-term taxol? I was feeling positive but since seeing the oncologist am so depressed, I just want to be happy and enjoy my life, pisses me off I can't control my emotions like I would like.
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Had my taxol I'm Wednesday. Came home and fell asleep as usual. Spent all of yesterday freezing. It was 75 in here and I had flannel pjs on with a flannel house coat covered in a quilt shivering the whole day. Then about dinner time I suddenly was hot, hot, hot and found I had a fever of 100.3. It finally broke about 2am. I seem to do this with every infusion except this time the freezing part lasted a lot longer than normal. I had a chemo break last week so maybe that had something to do with the length of time feeling cold. My onc has done all sorts of testing and can't find a reason for the fevers. She has finally just called them tumor fevers. This is miserable but I guess it could be worse.
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Sammiryan,
You beat me. I've been on weekly Taxol since June, 2013. Another member, rkt, might have been on as long as you have. Do you have the option of taking a break with anti-hormonals? To be honest, I'm rather jealous of your nice long run with Taxol. It looks like I might be developing resistance, and I would have liked to spin this one out longer as I find it very manageable. But, I do understand your grumpiness with weekly chemo. I tried going to 3 weeks on/1 off, but it made my TMs float up. I would really like to go visiting relatives this summer, but feel tethered by the chemo leash.
Frapp,
Has your team considered that you might be having an allergic reaction that isn't completely suppressed? My MO was part of the original trials for Taxol as a youngster, and - from what he describes - your symptoms sound a lot like the original set of allergic responses that made developing the pre-meds routine so vital to administering Taxol. Could you need slightly more steroid on board? Or, if you get 50 mg of Benedryl as part of your pre-meds, ask your MO if you could take another 50 mg orally at night. If it makes a difference, that's a diagnostic indicator.
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Thanks Jen. They actually lowered my Benadryl and I think I'm only getting either 12 or 25. I get 15 of steroid. I don't see her until the 29th but will discuss with her. Thanks for that bit of advice!!
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Sammiryan have you considered antidepressants, they saved my life when I was on Taxol. I asked my mo if the Taxol could be causing the severe depression, she said no. I am so glad that I am on the antidepressants and anti anxiety meds. They saved my life. I know drugs are not for everyone but they really help me with my mood swings and severe doom and gloom attitude.
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Sammiryan -I am on long term Taxol. Did 15 weeks last year straight and this year I have done 16 with no end in sight. I suppose I am very lucky to get a long run with relatively minor side effects. I'm still worried about my nails though. Lots of bone pain this week too so I guesss my blood cells are taking a battering.
I have identified that it's not the Taxol that makes me depressed, it's the steroids. I know this because I have some treatments in France where they give me steroids and some treatments in Japan where they don't. I feel great when I'm in Japan, but when I'm in France for the two days following treatment I am a miserable bad-tempered wreck. I can barely function. So far, I have been unable to persuade my French oncologist to cut the steroids. Will try again when I head back there next week. It's so bad that this is becoming a deal breaker for me. I just can't face feeling like that for 2/3 days of the week.
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Hi Anco66
I have been clinically depressed on Prozac after my third child 12 years ago. The problem I have in long term taxol is two-fold. One, this is my life now, till I die, chemo. Uuuggg. Secondly I have gained 25 pounds and on my little body I look disgusting. I have always had issues with my weight, never been slim but now every time I see a mirror I feel disgust and won't go to fancy events. My family still see me, but all I see is there is going to be no end to this. I asked Onco and he said to exercise, but I get so tired and let's face it, will that help. Has anyone on taxol ever lost weight on this? I don't get sick and I have to admit to drinking to self- medicate myself which I know is not good. Thanks lovely ladies.0 -
I don't know, maybe because I am relatively new at this bc shit, but I like getting my chemo. Yeah the side effects such as nasty tasting mouth and diarrhea, no eye lashes or eyebrows,( I still have hair on my head cut short) sometimes get me down, but when I'm off my chemo like I have been for the past 2 weeks I feel horrible. I can't wait until next week to begin my Abraxane infusions. If I have to take them for the rest of my life I will!!! I wanna see my beautiful grandaughters grow up and enjoy retirement with my dh. Maybe someday I will get tired of treatments and when it comes I'll know when to give up, I'm not at that point yet.
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I'm a little like ma then. If I'm on a chemo break I get anxious. I know chemo is keeping me alive and I desperately want that. True, my SE's on taxol have been extremely manageable so I speak as someone who doesn't suffer too much from this particular chemo. I really hope for a long run before progression or SE's increase.
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Consider dropping the steroids and increasing the benedryl. Works great for me. I'm taking lots of supplements and am having almost no side effects from weekly taxol. Look at the nutritional guide to healing for what supplements.. and exercise and lots of water..
I still have hair 9 weeks onto weekly taxol! Crazy! I started a new job last month even though I'm stage 4..0
