Weekly Taxol for Stage 4
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hi smiley47. Sorry I can't answer your question. I don't get a week off for a start and I never ask about my blood work as I think we can get too wound up with results. Also tumour markers don't work for me so I have to wait for 3 monthly scans for any news.
Did they offer any suggestions as to why they may have changed. I believe they like to see a trend before they make any calls. Do you have scans due soon?
I'm no help am I. The constant worry with stage 4 is too much some times I know. (((Hugs)))
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Has anyone heard about Kadcyla? Apparently it costs 90 thousands pounds per patient and has been turned down by the NHS - (I live in the UK, London to be precise) My oncologist it seems is trying to put me on a 50/50 trial for it. While it is exiting, what if I am the one who just gets a placebo. Anyway it is interesting I thought..
http://www.theguardian.com/society/2014/apr/23/breast-cancer-drug-turned-down-nhs-use-high-cost
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tigre55, Yes, see Trish03 on discussion board:" How are people with liver mets doing." She's been on it and doing well. My understanding is it's a form of herceptin and often used on Her+ patients.
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Thanks for the advice and concern Shazzkelly. I have not spoken to a doctor yet and just hope it is the liver adjusting to the chemo and not the chemo no longer being effective.0 -
SyrMom thanks for that. I am HER- so I guess I was just hoping for something... Ah well this is the stage-four-state-of-being, constantly in hope that something wonderful will come along and save me.
just finished 6th taxol on friday, 12 more to go!
happy sunday everyone.
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I am doing weekly taxol. I have done 3 and have another 3 to go before they scan again to see if it's working. If the taxol is working I will be doing a minimum of 18 altogether.
I have a question about side effects. Does everyone get peripheral neuropathy? Does it appear straight away or does it come on gradually? I had some tingling in my left hand which is related to the met in my C7 vertebrae before I started taxol. I think it may be getting worse. The oncology nurse told me it can't be peripheral neuropathy as both my hands would be affected. My only other side effects so far are fatigue and an over-active bowel.
Anyone else get PN in one hand and not the other??
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hi spring watch. I just had taxol 33 yesterday. It's 4am and the dex is keeping me up. I have had no neuropathy at all but would think that if you are only getting the tingling on one hand already effected its probably not neuropathy. Everyone reacts differently and it can strike at different times. I would have thought after 7 months with no signs of it I'm not going to get it but my Onc still thinks it could come on after all this time.
So far I've had a great response to chemo and hope you do to.
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Thanks Shazza Kelly. I had rads to my C7 about 2 weeks ago and now I'm wondering if it is some sort of response to the treatment. I will ask my onc when I see him day after tomorrow. BTW, I am truly impresses with the number of taxol treatments you have had. But as you said you are getting a great response so it is worth hanging in there. There is a possibility if taxol works really well for me that I will go beyond the 18 cycles.
I hate having to deal with the wired feeling you get from dex. I keep thinking I should get out of bed and do the ironing or something useful but instead I usually slide into the armchair with a book until my eyes start to (hopefully) close.
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In New Zealand they never go beyond 18 as a rule I'm the first my Onc has taken further. It seems more common in other countries where they seem to have a week off between cycles to give you a bit of a break. I have just been having continuos treatments and while I still get fatigued I'm able to work so will just keep going this way. I think though I have been luckier than most with how I am coping with it. I keep my fingers crossed that it will work for me for a long time to come.
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I meant to say most of the side effects I get are from the dex. I seem to be getting more sensitive to it as time goes on. Even with a sleeping pill I don't sleep on the night I've had chemo and I've started getting a flushed face and torso after I get it that lasts a couple of days. Small things really in the scheme of things
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Hi ShazzaKelly,
My onc has specified 18 treatments and my impression is that this is pretty much standard. It was my chemo nurse that told me they sometimes go beyond the 18 cycles. It seems the school of thought on the standard 18 treatments maybe changing. There seems to be so many different chemo regimens out there, even for the same drug. I would love to know what thought processes or evidence the oncs have that makes them decide one pattern of treatment is better than another.
BTW, I went to NZ about 7 years ago and loved every minute. I tried to do both NI and SI in 3 weeks but felt I missed so much.
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yep for a little Country New Zealand has a lot to see.
There does seem to be so many different protocols out there for chemos. I was told when I originally started that in New Zealand we follow European protocols so don't get to caught up in what people American patients are doing on BCO as it's quite different. My Onc said there was no reason to stop Taxol while it was working and my SEs were minimal but he just didn't have any patients who got much further than 18 weeks without neuropathy getting too bad or the treatment failing. I'm going for a world record 
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Hi Springwatch, I'm in Ireland and I've had approx 33 rounds of taxol to date. Onc started me on a 6 wks on/2 wks off cycle in Jan '13 but due to SEs I now have it once every 3 wks. Scans show I'm more or less stable so onc wants 'to squeeze as much out of taxol as poss.', so I'll stay on it until SEs become intolerable or it becomes ineffective. I have peripheral neuropathy mainly in my right hand and my feet but I can still function. Fatigue is the worst SE. I have very little energy these days. However we are all different. I meet two other women who have been on taxol since 2012 and who have minimal SEs. My dosage is 150ml - is that what you guys are on?
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Aoibheann,
I am ashamed to say I have no idea what dosage I am on. I am having chemo tomorrow so will have a look at what it says on the IV and get back to you. 33 is quite a number! Do you experience your energy levels picking up before your next treatment or is it pretty much constant now? Sorry about the PN. Touch wood - I am still unaffected but that could change. Re: the two women you met who have been on taxol since 2012 - are they on the same treatment schedule as you?
ShazzaKelly,
I don't think NZ is such a little country! I think it is about the same size as the UK. But it certainly is a country of contrasts.
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Sorry forgot to ask. Have either of you had your mets biopsied?
I came back as TN from a bone biopsy but I am not convinced. I have been doing a bit of research and bone biopsies that require decalcification, as mine did, are falling out of favour for testing receptors as they are giving too many false negatives.
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Hi Springwatch, I haven't had my mets biopsied. My energy levels don't follow any particular pattern except that I crash about three days after chemo. I'm up and down after that though I'm more energetic in the mornings. I have to be careful not to overdo it as I get flattened v easily and then feel depressed. The other two women were on six wks on/two off for months and they are both now on two weekly regimen. One of them has liver mets and the other has 2 mets in her spine and both of their tumors have shrunk. I think the lady with liver mets is NED but I'm not certain (chemo brain). I have extensive mets all over my skeleton and there hasn't been any shrinkage but I am stable so far (fingers crossed).
Hugs
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I haven't had my mets biopsied either. I started with extensive lung and bone mets. I have had significant reduction in my lungs and my bones have remained stable. I always seem to crash 2 days after my chemo for about 2 days and then return to normal. I think that has more to do with the dex than the taxol though.
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Hi,
Had 4th taxol earlier today. I checked the dose and I am having 162. I can't remember if it was ml or mg.
I seem to crash 3 days later and then gradually improve so I feel much better by Wed, the day before my next chemo.
Shazza, when did you see a significant reduction in your lung mets? I am supposed to have another scan after my 6th tax. I have lung mets, too (and extensive bone mets in my pelvis, c7, and left femur).
Aoibheann, what scans are they using to determine if your bone mets are stable? Curious as mine were DX with an MRI but because bone will show the damage done by the mets long after the disease is NED, I am hoping onc will do a PET ct rather than another MRI, as it will show the activity in the bone mets.
I slept for an hour during the IV because of the anti-histamine. Sitting at home now with a glass of lemonade and a packet of poppyseed bread sticks. Dex gives me the munchies.
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Hi Springwatch,
I have a ct every 3 months and a bone scan every 6 months and the hospital radiologist sends his report to onc on whether mets are stable or progressive. I have ct and/or mri scans in between as deemed necessary by onc. I guess no worries about too much unnecessary radiation any more! I had scans 6 wks ago and I'm having an MRI when I go in for chemo next Tues as I'm having more bone pain and onc wants a different view of my spine. The hospital here doesn't have a PET machine so I've never had a pet scan. I believe they are better at showing up active mets.
Hope you enjoyed your snacks today! Take care
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Springwatch I had my first scan 12 weeks into treatment which showed a big improvement in my lungs. However the terrible cough that I had had for some time disappeared about my 3rd taxol so I think it started working pretty quickly. My next scan at 24 weeks showed stable. There has been a slight improvement in my bones and no new activity.
I got them to change the antihistamine in my premed so I could go to work after treatment as it made me to sleepy. I get super hungry and super productive thanks to the dex.
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Aoibheann, I hope the increased pain in your spine turns out to be something innocent. I know I worry about every little ache now in a way I never did before. I agree with your comment about them having no worries about giving us too much radiation any more. Just had another 4 x-rays this morning while they checked on how my fractured femur was healing. It is despite having rads to it after the fracture and the weekly taxol. They have two machines for PET CT scans at my treatment centre. It serves a very big population.
Shazza, My first scans are going to be after 6 treatments. I am hoping for shrinkage on the lung mets. I will have a think about changing the anti-histamines but I quite enjoy having the extra hour of sleep. My only problem is that when I wake up I still feel a bit dopey for the next hour or two.
Best news today - surgeon says I can start driving again very soon! Just have to give it another week of healing. Yeah!
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no taxol for me this week. I'm in hospital on IV antibiotics as I have an infection. I had terrible fevers over the weekend but feel fine today. So I'm finely getting a week off after 33 straight weeks. Business as usual next week.
Just wondered if anyone else has funky toenails from taxol. Mine are quite frightening looking. My Onc has prescribed anti fungals I was embarrassed even showing him.
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ShazzaKelly,
Sorry you are so unwell, but pleased you are feeling better today and I hope you will be back at home soon. Enjoy your break from taxol this week. You may not recognise yourself next week after 33 weeks straight.
I have been warned that nails can sometimes be a problem. I am just keeping my clean and cut very short to avoid getting any debris underneath them but I don't think that will help once they have been affected by a fungal infection.
I have heard some good things about a product called Evonail made by a French company. Supposedly keeps them in good condition and can be used under nail varnish. In France, they recommend to patients having chemo treatment. I think it is expensive but I think I may have another look at trying to get some.
Take care,
SW
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Shazza ... so sorry to hear you are in the hospital. Stay strong and hope you are home soon. I'm glad you are getting a chemo break, maybe you will get lucky and have 2 weeks off!! The prior chemos stay in your system a long time, so not to worry. As far as the nails go, I've heard the same thing, but not yet experienced it yet. I hear a lot about lifting and falling off nails, discolored, etc. I've been keeping mine trimmed and colored and use the ice during infusion. Who knows if it really makes a difference, but I'm hoping it does. They say to have nail color dark day of infusion because the light does something to them, so I have been trying. Hang in there and keep us posted!
Springwatch ... if you find that avonail, pls let us know where to get it. Thanks ...
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SyrMom,
You can get Evonail from Amazon in the US and from a Belgian company, Farmaline, if like me you live in the UK.
I don't know if it really works or if it would work for everyone. It's expensive. But apart from dark nail varnish/polish and cooling the fingers and toes, I haven't heard of anything else that might help.
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Shazza, I'm sorry to hear that you are in hospital. Hope you're feeling a bit better today and that you'll be home in no time. I am in awe of your 33 straight weeks on taxol ... It's brilliant that it's working so well for you and I don't think a couple of weeks off will cause any effect on your treatment.
My toenails are ok, a little dry and brittle but no fungal probs. One went black and fell off but has since regrown. I use Sally Hansen Miracle Cure on my nails to help with the drying affect of taxol, and dark nail varnish on top as I heard UV light also affects our taxol toxic nails.
Springwatch, please let us know how you get on with Evonail. It seems to be very effective
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Springwatch ... o.k., thanks for the info.
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I took the plunge and ordered the Evonail. It should be here by the weekend. I will let you know how I get on. My nails are very dry and brittle at the moment. No discolouration. My skin has been generally drier since I started taxol and I am slathering on cream after showering.
ShazzaKelly, two of the ingredients in this nail treatment are anti-fungals. I looked them up. Maybe it could help your nails after you have finished with the medication prescribed by your oncologist.
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ooh I may just try that. My finger nails are in good shape but I spend a fortune on them at the nail bar. My poor toe nails aren't so lucky.
I'm still in hospital. I have an infection in my reconstructed breast so they have me on regular IV antibiotics but the swelling won't go down. I'm waiting for an ultrasound appointment which will hopefully happen tomorrow. I'm going stir crazy.
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Shazzakelly so sorry to hear you are in hospital. Hope the antibiotics take care of the infection. It is so impressive how many treatments you have had. Sending healing thoughts your way.
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