Breast Cancer Now Forum

Hi everyone  Unfortunately Paclitaxel wasn't working for me. I had 11 weekly sessions but markers were still climbing.  I've now been put on Cape tablets. Anyone else had Cape? Fingers crossed this treatment works as I have not had much luck lately.  How is everyone getting on? Lou - good luck with your scan. X   Daisy ... View more

Hi Debs Yes I am very interested in the Guardant360 test. I spoke to the UK representative at Guardant last week and originally the test was around £2,500 but it has now been reduced to £1,290. I appreciate this is still expensive. Yes the representative said that there is a small chance that the report will detail treatments which are not yet available on the NHS but may be available on trials in the UK. But on the other hand it may show treatments that are on the NHS.  I personally think it's worth the gamble. The only thing is you cannot do the test whilst on Iv chemo, you have to be chemo free for 2 weeks. If you are on tablets like Cape you can do the test whilst on those. I'm thinking I will do it but need to work out when is the best time with treatment. I will keep you posted. Daisy  ... View more

Hi Louise  & everyone else The very best of luck with your scan. I had my 11th treatment yesterday, still feeling well and the hair loss seems to be the main side effect. I have noticed my hands seem a little dryer so just putting Extra cream on. My markers are due on Monday, I suspect if they have gone up again I may come off the paclitaxel. But we will see......... I am currently looking into the Guardant360 test which is done privately. Has anyone else heard of it? How is everyone else doing? Daisy X ... View more

Hi Alex Welcome to the group. Sorry to hear you have had a bad time. I really hope you do well on Paclitaxel. I've had 10 weekly sessions so far with no breaks and it is totally doable in my view.  I've lost my hair so wear a wig but everything else is pretty normal. I go about my days like I used to.  I do 24 hour water/ green tea fast around chemo day and I also take a daily vitamin of D3/K2. Chemo will knock your immune system and deplete your D3 leves so try to keep them up as this will keep off the infections. I have a phone appt with my oncologist next week as to whether I continue on this, my recent scan was stable but TM markers are still rising so really not sure what is going on. Good luck x ... View more

Hi Louise I am ER+, PR+ and HER2 -. Yes fingers crossed for us both. My hair started too fall out around the 3rd or 4th treatment. It wasnt too bad at first. I think I started wearing my wig on my 5th treatment. I still have quite a bit of hair but it's really thin. I opted for a wig as I have two girls aged 6 and 8 and I wanted to look normal ish for them. I wear my wig all the time so my girls have never seen me without hair. Yes I've met some lovely people too on the unit. I had bloods today so il find out my marker result on Monday. I will let you know. Daisy X ... View more

Hi Louise As far as I know yes it is the CA 153 marker.  My markers have given a good picture of what is going on all the way through since diagnosis.  Funny enough my markers are also increasing on paclitaxel by a similar amount to yours. I have weekly low dose but don't get a week off like you do.  I had scan results last week and they were stable, the report mentions that one liver lesion may have decreased in volume but he wasn't willing to commit as he was struggling to measure it accurately on the scan image. I'm holding onto that thought!!! My oncologist said as scan was stable we carry on with treatment. I said I was still concerned that markers are still increasing and he said he hopes they will start to drop soon and basically the scan dictates what we do. Mine went up by 28 two weeks ago and I have another blood test tomorrow. My oncologist originally said he expected it to take 6 sessions before we see results, I have had 7 weekly sessions so far, my 8th is Thursday. I would say the marker increases for us both are quite minimal,  when I had growth last year they went up by approx 150 3 months in a row. I've been told marker increases usually mean something whern they consistently rise. Like you I'm longing for a decrease too, on Ribo last year I got them down to 469. Now they are 1100!!  I'm going to see what my next couple of bloods say as my markers are checked every 2 weeks. Try not to stress too much about them I'm sure your oncologist will be watching them too. How are you with side effects etc? I've been OK so far pretty normal apart from hair loss. I do fasting around chemo day and I'm sure that's helping me.  Daisy X ... View more

Hi Louise As Deb said markers do not show anything for everyone. Mine seem to give an accurate picture of what is going on, they have always been quite high. My oncologist did say to expect a spike in the first few weeks of treatment as the dead cells shed into the blood. He seemed to think it should plateau or start to reduce after 5-6 weekly sessions.  I follow markers closely and always ask about them.  Usually a sharp sudden increase consistently over 2/3 months might indicate something is going on which is where a scan is needed.  I personally don't think an increase in 7 is anything to worry about. On Ribo my markers increased by 150 each month for 3 months then the scan showed growth. I've just had a scan to see how the low dose paclitaxel is doing, I've had 6 weekly sessions now. Results sometime this week do quite anxious. Hope this helps. Daisy  ... View more

Hi everyone How is everyone getting on so far? I have had my 5th session today.  I still feel fine with no side effects apart from hair loss which was expected so I am embracing a wig at the moment.  I am quite stressed at the moment as the nurse said today my CA153 marker is still high and creeping up.  It was 878 at the start of the treatment and is now 1131.She said if it does not stabilise or reduce at next weeks bloods then it looks like paclitaxel is not working 😞 She said it is very likely I will be moved onto the cape tablet.  They have also booked me a CT scan for next week so they can look at the markers and the scan.  I don't know why but i have a horrible feeling that this chemo is not working for me. I hope everyone continues to do well on it, I will update more next week when I find out my blood results. Daisy x ... View more

Hi everyone How is everyone doing? Jayne have you started Eribulin yet? I had my 4th paclitaxel today, feeling well although my hair has now started to fall out. I'm wearing a wig at the moment. Overall no side effects apart from hair loss. They took a baseline blood sample at the start for the cea 153 marker it was 870. I've just had today's result and it's now 1000. So I'm worried now.  Has anyone else had anything similar? Oncologist said I might see a spike but still it still causes worry!!!!   Daisy X ... View more

Hi there Yes I had my second treatment last Tuesday as my bloods had gone up to 2.6 phew!!! I am booked in for my 3rd treatment tomorrow afternoon, I need to ring them in the morning just go check bloods are OK this week. Fingers crossed. As for side effects I feel like I'm getting off lightly at the moment as feeling pretty much OK. I'm eating and sleeping well (I do fast before chemo and day of) but I eat well on the other days. My hair is definitely thinning and there is alot in the brush when I brush it but not falling out loads yet. I do have a couple of wigs on stand by. I did do a session of hyperbaric oxygen therapy last week as a friend recommended it, it's meant to help with any damage the chemo does to the body. I've felt good so I might carry it on. Have you been told how many you will have or is it just see how it goes? Glad your doing OK, enjoy your week off Daisy  X ... View more

Hi everyone Hope you are keeping well. I was booked in for my second paclitaxel today but it's delayed due to low white blood count. I'm gutted!! They have rescheduled for Tuesday next week. Mine were 1.1 but told they need to be around 1.5. I'm really stressed now as it's another 5 days with no treatment. How is everyone else doing? Daisy X ... View more

Hi everyone Glad yo hear everyone is doing well after treatment this week. I have felt good today, been drinking lots and lots of water to keep hydrated as nurse said that helps. I'm on weekly paclitaxel but I have noticed some of you are weekly on for 3 weeks then off for one week.  Is this the norm? Should I expect a week off on the 4th week?? No one has mentioned it.   I have someone coming on Monday to try some wigs on. Fingers crossed I find something!! I had the steroid but it didn't seem to affect my sleep. I slept well, mind you we are all different.  Enjoy the weekend everyone, good luck for next weeks treatment.  Daisy x   ... View more

Hi everyone Hope everyone is keeping ok? I had my first session of Paclitaxel this morning.  I decided to do a fast 24 hours before and also 24 hours on the day of chemo.  I am looking forward to eating tomorrow!!!  I have read some good comments and research about fasting so thought I would give it a go.  I have just had lots of green tea and water today. I didn't bother with the cold cap either as I don't like being cold anyway and I thought it might be uncomfortable.  Plus I don't want to be in the unit any longer than I have to. I feel ok this afternoon , but obviously I don't know how the next few days will be, I will keep you posted.  I had a nice long bath when I got home as my mum has the kids for tea. I have decided to try icing my fingers and feet at the next session just to see if it holds off the tingling side effect that I have been told about.  I have found some good ice gel socks on amazon so going to give them a go next week. Gillyflower - sorry to hear you are no longer having paclitaxel.  I hope you do well on your new drug. My oncologist did say that if my liver stabilises then he will have no hesitation to put me back on the hormonal drugs, maybe fulvestrant. He did also talk about a new drug that is coming onto the nhs wales in July this year but the drug is only for people who have the PIK3 mutation.  he said about 40% of breast cancers have this mutation so once the drug is approved he will send my tissue for biopsy.  Obviously if I do not have the mutation the drug will not be available to me. Take care ladies. Daisy x ... View more

Hi everyone I have just been told I have progression in the liver. I have been on ribociclib for about 10 cycles but its now stopped working. I'm due to start paclitaxel ASAP. I have never had chemo so have no idea what to expect? Any advice, tips? Thanks  ... View more

Fantastic news Jools!!! Well done X ... View more

Hi everyone Just thought I would share my results from my 3rd CT scan.  It was good news as everything is stable, no new lesions and no spread. Phew!! My Ca153 marker has gone up a little again from 498 to 553 but they said this does not worry them as scan was stable. Anyone had this before?? Thanks   Daisy  ... View more

Thank you Jools. Hope your feeling better after your booster.  Positive vibes to you and Kat for tomorrow. Nice we can support each other with our scans being similar times.  X ... View more

Hi Kat Thank you! I am so nervous it's unbelievable. I will update you soon. Very best of luck for your results too, il be keeping everything crossed for us both. X ... View more

Hi Jools After I posted yesterday I did get a reply from Bayer.  I think its a generic reply but it does say they are hoping to update by end of the year. See below   Thank you for your enquiry regarding the ERSO program.   At Bayer, we endeavor to move our compounds through development as quickly as possible, and at the same time have to take prudent steps to ensure the compounds are safe and have the potential to provide the benefits we are striving to achieve for patients with unmet medical needs. Because of these necessary steps, the drug is not currently available for trial in humans, but we hope to be able to provide the community an update on the status of the program by the end of the year.     Sincerely, Dereck Amakye   ... View more