Taxol / Gemcitabine - Progress Report!

Just thought I would start a new thread on this, so that Peggy (Maroke) and I can keep up to date with how we are doing on this regime as it’s new to us both.

Have just started Taxol / Gemcitabine, taking both together on day 1 of 21 day cycle, then have nuelasta on day 2, with another dose of gem on day 8. Was on Carboplatin, but this wasn’t working and tumours in my neck where growing.

Well had the infusions yesterday, thanks to reading people’s posts here I found out that the anti-histimines could make me drowsy, and I shouldn’t drive (I wasn’t told this!) Drowsy I was, and dozed through most of the day, hooked up at 11am, had 4 different little bags with pre-meds, then the tax for 3 hours, then a break, then gem for 1/2 hour followed by a flush through. Finally finished at 5pm and freind took me home. Got home and was just so incredibly tired, actually I can’t remember the last time I felt like that. Also very surprised that my sense of taste went immediately and yesterday marmite tasted horrid, so did salt and cracked pepper crisps, damn!

Today I am bright as a button (relatively) and feel ok, am due at clinic at 5pm for the nuelasta and intend to pick up some shopping on way so I have supplies for coming few days.

Have dex and granisetron for today / tomorrow, when BCN told me what drugs I was taking away there was no script for dex, I said I wasn’t happy with that (on past experience) and asked for at least the 2 days, may push for more in future based on what some people on here have done and had good results with.

In addition to those two, I am armed to the back teeth with orther drugs, have oramorph as back up pain control, co-codamol as primary and ibruprofen to alternate with. There is nothing to say the pain will be as bad as it was on Taxotere, but I am not going into this blind now, so wanted to be ready. Intend to start the codeine and ibruprofen tomorrow to pre-empt any effects in that area. Also have back up anti-sickness and loropramazel (sp) for the bad indigestion, oh and of course taking Movical for the other issues that all this causes (and for me the worst side effect)

So, am in the brace position here, and expect it to hit me tomorrow afternoon based on previous experience. I will keep this thread updated incase anyone is inteterested, I do find knowing others expeirences helps me, so hope this does the same for someone.

Best wishes everyone
Nikki

Well day two is going ok still. Took steriods and anti naus this morning about 9am, also topped up with an anti indegestion and all was well. Got to about midday and started to feel a little ‘achy’ but nothing too bad, took 400mg ibruprofen to combat that at 2pm and nothing since, although I do have various tingling aches in my hands, shoulders and legs. Mouth tastes disgusting still, can’t taste a thing but that’s not the end of the world. Think I will take a back up anti nausea before bed, probably another ibruprofen too and see how that gets me through the night.

Feel like it’s an awful waiting game though, because I know ‘it’ is coming, it’s just a case of when… then a part of me is going ‘ahh you will be fine, no side effects or anything, some kind of medical miracle you are…’ yeah right, learnt that lesson before!!

Hope nobody minds me posting like this, occured maybe it should be on a blog rather than here, don’t have one but maybe that would be an idea.

Best wishes everyone
Nikki

Hi Nikki,

please keep on posting. I’m terrible on the PC! Have been trying for months to find Kate’s blog! Lol, remember you are my “icebreaker”. At least this way I know what to expect. Am a bit too tired now to write a long posting, but will make up for it tomorrow.

love Peggy

Will do Peggy, hope what I write helps you!

It’s now just after 10 here, am tired and aching has increased but generally not feeling to bad. Would go to bed quite happily now, but if I do my dogs will just wake me up again, so will get them busy in a minute to make sure when they go to bed, they stay quiet for me! It’s easier when someone is around to help out with that kind of thing, but can’t be helped.

So, so far worst day was the first one, doing ok right now,. Meant to add, got a little bit of diarrhoea, which is a pleasant (if there is such a thing) change from the usual constipation. Not taken much pain relief yet, just the one ibuprofen so that’s probably why, if I need more tomorrow I will restart the movicol, just to be sure!

Take care of yourself

Nikki

Nikki
I thinkit is aa good idea to write down what is happening as it helps other people although aas we know it effects everybbody in different ways.
I had txotere 3 weekly and then gem/carbo on day1 and gem day 8. That was the idea but my body couldn’t copee with the gem on day 8 so missed that out and then was fine.
I get no joint pains on weekly taxol but that was the worst thing on taxotere. Mmy joint/bone pain didn’t start till about day 5 and lasted 3 days or so and was reduced to crawling upstairs as couldn’t stand. I always got diarhoea which lasted up to a week and got thrugh so much immodium and also hade codiene sulphate for pain relief and would stop the diarhoea. (know what you mean about diarhhoea being easier thn constipation!!!).
Be careful about any tingling,numbness in feet and hands and tell the onc about it as taxotere causes numbness in these areas and sometimes the feeling never returns to normal and they can reduce the dose. My dose got reduced and it was still a chemo that shrunk my tumours so ddon’t worry if they have to reduce the dose.
It must be so scary reading about others experience of a drug and waotong for the side effects - it may not happen.
Keep on posting here as usually I redirect people asking about taxotere back to the search menu as here are so many threads on it and ours is newer and written in a different style so should be useful as then if they have questions, you may have experienced it and that informs people…
hope you stay ree;atively symptom free
Kate

Hi Kate, glad you think it will help someone, as you say we are all so very different in how we react, it never ceases to amaze me. Had bad numb fingers and toes on the taxotere in '07, so far little bit of numb, but nothing too bad. Good to know that you had success with the taxols, hopefully I will too, the lump in my neck is huge and so hard and uncomfortable :frowning:

Well, progress report.

I went to bed last night with some ibruprofen in me feeling just a little bit sore and the anti sick meds, woke up about 2ish with the awful prickling bone pain all over my legs and back, also arms, have to say it wasn’t as bad as I had on taxotere, so that’s a relief but it’s so damned uncomfortable. No matter what position I try to put myself in it just wont ease and I can’t get comfortable, so sleep was limited. I am managing to stick with just ibrupfrofen for now as trying to avoid anything that blocks me up. Have headache and woke with a bit of a coldy feeling in my head, but that has cleared I think it was because I didn’t haul my lazy carcass out of bed until about 11am!

Generally feeling tired, hurting and a little bit sick but not so bad really. Will take some more painkillers and hopefully manage to not have to dip into the strong stuff. I hate tablets!!!

Take care all
Nikki

Wow, haven’t updated this so thought would make an effort in case anyone ends up on this treatment regime and needs to read they are not alone.

The Gem went ok during the day, but got really ill and high temp that evening, ended up back down the clinic for the night with 30+ and racing heart being sick, even after jab to stop me. However, everyone is pretty convinced it was an infection, not the gem as had nothing similar from the gem / tax the week before. Guess I will find out tomorrow when I go for my 2nd gem.

Had 2nd gem / tax last Tuesday, all as expected, exhausted that day, bit ropey the next but back in work by Thursday feeling moderately ok. Suffering with indegestion, but they have put up my meds for this, sticking with the anti-sickness for a few days after the main meds run out, just to help me through.

Pain has been worse this time than last, but can cope and get on with life, the neuropathy is starting to be a little bit of a problem, gonna wait to see if it gets any worse, if does will mention this.

On the real positive, I am pretty sure the neck tumour is shrinking, of course early days yet as only just about to complete cycle 2, but still, it feels smaller to me and BCN looked at my neck and said it’s not as prominant as it was… wooohoooo!

Good luck to everyone
Nikki

Hi Nikki,

Really hope you are right and this chemo is working for you. Will keep my fingers crossed.

Peggy x

Hi Peggy, thank you. All finger crossing gratefully receieved, I will do same for you as well that they find something good for you.

I don’t know if you, or anyone else, can help me. I am struggling with the most awful skin problems, and have spots on my face, neck and all over my head, especially at the back which is making sleeping difficult. The spots are all very, very sore, mostly of a whitehead type (yuck) and I am so sorry to be so graphic, but once the ‘pop’ then they bleed copiously and won’t stop for absolutely ages. Even after they are a few days old, if I accidently knock them they bleed again, a lot! Mind you I am not healing too good at the moment, so I guess this bit is related. My last bloods were ok, reds a shade down so now taking iron tabs, as I get nulasta the wbc is usually fine.

Anyone got any ideas of what I can do please? It’s hard enough being bald and overweight, without having a face and head like a b**** moonscape.

Thanks
Nikki

Hi Nikki,

My gemcitabine info mentions a rash as a possible side effect, affecting about 25% of users). It reckons you should be prescribed meds to deal with it (topical corticosteroids).

I had my first dose on Thursday with no adverse effects beyond feeling a bit tired in the evening (but I had been sledging before I rolled up at the hospital so this may have caused the fatigue). Have my next dose next Friday.

Hope you get something to sort out the rash - as you say, it is adding insult to injury.

Jenny
x

Hi Jenny, it’s def not a rash, it’s only on my bald head, nose and chin, and a couple down the back of my neck. Just had my OH dab some cortisone cream on them all, attractive huh.

Will talk with team on Monday, get some ab’s probably, as I vaguely remember this sort of thing happening to me with taxotere with my primary 2 years ago.

Thanks for writing though, and yes it is insult to injury, especially as I can’t wear my lovely new wig coz it hurts :frowning:

Nikki