Hi
I was just going to wish Dugsy well for tomorrow and saw your post, Pumpkin.
I seem to be back to normal, that is chemo normal. Had number 8 yesterday. Yes I did have a scan but, as I thought, it doesn’t really tell much. Onc said things looked about the same as last scan but that was 3 whole months beore starting any treatment. I know the thing was growing in that time, I could feel it! He said the bile duct was enlarged as well as the tumor in my stomach but I knew there was some problem there too - they had said that in the GI dept but they thought pancreas. But, as onc said, treatment is the same! He did say he needed to discuss it further - I didn’t catch who with. Back to see him next week.
How are you doing now you have finished with taxol, Pumpkin?
Dugsy I hope your visit to the Marsden goes well. Let us know!
Sarcath
hello ladies,
my sisters fbc went back up to 12 after her blood transfusion, lets hope it doesn’t drop too low again. Taxol 14 done.
dugsy, good look at the marsden, we have been twice to see the professor who is lovely. He gives us reassurance that my sister is on the right treatment.It is also the place to go to talk about trials, new treatments etc, lets hope lots more treatments become available very soon and the govenment pull there fingers out!.
love and best wishes to you all, claire x
Hi gang, hope everyone is OK and feeling slightly Christmassy??? I have felt really completely knackered since my final taxol,it’s taken ages to get over it, and half of me wonders whether it is all in my mind, it being the last one and all. I also feel a bit weird, kind of like sickly, nauseous quite a lot of the time, I don’t know what it is, I think maybe it is because I’ve come off the chemo and I’m scared the exemestane isn’t going to work, but I’m sick of feeling sick and churned up!!! Something to look forward to anyway, the nurses in the Onc unit have a “Patients Party” for Xmas in a local hotel, food and entertainment all supplied and the nurses dress up as elves - I can’t wait to go but I’m thinking Patients Party??? What has my life turned into??? Most of the Patients are all ancient and there’ll definitely be no totty, but hey ho, anything for a bit of hot buffet!!
Anyway, Pumpkin - no I don’t have any SE’s from the zoladex. I have a friend who gets it too and she gets lumps under her skin!!
Love to everyone, hoping to hear all your updates soon xxxxxx
Hello all!
Sorry haven’t been on for a while, it’s been such a busy week or so & I’m feeling shattered!!! Went to have Taxol number 11 last Tuesday & happened to mention that I thought I was getting a cold & they wouldn’t do the chemo!!! Should have kept my damn mouth shut as needless to say it came to nothing, so was a little cross about that! Then the following day went to Royal Marsden for chat with the prof. He agreed with my onc that I could finish the Taxol after this cycle & go back onto zoladex & start Exemestane. However because I missed Taxol 11, which was the middle dose of the cycle, he now thinks I should do 3 more weeks to finish off properly 
Which would mean I wouldn’t finish until Dec 13th. Haven’t heard from my onc yet, so will wait & see what she thinks of this. Going in for next Taxol tomorrow, so might learn more then. So I’m not sure if I’m coming or going at the moment!!! Prof also suggested an MRI of my spine, as I’ve yet to have one done, so they can see in more detail what the state of the bone is where there are still hotspots. So much for me having Dec off from treatment!!!
Sarcath - presume you have had your Taxol this week? Hope you are feeling ok, you really have had a rough time. Any further news on your scan yet?
Claire - hope the transfusion is still doing it’s stuff for your sister & she is feeling ok 
Wannee - are you feeling better? I think we underestimate sometimes the effect chemo has on our bodies & how long those effects can go on, so be gentle on yourself & rest up! A Patients party, lucky you!!! Nothing like that on offer where I go!! An excuse for everyone to forget everything for one night & have a bit of fun!
Pumpkin - how’s things with you? Are you back on hormone therapy now? Hope SE’s aren’t too bad.
We went to London yesterday - took the kids to see The Lion King - it was fabulous & the kids thought it was amazing! High praise indeed from a 12 year old boy!!!
Take care one & all,
Dugsy xxx
Hi
So pleased to see your post, Dugsy - I was beginning to worry! I don’t know if keeping quiet about your cold would have been a good idea - I did just that when I had a sore throat for taxol 7. Then it developed into that nasty infection that landed me in hospital and made me miss number 8 - so it caught up with me in the end.
Anyway had number 9 today - half way! Registrar took ages drawing me a diagram of what the radiologist had described. Apparently very difficult to interpret and they are not sure whether pancreas or bile duct or both. that is as well as tumor in stomach. But treatment would be the same anyway so we carry on and have another scan later!
Not felt too bad this week, just the usual tiredness - I think you are amazing coping with a trip to London - I find London exhausting, even when fit - that seems a long time ago!
Hope the rest of you are all coping well
Love Sarcath
I’m joining this thread rather late in the day, but I’d just like to report my experience of taxol so far. I was experiencing spreading lumps in the chest area, tender abdomen (mostly just under the ribs, so probably liver mets) and rocketing tumor markers. My onc agreed that it was about time to do something and put me on 6 weekly taxol, followed by 2 weeks off, and then another 6 weeks on. We chose the weekly doses to reduce the impact of side effects and increase the chance of my keeping my hair. I have had 3 weeks so far and the tumor markers have slowed their rate of increase, the abdominal tenderness has pretty much gone, and my chest lumps have reduced so much that my onc beamed at me and said that I had ‘made his day’ and ‘done it again’ when I saw him today. I’m going to be reducing my steroids by half to try to improve my sleep, there’s a little constipation, the usual tiredness, and the occasional headache (if they get worse I’ll have a head MRI because I’ve had brain mets) but so far the side effects have been better than I had expected. But then I’ve thought that in the past and been caught out.
So I hope that everyone on this thread who is having such a hard time will continue to cope and even improve, but I wanted to let anyone out there who is about to start taxol that they may not have too bad a time on it and, so far for me, it seems to be working.
Love to you all, Lynn
Hi ladies,
Hope everyone is coping ok with se’s and responding well to this chemo
I hope you dont mind me asking a quick question about weekly tax, as it being discussed as my next line of treatment following a severe allergic reaction to carboplatin (no 8!) today…
There are a few potential treatment options for me, including xeloda, eribulin (onc contacting special cancer fund to see if I meet criteria); and a triple neg trial of weekly tax, avastin and/or metmab (again, onc checking strict clinical criteria). I am meeting with her next week to discuss the outcome of her investigations.
Eribulin is top of my list at the mo as there has been some good results with tnbc, but as ever, a bit hit and miss. Weekly tax (if I meet the criteria for the trial) is a bit scary especially given I didnt respond well to taxotere and developed skin mets within weeks of my last infusion. I know the 2 taxanes work in different ways but my onc has admitted this is less likely to work given my poor response to taxotere. Its a big gamble in terms of quality of life, going onto weekly chemo especially with a low chance of success. I have a 2.5yr old and always saw weekly chemo as a bit of a last resort as I dont want to spend the rest of my days really poorly due to constant chemo+ se’s, especially as I’m fairly well at the mo. I felt awful on taxotere and obviously hair loss is inevitble (although I’d rather be bald and alive, naturally!!). I should have mentioned earlier, Im triple neg and have mets to chest wall, nodes at clavicle, neck and chest; small nodule on lung and 2 small lesions on liver (early organ involvement only identified on last scan at end of oct and triggered more chemo after a 6m break from carbo).
If anyone can share their experiences on weekly tax, in terms of their response after previous treatment with taxotere, I would be really greatful Im very confused (and stressed!).com
Best wishes to all on this chemo- hope its kind to you but super-tough on the BC!!
TIA
Tina xxx
Hi Gingerbud
So sorry you have such a tricky decision to make. For what it is worth I can share my experience of taxotere compared with taxol but we are all individuals with possibly different reactions.
I had taxotere after 3 x fec after mastectomy 4 years ago. I did find the taxotere very hard going with really nasty side effects. So when diagnosed with a secondary tumor in stomach and offered 18 weekly taxol I was a bit nervous but I can honestly say that after 10 weeks it is nothing like as bad as the other - similar but milder but I do feel very tired most of the time. My nails just feel sore this time but with taxotere they mostly fell off! Probably best to be guided by onc’s advice. A few ladies on here seem to have had a good response to taxol.
Hope you can come to a decision soon.
Love Sarcath
Hello Ladies,
Haven’t been on here for a little while - doesn’t seem to be enough hours in the day at this time of year & my last 2 Taxols have really knocked me off my feet! BUT, had the LAST one on Tuesday, so hoping to feel better in next few days & then Christmas to look forward to. Starting back on monthly zoladex injections next week & AI Exemestane, so fingers crossed they keep everything stable for as long as possible.
Sarcath - how are you doing today? How many have you had now, 9 or 10? I do hope you are feeling ok & SE’s are minimal for you.
Lynne - thank you for ‘popping in’ & sharing your experiences. It always helps to hear how other people cope & feel on these regimes & also to share positive & encouraging news.
Tina - what a lot for you to deal with at the moment! It’s bad enough having a fright with the allergic reaction but then to be given all those treatments to consider too & try & make the right decision, difficult! Mind you, at least you still have options & I always feel reassured by that. I have just finished 12 Taxols, done as 3 weeks on & one week off. Should have been 18, but after a PET scan mid-November, it was decided to stop at 12 as I’d had such a good response. The remaining cycles can now be used at a later date, if needed. On the whole I would say weekly chemo is hard but doable. Main problem is tiredness, which deffo gets worse the further you get through the cycles. I had my chemo on a Tues, Weds weren’t too bad, then tired til Sat morning. Also, I suffer with yukky taste in my mouth, which again goes away by Sat & some numbness in fingers & toes, but that’s improved a lot since dose was lowered a bit a few weeks ago. Also, Sarcath & I get quite bad headaches for about 2 days after & terrible chemo foggy head, which for me lasts til Fri. Gosh, that seems a lot doesn’t it!!! One positive about weekly chemo is that your bloods don’t take quite the same battering, so it’s unlikely you’ll get a delay due to low counts. Mind were fine all the way through.
Good luck with your decision Tina - and let us know what you decide, or if we can be of further help.
Take care all,
Dugsy x
Hi
It’s been a while - this thread seems to be petering out. I expect, like me, you don’t have much to add!
Hi Dugsy
Had no 11 on Monday and feel pretty flattened by it - it does seem to get worse with each one. And that head which hadn’t been too bad is back with a vengeance. Nothing planned for today but co;apse and watch a couple of DVDs - if I can stay awake. Hope you are feeling better now you have finished the taxol anyway. Something tells me we’ll be going for the full 18 so a long wway to go yet.
If I don’t look in again before Christmas I do wish you all a Happy Christmas.
Love Sarcath
Hi Sarcath,
Yes, like you, don’t seem to come on here as much at moment - just too busy!
Sorry to hear you aren’t feeling great & the horrid headaches are back!! DVDS & the sofa sound perfect to me, especially with this terrible weather!! I too found that the more I had the more I struggled each week, particularly with numbers 11 & 12. The tiredness was awful - just couldn’t be bothered! Hope you start to feel better shortly.
I’ve just been up to the hospital this week for my 4 weekly Zometa, which is my bone strengthener. And start back on zoladex injections & Exemestane tablets on Friday. Fingers crossed that keeps everything stable again.
My son is away on his first school ski trip at the moment, so the house is quite quiet with just one child!!! Miss him lots but from his very brief texts he seems to be having a ball!! It will be lovely to have him back home on Saturday
Managed to get decs & tree up at the weekend - just presents to wrap & rest of cards to write. I’ll deffo need a holiday soon!!!
Have a happy, restful & peaceful Christmas all of you & hope 2012 brings us all better things,
Dugsy xx
Hello everyone, ah blimey, I have just been soooo utterly and completely wiped out over the past few weeks its been unreal. Finished the weekly chemo about 5 weeks ago and since then have been hardly able to drag myself off the sofa, appetite has gone (VERY unlike me - I love my food!!), oral thrush that will not budge, had loads of aches and pains and really felt very sorry for myself, I am very lucky and usually sail along without much to moan about but I have to say, phewf - this has been something else!! Anyway, my community macmillan nurse has put me on a dose of steroids and after 3 this morning I feel like I have come back to life already. Hoping they will ensure I will be able to eat my Christmas Dinner and enjoy the festive season. Have read everyone’s updates with interest. Dugsy - me and you are on the same, I get my 4 weekly zometa and get the zoladex at the same time and have just started exemastane. lets hope that little cocktail works eh??
Right girlies, going to sign off now, probably for the last time this year, wishing you a Happy Christmas and a 2012 filled with great scan results and good health!! Love to all xxxxx
Hi Wannee - you are frightening me! Ive just had Taxol 11 and feel pretty low so am wondering how much worse it will get. Did you have the full 18? You really do sound in a bad way but presumably the only way is up now with regard to SEs? I was hoping for a bit of quality time after taxol before what ever comes next! Ah well! Let’s just hope we can enjoy Christmas to a greater or lesser degree. Hope the steroids do it for you.
Love Sarcath
Hi Sarcath, ooh gawd I’m sorry - it might not have anything to do with the chemo you know, it’s just me assuming it is! I had 16 weekly doses and was really well throughtout the whole lot, and has taken a couple of weeks following the end of it all for me to start feeling like this. Could be the thrush thats doing it, I dunno, anyway, after day 2 of steroids I feel much better so roll on!! Anyway, remember we are all different and have differet reactions to everything, so don’t start thinking this is going to happen to you! have a snowball and put your feet up!! Much love, Joanne xxx
Hello ladies, sorry i havn’t posted for a while but since finishing chemo a few weeks ago i’ve just been knackered!
was just catching up with all your posts, and wanted to wish you all well and hope you all have a good xmas.
Dugsy you must be relieved to be finished chemo! hhope the zoladex and Ai’s work well for you.
Sarcath at half way through it seems a long way to go but it’ll be done before you know it, i hope you mange the rest without to many se’s.
Hi lynn, you seem to be doing ok so far and seems to be working well for you, hope this continues.
Hi Gingerbud, a difficult decision for you, everyone is different but i found paclitaxil much easier than taxotere, felt tired and a bit dizzy for a couple of days but managable, could still get out and about and do things, with tax i was floored for about 4 or 5 days every time.
wanee i’ve been feeling a bit sickly since i finished too, and sometimes i think it is a bit of anxiety about not being on a treatment that i know was working, i’m only on herceptin now and worry that won’t be enough to hold it stable, got scan in january so we’ll see.
Keep well everybody and good luck and best wishes to you all.
Pumpkin x
Hello ladies,
Hope you all managed to have a good Christmas & that you are all doing as well as can be expected!
I’m hoping that one of you see’s my post as I’m looking for some reassurance - Wannee & Pumpkin, I remember you both saying that since finishing chemo you both felt wiped out, sickly etc & I have been feeling the same since finishing 4 weeks ago. I have to say it’s worrying me a bit, as like you Wanne, I normally feel ok most of the time, but this just feels different. I’m tired, can’t be bothered most of the time & have lost my appetite - again, like you Wannee this is most unlike me!!! However, if I logically think about it all, I only finished 12 lots of Taxol on Dec 7th, then went straight into the Christmas madness with 2 kids, then my back gave up on me after a 5 hour car journey back from my sister’s on the 28th - had to call the Dr out on NYE as could hardly walk!!! She prescribed Oramorph (which I’ve never taken before) but which really did the trick & only had to take for 2 days in the end. So I suppose if I take all this into consideration, it’s hardly surprising I feel shattered - haven’t rested since finishing chemo & guess my body is saying ‘Enough!!!’. On top of all this, I have read on the leaflet with my Exemestane tablets that a common side effect is loss of appetite, so hopefully that will improve as I get used to the tablets.
Sorry to ramble on, but just wanted to ask your opinions, as feeling a bit down at the moment - damn New Year doesn’t help either with everyone going on about things to look forward to etc etc!!!
Sarcath - how are you doing? Did you have to have chemo over Xmas? Hope you are ok & managed to enjoy Xmas
Take care all & wishing you only good news & stability in the future.
Love & hugs,
Dugsy xxxxxx
Hi everyone
I was just looking to see if anyone had posted - we’ve all been too busy over Christmas and New Year. Hope you managed to enjoy it.
I’ve more or less kept my chemo going - back to Monday next week which will only be 5 days since this week which I had today. Now had 14.
I really think it is important not to overdo things - I can definitely tell the difference if I push myself to do more, walk further, stay up later, even talk too long on Skype etc. I recognise all the symptoms you mention Dugsy and with 2 kids it must be such hard work for you. I’ve admired you before for all you manage to do.
I was hoping for some quality time when I finish - perhaps a little holiday or visit family. Take up some old interests. From what all you girls are saying it doesn’t look very promising!
Can’t add more but to wish you all a Happy New Year. And Dugsy do take some time to rest - are the kids back at school?
Love to all fellow sufferers
Sarcath
Hi Sarcath,
Lovely to hear from you. I hope you had an enjoyable Christmas with your family.
You may admire me for what I do on a day to day basis, but I take my hat off to you for doing 14 Taxol’s so far! Weekly chemo is so demanding & each one gets that bit harder - I especially found my last two very hard going & was glad to stop at the end. So well done you! How are you finding the SE’s now? I hope you get plenty of opportunity to rest & have lots of people on hand to help out.
When do you have your next scan? I’m due my next one in 3 weeks Not looking forward to it, especially as I’ve been feeling so grotty recently. However, now both kids are back at school & we’re into a routine again I feel a bit better today & making sure I get as much rest as possible each day. Had my lovely reflexology session with MacMillan yesterday which helped relax me & put me in a better frame of mind
Take care Sarcath & good luck with your remaining Taxol’s.
Dugsy x
Hi Dugsy
Pleased to hear you can take things a bit easy now. I am fortunate in a way that it is just the two of us so I can be as lazy as I want within reason - and I need to be. You ask about SEs - well all the usual and one or two things have got worse - nausea is a pain but at least the tablets work quite well. And the painful feet and legs - and fingers - half of the nails are are clearly coming off. That happened when I had docetaxel some years back too. Very unpleasant!
We only had two visitors staying over Christmas so no big deal. Everyone else is too far away!
Reflexology sounds good - I have never tried any of that stuff, only healing which I loved then ( five years ago ) but just doesn’t do it any more!
No scan has been mentioned so I shall be asking next week - they seem very vague here!
Carry on getting plenty of rest - it is about all we can do to help ourselves recover. I hope you soon feel much better. Good luck with your scan.
Sarcath
Hi Dugsy, i havn’t been on over xmas and new year so just saw your post. Sorry to hear you were feeling a bit rubbish and had bother with your back but glad to hear you got something to help with that, and felt better after your reflexology session. I think when we finish chemo we expect to be bouncing back to normal and forget the hellish trauma chemo puts our bodied through, i would imagine that will take a while to completely get over. Somedays i feel ok and others i feel rotten and knackered. I’ve also been experiencing episodes where my heart races for about twenty minutes and i feel dizzy and sick, could be side effects from herceptin and zometa, herceptin can cause heart damage so getting heart echo scan on monday, but could be anxiety attacks which both treatments can cause, anyway whatever it is it’s horrible and frightening. hope it’s not the heart cos they would stop herceptin and that would not be good, so i guess i would prefer anxiety attacks as bad as they are i could at least maybe get something to help with that. ive also started getting really sore joints and muscle aches, chemo nurse said sometimes that happens when chemo finishes, have you had this?.
I’m gettin CT on 24th. I think yours is around the same time? the scanxiety is altready building!
Hi Sarcath, was catching up with your post too, looks like the finishing post must be in sight about now, bet you counting down the weeks? sounds like it’s been quite a struggle for you all the way! let us know what they say when you ask about scan. Hope the rest of your treatment goes well.
Beat wishes to all for the new year!
Pumpkin x