Starting taxotere any advice and tips please?

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Can anyone help with some advice please?
My wife has been doing so well after her hip replacement in April and now is very mobile and feeling generally well. Trouble is routene CT scan had been put off because of this and other things, been over 6 months since last scan. Scan was eventually done 5 weeks ago. We were told no news was good news so have not chased up till now. With our eye of the ball the small spot in the liver has turned into extensive involvement causing swelling, tiredness, loss of weight and sickness. Lung shows slight progression but not as bad, bones and spine little change. GP was worried about this and called hospital, all of a sudden someone found time to read scan report and diagnose serious liver progression. She has had a PIC line put in today and starts taxotere on low dose weekly for a few weeks before going on to 3 weekly apparently. Thought all mets would progress at the same speed if they decide to, why has liver gone mad?

We have high hopes for taxotere but the side effects look bad any advice would be apreciated. When do you think she will notice an improvement?

Many thanks and regards to all here
Dave

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Hi Dave,

I started taxotere last week after sailing through 4 x EC and found it a bit more difficult. Needed a lot more rest! I’m told that drinking water before/during/after can help. Had some muscle pain (nothing serious) and Ibuprofen did the trick. The breast care nurse should be able to advise, also the helpline on here is pretty good.

Good luck to you both

L.

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hi there…
i had taxotere after first FAC (6cycles) and xeloda (6 cycles)…my regimen is a bit different as I’m living in Malaysia…among all the three i think taxotere is the toughest…i had weakness, muscle pain and numbness of hands …i also developed some swelling…i think drinking a lot of water does help and paracetamol did help for my pains…i hope everything will go well…right now i’m on venoralbine…as 6 cycles of taxotere didn’t do the trick…

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Hi Dave

As Lanterna suggests you could give the helpline a ring and have a chat with the breast care nurses here, they’ll be only too willing to talk to you and help if at all possible. The calls are free 0808 800 6000, open Monday to Friday 9am - 5pm and Saturday 9am - 2pm.

Kind regards,
Jo, Facilitator

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Hi Dave

I have had 6 taxotere to date and another 3 to go (that is if everything is still shrinking and looking like it is still working - I see the onc this afternoon).

I have 2 girls aged 9 and 6 and work more or less full time. I get my treatment on a Wednesday and am hyper on the Thursday and Friday and don’t really come down until Friday afternoon. Then I am absolutely exhausted for 2 or 3 days. i can normally return to my work on the Tuesday and just play it by ear - if I am exhausted my work are really good with me and wouldn’t mind if i went home. The rest of the time I pretty much work full time - obviously I am fortunate that once i am at my desk I don’t have to move very much so I don’t have to move my legs all day.

It is exhausting, my legs feel like I’m 90 if I do too much, all and my finger and toe nails are sore - in fact one of my nails is now off completely.

One thing I would say is that my oncologist and chemo nurse have always told me not to take any painkillers that would effect your temperature being kept down as it could mask an infection. I would suggest you go to your doctor in advance and get a painkiller that does not effect your temperature, then if she does feel flu like which is common she can take this without it bringing her temperature down. They are just a bit concerned that you could develop and infection that could go undetected because the painkillers are bringing her temperature down.

You can’t buy painkillers that won’t effect your temp. over the counter they have to be prescribed by your doctor.

Hope this helps

Best of Luck, I will be thinking out you and your wife

Diane

xx

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Hi Dave

I had 3 x FEC and 3 x Taxotere last Aug through to November. The FEC I found a complete breeze to be honest, but the tax knocked me for six. I think I thought that cos did so well on FEC, I carried on as normal, day after tax, kiddie clubs etc (have 18mth old and 4 year old), so always out and about.

I was a lot more tired and less energy to be honest, mouth was gross, apparently oral thrush, but did get diflam and nystan to help this. Nails went all rippled but never fell off like some ladies. But unfortunately I did get a cough/cold after 2nd treatment which I didn’t monitor properly so ended up in hospital for a week as neutropenic levels fell to 0.08. So if your wife gets the slightest cold/cough or generally feels unwell, take her temp and ring the chemo ward if in doubt. You can beat it by catching early and getting oral antibiotics.

Saying that, there are lots of women on here who do find Tax ok and tolerate it much better than I did. So your wife may well be ok on it.

I wish you both well and hope she does OK

Love
Dawn
xx

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Hello Dave,

I am having Number 6 Taxotere tomorrow. I was like you and had read a lot about this chemo and was dreading it. I had a list of things (someone posted a list on here and I copied it and took it with me when I saw my oncologist and made sure I had everything I needed in the house before I started. His comment was that it was highly unlikely that I would get EVERY side effect (hee hee didn’t think about that). I now have 3 packets of Immodium that remain untouched as I was constipated all the time. My main problems have been weight gain (stone and a half in 6/8 weeks - quite a bit of water retention - which is listed as a side effect) and oral thrush. I tried most things and ended up with Fluconazole (200mg - highest dose I think) and a tongue toothpast that I got from Waitrose called TUNG to help with that horrible taste you get and to clean my tongue. Best mouthcare I have had whilst on chemo. And feet - tingling/numbness in toes and the ball of my foot. Made sure I used cream on my feet every morning and night - Flexitol very good from Boots and painted my nails dark like most people have said. The hardest thing is that every cycle has been different so it is difficult to keep up. Have Chemo Wed - I am ok Thursday/Friday and then it hits and I am wiped out for 3/4 days then things slowly begin to pick up. I try and get lots of sleep on my bad days (and my good days) bones ache quite a lot - bit like bad flu symptoms for a few days as well.

This is my experience and from what I have read everyone seems to be different…but it has worked for me and the tumours in my Liver have reduced quite a lot (but not gone). Hopefully they will be small enough to have RFA again when things have been stable for a while…fingers crossed.

Hope it goes well for you both - Oh I also had Lifemel honey which was shown on This Morning and Dr Chris…the only thing I have actually tried as I was worried about my blood counts with this chemo - it costs £45 for a small pot and I have only been having one teaspoon not 2 as rec but have not had any problems with my blood and am scared to stop taking it now just in case !!!

Love Jetty

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I’ve completed 4 cycles of taxotere and herceptin combined, so can’t be too sure which drug is causing which effect, but agree with the other girls that tiredness is a problem- complete exhaustion for several days. I also seem to be experiencing pain in the site of the tumours (which we’re hoping is a good sign), and my onc has given me codeine for this, which I’ve only taken a few times. I’m also given prophylactic antibiotics for mouth infections, which again, have been succesful. I find my sense of taste is non existant though-steroids have me eating like the proverbial horse, so no problem with my appetite!
Agree 100% with jetty-each of my 4 cycles has been different. The last one, for example, had me feeling much more nauseous than the previous three.
Good luck to your wife-hope all goes well for her.

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Well today I had 5/6 taxotere. I have found the side effects many and varied. My worst has been constipation (so am armed this time with a softener and a mover - as well as more natural methods juices, linseed etc). My feet and hands have been dry and sensitve (but not pins and needles) have simply smothered them in body lotions every night (good way to use up those birthday gifts that tend to sit around - my side effects haven’t warranted spending money on special creams). Oh my nails are stripy but haven’t lifted - though I cut them v short before this started.

And I echo the comments about oral health - use a soft tooth brush - I lose my taste for about a week. Use some form of mouthwash to avoid thrush and ulcers.

Fatigue is definately cumulative - if I do too much I get wiped out! I buzz on the steroids which have been reduced to try and avoid the constipation! I have treatment on Tuesday - and I now know to forget about planning anything for the Friday - Monday following!

What else - have kept my hair using the cold cap!

Geraldine

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Hi

Can’t add much to whats been here, but really I found taxotere reasonably manageable . I had alot of bone aches and pains which were probably made worse by the GSF injections. At a few points it was actually extremely painful but it did pass… My onc was sure it was that, but i think it was from the bones healing - taxotere worked really well for me, The cumulative fatigue was hard but all in all taxotere was more manageable than FEC for me,

Also kept my hair!

Catherine

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Wow what a response, thank you so much all of you for your comments. We were both not looking forward, and looking forward to today if you get my meaning, mixed emotions. This said it was not as bad as we thought. For some strange reason the treatment room was very quiet, all day, us up one end and someone else at the other, it’s normally throbbing, sun was shining and with a good seat by the window a gentle breeze blew in, lovely and quiet too, very relaxing and quite strange. No wait, everyone on time, nurses great everybody smiling today, really very strange.
Sue had both her normal biophosphate infusion today and the tax, normal 4 weekly biophosphate aborted on friday due to veins, as soon as nurses got wind of Sue having pic line put in yesterday they decided to do all at once today, wonder why!. Was scheduled to take nearly all day but Sue just could not get on with the cold cap, too much pressure on forehead causing pain - this was swiftly abandoned. The only reason she wanted to do it is that our 2 year old daughter has got a real thing about hair, its a comforter, if she is lying in bed with us she gets both hands and both feet in it all at once, both Sue and I are fair game, likes the feel of it between her toes, I don’t know where she gets this from, been like this since a baby, she also gets her finger stuck in her own from hair twirling and needs cutting out on occasions.

Hospital provided drugs pack which inculded mouthwash, steroids, anti-sickness etc. She crashed out this afternoon and has been asleep for ages. Fortunately I was made redundant 2 months ago and have been holding the fort so to speak, with much more hard graft ahead I am sure, yes I have learnt all sorts of additional domestic skills and do pretty much the lot and boy its hard, I really take my hat off to all mums especially if working too, how the hell do you do it? Whats the secret Diane1w?

I wish I could reply to all individually but some really usefull things to watch out for here, the masking of possible temp rise by taking pain killers very usefull to know, drinking water and nails + tingelling o.k. Infection yes they did stress this, a bit of a worry this one with kids they pick up some nasty things, fortunately its not Sue that gets given them, its always me. Thanks jetty for mouthwash tip and soft brush. Eating like a horse this is good Sue needs to gain weight. Foot massages, hmm Sue can’t bend that far yet, down to me, I think she is going to enjoy that bit!

Got our minds focused on the mini cruise we had booked as a last min. deal 3 days before we were told news about liver progression, Iceland and Norway, 5 weeks to go, the look of horror on the ONC’s face said it all really so looks like it may be off but I am not telling Sue yet.

Jo thanks, I may call when things quieten down a bit, any ideas why I can’t use spell checker, is it not working? I am constantly embarrasing my self here, (typical engineer) sorry.

Sorry for long reply, it just helps me in a funny way. Thank you all for taking your valuable time to respond and your kind wishes I will be printing this off to show Sue. Our very best wishes to you all also.
take care

DaveF

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Great to hear that Sue has started and that it all went well-it’s such a comfort once we’re actually doing something to target the illness. I hope you are able to have your holiday-but it may be that ypu’ll actually want to postpone it? I don’t know if our reaction is “normal”, but we decided to postpone our holiday this year-I think because we’re feeling quite vulnerable and would prefer to be at home where we feel “safe”. Incidentally, my onc was alps horrified when we mentioned holidays! But,it may be just what you need, so hope you’re able to go ahead with it, if you want to do so.

Constipation, as Gerry said, can also be problem-and I find the following really useful. It’s only available mail order, but the service is excellent, and free p+p too!

Smiled to hear of your daughter and hair…quite took me back 20 years to our daughter who also loved to play with our hair-especially when we were reading to her!

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Just wanted to add - once you have progression I think a kind of snowball effect can occur. Each cell can duplicate and then all those can duplicate and so on. So in some cases it can be rapid.

I hope your wife doesn’t suffer many side effects - as others have said - there are some who find it quite OK.

Jenny

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Sorry Lucy-in fact, I think I’ve posted that link several times! It’s been an absolute godsend for me, so was keen to share the info…

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ElaineD
Thanks for that but the link is missing, guess you got told off! can you give me the link via private message or somthing?
Yes the Cruise is touch and go, trouble is we just jumped in to spoil ourselves after Sue was getting so much better from hip replacement and the horrible Christmas is well nd truely over, (rads to spine and head). Because its short notice it was reduced and we had to pay all up front, a few days later Sue was diagnosed with extensive liver mets, we have no insurance so will lose the money if we decide we can’t go. This is imaterial of course Sue comes first and we will leave it up to the doctors advice. Infection is the big problem I believe, Sue also worried who will flush out PIC line. Sue is really looking forward to it and I do not want to take this dream away at the moment. This said after only a few days Sue looks and feels better, severe temp changes stopped, hicups stopped, she is eating a little more and less nausious - I know its early days but I like to think the signs are good! I know she responded realy well to chemo on primary which was 10 years ago, reduced tumour by 90%. She is being measured up for her wig next Friday which is mostly being paid for by McMillan I believe - (thank you McMillan). We are both very curious what our hair fanatic 2 year old is going to make of it!
Dave

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Hi Dave
'Scuse me for butting in but I read that you were made redundant, have you investigated getting a carers allowance? I presume you wife gets DLA. Not sure if you are eligible (ask your friendly Mac Nurse or contact the local Hospice - they will help you process the forms and tell you what to say) It isn’t a lot but it might sweeten the pill of losing your holiday money. On the holiday - they may be open to giving you another date or giving you a holiday at half price or something, anything!

On the Taxotere front - I had Taxotere and Herceptin (now just on Herceptin) and the combination got rid of all my liver tumours, and that was December 03.

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An update and great news!!!

Thanks for that Blondie, yes I am still trying to decide what to do work wise, I am fortunate to have had pay in lieu of notice and redundancy money. have thought about carers allowance but if I claim on my mortgage protection insurance it states that I have to be signing on, so may go this route first.

On to more important things, when Sue and I saw ONC just before her treatment started things looked pretty bad, I can read it in the ONC’s face (she’s from scandanavia, a realy nice person), Sue would not have been able to cope with full dose so she is having weekly infusions of Taxotere with careful monotoring. she has had her third last Tuesday. What amazing stuff, a few days after the first one Sue showed a marked improvement and has forged ahead. Amongst many things they are looking for in the blood results is a particular chemical … sulphate? Normal is 300, Sue was at 1350, first treatment bought it down to 900, then 600 this gets the ONC excited for some reason and she (the onc) was very relaxed and quite happy in the last meeting on Monday. She is saying its early days but is now indicating that she would be happy for Sue to go on the cruise, she is going to organise another 2 pints of blood, (her red count took a hammering after first treatment), just before we leave + she suggests a chemo break for the duration with the intention of starting monthly treatments on our return. This is all subject to how Sue feels before we are intending to leave.
We did call the holiday company and no refund possible, we paid in full last min. not transferable etc. This is all imaterial, we will only go if onc assures us it will be o.k.

Sue has tollerated treatment very well, she is not as tired as we expected but 3 days after treatment really hits her, her feet and calfs swell for a couple of days, taste is a little altered, hair thinning very slightly, no nail problems or other effects - yet. After the 3 days she is full of energy again, its been 12 weeks since hip replacement and she is almost back to normal, remarkable. She is also eating more and not feeling or being sick. My little’n and I are so glad to see mummy happy and feeling so much better - god bless Taxotere!

Dave F

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Hi Dave F…I’m not sure if Sue had a hip replacement due to bone mets? but just wanted to let you know I too had a replacement due to bone mets and fracture in 2003 (which was when I received my bc diagnosis) and my new hip’s still doing well…feels like normal…I hope Sue’s treatment continues well, sounds a great response to Taxotere and you all enjoy the cruise. Belinda.

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Dave - really pleased at the good news on Taxotere for Sue (and you and your little one). I have had 5 tax now and I realised how ill I had got - as I now feel normal (well relatively normal). My hubby has said similar things to me as you’re saying about Sue.

Take Care - hope it carries on well.

Geraldine

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Hi Dave,

Just to say hi and I hope the taxotere is working well for Sue, I would look into the mortgage protection as this may be beneficial for you both.

I finished Taxotere last November after 8 doses - three weekly ones and it may be that the weekly ones won’t hit Sue as badly.

I managed to get through it by

Changing to a very soft toothbrush and sensitive toothpaste - gel variety is best

During chemo - drink lots it helps get it round your system especially when on steroids

If she goes three weekly

Post chemo days - 1-7
Eat small amounts, have stuff to deal with heartburn - boy did I get this!
I avoided bready type food - pizza sandwiches etc because they tasted foul.
Eat fresh pineapple/pineapple juice helps soothe mouth
Drink lots of water
I added dried apricots to aid digestion

Post chemo days 7-14 (bad week)
I got several different things from the hospital to stop infection

Anti fungal tablets
Anti biotics (they gave me them as I ended up in hospital and it was easier to prevent infections before they started)
I got a prescription for Gelclair - kinda like liquid bonjela - helps with mouth ulcers
Drink lots of water!

Also you could try getting your daughter a stuffed toy to compensate for hair playing - I made my OH keep his so I could play with it as I didn’t have any.

Hope all goes well and you get to go on your cruise.

Best Wishes
Kate