I usually post on the Bone Mets thread but have just been for my latest scan results & need advice on some chemo.
I’ve been on Capecitabine since Feb & after initially stabilising everything for a while, my latest scan shows mild progression in some areas of bone & also a small amount of fluid in left pleura of lung. So my onc wants to change drugs & has suggested either Paclitaxel or Vinorelbine.
I really really really don’t want to lose my hair again & go through all this awful chemo SE’s again, but it looks as though Paclitaxel is the best option at the moment & my onc was leaning towards it too, but has told me to go away & think about everything before making a decision.
She is talking of doing the Paclitaxel one dose a week for three weeks & then a week off, before starting again, and for 6 cycles of this regime. What I want to know, is how doable is this chemo & how soon will I lose my hair & start feeling crap. Please be honest with me, as I want all the facts before making my decision. I have two children (ages 12 & 7) so I obviously need to take them into consideration as well. Perhaps they should be my reason for going for the harshest treatment…
Hi. I’m on weekly taxol (paclitaxel) for 15 weeks. I haven’t needed any anti-emetics (apart from ones given as pre-meds) and haven’t felt sick once, after 4 treatments.
3 weeks out of 4 I have had Tax Trots for one day - liquid poo for a few hours but it stops immediately when I get fed up enough to take 2 immodium taglets.
BUT no anti-emetics means no constipation days.
My hair has started to grow back on taxol - some hairs on shin (boo) and it’s coming back all over my scalp - I lost it all on EC but Taxol doesn’t seem to be affecting my hair.
I’m finding it very, very doable. In week 2 I managed to do some gentle walking/jogging - and on Tuesday I was up on the kitchen worktops cleaning the tops of my cupboards. Those things would have been unthinkable on my other chemo.
Hi I have been much better on weekly paclitaxel than I was on FEC, and am actually working close to full time! Main SE has been tiredness, but like Ninja I am not having any sickness or nausea and not taking any anti-sickness tablets - thankfully not having Ninja’s other problem either! I do still suffer from mouth problems and indigestion, but even those are not as severe. My hair is also growing (slight fluff!) and just noticed I need to shave my legs…
No eyebrows or lashes and they have been getting worse.
Hope this reassures you a bit!
Guess I don’t know what would happen with hair though if you started with this treatment as hair loss is noted as a side effect.
Hi Dugsy
I’ve been on weekly taxol since 30th March this year.
This is my first lot of chemo so I have nothing to compare it to, but I have found it manageable.
My main SEs have been tiredness, joint pains and a bloody nose - add these together and I’m normally out of action for 3 days out of 7.
Good days are day 2,3&7, Bad days are day 4, 5 & 6 (I hope that makes sense)
The good news is that I have been very lucky and kept my hair (although all body hair has disappeared) but I have been using the cold cap. So fingers crossed for you
I’ve just gone back to work on a phased return and am doing 2 days a week - although I am absolutely knackered. I’m not sure how many more cycles I’ve got to go - I have a meeting with the Onc next wednesday.
Hi dugsy I’m on 3 weekly taxol / carboplatin the se for me are day 3 4 leg pain but manageable with p killers I’ve had no sickness my main se is loose bowel movement and constipation tingling in hands feet also unsteady legs I have a 12 yr old the se are manageable but I’m on 2 so not sure wars causing wat my hair went within a month of starting it started to fall out so oh shaved it off cldnt deal with it everywhere the other prob is oral thrush day 5/6 I hope this helps let us no wat decide tc laura
Ninja yea but was only minor it don’t stop me doing anything so no one as mention reduction but have found my legs v heavy achy this round and I’m unsteady on my feet so I’m gona mention it wed when I’m up for next lot I didn’t no reduce it they just sd about tablets thanks
Just come across this post. I was on paclitaxel from September 2010 til Feb 2011. I had 18 weekly sessions with no break except for over christmas. I was initially having 12 sessions, but as I was responding so well had another 6. It is very doable, but for some reason, I do well on chemo anyway. Never been sick at all during chemo. I lost my hair pretty quicky, but I did not shave it this time (first chemo in 2007) and after finishing paclitaxel in Feb, I managed to stop wearing my wig in May, which is pretty quick I think.
I did find by the end of December through Jan I had a permanent cold, but just rang my docs and got antibiotics immediately if felt was moving onto my chest.
My latest scan in May showed no sign of liver mets at the moment, so paclitaxel has worked miracles for me for now, and my onc said that if needed, I could have it again in the future.
Good luck and hope all the responses have helped you
xxx
Thank you so much ladies for all your comments - you are all such an inspiring bunch & I have now made my decision to start this chemo regime after we return from holiday in 3 weeks or so.
I know in the grand scheme of things losing hair shouldn’t be an issue, but I found that the worst part last time & it completely rocked my confidence. This time I’m going to have it cropped short before I even start & get a lovely wig in a bob!
I will keep you all posted of my progress & hope I find the SE’s managable like you all have. But first I’m going to enjoy my sister’s wedding in less than 2 weeks & then a fortnight’s holiday in the US with my lovely family.
Hello
I have been on weekly paclitaxol for 3 cycles of 6 now. I have as you are maybe going to every week for 3 weeks then week off. Ive had 9 now.
I have hair still but thin and do have bald patch at back. On EC I had none after cycle 1. I think with cold cap may have kept hair but was not available. I get tingling fingers and am tired. I find the day I have the anti histamine given causes tiredness and I cannot do much. I have 4 kids; 14,11,3 and 1 so understand that you are worried but I do evening meal even on chemo day with this treatment but with EC I was in bed and quite ill.
Is supposed to be very effective and although white counts low they seem to stay within limits.
hope 15
hi Dugsy
I am on taxol with the same regime of 3 weeks on then 1 off combined with avastin every other week. My onc and nurse advised that most folk do not find the regime that bad - no sickness and manageable side effects and my experience concurs with their view. I’m told taxol is a strong chemo and having a son of 11yrs I am keen to stay around as long as possible! I still work and don’t often get tired - the antihistamine can knock you out for a few hours after treatment but after that it’s ok. I eat fine, have nasty taste in mouth sometimes and the occasional tiny mouth ulcer but really do live my life much as normal. I even do an aerobics class. I started to lose my hair after the first cycle but did not lose all and it is now regrowing - in the grand scheme of things I reckoned I could live with a wig.
Hope this helps… I am due to move on to capectibane ion Sept so am keen to know what that is like! Hope you have a great hols and choose a lovely wig (they’re not that bad!). X