71692members
376051posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Back on Taxol

334 REPLIES 334
debsincornwall
Member

Re: Back on Taxol

Bumping this up for Elaine D who I think is looking for info for Pinklady.
But.... Happy Easter to all those still on taxol hope it is working for you.
Love Debsxxx

carolinew
Member

Re: Back on Taxol

Oh Debs
I am so glad that yo got what you wanted I don't know how you have put up with it so long have all this chemo escpecially with vein problems.
Your posts always make me smile I really like your sense of humour.
have a lovely week-end
love CAroline

alison100
Member

Re: Back on Taxol

Hey Debs,
Does this mean you have a chemo break!!! Nice one.
Glad to hear that it's not just my husband who suffers from the tick thing, I feel sorry for everyone who tries to cannulate me as they have his eyes burying in their head.
I hope that you celebrate this news with a purchase, it would be rude not to.
al

Kay123
Member

Re: Back on Taxol

Hi Debs

Really glad that you have got the chemo break that you want. Enjoy!

Kay x

debsincornwall
Member

Re: Back on Taxol

Hi everyone,
thanks ripley.

Taxol 15 is done and dusted I waited about 15 mins for my young handsome Dr to canulate me warmed my almost veinless hand, wrapped it in the towel until A was available. I was sat next to a new lady with primary b.c she was having a problem with her veins. Not wanting to scare her I moved across to the corner. Dr A arrived and his blood pressure was as high as mine and needed more space. He admitted he had had a sleepless night worrying about the task ahead. Told him not to worry, it was a bit like a first date no pressure. Poor Ian looked on and rolled his eyes. He seems to be doing that a lot these days, maybe he has a tick?
First attempt with ruddy great darning needle was a no. Second attempt with blue smaller one was a double no. Sweat pouring from A's brow he plunged in another needle and fight began, there was only going to be one winner. Bloods were taken and sent off.

Dr A looked so relieved I could have kissed him. I asked him to let my onc know I was going for a scan and if all is o.k. could I have a chemo break. Dr A rolled his eyes round this tick thing must be catching!

Scan went well, the dye nearly made my hand explode. Warm tingly feeling not up to standard. D the Rave had rushed it. Oh well you can't have everything.

Ian and I had a bit of lunch then it was back to chemo.

New lady still there so I sat next to her she needed heat pads like me so Ian was kept bust. Had avastin and then taxol my onc waved from the corridor he had a big smile so I was hopeful. He had checked the reading but had not done all the measurements and was confident no major problems, so he agreed I can have a chemo break I will stay on pamidronate and avastin and report any change. With luck I will begin to recover from taxol. With lots of luck I can have chemo free summer.
Before my onc left I asked for his magic 'not like that, like that'
He obliged and even gave new lady his blessing, well actually he gave it to us all. It was a Monty Python moment! I so love his sense of humour. Plus his skill of keeping me here for all this extra time.

I have a clinic appointment a week on Tuesday so will go through everything officially then.

Well I am feeling really pleased, so grateful for a chemo break. Did I mention that already?

Have a lovely weekend.

Love Debsxxx

ripley
Member

Re: Back on Taxol

Debs, good luck with your scan and I sincerely hope you get a chemo break as you must be whacked after 14 rounds of Taxol. Fingers crossed for you!
x

debsincornwall
Member

Re: Back on Taxol

Hi,
my understanding is that it is the fatty sack inside the midrif that moves around to protect you, mine is stranding. I am just really hoping that the next scan will show less strands. If that makes any sense to you it sure as hell doesn't make much to me.
Love Debsxxx

loopyjack
Member

Re: Back on Taxol

Hi Debs,
After seeing your photo I can't imagine you look like Hilda or Joe with the scarf on any day. If you don't think I am being nosy and don't mind telling me what is omental infiltration. Love Lesley x

debsincornwall
Member

Re: Back on Taxol

Hi Lesley,
well that's good news, next time you see him just ask for report by phone I am sure he will oblige.
Friday I am having a scan and then my 15 taxol so fingers crossed I can have a break. I feel my liver is doing o.k. but omental infiltration, I am not too sure about.
The bits of hair I have left are still growing but so thin one more chemo should finish it. I have only worn my wig a couple of times I just wear a scarf around my head I look like Jo Brand/Hilda Ogden on a bad day.
Take care.
Love Debsxxx

loopyjack
Member

Re: Back on Taxol

Hi, I've just recieved a letter dated 11th March with the results of the ct scan I had on the 27th Feb. It would seem my onc doesn't ring with results but I will make a point of asking that he does so when I have the next one. Anyway the results are an overall improvement from the scan I had in Nov so thats good news just have to wait and see what he says on the 31st as to where we go from here. On the down side my hair is coming back 'white/grey' never seen it this colour having coloured it for years and its curly. lol. Hope you're feeling ok Debs I do like the term 'chemo coma', are you back on weekly Taxol? Love Lesley xxx

debsincornwall
Member

Re: Back on Taxol

Just waking from my chemo coma! Going for a shower almost bald but this white egyptian cotton bedding is looking very hairy.
Hope you are all o.k. Those meeting on Friday hope you have a lovely day. Late celebrations for Jane(bit like the queen's birthday)
Love Debsxxx

celeste
Member

Re: Back on Taxol

I sm sure you'll sort him if he is tactless again Debs. I'm hoping you get good scan results too sports - everthing crossed - (not an altogether unpleasant experience!)

AnneS
Member

Re: Back on Taxol

Hi, found this thread finally! Good to hear an update Debs. I'll be crossing everything for good scan results for you!Lets see what flowery words they come out with this time - really hoping tax/avastin has done its stuff.

Glad your first taxol wasn't too bad DebsH.Thinking of you - take it day by day and try not to overdo things.

Lots of love
Anne

DebsH
Member

Re: Back on Taxol

Hi Debs,

Good luck with your scan Debs, it seems to work well for you. When you said you only had 12 last year what do you mean. You had 12 and then you had good shrinkage and then you had a break and then had another 18... Its just that say about 6 years ago I had Taxetere which worked great for me and I was in remission for 6 years and I said to my onc why not put me on Taxetere and he said Taxol will probably work just as well, then I got the feeling that once they have used one chemo it does not work so well after the first lot. I am just very ignorant as far as it all works, I dont think I ask the right questions. Anyway Debs, you are giving me a lot of hope, and thanks after 1 taxol (little weed) I don't feel too bad. Take care and thinking of you all.

DebsHx

debsincornwall
Member

Re: Back on Taxol

Hi everyone, taxol 14 done and dusted. Managed to change scan to next Friday so when I get canulated I can have bloods then go for scan and then back for chemo and avastin Dr had a bet I wouldn't get it sorted but you know what we did it. Then I told him I will expect good results at my next clinic! If results are good I will have a chemo break so fingers crossed. I only manged 12 last year but I had brilliant results.

Grumpy man was not there today but comments were made one of my friends John said he could see I was really shocked by his actions. I said 'no actually I thought he was a cheeky so and so' Maybe our paths will cross next week.

Hope you are all doing well KatieP enjoy your break. DebsH(which are my initials as well) Glad chemo 1 is out of the way and if you feel tired just rest.

Love Debsxxx

KatieP
Member

Re: Back on Taxol

I have to say that I was looking forward to an end in sight but as my markers appear to still be responding I will psyche myself up for more. How many more are you due debs, you seem to have been having it for ages , no winder you are tired! My hair is hanging on but quite thin which I hate and I have 2 disgustingly black nails so I look like Cruella De Ville with dark red talons!
I think we can all sound upbeat but have our down moments, I can be reasonably perky all day but by early evening I am under the duvet with the Archers! How sad is that! In pre Taxol life I would have cooked dinner and popped down to the gym . My energy levels do seem to recover during the week off , last weekend I did a lot including going to 2 concerts so I hope that with 2 weeks at Easter I will be up for the Bay of Naples and even dare I say it SHOPPING! eapecially Italien shoes! I will report on the "shopping " thread!
Love Kathryn

DebsH
Member

Re: Back on Taxol

Hi Everyone

Just to say that I have just had 1st Taxol yesterday and want to take my hat off (or wig - which I have just bought just in case!) to all you that have gone through so many already... what a long journey and hopefully worth it in the end. You are all so upbeat about it and very brave, I do try to be but sometimes it all gets the better of me... sorry to go on I really am a very cheerful person (also I know you all must have your bad moments). Thinking of you all.

Lesley, I just wanted to say when I had my last CT Scan, the next day they managed to look at it, although the actual report had not come up, it is all on the computer... so see if you can get an earlier appointment, the waiting is crap and you feel like another three week has gone out of your life for the worry that it causes, what a waste of time! Hope you get to see someone very soon. Take care and try not to worryx

DebsH

JaneRA
Member

Re: Back on Taxol

Hi Kathryn

You've done brilliantly to get through so many taxol. How's the hair?

Look forward to seeing you at the meet up on the 20th.

Jane

debsincornwall
Member

Re: Back on Taxol

Great new Katherine have a lovely holiday, I am having an extra week off at Easter, don't know how much more I can take . It is incredible how we all have different tolerances of the same treatment.
Love Debsxxx

AnneS
Member

Re: Back on Taxol

That's good Katie and a good idea to have the holiday to look forward to.
Take care,
Anne

KatieP
Member

Re: Back on Taxol

Saw my oncologist on Tuesday and he has discussed me with other colleagues and the consensus seems to be that I can probably derive more benefit from the Taxol/Avastin combination and I am tolerating it reasonably well so I am due probably 2 more cycles. He is still happy for me to have a little break to go to Italy at Easter so something at least to look forward to!
Love Kathryn

debsincornwall
Member

Re: Back on Taxol

Hi Lesley,
when I have my scan if I don't have an appointment with onc the following week he will ring me. This has been ongoing since secs diagnosed 2004. I would ring his sec and ask for an earlier appointment, I am sure they will understand. They know we all hate waiting for results.
Hope you are feeling o.k. and fingers crossed for good results.
Love Debsxxx

loopyjack
Member

Re: Back on Taxol

Hi,
I had my 12th weekly Taxol 2 weeks ago (23rd Feb) and had a ct scan on the 27th but have to wait until 31st March to see onc for the results. In the meantime I am taking Tamoxifen but it seems a long time to wait for results. Has anyone else waited 5 weeks from treatment ending to appointment? Lesley xx

debsincornwall
Member

Re: Back on Taxol

Hi Kate,
sorry to lose you from this thread wishing you very good luck with the next regime.
Love Debsxxx

dippykate
Member

Re: Back on Taxol

glad you all have done so well on taxol. I know my initial 16 or so my signs and problems caused by secondaries all improved dramically. From being unable to eat any solid food to eating Fajitas was really a miracle for me. However, since Christmas the taxol was definately not working so well. I had my 21st and final taxol on 26th feb as it was really having no effect on my swallowing and my skin mets had grown back.
The Ct on 2nd march confirmed that taxol had had a mixed response on my tumours with some staying the same or smaller and others bigger and some new ones.Think I'll have to start my own vineralbine thread now!!!
Will add my ct result and hospital admission on another part of the forum.
Keep going with the taxol and long may it work for you all.
Katex

KatherineM
Member

Re: Back on Taxol

Well Debs - all I can say is men, thats what they do, my husband is very emotionally supportive, but he completely freaked out at the idea of a root canal and spent ages complaining about needles etc...he seems to forget its practically a daily thing for me./...

DebsH - I am on faslodex (hormonal) now, what i can say is good as no side effects, the injection is a bit much as it involves dropping your trousers. I feel pretty OK at moment and am just taking it day by day

Cathyx

debsincornwall
Member

Re: Back on Taxol

Hi Debs
I am another one her2- er+ and taxol worked well for me last year I had a scan just after Christmas and had more shrinkage and I am due another scan soon so fingers crossed for even more. I am really desperate for a break! My hair came out last year but I still have some at the moment, it is very thin but the length has grown.

Hi everyone, well I had tax number 13 today. We played hunt the vein but after 2 failed attempts Dr came to my rescue. Protein in pee and blood pressure up so had to have chat with Dr he o.k'ed avastin. I think my blood pressure went up when the man in the next chair complained he had been there 3 hours. He had had 2 hours chemo! I was there 1 hour before him and left at 7.45p.m. I was there for that long I had to be transferred to the ward. Thought I was going to get bed and breakfast!
Hope you are all well, and looking forward to spring. It has been a bloody cold winter so fingers crossed it will be a good summer.

Love Debsxxx

AnneS
Member

Re: Back on Taxol

Hi Debs,
Just seen your post and wanted to add my experiences. I was diagnosed with mets in both lungs and my lymphatic system in Feb last year and after 22 lots of weekly taxol and fortnightly avastin my scan in November was completely clear and have just had another scan 3 months after coming off the chemo and it's still completely clear so I hope this gives you hope. I didn't lose my hair but used the cold cap from March-July and then went without from September to November. I'm HER2 neg and oestrogen positive but taxol definitely worked for me - each scan last year was progressively better - so I'm off chemo at the mo until I get progression.
Anyway hope this helps. Take care,
Anne

DebsH
Member

Re: Back on Taxol

Hi Kathryn and Cathy,
Thankyou both for replying so promptly and giving me hope! Sometimes when you keep looking up on the internet it does your brain in and you cant believe everything! You are the prove and that is good for me. I am really glad you both seem to be doing well on this treatment. Has your onc said what will follow after the Taxol?
Take care
Debsx

KatieP
Member

Re: Back on Taxol

Hi Debs
I'm also HER2 negative but oestrogen positive and I have now had 15 Taxol. I am due a scan after 18 but my Tumour markers have fallen steadily throughout so it does appear to be working. I went onto Taxol as I didn't have a good response on Xeloda. I have kept my hair though it has thinned considerably but have used the cold cap
Good Luck
Kathryn

KatherineM
Member

Re: Back on Taxol

Hi Debs,

No I dont think that's true about taxol not working for her neg and ER+, thats me and i have done 18 weekly taxols and had a "good" response. I had shrinkage after 9 and more shrinkage after the following 9. My doctor was pretty clear that this was the best overall choice for mmy liver secondaries after I had done taxotere, looks like he was probably right! So I think it could be good for you...don't panic if it looks like after 4 or so the markers arent dropping they often go up before they go down,

cathyx

DebsH
Member

Re: Back on Taxol

Hi Everyone,
Just been reading all the comments on Taxol etc. good and bad and lots of positive stuff out there I think! I am starting Taxol next week I think after only taking Xeloda for two months onc has stopped this cos tumour markers are going up slowly and CT Scan has shown liver has doubled in size - still not massive but worrying! Really worried about starting Taxol I dont want to loose hair again but Nurse reckons that I wont loose it on weekly Taxol - 3 weeks on one week off, what do you reckon? I must admit I am a bit confused cos I am HER2 neg but ER+ (I am sure I have this correct will check again next week) but what I am trying to get at is that I have read quite a bit on the net and there seems to be loads of info that reckons taxol will not work for HER2 neg and ER+. As I say I am really confused and hope my onc knows what he is doing we are in their hands but obviously dont want to go through the taxol journey is a waste of time. Sorry to go on. Love to all.

Debsx

geobar
Member

Re: Back on Taxol

Hi Cathy

Brilliant news long may it last. My Onc has told me that the next treatment (if the Taxol works I assume) will be Faslodex.I have only read a couple of posts on here from girls on Faslodex so it will be nice to hear how you go on with it. Perhaps you could start a new thread. Have you been given much info about it? It is still in trials (SOFEA)until 2010 but I would love to hear that it works for a long time so that it delays a return to the dreaded chemo.

Love Barbara x

Jacksy
Member

Re: Back on Taxol

Hi All,
Cathy - that's brilliant news, well done!
Can't remember who was asking, but I seem to remember when I was on Taxol and had halfway scan they said if the tumour had stayed the same size or shrunk, then I'd continue on it, but if it had grown we would try something else. Not sure if this is a general rule....?
I was back in clinic today and having herceptin. Sat next to a newbie on her second FEC, with a 4 month old baby. Hell, it brought back all those early stage horror feelings.I just felt such an 'old hand'. I couldn't believe she looked so normal - it screwed my guts up just to listen to her and she looked so composed. (Now i sound like all those irritating people who say that about me!). It is truly incredible what the human spirit can endure.
Hope you're all coping with the exhaustion etc. Big love
Jacquie xxx

jaynemh
Member

Re: Back on Taxol

Hi
thanks Kate for comment on tumour markers - hope you are right and sorry to hearabout your new concerns - hope it is ok and you get some quick response - when is your scan?
Cathy - delighted to hear your news - fantastic that it was all worth it - enjoy the tapas - Barbara - My onc continued with taxol after half way through scan - it showed no change in liver ( but improvement with lymph glands ) the only time they stopped was for numbness so now wait for scan at end..... feeling a bit rough tonight not sure if its a colod coming or the cumulative effect of taxol... i'm going to curl up in bed!....jaynex

Kay123
Member

Re: Back on Taxol

Really pleased for you, Cathy - fingers crossed that the faslodex keeps things stable for a good long time.

Enjoy your evening. Kay xx

LesleyLP
Member

Re: Back on Taxol

That's really good news Cathy, very pleased for you. Enjoy the evening.

Lesley x

celeste
Member

Re: Back on Taxol

Well done - great stuff. Good things do happen here. Have a good time tonight

AnneS
Member

Re: Back on Taxol

That's great news Cathy. Enjoy your chemo break.

Take care,
Anne x

dippykate
Member

Re: Back on Taxol

Brilliant news Cathy - go and enjoy yourself!! Hope you have a long break off chemo
Katex

debsincornwall
Member

Re: Back on Taxol

Fab news enjoy your tapas.
Love Debsxxx

KatieP
Member

Re: Back on Taxol

Hi cathy
so pleased to hear about your results. will you stay on Avastin? Have had Taxol 15 this morning. Hope you have a great celebration
Love Kathryn

JaneRA
Member

Re: Back on Taxol

Really pleased Cathy.
Have a drink on me..

Jane x

Jennywren
Member

Re: Back on Taxol

Really good news, Cathy! Enjoy your celebration.

Jenny
x

KatherineM
Member

Re: Back on Taxol

hi barbara,jaye and everyone else

had my scan results today and the oncologist was pleased as it showed a continued shrinkage of my liver mets and no new bone areas - so it looks like I get a break. he is trying me on faslodex to see if it will do anything.

to be honest I was expecting something bad as my tumor markers had ticked up a little, but the scan was reasonably good. So the message here is tumor markers are not 100% reliable - they are only a clue.

Very relieved, we are off to a tapas place to celebrate tonight.

Cathyx

geobar
Member

Re: Back on Taxol

Hi Girls

I joined your club in January when I was told that the next chemo was Taxol. I have now had 4 of 12 and I seem to alternate between constipation and mild diarrhoea. I now have a fungal infection on my big toes and am taking antibiotics.I'm not sure if this is a side effect of the chemo. Last weeks blood test showed that I had been given too much Lenegrastim as my white cell count was very high so had a welcome break from the stuff but guess what? the count now is too low and so tomorrows treatment is delayed possibly until Friday.
I am having a ct scan on the 11th March to see if it's working but I am not sure what the onc will be expecting. If tumours are still the same size is he likely to stop the Taxol. Can I ask those of you who have been on it for a while what your Onc's base their decisions to stop or continue on? I think that I am feeling aprehensive because the previous chemo failed and I agreed to this thinking that it would work for a while and allow me some "normality". Have forgotten what a normal life is like.
thanks for listening Barbara x

dippykate
Member

Re: Back on Taxol

Jayne - my onc doesn't beieve in tumour markers as can be effected by many things including the chemo so I agree the most important thing is that your liver function tests are better.

I've had 19 taxols now and will have number 20 on thursday. CT rang this morning and have given me a date for monday 2nd march so that's good as will get the results on the thursday and I expect to change to vineralbine then. We'll have to have a ' was on taxol' thread fo all of us moving on!!!!
Found some new lumps in chest wall this morning - it hurt yesterday evening but could only find a tiny lump. From the mirror I can now see them so really pleased not having to wait till 13th march for scan. Really scared and feel very vulnerable this morrning and trying to sort out getting benefits and grants and want to do my life story instead.Also was really looking forward to having a facial and reflexology this morning but the beautticiaan's husband accdently took the car keys so she can't get to me and not feeling well enough to go to her!!!
Hope the results of the scan are OK for you.
Kate

jaynemh
Member

Re: Back on Taxol

Hi Cathy
yes! well done - really hope the scan results are good - jaynex

debsincornwall
Member

Re: Back on Taxol

Cathy,
fingers and everything else crossed for you, 18 taxol well, that is incredible. I take my wig of to you.
Love Debsxxx

KatherineM
Member

Re: Back on Taxol

I guess i will check in here as once member of the taxol club - always a member. I have done 18 of 18 and have had the scan and results are soon. Worried , worried worried, usual scan anxiety but I don't have to wait that long for results at my place,

Debs- yes ! I have never thought about it but we have 1 (just 1)cute young doctor at the hospital and he lifts everyones spirits, he is actually quite nice as well and always a pleasure to talk to...I wish I had a pair of your shoes to wear one day. Should have spent more money on things like that - one of my few regrets,

Jayne - confusing - but I think its more important and really good that your liver function is getting better, Its probably a really good example of why doctors can't use tumor markers on their own for anything. You should ask a straight out question to your onc on that one. My markers have ticked up at the end of taxol so I think for me its fairly clear what has happpened...time for something else.

hope everyone is having a good weekend,
cathyx