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Back on Taxol

dippykate
Member

Re: Back on Taxol

Sorry getting confused on these threads!! Have you actually arranged a date for a Bristol meet as can get there by train very easily but never on a thursday.
Had a fab time in eurodisney - just don't ask about air france and canveeling flights etc. Too long here and inappropiate so will eventually put it on blog or facebook!!!
Kate

AnneS
Member

Re: Back on Taxol

It would be great to meet you if you do manage the Bristol meet Debs. You'd be welcome to stay over with me (an hour from Bristol in South Wales)if you wanted.

Hope the tax/Avastin on Friday isn't too taxing - pardon the pun!
I'm probably going to have some good news regarding my financial settlement of my divorce on Monday as it looks like we've settled out of court but won't believe it until it's signed and sealed in court on Monday. I feel the wind is changing for the better so I really hope my scan is good at end of Feb as I feel I've lurched from one crisis to another during last year and I really need a break from that!!
I really hope the hickman line goes in with no probs.
Rooting for you Debs!

Take care,

Anne x

debsincornwall
Member

Re: Back on Taxol

Hi Anne,
lovely to hear from you, I am getting more used to the site at least Bertie has listened to us and made improvements poor man I don't think he knew what hit him.
I am waiting for district nurse to change dressing, crazy really all the stuff I have gone through with secs and this wound has really got to me, it is so ugly and very visible. I am not vai but it has really .issed me off.
I am so pleased that you are able to enjoy your chemo break, I have tax/avst on Friday straight after they put in a hickman line so fingers crossed that goes well.
Enjoying the thread on your Bristol meet up I may if I can work things out join in but it is a 3 hour drive each way and we could be having visitors as it is half term.

Hope all the other TAXOL team can find us and carry on posting and those no longer on tax stay in touch. We need to know about other chemos.

Love Debsxxx

AnneS
Member

Re: Back on Taxol

Hi Debs,
Sorry you're wound is still troubling you. Sounds awful and as if you haven't enough to deal with!!
I'm finding this site difficult but glad to see they're trying to improve things with the categories on the side again but still confusing to me - don't feel you get the overview of all the topics as you did before.
When is your next taxol Deb? Am still enjoying my chemo break but next scan at end of Feb so trying not to think about it at the mo! Feeling about 90 with my joints on Arimidex but hey!
Have a good weekend.

Anne xx

debsincornwall
Member

Re: Back on Taxol

Well at the moment I don't seem to be very patient. District nurses are taking good care of me tending to my wound. It looks like someone has dug in my right breast just above my bra, it is the size of a 50p and about 1/4 inch deep. I was supposed to have hickman line tomorrow but asked if I could wait for this to heal. I think I had bonded with 'blinking eye' and it looked better than '50p crater'
Hope everyone is o.k. and finding their way round easier than I am.

Love Debsxxx

delivic
Member

Re: Back on Taxol

Thanks for the tips Debs Ive passed them on to my mum and she will mention it tomorrow.

Kate - hope you are having a good time at Eurodisney.

Vic xx

jaynemh
Member

Re: Back on Taxol

Kate - thank you for the info about how to access blog!
I think its just awful - to be honest I see patients who are favourites and not favouites at my chemo suite and i think its really unfair - i an teetering on being perceived as difficult because i ask too many questions and question delays as i have to travel - so what you say makes perfect sense to me - i think your waiting times surpass anything i have ever seen and are disgraceful - as the lack of suitable chairs - you are so right to challenge this - have a good break ...jaynex

AnneS
Member

Re: Back on Taxol

Kate,
Am absolutely disgusted and horrified by the low standards of care you are receiving and have received over such a long time. You should be treated with dignity and respect and it just sounds awful! As you know I had 22 lots of taxol last year so I know how draining the treatment is on its own - never mind with all the waiting you're having to do and I've not had any symptoms yet from the disease so I can only imagine from what you describe the pain you are obviously in.

I have experienced chemo both on the NHS and privately and there is such a vast difference in the speed and consistency of care. I know the NHS is under funded and is hard with the numbers of people needing treatment but the gap is too wide.I feel really guilty that I have been able to have the taxol through BUPA from home (my ex's company scheme)and I've been lucky to have mainly the same male nurse for the entire 9 months who is mega efficient and usually was with me maximum 3 hours and that's with Avastin as well as Taxol. The one time we had a problem with a "bank" nurse sent who was clearly out of her depth when I fainted and my blood pressure plummeted,my husband was able to ask for her never to come again. I know there isn't the same luxury on the NHS. When on FEC under the NHS in 2003 we used to arrive at the hospital at 9.30 and leave at 6pm - it's so draining when you're feeling well never mind with what you have to endure Kate. You would think after the length of time you've been going there and your current state of health that they would be able to absolutely make sure that you had the absolute minimum waiting time and that they would make sure that a recliner was available for you. The nurses should at least be sympathetic to your situation and not get defensive. They should try going through chemo!!

Anyway sorry rant over but I was just incredulous at the way you've been treated after so long. No-one would want any memeber of their family to be treated in such a way.
I've had trouble with trying to copy and paste the letter so far but will keep on trying and forward it.

By the way Kate, you mentioned on your blog about ESA which I'm also applying for. I would get someone to ring on your behalf regularly about it - just that I put my application in in mid November as my SSP was due to expire on Dec 23rd and it's still not gone through. They say it will be back dated from 23rd Dec but no money yet - I sent back yet another piece of info this morning - also they lost my original SSP1 form from my employer and I had to get another one and I've been advised to take in original documents to the local Jobcentre plus to photocopy and sing to say they've seen the originals as a lot of original documents sent to DWP tend to get lost. It's really what you could do without with all you've got on but thought I should warn you as my application have so far taken 2 over 2 months and still no money. Of course your local office may be better than mine but I would chase it up or get someone to chase it up for you. They're supposed to fast-track these things when you're under the DS1500 special rules but it doesn't seem fast for me so far!!

Anyway I hope you can switch off from all that and have a fabulous time with the children in Eurodisney.

Anne xx

KatherineM
Member

Re: Back on Taxol

Kate

I do think when you are on the treadmill you all get a bit sick of each other - all the nurses are really nice and considerate but sometimes i think they get a bit fed up with me as they see me all the time, so we are all a bit bored with each other. There are alot of characters who come into "my"chemo suite who are larger than life, there is a lady who gives all the nurses presents, and i often think I am much duller than they are as a patient, but at this point I just feel i can't be that entertaining I also think your old profession is somthing to do with it - that the nurses think you are just a bit too knowledgeable and they don't like being caught out (ie doing stupid things like giving you taxol without checking your weight or not giving you premeds which is just outrageous).

Anyway - have been blathering on but just wanted to say I had an acknowledgement and they said they will reply to you personally,

Debs - good for you...fairness and reasonable treatment for all! These people would not last 5 minutes if they were the patients.

CathyX

Kay123
Member

Re: Back on Taxol

Kate

Just wanted to say that I am really horrified at the treatment you are getting at the hospital - I would have thought having recliner chairs available was an absolute minimum standard-wise. Hope you get a decent response from the Chief Exec/complaints manager and that real changes are made. Know what you mean as well about looking "too well" - amazing how people immediately seem to judge how well people are by how they look and nurses really ought to know better.

Really hope also that you have a fantastic time in Eurodisney.

Lots of love Kay xx

debsincornwall
Member

Re: Back on Taxol

Hi Kate,
I am so in favour of fairness it really does get me cross when these bullies pick on those who are in a vulnerable situation. As you know last week I had my port removed and the district nurse has to come to change dressing Wed -port removed hospital rang to book district nurse, Thurs electric off in our area so planned to go into Stives for late lunch after nurse had been to do dressing all phones diverted to Ian's mobile as he works from home. At 11ish phone rings I answer with company name and a rude voice says she must have wrong number as is ring a house bound patient. I reply I am patient and explain phone situation, she did not arrive until 4pm. had I been a shrinking Violet type of person I would have been worried sink and frightenednand intimidated by her tone. As I am not I just got my mad up! When she arrived and I fully explained how, who and what I am about I had her eating out of my hand. Today her superior came and we had a good chat she said she felt she knew me when she had seen my name but no we didn't know each other. As we talked she said she remembered who I was - the woman on the radio and tv from last year and thought I had done a very good job on the drug and co-payment front. We had a good chat and we discussed the other nurse and I said I could deal with her no problem but what about all those sweet old dears who may have been afraid of her. So she is going to deal with the other nurse.
Have a good holiday and a fabulous birthday.
Vic I take ondacetron for the first 2 days after chemo and if I need to top up I take domperidone. Ondancetron are alittle bit more expensive but that is no reason why they cannot be prescribed so check your mum's tablets.
Hope everyone is o.k. we are going for a walk on the beach as the sun is shining and I have streiods in my system to aid me.

Love Debsxxx

delivic
Member

Re: Back on Taxol

Hi Kate

So sorry to hear about what happened - you are def right to complain you shouldn't have to put up with this - like the process isnt stressful enough. If there is anything I can do please let me know.

Debs- my mum is doing ok she had 2nd Taxol on Thurs, was very sick yesterday though so she was bit peed off as the dr said it doesnt normally have this effect. Macmillan nurse coming on Tues and her wig is arriving next week so some positive things happening.

Vic xxx

dippykate
Member

Re: Back on Taxol

Well the sister who tried to give me the taxol without any pre-med of piriton, dex, ranitidine and ondantrason ( I've had this feeling for a while they'e trying to kill me off!!)rang me at lunchtime to say that from now on if I wait to see the consultant in the usual area, they will get me a treatment recliner chair for me to use after I've seen the consultant. It's some progress but not ideal as you can still wait for 2 hours to see the consultant. I have an 11am appointment the week after next and then have 930am appointments for 2 weeks so hopefully will be able to get early appointments after that which will cut the delay in waiting to see the consultant.
One of my friends who has been with me on several occasions wrote in her letter that the nurses are horrible to me and disbelieve me when I say I am in pain and she has said she has seen them roll their eyes up and gets the impression they do not like me or treat me with equality or respect. This is something I have felt but thought it was me being paranoid as I try very hard to keep out their way and do not hassle them about the waiting time until I've been sure that my treatment is there and I've seen people with later appointment times go in before me/ I felt I was being victimised and now she has provided the evidence that I am. I have had the feeling for a while thatthey pull lots to see who is 'the unlucky one ' to give me treatment and from what she has written it feels true. I've got a longline so they don't have to fiddle over cannula and I usually fall asleep due to the IV piriton, oromorph and diazepam so I;m hardly a nuisance. Their attitudes towards me recently has been one of the reasons why I haven't complained as I was worried how they'd treat me and now I am even more worried that my complaint will degenerate things further not that I really care as they can hardly treat me worse. I'm also not usually afraid to complain either but think I've had enough and despite promises of change it never happens.
I don't think it helps that i've been going there since april 05 and never had longer than 4 weeks without being there so I think we are all fed up with each other and the other thing is I look so well so I don't think it crosses their minds how ill I am as I actually look better now than I have for a long time and as they never come out of the chemo room apart from to call your name, they have no concept of how i really am and I wonder if they even know where my secondaries are.
My son has written a really poignant letter to John Denham saying that he is very sad every thursday as I don't see him as I;m so late home and when i do get home I'm in too much pain to cuddle him and he doesn't understand why when my treatment is 2 hours long, I'm away for 6- 8hrs. It's got a lot of spelling mistakes in but is on the computer so don't know whether we should correct it or just leave it as it is. He is 11 and wants it to be correct as his twin sister has pointed out his errors and he wants it to be correct as it is going to an MP.
I haven't had a reply direct from the Chief Executive or the complaints manager. They got a junior sister to do the dirty work which is what I suspected would happen and another reason why I hadn't wanted to complain as it will make the relationship (what relationship??) worse.
Be interested to see what John Denham does/says.
Debs - Thanks for the offer of going to the press and feel I should not just for me but for the other women who are in pain there and will not complain. I just can't face going to the press at the moment. Maybe when I return from eurodisney and see what happens in the next few weeks I will feel differently. At the moment, I just want to forget about chemo and go away with the children and have a good birthday.
Thank you everybody - I really am overwhelmed by yur kindness
Kate

jaynemh
Member

Re: Back on Taxol

Hi Kate
would like to forward your letter - where is blog - i get a bit confused with terms - posts/blog etc sorry! Jayne

debsincornwall
Member

Re: Back on Taxol

Hi Kate, consider it done, I have had taxol today and had a long wait for it to be made up nurse said they had been arsy with her all week she thinks it is because she complained about the frogspron taxol last week. Two other more senior than her people confirmed it was not safe to use. I like you want fairness within the health service and will bang my drum until cancer takes me. If you would like me to ring a reporter on the breakfast news for you I will. Maybe you could p.m. me with your mobile number. I know at my hospital they take all complaint very seriously and have to act immediately. I think it is disgusting that you don't have a comfy recliner seat we only have recliner seats in our chemo unit and this is Cornwall where most things are several years behind.

Love Debsxxx

TerryJ
Member

Re: Back on Taxol

I have sent it too. In Spain we never get an uncomfortable chair, they are all recliners and beds available to those that need them. Plus there are at least 15 nurses on station all the time. Sure we have to wait to see the Onc, but never do we have to wait anything you do.

XX

KatherineM
Member

Re: Back on Taxol

oh kate that is awful, the last thing we want in this situaition is to waste the day at the hospital and to be in pain like that. I have forwarded your letter to the complaints manager stating i was receiving the exact same drug plus avastin, yet my hospital manages to get me in and out within 4 and a half hours week to week, and i could sit comfortabley - so why did they have to treat people so poorly? I hope its some help and I hope they do something, its really nasty and they will know it if they are in the same situation.....but no justice in this world.

glad bloods OK

cathyx

dippykate
Member

Re: Back on Taxol

had a really horrible time today. transport came at 10am and came hpmw at 730pm.had a really long and painful day at chemo. Feel the nurses don't care at all apart from the research ones and the receptionist who after 6 hours got me a recliner chair so could be off my bottom.
I've written to my MP, the Chief exec (the chairman of the board told me he wants to deal with the complaints. and the Trust's complaint manager. Their names and emails are easily googable. I'd love to fill their inbox with my letter.The copy of it is on my blog so if you fel you've go time please either rejig my letter or forward it on explaining why you have done it - would be so grateful.
Bloods OK so [leased abut that
Kate

Maroke
Member

Re: Back on Taxol

Hi Debs,

glad everything went ok and the winking eye was removed. Am so sorry this happened to you as a port makes everything so much easier (well, normally it does!)

love Peggy x

magsi
Member

Re: Back on Taxol

Hi Debs,
Glad yesterday went well.
Loved your reply to the phone call asking where you were. That sounded so like you - I could just imagine it.
love to you and Ian
big hugs etc
M&D / P&B xxxxx

debsincornwall
Member

Re: Back on Taxol

Hi everyone, hope all is well in taxol land.
I have just returned from Truro where consultant removed 'winking eye' wound may not have healed but it was certainly well embedded in my breast tissue so a little of that has been sent away for tests. I was told by consultant to arrive at 11am phone rang at 9am to ask where I was. Well I said 'sat up in bed eating my toast' I was asked if I could go to Truro as I was expected at 8am. Consultant came to meet me I apolagised for being late and he told me I wasn't he said it wouldn't take him long and there was no point in having us hang around all morning. As my breast is a bit sore with not seeing day light and having plaster on it for the past 2 months he put some cream on before gibing me local. Did not feel a thing no heavy bleed this time and over in minutes consultant was chatty this time he knew I was not going to be ignored! The nurse that returned me to recovery said he was a shy man and that I had him eating out of my hand she had never known him as chatty. He is going to wait a couple of weeks and try again he thinks maybe I should go for a hickman line. We will see. District nurse has to come and sort out my wound.
Ian and I went off to Truro to Mannings for lunch.
Kate hope they don't leave you too long this week I understand how busy the chemo unit is but that is no excuse. Like you my condition is not as it was and it really is stressful when we have to wait ages for a seat. Hope you your mum and the children have a good time in France I am sur the children will have a ball and add more memories to the ones they already have.
Vic hope your mum is doing o.k.

Love Debsxxx

delivic
Member

Re: Back on Taxol

Hiya Debs and Kate. Thanks so much for your replies it means a lot and the tips are much appreciated - I will pass them on to my Mum. You are right though its absolutely knackering and shes spent most of the weekend zonked out (she feels gulity for doing this too!!!).

Kate you are right - my mum heard wrong about herceptin its every 3 weeks and the Taxol will be for about 3-4 mths for now and we will see how it goes.

She got a bit freaked out as the dr has arranged for her to have oxygen at home and also for macmillan nurses to come round but her BCN reassured its just to make sure that she gets all the helps she needs.

Once again thanks for taking the time to replyit really does mean a lot to me and my mum

Vic xxx

dippykate
Member

Re: Back on Taxol

Delivic
Herceptin is a sort of antibody treatment and so you can get high temperatures/flu like symptoms especially with the early infusions. They usually make you wait for 6 hours after the first infusion in case you have a reaction. I had a flu like high temperature at just over 5 hours after the 1st infusion and so ended up staying in for another couple of hours!! I felt a bit like it the second time but only for about an hour. I've now been having herceptin for over 3 years and apart from a runny nose am fine although my heart function has dropped in that time. Saying that I have a huge tumour in my lungs which puts pressure on my heart as well so who knows what causes what!!
I'm sure the herceptin will get easier as time goes on. I'm sure I read she was having it 2 weekly - did you mean that or 3 weekly. I've never heard it being given 2 weekly before.
With my weekly taxol, my hair thinned very slowly for about the first 8 and then it fell out but now on number 16 and is regrowing now. I've had several weeks off due to chest infections so I started my 18 week course mid august and last week had number 16. As it is my last chemo option, I can stay on it for as long as it works or my body can cope.
My fingers and toes became quite numb and tingly with the initial taxotere and worsened with the vineralbine and the weekly taxol has worsened things further but would rather put up with that than the awfulness of my secondaries.
I don't get too tired but I live a very limited life really now - well I go out a lot but I use my mobility scooter and drive a lot. I just don't walk or shop or do housework and get a lot help from carers.
Debs - I luv your sense of humour!! Where do you get the strrength to keep it up? I would be so petrified with 'your blinking eye' and will be relieved for you when it is removed.
There must have been something odd in the batch of taxol this week as mine was all frothy and was pleased that it got rechecked and that there was a filter as well on the line.
Your day was about the same length as mine - it just gets so wearing week in and week out but pain in back has improved since restarted the taxol so it must do something for my bones as well as my swallowing.
Oh well, see what happens this week.
Kate

debsincornwall
Member

Re: Back on Taxol

Hi Vic,
can't help re herceptin as I am not her+ but thr whole procedure when you are not in the best condition is completly knackering. I have read your other threads so am up to speed on your mums condition. Make sure she gets plenty of fluids in her, I have several cups of boiled water as well as fruit drinks, green teas and if you are not already doing it organic milk. I take manuka honey in warm milk before bed if mum does not like the taste I put in my horlicks get the high strength stuff from Holland and Barret plus your mum may get bunged up with all the anti sickness meds ask the hospital for movicol and I us diflam helps stop mouth thrush I dilute 1/2 diflam and cold water in cap. Hope this will help.

I must say it was not frog sporn in the bag I am sure everyone will be checking with their chemo nurses this week sorry did not want to create a panic.

Love Debsxxx

delivic
Member

Re: Back on Taxol

thanks everyone.

Well my mum ended up being in Hospital for 13 1/2 hrs today! Not sure of full details yet as dad relaying info but after they started Herceptin her temperature shot up so they had to stop for a while - is this common??

Eventually they did manage to administer the Taxol and Herceptin but she was obv very tired.

Debs- Cant believe that about the dodgy bag!

Vic x

geobar
Member

Re: Back on Taxol

Hi Girls

Thanks for all your advice. Yes Kate it was me who you spoke to on live chat the other week. Can't say I'm looking forward to the chemo but I am really hoping it works. I have never known what my cancer status was as the Nuffield hospital where I had the mastectomy op managed to lose my sample ( don't ask) and because I responded to Tamoxifen and went almost 13 years before the secondary dx, my Onc has always treated me as ER andPR positive. However if the Taxol doesn't work I will ask for a biopsy to confirm exactly what my status is. I have to say the Onc is very reluctant to do this.
I assume my hair will all come out? what about the tingling and numbness in fingers does everyone suffer from this. I was warned it might be a problem.

Deb - Can't believe what I have just read about the dodgy bag of Taxol. How on earth did that happen. I will definitely be looking very closely at the the bag before allowing the nurses to inject me.

Will keep you posted
Barbara x

debsincornwall
Member

Re: Back on Taxol

Hi everyone,
welcome Vic hope your mum does o.k. everyone that needs advice help whatever is very welcome there are lots of lovely people here ready and willing to help.

My port saga continues.
Today I had to be at hospital for bloods at 11a.m. Only taxol today so we were looking to get back home after a walk around Truro and a bit of retail therapy.
Hand very black and blue still from last weeks 4 attempt to find a vein and scan. Nurse very sympathetic and said she was going to find consultant re winking eye in right breast! I sent Ian out to do a shop as consultant operates on Friday so knew we in difficult territory. Needed mascara even though a few eyelashes have appeared around winking eye so may lose them all any day soon. At 1pm. bloods o.k. so pre meds given need to wait 30 mins and then ..............................
FROG SPORN in taxol bag need to get someone from pharmacy to check it. Then we need someone more senior several phone calls later head of wherebloody ever comes and confirms bag not safe to use on dying really hiised off cancer impatient!
Consultant is called by my onc can he help out and see me between procedures. Onc knows me very well and can judge that I am about to be very uncool Ian has returned from shopping and cannot believe I am still sat with sad all being done! Consultant saves the day and meets me in between op's. He will take out 'winking eye' on Wednesday and put in Hickman lines a week later.
Back for chemo canula has been put in fore finger near to knuckle and has developed a twitch so I need heat pads, no way are we going to find another vein in my poor shriveled black and blue hand. Ian and I have a nice cup of tea and a biscuit and taxol begins. Wound has a good seeing too given more cleaning stuff and dressings an hour later and taxol has gone in bag is empty and I can leave. Well it's only 6.15 not the longest day we have spent in chemo so I won't complain it has been one of those things by next week I am sure we will be laughing.
Hope you are all doing better than I am!
Love Debsxxx

jaynemh
Member

Re: Back on Taxol

Hi Baraba / Vic and others
Heres my penny worth!
I can echo what others have said - I have just had number 13 weekly Taxol today - and have felt ok - tired at times and achy at times ( which could be the bone stuff or the herceptain which i have evry 3 weeks) I also am on a high from friday until sunday when I crash a bit - could be the steroids they give me before? Have also had a bit of thrush and take a pill for constipation the day of the taxol as I get a bit constipated for the first day or two............Am still working but have decided to take a day off a week from next week as energy is low and I really need a pottering day - chemo and travelling to hospital is so bloody time consuming!
.It was explianed to me that weekly taxol is kinder than having it every 3 weeks - so my bloods are ok but tumour markers are higher ( my onc says they are unreliable ?) after 9 I had a scan which showed improvement in lymph and stable ( no change) in Liver
Hope it worls for you Barbara and your Mum, Vic

delivic
Member

Re: Back on Taxol

Can I join the Taxol club on behalf of my Mum!? She starts weekly Taxol and fortnightly herceptin today , been reading up on tips for her (as she was supposed to start Taxotere today but the oncologist said she would end up hospitalised if she was put on it at this stage).

Vic

dippykate
Member

Re: Back on Taxol

#oh Barbara - think we discussed this a bit on live chat or was that another time/person!!!
I'm meant to have finished my 18 weekly taxols at christmas but had no 16 today as been in hospital twice with chest infections so had delays. My wbc count has been variable but never had it delayed because it is too low and have only needed 1 blood transfusion but really been on continuous chemo apart from some 4 - 8 week breaks since sept 06 so think I'm doing ok on it. It did take 3-4 weeks before I noticed any reduction in my tumours but once they started to shrink they continued to do so even when the dose was reduced. I get a bit tired but at this stage it's difficult to know whether it is disease or chemo. My weight has stabilised but constipation has been a problem.
it is just so time consuming going every week especially as I'm there for 7 hrs for an under 2 hr treatment. Hope your chemo suite is more efficient.
I found 3 weekly taxotere so bad. I only had a few good days in the 3 weeks
Hope all goes well and welcome to our lttle club
kate.

KatherineM
Member

Re: Back on Taxol

Hi barbara

I have had taxol 15 , found it pretty hard going after 14 but feel ok today. I am still working but make my own schedule - so if I can't come in one morning i will have a lie in and then make up the time. I havent seen my tumor markers since number 10 but presume they haven't shot up as no one has said anything It is a bit of a hamsters wheel and I feel that the nurses at the chemo suite have seen a bit too much of me but they are very kind. After the taxol i have the neulasta injections (or whatver they are called) which have kept my blood counts ok. I do get very tired but just about manage to lead a relatively normal life despite slow and steady weight gain......taxol is definitely easier than three weekly taxotere for side effects, but its hard work going all the time....

Cathyx

KatieP
Member

Re: Back on Taxol

Hi Barbara
welcome to the Taxol ladies! I have just had number 11. I also have Avastin which is 2 weekly . My bloods have been fine so far and my tumour markers are coming down so I am happy to soldier on. the plan is that I have 6 cycles and then a scan. I am supposed to be hormone positive but my secondaries were diagnosed while I was on exemastane and Arimidex didn't hold it either. I am tired but am still working, I usually go home mid afternoon and rest and am tucked up in bed by 9, 9 30 ! Also trying to keep on top of the constipation!
Best Wishes
Kathryn

JaneRA
Member

Re: Back on Taxol

I was on weekly taxol for 8 dioses. I had 3 weeks on, then neulasta and 1 week off. My bloods were OK all the way through. Side effects from taxol were mainly fatigue (which was often worse on the week off than during the weeks on...but tiredness is my main chemo side effect and I've now had more chemos than I can count. Taxol was easier I found than 3 weekly taxotere.

best wishes and good luck (taxol didn't work on my regional tumours, but my cancer is proving resistant to nearly all types of chemo...and many women here are getting good results.

Jane

debsincornwall
Member

Re: Back on Taxol

Hi Barbara,
welcome to the taxol club! My bloods have always (up to now) been o.k. I have my taxol on Friday so feel o.k. until Sunday night when I get really knackered usually sleep most of Monday a bit dozzy Tuesday and then pick up Wed. Today I feel o.k. but we start all over again tomorrow. I like to cook dinner so I usually cover the Monday by doing extra on Sunday. I just give in to the tiredness some of the ladies are still working and I am just in awe of their chutzpah! Drink plenty of water while it goes in and try and keep bowels working.
We are all here to help so give us a shout if you need us.
Love Debsxxx

geobar
Member

Re: Back on Taxol

Hi Girls

Can i join the Taxol club please? Had FEC last year and unfortunately it only worked whilst I was on it and it looks as though the Aromasin isn't working either. The latest ct scan shows progression in the liver ( and the bones) and so I was offered a choice of Taxotere or weekly Taxol. I chickened out of the Taxotere as I have read some horrid stories about the side effects and so I'm hoping that I've made the right choice with Taxol. I start next Friday but I feel rather confused about what happens if the WBC are too low to give the next dose. Do you have to wait a full week again? The Onc has warned me that even if bloods are ok to start with, eventually they will drop and he estimates that it usually takes about 15 weeks rather than 12. He has agreed to me having a scan after 6 to see whether or not it is working and if there is no sign of shrinkage he will stop but he didn't say what it would be replaced with. He is hoping for stable and then I will start on Faslodex which is still in phase 3 trials. I have read several posts about how people have coped with Taxol and I am aware that we are all different and respond differently but it seems as though you are on the "hamster's wheel" when treatment is every week and there doesn't seem to be much of a break in between. Last time I had to have the Lenigrastin injections (UGH !) for five days following chemo and if the same happens with Taxol then I can't see me leaving the house very often.

Any advice would be welcome thanks

Barbara x

debsincornwall
Member

Re: Back on Taxol

They say 'any port in a storm' well not his port. Today it looked a bit yukky so went to g.p. who did a swob. Gave me antibiotics and they are ging to ring onc. I have chemo on Friday so told them I would wait until then. I cannot begin to tell you how hissed off I am I know it is going to be taken out but where will they put the next one. Has anyone had 2, has anyone got any spare veins I have a very black arm and hand from chemo and scan I just want to scream, I am so fed up.
Sorry rant over. Hope everyone is o.k. that the flu bug has left us all and that we all have good scan results and brilliant shrinkage in the months if not years ahead.

LoveDebsxxx

KatherineM
Member

Re: Back on Taxol

Happy birthday Debs it sounds like you had a really lovely birthday - I can't believe how much trouble the port has caused you given that it was supposed to help you .

Jenny - Happy Birthday to you as well.

We all deserve a treat!

love
Cathy

Belinda48
Member

Re: Back on Taxol

Happy Belated Birthday Wishes Debs sounds like you had a lovely time. Sorry to hear about the port nightmare are they going to try again.

Anne so pleased to hear your news have a great time in Spain.

Hope you manage to get away Cathy.

Love Beli xxx

debsincornwall
Member

Re: Back on Taxol

Thank you all so much for your wishes, hope Jenny you had a lovely birthday. I did Ian bought me a bracelet to match the necklace he gave me for Christmas it's by Georg Jenson very posh white gold. My girls gave me Chanel makeup and a dock for ipod that shows photos flowers and chocs from friends. As St Ives is very quiet we were able to get a table without booking so we went to Cafe Pasta on the front and the moon was shining brightly as the tide came in. The atmosphere was really good and the food fab. Can recommend it to those visiting Cornwall this year.
Still got my wound expect a call from hospital tomorrow to sort out date for removal. The back of my hand is black after all failed attempts to find a vein for scan and chemo. Funny how we deal with the big problems and a little vein that wont cooperate can get us into such a frenzy.
Hope you are all well and recovered from the seasonal stress.

Love Debsxxx

KatieP
Member

Re: Back on Taxol

Jist wishing both Debs and Jenny very happy birthdays, hope you both had a great day!
love kathryn

dm1968
Member

Re: Back on Taxol

Happy Birthday Debs - great news about your shrinkage too.

Have great weekend.

Love
Dawn
xx

AnneS
Member

Re: Back on Taxol

Happy Birthday Debs!! Good news about mental fil - love the name!
Hope you are able to enjoy the weekend and hope you are being thoroughly spoiled as you deserve it!!

Love Anne xx

Maroke
Member

Re: Back on Taxol

Happy Birthday Debs,

such good news about the shrinkage too. Am really sorry this nurse screwed up. My port has been a godsend!

love Peggy

dippykate
Member

Re: Back on Taxol

HAPPY BIRTHDAY DEBS - Have a fantastic day.
Good month for birthdays then - yours and Jennywren's today and mine on 30th!!!
Debs - great news on the tumours and so sorry about the port situation - this has been such a nightmare for you. You've been very patient and stoical about a horrific situation which was caused by someone's negligence. I hope the situation improves for you.
love Kate

jaynemh
Member

Re: Back on Taxol

Great news about shrinkage and infiltration - hope the port gets sorted out - why can we not just have good news without the but.....
Have a wonderful birthday - no buts- hope you get loads of lovely presents jaynex

debsincornwall
Member

Re: Back on Taxol

Hi everyone,
well it is good news bad news. Good news scan results show shrinkage on liver tumours and omental infiltration 'mental fil'. Bad news they will have to remove port if it is nor going to heal there is a very serious risk of infection as you can see the metal bit peeping at me, and them. Onc has had a very lenghthy word with nurse who insisted on sticking dibber in wound area.
So relieved Kate you can carry on with taxol, hope the swallowing improves.
Just got back from hospital as it was pamidronate avastin and taxol plus chat re wound and scan. We are having a take away chinese I think.
Have a lovely weekend everyone, it is my birthday tomorrow so we are going out. If I am not to tired after opening all my presents.
Love Debsxxx

AnneS
Member

Re: Back on Taxol

Thanks so much for all your comments. I still can't quite believe it and want to make the most of this time even if I don't get to go abroad if my ex won't have the dog.
Geraldine - not able to continue with the Avastin as BUPA still will only authorise it in combo with chemo but my onc. seemed to imply I might be able to go on it again in combination with a different chemo - he mentioned trying xeloda or taxotere but hoping I don't have to think about that for a while!
Take care all and I really think this site is fantastic!! Thinking of you all.

Hope you're doing ok Dawn and coped with Christmas ok.

Love Anne

dm1968
Member

Re: Back on Taxol

Fab news for you Anne, it is great when people can share such good news with us all. Hope u have a fantastic holiday too, and long may your scans stay clear for you.

Take care
Love
Dawn
xx

Gerry69
Member

Re: Back on Taxol

Anne - I am pleased for you! Are you continuing with the avastin? I certainly feel better with no chemo but I know what you mean about stiff joints!

Geraldine

Kay123
Member

Re: Back on Taxol

Really pleased for you Anne - and have a brilliant holiday! Kay x