Weekly Taxol for Stage 4
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Linda and Groovy, so sorry you have to move on. We will miss you here.
Chemo tomorrow. October... in the chemo lab... yuck. It will all be so very, very pink.
Because the cosmos has a quirky sense of humor, October 1 was the day I got the phone call with my Stage IV news, seven years ago. Happy Pinktober, oh yeah.
This is my tenth month on weekly Taxol, and today marks the beginning of my 8th year on continual treatment. I usually march on like a good soldier, but tonight I am feeling oh so tired and weary. I have so much to do and my energy is waning. I feel like I could stay in bed for a solid week. But life. Family. Meals. Deadlines. Commitments. I don't know how we all do it, honestly.
I really do wonder how we all manage to keep this up for years and years.
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Thank you Lulubee - I will keep this thread in my favourites - I want to know how all you girls will be doing on Taxol. I'm tired too, all the time.
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I would like to know how long everyone has been on Taxol. I wanted to take a few weeks off at Christmas to have some kind of quality of life, but was told no. Honestly, I have no QOL. I don't know how much longer I can deal with this.
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I’ve been on Taxol for 4 years. I take 6 weeks off at Xmas every year.
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January will be a year for me.
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I start my ninth month next week. I could keep doing Taxol as long as it is working but It has been a hard adjustment for me to go from being very active to not feeling like doing much. I started SSRIs a few months ago and that has helped some. I also have been knitting quite a bit so that I can stay busy when all I feel like doing is sitting. I am older and retired so I think it probably easier on me than those of you who are still working or have children still at home.
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This topic seem to be a little dead. Are there really not that many stage 4 on weekly taxol?
I hope someone will respond to this. I started taxol about a month ago - so far I have had 3 infusions. However I had a break after round 2 because of severe neuropathy and I was uncertain if I could continue with taxol. Neuropathy was really bad - but almost the only SE I had. Now after 1 week off my dose has been lowered and I hope it will solve the problem. I'm on day 3 now after the 3rd infusion, and that was the day the neuropathy went wild the first two times. Now I'm anxiously waiting what is happening the next couple of days. I hope I can continue a while on this medication as I feel that my liver pains have lessened.
I'm fasting 36 hours before infusion and 24 hours after (water-fast). This has worked extremely well. I'm a little tired after the infusion - but that's all - and it may also be because of the fasting, because I seem to be tired even before the infusion. Next day I'm alright again and when I start eating I feel totally normal and energetic. Hope this will continue as I progress with the infusions. Anybody else fasting?
Only problem with the fasting is that I'm loosing too much weight - I haven't got that much to loose so it's not good. And it's really difficult to eat that much for the remaining days to catch up with the lost kilos.
Today I had kind of diarrhea. Don't know if it's something I ate - or the taxol. It's not a big thing, but not good for my weight so hopefully it will stop soon. Anybody else having diarrhea on taxol?
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Hi lisbet54, my mom is on weekly chemo. I don't know how long she will be on this routine for, but the doctor did mention for 4.5 months for now. She's already gone through 8 times of taxol. Mom did take about 3 weeks off in Oct due to dental work. Now that dental work is out of the way, she will be back on the weekly taxol. So far, she hasn't experienced neuropathy. She has some diarrhea usually on the day of Taxol after she comes home. But it's only on the day of Taxol. Then on day 3-4, she usually feels very tired and sleepy, and sometimes a little gassy in her stomach. We have adjusted her lunch to a light one that consists of mainly vegetables and soup usually on Day 3-4, so that helps with the gassiness. My mom is also losing quite a bit of weight, but that's partly because we changed her diet, to very low sugar and salt. She also has diabetes, so we also cut down on carbs. She eats wholegrains, or wholemeal. We limit her fruits to 2 servings a day. The rest are vegetables, juicing, lean meat protein. Mom also does morning walks for 30-40 mins everyday. I think these changes did contribute to the weight loss. But she's eating healthy, albeit smaller portions than it used to be.
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lisbet, I am still on weekly Taxol. It's been almost a year for me-- I started in January 2017. It took six months for neuropathy to hit me, but it advanced pretty quickly, so I also had a week off and then a dose reduction. That was a couple of months ago, and it has helped tremendously. I still have some neuropathy but it is not to the point of scaring me, like it was before.
I do have some diarrhea every week. I just plan to stay home on Big D day because I never know when it's going to hit.
Can you explain the purpose of the fasting? I have been told to eat before and during infusion! Weird how we are told different things.
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Thanks for the input.
No neuropathy today - and diarrhea is over. So hopefully it was just something I ate. Actually I had quite a bit of constipation the first couple of times.
Lulubee: Fasting is not something recommended by my oncologist but done on my own initiative after having read quite a bit on fasting in relation to cancer. A couple of years ago a lot of research was released on the influence fasting could have on cancer and especially in relation to chemo-therapy. It seems like people who are fasting have fewer SE ( - especially in relation to vomiting, nausea, diarrhea, fatigue and feelings of weakness). And fasting seems to protect the healthy cells better. There is a thread here on breastcancer.org on fasting during chemo (https://community.breastcancer.org/forum/69/topics...) - unfortunately it seems to be 'dead' at the moment. But reading through the thread people seem to have had great results.
As this is my first IV chemo I really cannot tell if it is making any difference, but so far apart from the neuropathy and hair loss (on which fasting sadly doesn't seem to have any affect) I have felt all right. And I really hope to have fewer long term problems - it's indeed worth a try.
The research was initially done by Dr Valter Longo. There is one link here to the research: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC36086... but you can indeed find much more by looking into the relation between cancer and fasting (starvation) and Valter Longo himself, where you can also find a number of interviews as well.
My understanding is that many onc.s think it's worth a try (if you apart from cancer itself are "healthy" - that is don't have other diseases) - and don't mind the discomfort connected with going without food for a couple of days. Of course it's a bit tricky with the weekly chemo because you have very little time to 'put on the lost weight'. I hope I shall be able to continue.
I'm also trying to do a ketogenic diet in between. This is something new to me - and very difficult to adjust to as I'm a vegan. I find it hard to get all the calories I need in between on a vegan diet. Sugar hasn't been part of my diet for a very long time - but carbohydrates (fruits, grains etc) have and I find it difficult to cut down on them. Have bought a couple of cooking books though - so hope to cope eventually.
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lisbet, I usually have diarrhea for a few days after chemo and then need to have prune juice for a few days. My neuropathy is not too bad, just numbness in toes and balls of my feet. I do get “zaps” in my feet for a couple of days after chemo. Gabapentin seems to help with this. My hair has started to grow back (started around 6th month of chemo I think) and is now a little over an inch long. It’s snow white but it is hair!
After your post I read about fasting. It looks interesting. I would be concerned about weight loss. My appetite is not good but so far Ihave been able to maintain my weight. I will check with my MO next time I see her. Thanks for the info.
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Thank you for that info, lisbet. Very interesting. Not sure I could do it as my blood sugar gets wobbly if I do not eat.
Sylvia, I'm beginning to get a little covering of hair, and mine is also white! My natural color was dark brown (heavily highlighted, always!) before chemo, but it had gone white at the temples and behind the ears (I'm 56).
I wonder if it's going to stay all white? I need to replace my wig, which has gotten ratty after several months, and I have no idea what color to buy! My bio hair peeks out a little at the temple/ear area sometimes, and now that it is white-white, it really clashes with my wig which is blonde but with dark roots.
Anybody know what hair color typically does after chemo?
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lulubee, before my adjuvant chem in 2007 when I was 57 my hair still had much of it's color. The first growth was steel grey and then some but not all of the color came back. The texture of my hair was also different. Before the start of this chemo, I still had some color, but not much. I think it will end up grey but not snow white. It's probably one of those “everyone is different" things. I can't stand wearing wigs so I just wear a Buff. I'd buy a wig that is the color you want your hair to be!
I had a nasty experience Tuesday with a nose bleed that would not stop and ended up in the ER. There was too much bleeding for them to cauterize it so I have a balloon nasal pack. My platelets were fine but clotting factor was too high. Don't know why that would be since I'm not on blood thinners. I see my MO today in conjunction with scheduled chemo. I'm sure she'll have an opinion.
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Lulubee, my hair went back to its normal color fairly quickly. It took a year for normal texture to return.
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Yesterday, for the first time in a year of weekly Taxol, I did not nibble through my chemo infusion. Ate most of a small apple and a few pretzels while waiting to get hooked up, and that was all. Annnnd today I have felt nauseated all day and nothing tastes right. This has never happened before.
Coincidence?
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Lulubee, that's amazing that you have had taxol for a year! I think the weekly travels to the hospital twice a week is such a big thing in my time table. One travel to get the blood work and one for the IV infusion. I dare not think about doing it for a whole year! Didn't you take any other break than the one for lowering the dose? What about holidays?
I had my 5th infusion today. Still fasting - and right now quite hungry. But I won't eat before tomorrow. The SE seem to start on day 3 and 4 - so wondering what's going to happen this time. I'm quite anemic - and the nurse mentioned getting a blood infusion next week if it's not better. WB are OK. On my way home I stopped by a local farmer and bought a farm raised chicken. I'm a vegan but 2-3 times a year I eat chicken or fish to get my b12 straightened out (also take b-supplement). Hope this does some good to my anemia.
The port I got a month ago is still very red and irritated, but nurse agreed today to use it (previous times through my wrist - but my veins are so tired and they have to prick 3-4 times before they find a vein that is usable).
All my hair is gone - even my pubic hair. Finding that very uncomfortable and afraid of infections down there! I did buy a couple of wigs - thought I might as well have a little fun in the midst of tragedy. The wigs are not too bad. Actually they are much better looking than my natural hair which was totally damaged by letrozol. Family say I look 10 years younger (and I agree). Have to be thankful for the small things!
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Im on almost 6 months of Taxol with no planned end date, I scan end of December again. I eat during chemo, same thing, grilled cheese every time. I am doing it every 3 weeks and honestly a bit blah for a few days after but nothing some Compazine cant take care of.
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I've been reading this thread since I just started weekly taxol (along with herceptin, both iv and intrathecal). 2 weeks in, crossing fingers hair stays on until Christmas (3 weeks), but New Years would be amazing (4 weeks)...who am I'm kidding lol, it will fall when it wants to :-)
Curious, read about eating during infusion, why?
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They say eating during infusion will help prevent nausea. All I know is the one time I did not eat much, I felt awful for three days afterward and did have some nausea, which I do not usually have. I will keep eating during my infusions after that experience!
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Thank you for sharing lulubee! I'll try eating during herceptin infusion, then will start icing hands/feet just before taxol :-)
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Well, phooey. I caught a cold right before Christmas and had to skip my chemo for this week. I am in a trial and we have to follow the trial protocol which means because of skipping this week, I will miss my next week off. So I'll have FIVE weeks of chemo in a row. Next week off is in February.
YARG. Happy New Year LOL
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I had scans today, i have 4 spots on liver 2 little ones were a bit bigger, 2 bigger ones a bit smaller--all liver numbers perfect as a matter of fact bilirubin lower then ever...I think he said .4...
My bones are same but bones take time to heal...pain hasn't been to bad....maybe it is because I stay on top of pain meds...
We will do 3 cycles (I go every 3 weeks ) and scan again...If more growth we will biopsy for foundation one testing.Over all I feel great (well maybe not right now just got home from chemo) and every one tells me I look great...
Oh and I have a five o'clock shadow on my head...they told me it may come back patchy....
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lulubee, I got the same early Christmas present! Skipping my chemo today but the trial I'm in adjusts the schedule if I have to miss a week. I'll be back to 3 weeks on and 1 week off next week. This will be cycle 10 for me.
I'll have scans again after this next cycle.
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I've now been in the trial for a year, so my scans decrease from every 8 weeks to every 12 weeks. I am VERY happy about that. Last year was a radiation festival for my poor bod!
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Oh well, back in August I thought I'd be going on Weekly Taxol but the Oncologist threw me a curveball and put me on Tamoxifen. It has been lovely to be off chemo but my little run has come to an end! The last scan was not so good - growth on my liver has increased three times in size and my bone mets have increased. Will be on Weekly Taxol from January. Has anyone kept their hair?!!!! Vain hope but in the scheme of things, it shouldn't be that important if it kicks cancer's butt! Don't think I'll ever get used to hair loss. I hate all the uncertainty and insecurity when you have to go on something else and you just don't know how you are going to be on it
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Welcome, lovestosing, but I'm sorry you have to switch from pills to infusion. That was quite a transition for me a year ago. There are some people who do not lose all their hair, but I lost mine after the second infusion. I had a 20% dose reduction in September and I have a bit of chicken fluff growing on my head now.
Hope Taxol kicks some cancer bootaytay for you. It has done a good job for me thus far.
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Thanks Lulubee! I hope that the Taxol does it’s job and is not too hard going! I have had a month’s delay in going on the drug as I have had a nasty chest infection which I needed to clear first. Been pretty tired over Christmas/New Year and I find that I can’t eat too much without my chest getting tight and sore. Im hoping for a better quality of life in 2018 as I’m sure we all are
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lulubee, I to have chicken fuzz and it looks like i have a bit of a 5 o clock shadow...hoping for more hair, Onc says it will be patchy..anything would be warmer then what I have now.
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Hi
This thread has been rather silent for some time!
I have a question about weight gain on taxol. My weight has been rather stable since I stopped letrozole in May 2017. I gained about 10 kg on letrozole and they started to slowly come off during summer and autumn. I was on faslodex/ibrance and they didn't cause weight gain. Rather helped me get rid of the kilos.
I started weekly taxol late October and don't have steroids. The nurse said taxol shouldn't influence weight. However since my last infusion (I have had a one week pause) on 29th of December until today the 10th of January - that's 12 days - I've gained almost 6 kilos. I'm so desperate now. The extra weight don't feel like water retention and I haven't eaten more than I use to.Has anybody else experienced this? - can it be the taxol or could it be caused by the cancer (liver mets)? I do have a lot of liver pain and I'm not sure the taxol is working. A scan in the near future will show.
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Lisbet, I'm on cycle 10 now and have lost a few pounds. When I had taxotere as adjuvant chemo after my Stage II diagnosis 10 years ago I did gain some weight. I think the difference for me between the weight gain and loss while taking these similar drugs is a function of activity level and caloric intake. Right now I'm usually quite fatigued so my activity level is low. I am also not hungry so I don't eat much. 10 years ago I was fatigued, but not as much as I am now, so my activity level was down. However, I was still hungry and kept eating the same or more than I had before the diagnosis.
My scan in November showed one tumor a little smaller and the others stable. I have another scan in 2 weeks and hope things aren't too bad. My TMs have been up a little.
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