Afternoon all
I am due to taxol in the next couple of weeks and I was wondering has anyone got any advice which would be helpful.
I was told the usual treatment is 12 weekly infusions but alot of people have to stop as they develop neopathy what ever that is.
Thanks in advance.
Linda
Hi Linda
I am on week 7 of an 18 week course of Taxol (also known as paclitaxel). I lost my hair on week 5. My onc said the main side effect would be fatigue which I have to agree with, it’s really starting to kick in now. Had no nausea, a couple of stomach upsets but nothing else so far. Neuropathy is the loss of sensation in your nerve endings, it usually affects fingers and toes. I previously had eribulin for 23 cycles & suffered on and off with neuropathy but haven’t had it on paclitaxel as yet.
All the very best with your treatment.
Helen x
Afternoon Helen
Thank you so much for your advice regarding. Might be my age coming up 66 I was told yesterday
It is planned for 12 but she said alot of people don’t manage 12.
If you don’t mind me asking was both of your chemos back to back.
I have bone and liver mets now. For 8 years I was bone only. Developed liver mets last October.
I have asked for cold cap now. Don’t think I can have loosing my hair again. I know it is not guaranteed but I want to try.
I asked also yesterday once I have had chemo I would go onto hormone therapy.
I am fit and relatively active and healthy for my age that is why I think they want me to try this treatment.
I will be in touch to see how you are getting on. I will let you know about myself once I start treatment.
Once again thank you for you response.
Linda
Hi Lyndyloo. Were u on the Capacitabine Forum? Looks like Cap has stopped working for me and like u will probably be starting on Taxol. Am told this will be weekly and ongoing. I wish u well. X
Afternoon Lozzer
You are right I was on cape from October last year. Had CT in .March l was stable then I have just had another CT scan couple of weeks that is when they discovered the liver met had grown. Mind I never thought it was working as tumour markers had not dramatically dropped. Think they are still around 500. I even queried it couple of months ago with chemo nurse told I should not get hung up on numbers.
Back in 2009 the oncologist only went on tumour markers after I had finished chemo. Since about 2013 old oncologist retired so got new one.
Think the way oncologist work now is they try to get the most out of each treatment that is what I was told anyway.
When will you know if they are changing your treatment?
I won’t be starting taxol for a couple of weeks. Will let you know how I get
Linda
Hi Linda, I too had progression in liver and found out in October. I started cap in January had scan in March which was fine. Latest scan was outsourced for results. Oncologist not 100% happy with result so is getting second opinion. Hope to find out later this week. Dont hold out too much hope it is wrong. Oncologist had consent form on desk and I knew before he said anything. He has signed me up he said to save time and if changing then will start week after next. Hardest thing is he says is weekly for as long ad it works and if loose hair then cos ongoing will not grow back. Is such a rollercoaster. X Lorraine
Evening Lorraine
You must be at the stage as me apart from my oncologist said it could be for 12 weeks alot of people come off it before then. I also said yesterday I want to have the cold cap as I am not prepared to loose hair again. I know there is no guarantee butI feel it is worth a try.
Last time I chemo way back in 2009 I lost my eye lashes and eyebrows as well. I have just had eyebrows micro bladed so won’t loose them. It was about 3 months ago now.
I don’t mind giving the new treatment a try but if it means I have no quality of life I will stop it. At the end of day I am 66 so I am not prepared to feel poorly all the time. Hubby was with me yesterday when I told oncologist.
The oncologist told me I would on it for a few weeks then I would go on hormone therapy. I wonder why your oncologist told you you would be onto till it stops working.
I am hoping to fit in holiday in this country before I start treatment.
I will let you know how I get on.
Keep in touch
Linda
I have BC for the 3rd time with mets to sternum and liver. Triple negative. I have had 34 weekly taxols. Missed 4. Neuropathy is the tingling, pins & needles, numbness, pain in fingers & toes. I’ve had dosage dropped to 80%. Talk of dropping to 60% just so I can keep going. Eventually if left on Taxol for too long, the fingers & toes lose all feeling & will compromise day to day living. Good luck. Much love x
Lyndyloo - Hope you get on well with new treatment. Second opinion confirmed more mets in liver so will be starting same as you. Just another hurdle! I never had chemo wad previously on hormone treatment as also have in bones. Will let you know how I go. X
Boo1967 - sorry to hear about neuropathy but encouraged by 34 weekly Taxol. Have you lost your hair? If so how many treatments did you have before you lost hair. I wish you all the best. Xx
Lorraine x
Evening Boo
That is amazing 34 Taxols. You must tolerate it really well.
I was told I would have 12 in total. If you don’t mind me asking were you told you would be on it for this long?
As I mentioned before I intend to try the cold cap this time. No one mentioned I could have that way back in 2009. Have you done the cold cap before?
With you being on it for such a long time is there any tips you could share with me. To put mildly I am dreading it. I don’t start treatment till 28 August after bank holiday.
Lorraine sorry like me you have had progression.
How it stands at moment I am going to chemo unit next Friday 17 to be assessed and measured for cold cap. Starting first treatment on 28 August.
Have they said how many you will be having?
Once we both start the treatment I could send you a PM to see how you are getting on.
I don’t know about you it’s a shock when a treatment fails so quickly Not had that before. Hope for both our sakes it works really
Linda
I had weekly Taxol for 21 months, it kept me stable all that time. I was active throughout and it didn’t stop me doing anything. Have been on Kadcyla for just over a year, I do admit this one is much easier x
Evening mollypop
Thank you for your reply. 21 months thats a long time. Wonder why some of us lije are only having maximum 12 while some seem to have loads. I am planning to have cold cap. Did you loose all your hair when on taxol?
I normally I have an active social life. Also I swimming and do aqua fit. I asked oncologist the other day if I coukd continue with exercise was told best not just in case I catch an infection.
Don’t like to pry but do you never get a break from having chemo?
Pleased you seemed to have cooed well on taxol hope I am as lucky as you.
Linda
Linda - I start on 30 August. I still work 3 days and hope to continue altho change hours. It keeps me sane. My Taxol will be ongoing. I have had Hormone therapy and run out of options there then Cape. One thing after another but it has been four year since diagnosed so feel lucky. Hope this luck continues on Taxol. I wish you well with cold cap. I will be looking at wigs as said because no break in treatment so will not get chance to grow back. Yes you can PM me however not sure how that works? You sound like me so we will accept what is to come and deal with it as is only way. Fingers crossed xx
Mollymop - 21 months is inspiring. I wish you continued stability on your current treatment. Xx
Lorraine
Afternoon Lorraine
You are probably still young why they intend to keep you on it all the time.
Upto now I only had 2 hormone treatments. Not sure how many there are still for me to go on.
It sounds like taxol must be aweaker chemo than Taxetere which I had back in 2009. I only had 3 and 3 FEC. then Letrozole for 4 years.
Good luck.
Hi Linda
I am 53. Is devastating whatever age! Fingers crossed for the both of us.
Lorraine x
Hi Lorraine
I am just turned 66 in relatively good health at moment excercising regularly. I am still hoping to do something during this treatment although I mentioned to oncologist last Monday about going swimming and aqua fit she advised against it because of the germs. That same oncologist I asked her then when I was on cape and she said same. I still carried on swimming. There are germs everwhere. I suppose they don’t want the come back if we caught something.
Not looking forward to it but it has got to be done. I am going to ask next week at my pre assessment if they scan half way through to see it is working.
Linda
hi
My wife developed secondary breast cancer last Feb five years after the initial diagnoses…its in the bone/lung/liver…she has been on Taxol since one a week with the fourth week off…she had a scan after 9 weeks and it showed improvement in some areas
but not in the liver and bone…the side effects are fatigue 2 days after the chemo and an itchy each on her hands and chest…she has never suffered from sickness but some do…we are disoppinted
that it’s working on the liver bone but maybe with the remainder with the treatment it may…
Evening greenmachine
Sorry it has not done all that you both hoped for. With it not working very well is your wife’s treatment not going to be changed then?
Hope the reminder of the treatment works better.
Hi everyone
My partner has secondary cancer. She finished radiotherpay in March this year, but in May started devloping maculopapular lesions along the mastectomy scar area. There is also low volume metasatic disease in bith lungs.
Her chemo cycles were stopped in November last year after her team decided that it would be best to proceed with the mastectomy and lymph node removal (12 in total) as a matter of urgency because she wasn’t responding to chemo. However, she didn’t have Paclitaxel. I think it was EC. And because they didn’t give her Paclitaxel, she has not been able to get on an immunotherapy clinical trial (it is one of the conditions that make you eligible to participte in the trial).
She is due to start chemo again this month and this time they will give her paclitaxel.
I would be grateful for any views and opinions about this drug.
Many thanks.
Evening all you taxol ladies
Just to let you all know had my first of 12 sessions of weekly taxol. Went well I think after from taking 5 hours from start to finish. As I mentioned before I am having the cold cap so that is why
I was there long.
Lorraine good luck for Wednesday.
Linda