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Liver mets - new thread

Member

Re: Liver mets - new thread

Thanks Helen. That is really encouraging.
Member

Re: Liver mets - new thread

Mrs mu,I've used eurotunnel to travel to USA which more insurers won't touch or costs more than holiday. I have lung,liver,chest nodes,most of spine ribs and pelvis. They want to know if you are fit to travel so get your onc to make a note that you are,not going there for treatment and are not terminal( 6 months to live)
Hugs,Helen xxx
Member

Re: Liver mets - new thread

Hi Katie and mrsmu, welcome, mrsmu I would second what Nicky says about Eurotunnel insurance I got really good annual cover with them - initial price didn't change even after I declared my health status!
Katie, I haven't had same reactions as you so can't advise but do know that there are lots of treatment options for liver Mets xxx
Member

Re: Liver mets - new thread

Hi nicky08. Thanks for the welcome and the tips. It is great to chat with others in a similar boat!
Member

Re: Liver mets - new thread

Thanks june
Member

Re: Liver mets - new thread

Hello Everyone

 

Just wanted to give you this link to our web page on Travel and Insurance http://www.breastcancercare.org.uk/breast-cancer-information/impact-breast-cancer/finances-practical...

 

best wishes

June, moderator

Community Champion

Re: Liver mets - new thread

Hi Mrsmu and sorry to have had to join us. However it sounds like your treatment is working very well, so that is great :-) I must admit I have never asked for my prognosis firstly as I was too scared to and then later on because I might not like what I hear having already lived with secondaries for 7 years!
Over those 7 years we have travelled a lot, doing what you and your husband also seem to do. Initially there were quite a few insurance companies that would insure you for travel to USA and Caribbean which is the most expensive destination but they are now few and far between. However a lot if us now have taken out insurance with Eurotunnel which does cover pre existing conditions, including secondary BC, for worldwide cover, not just if you use them or just go to Europe, the cover us very reasonable, by that I mean about £120 for annual worldwide cover! You have to meet their criteria for cover which us you are stable, your doctor says you are fit to travel, you are not seeking treatment abroad and you are not terminal. The last one is what a lot if us have had thoughts over whether they would wriggle out of the policy etc but nearly all of us have had the confirmation from the advisor that terminal means weeks or months to live and you know or have been told that. I will find and 'bump up' the insurance thread as it's useful this time of the year anyway. There are other companies on there that ladies have used but all tend to quote higher prices, don't offer worldwide cover or annual cover. Happy holidays :-) We are off soon for another trip, this time into Europe, just before my next scan results are due, fingers crossed we get to go on another holiday after as well!
Nicky x
Ps there is a very long thread in the Treatments section about Xeloda/Capecitabine which you may find useful if you've not seen it already.
Member

Re: Liver mets - new thread

Hello Mrsmu

 

Welcome to the forums.

As well as the forums we also have a support helpline where the staff can offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

Best wishes,

June moderator

Member

Re: Liver mets - new thread

Hello Nicky08. I am new to the forum. I have secondary BC and am on capecitabine and denusomab. Me and my husband always spent any money we could on travel and we are trying to do something in between appointments. When we get away it does us both so much good. I have travel insurance that excludes anything to do with BC because the alternative was so expensive we couldn't travel. That makes me a bit nervous even though I am generally well and have EHIC card. Have you any advice from your experience?
Member

Re: Liver mets - new thread

Hello all. I am new to the forum. I was diagnosed with primary BC in 2011. After a gruelling round of surgery, chemo and radiotherapy, I kind of recovered and went back to work. After a lot of tests I was diagnosed with secondaries in October 2013, in the liver, pelvis and lung. I have been on capecitabine and denusomab since January 2014, with a couple of breaks. The lung met seems to have disappeared! I am greatly heartened by the stories on the forum. We pressed the registrar for a steer on life expectancy. He said average 2-3 years but I doubt if the consultant would have put a number on it. At the time I was pleased because I thought I might make it to christmas! Now I'm not sure whether it meant anything, particularly reading inspiring stories on the forum. I have one suggestion for anyone with palmar plantar syndrome. I have found a winning formula with aveeno cream and skechers memory foam shoes. This combo has liberated my poor feet!
Member

Re: Liver mets - new thread

Thank you Nicky. I am grateful for your reply. I didn't hear back from Onc secretary yesterday so I'll get back to her this morning. The itching is driving me potty!!!!
Katie x
Community Champion

Re: Liver mets - new thread

Hi Katie
So sorry you have to join us on the mets side of the forum, even though you have had bone mets for a while now it is still a shock to hear of progression. My bone mets showed up in 2008, nearly 5 years after my primary and then I had further spread to my liver 2 years ago in 2013. I have been on Capecitabine initially for the liver mets and then went onto another chemo together with Herceptin and Pertuzamab as my receptor status had changed from HER2- to HER2+. I am also on a hormone tablet as I am still hormone positive. From being a member of the forum since 2008 I have read and learnt a lot about secondary BC so in some ways it wasn't a surprise that mine spread to my liver. However I also learnt that there are treatments out there that can keep you stable for many years and in some cases get you to NED with the soft tissue mets. There are also ladies on here who have had high LFT results but have responded well to chemo so that these come right down very quickly. I can't suggest any particular questions to ask your oncologist other than the usual ones of what treatment will you be on and when will it start. Presumably from the biopsy they will know the exact make up of your mets and therefore be able to give the best treatment whereas if patients haven't had a biopsy sometimes receptor status can change and therefore the appropriate treatment isn't given as it's based on previous biopsies usually of the primary. As to the itching I think that's down to a build up of bilirubin but that may be something I've remembered wrong so I'm sorry if that is incorrect. Hopefully though that would stop once treatment begins assuming it is related. Good luck though and push for an appointment as soon as possible so you know what is happening. Come back on here with any other questions or for support either on this thread or the other active one called 'Bone mets - please join in' where a lot of us post whether we only have bone mets or have other mets as well.
Nicky x
Member

Re: Liver mets - new thread

Hi there- newbie to the liver thread! - I haven't been on the forum for ages. I was initially Dx with bone mets 6 months after primary Dx in July 2012 her2+. Anyway was doing ok on herceptin. However found out in Friday I have liver mets from gastro consultant. Been a strange one. Initially thought I had gallstones back in October. Then blocked bile duct. Let being told csncer doesn't behsve this wAY. Recently had liver biopsy - was being checked for autoimmune hepatitis. Anyway cancer cells have dispersed in my liver. My lft's have been credibly high. I phoned my Onc secretary this morning to try and book appt. just wondered if anyone had a similar story and positive experiences to share please. Feel like I've been carrying on as normal - at work teaching and running around after my 8 year old and then this happens! Hey ho! Are there any questions I need to ask onc? Any tips on itching also gratefully received. Thank you in advance. Katie x
Member

Re: Liver mets - new thread

have bumped up thread on treatment page x
Member

Re: Liver mets - new thread

Hi all. Hope everyone is doing ok and treatments are being kind to you. Picking brains again - has anyone had or know anything about liver ablation ? A lady I have been told about asked about this to her onc she was told she wasn't a candidate for it then went privately for a second opinion to the marsden and is now going to receive it on the nhs through the Marsden, is this something that onc can't offer maybe ? Or don't approve of it ? If anyone knows anything be good to hear, maybe a stab in the dark but don't want to be left thinking, What If xxx
Community Champion

Re: Liver mets - new thread

Hi everyone and a big welcome to fruitfap and Mrs Merc - sorry you have had to join us.
That's a really good explanation, blonde, about prognosis, one I shall try and remember to use when someone else is given the dreaded prognosis. As you have said, without treatment we probably all have a similar timescale but the advances and even the older treatments still work so well. It's also good to see how well you are still doing 12 years on from your secondary dx, great news when you posted a few weeks back.
As to being ER+ I have been living with secondaries for 7 years now and have been ER+ from the beginning (Mrs Merc) and hormone treatments kept me stable for nearly 5 years until I had progression but at the same time a biopsy showed that I was now HER2+ having been HER2- up to that point. Having had chemo I am now back on hormone treatment along with follow on treatment of Herceptin and Pertuzamab as elliedog is. Hormone treatment can be very successful and are less invasive in a way than chemo although they do all have their own side effects and just because Tamoxifen didn't work or stopped working it doesn't mean an AI won't work (fruitfap) I hope you newbies get some answers soon from your team and that treatment starts soon if it hasn't done so already as I think all of us found it easier to cope with this diagnosis once we had a plan in place. Keep coming back to ask questions though and there is always someone who can help.
Nicky x
Ps Hi to all other liver mets ladies, hope you are all coping with treatments and side effects. X
Member

Re: Liver mets - new thread

Mrs merc and fruitfap
Aren't we all 12 month prognosis as secondary BC patients? I know I got the full payout on my pension because I had a 12 month prognosis, and that was years ago! As far as I am aware, the 12 months is your prognosis without treatment - makes sense. With treatment the medics have no idea how long we will have and the odds are getting better all the time.
HER2 was a death sentence when I got my primary in 1994. They didn't know about HER2 just that some women died within 5 years - those usually with HER2 - and I was never tested for HER2 until my cancer reappeared 9 years later.
With my chemo failing and cancer spots throughout my liver, I was put on Herceptin and told, optimistically, that there was a woman in America who had lasted 4 years on Herceptin - here I am still going (and I often wonder about 'that woman in America'). So you see they can tell you what will happen if you don't have treatment but cannot predict the outcome if you do.
Blondie
Member

Re: Liver mets - new thread

Waiting for results and treatment decisions is really hard. It always feels more positive when there's a plan.
Mrs Merc I would echo what elliedog says: they cannot know enough to give you a 12 month prognosis, that is really unhelpful. When I was diagnosed I got told to try and look on secondary BC as a chronic condition - not entirely accurate but it helped me think a bit more long term.
Elliedog keeping everything crossed that you are still NED this time round xxx
Member

Re: Liver mets - new thread

Hi EJ81

 

Thank you for your reply. 

 

Nice to know ladies her "get it" as you say. I always feel ever so deeply connected to each story I read. 

 

Sigh, well, coming back to my issue, Im waiting to hear back from the hospital what their thoughts are for treatment options, meanwhile the wait serves nothing but agony for my mind that runs away with the slighest of thoughts.  Honestly, if I did do my morning and night meditations, I would even more neurotic than I am now! haha 

 

 

Member

Re: Liver mets - new thread

 Hi all,

 

Mrs_Merc- sorry to hear your news.  Lots of questions there and all sounds rather confusing, when you are told one thing and then it all changed. 

 

HER2 positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells. Just so you know.  I believe Herceptin is the choice drug for that. Double check that. Not sure if it is consider chemo, let us know when you find out. 

 

It sound like they gave you two prognosis's based on the two types of cells they are predicting to find.   Which ever one tey find they will treat you according to that protocol. Im sure it is alot to take in, when they tell you what they are thinking. 

 

Get them to write stuff down next time. xx

Member

Re: Liver mets - new thread

Hi Mrs Merc and Fruitfap
It always amazes me when some doctors try to tell us how long we have left on this earth. There is no way of knowing.My onc has never given me a sell by date and has actually said hes looking at me as long term which meant the world to me. I was dx double whammy two years ago with small liver met. We went down the road of right breast mx then docetaxal with Pertuzumab and Herceptin. At my last scan I was still NED although I have my next scan on Thursday so still hoping for NED.I continue with Pand H with Tamoxifen thrown in.Your onc should discuss all the possibilities of treatment with you and if your not happy with your onc ask for a second opinion.My onc and nurse remind me that things are changing all the time and that he has many ladies that continue to do well on Herceptin alone after many years.Hope I haven't gone on to much and you get the answers you want.X

Member

Re: Liver mets - new thread

Hello and welcome Fruitfap and Mrs Merc. Like EJ81 I was dx with mets from the start 13 months ago - mets are liver, lungs and bones. There's such a lot to take in and cope with and its only natural to feel scared, but there's ladies who have been living with mets for many years who will share their knowledge and experiences.
Mrs Merc, I have Herceptin with Pertuzumab and had Docetaxel chemo alongside them to shrink the tumours initially as I'm HER2+ and ER/PR+ too. Really not sure why chemo not suggested but assume they are trying other routes first. I'm really shocked that you were given a 12 month prognosis as it must make it even harder to cope with your dx. I would ignore that as there are treatments available and I'm sure some of the other ladies who are much more knowledgable than me will be able to reassure you.
LD x
Member

Re: Liver mets - new thread

Hi All Woman Happy

 

Mrs_Merc back on the forums now with secondary’s following my first diagnosis of breast cancer back 2012 when I had a right Mastectomy and ANC, FEC-T, Radiotherapy and Tamoxifen for grade 3 IDC ER+, HER 2-, LN+.

 

I was taken poorly and into hospital for a couple of weeks at the end of Feb with some kind of infection. Originally they thought it was biliary / gall bladder, but the US showed that it wasn’t. Then they found a heart murmur and suspected endocarditis (heart). The US did identify and alert them to a significant number of lesions on my liver and some ‘suspicious’ lymph nodes in my stomach (now confirmed as involved).

 

The biopsy shows that hormone sensitivity has increased from 5/8 in 2012 to 8/8 now. As a result they have sent the samples off to confirm HER status for consideration of Herceptin? Is that considered as chemo? They said in the discharge report that ER+ gives 12 months prognosis, whereas ER- would mean they consider chemo. In my last appointment they have poo-hoo’ed chemo and changed me onto Anastrazole and Zoledex with 4 – 6 weekly CT scans.

 

I guess there is no point in making me poorly if they don’t need to, or if it wouldn’t particularly help, but am I reading this wrong? Have they given up on me, or am I ok to keep doodling on and may well do so for many years to come if I’m a good girl?

 

Sorry for all the questions, but I am being really positive and sorting things out at home, but still have doubts I really understand the full situation. Can anyone else relate to that?

 

Ex- Darling Buds of May 2012 Chemo thread,

“A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.”

Mrs_Merc xxx

Member

Re: Liver mets - new thread

Hi Fruitfap,
Sorry to see you're joining us. I'm a relative newbie with secondary diagnosis from the outset nearly a year ago. There are lots of ladies on here who have been keeping going on various treatments for years and who have tonnes of great advice. This is a great place to come to ask questions and share how you're feeling with others who 'get it'.
One thing I would say is that chemo for secondaries is often more about maintenance rather than blasting everything so it may be easier to manage xxx
Member

Re: Liver mets - new thread

Hi fruitfap

 

Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site.

 

While you are waiting for replies I have put for you below links to some of BCC's publications you might find helpful.

 

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-liv...

 

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc...

 

Take care,

Jo, Moderator

Member

Re: Liver mets - new thread

Hi 

 

Grade 3 IDC, ER+, HER2-

 

Just joined this community. Wanted to share my experince, as I find it hard to talk to loved ones.  Brief, history,  but 2012 diagnosed with grade 3, Left, breast cancer; went through 6 chemo's, then radio, then a skin saving masectomy with temporary implant. All in one year. Enough to beat the life out you.

 

So fast forward 2014, (been on tamoxifen since end of 2012) in early 2014 I Had a DEIP, and then a  PET/CT scan revealed 3 liver metastases. Im back on the zolerdx and letrozole- which is hell. IM BRICKING IT.  In a state of dispear and scared.

 

 

Thinking seriously to have chemo again. Has anyone been through so much treatment and cant see the end of the tunnel?

Member

Re: Liver mets - new thread

Thanks again for your information, there hasn't been any mention of Heceptin for my mum so I'm guessing she is negative for that xx
Community Champion

Re: Liver mets - new thread

Hi
Another fact I learnt from this forum was that receptor status can change! With my primary I was ER+ and PR+, HER2- On my secondary dx when I also had a local recurrence my receptor status was the same. However, when my mets progressed to my liver in 2013 a biopsy showed I was now HER2+ and still hormone positive, what is known as triple positive BC. I'm not sure if this is a good thing to have happened but it has opened up HER2 antibody treatment to me. As I had health (heart) issues that needed sorting I didn't start Herceptin and Perjeta (together with Docetaxel chemo) until last August when Capecitabine started to fail so I have only been on this type of treatment for 6-7 months. The hormone treatment isn't usually given with chemo which is why I started that once chemo was finished.
Nicky x
Member

Re: Liver mets - new thread

Thank you Nicky your knowledge is amazing although I know it certainly isn't a chosen field. I didn't realise that you could be on Heceptin and hormone therapy together. How long have you been on Heceptin ?
Love sian
Xxx
Community Champion

Re: Liver mets - new thread

Hi Sianie, don't worry about asking questions, that's how I've learnt so much! Certainly not from the general medical/oncology sector as they seem reluctant to share! I am currently on Herceptin and Perjeta 3 weekly infusions so to some extent I'm monitored because my blood is tested every 3 weeks prior to the treatment and my liver function is always included in those tests. However for a 'proper' look at things I am being given CT scans every 3 months or so which seems to be the norm, unless your onc uses tumour markers which do give an underlying trend, mine doesn't by the way.
I am really achey on letrozole! Much worse than when on Arimidex. In fact I was convinced my bone mets had gone mad so to speak as I had so much back pain but seeing as I had also just had a CT scan after finishing chemo I knew that wasn't the case. It is definitely worth asking for different brands if your mum suffers a lot with the first one she tries. Pharmacists are usually quite helpful in my experience and will get a different one in to try if the aches are bad. The worst so far for me is Cipla then Actavis and the 'best' Accord. I might ask for a prescription for the branded product but GPs are reluctant to do this as it is so much more expensive than the generic form. It's worth reading the hormone treatment part of the main forum as a lot of ladies with primary BC post their experiences on there. There used to be a thread on the secondaries part as well but it's not been used for so long it seems to have disappeared way down the list. I do know from experience (my own and others) that not all brands are the same despite the active ingredient being the same and couldn't believe how some brands affected me when I was taking Arimidex. In fact I insisted on the branded product in the end as the extra side effects were so bad. A lot of ladies, at the time and even now, talk about saving the NHS money etc but when you suffer like I did, and need a further prescription for tablets to counteract the extra side effects, it's not so cost effective after all!
Nicky x
Highlighted
Member

Re: Liver mets - new thread

Thanks Nicky, how you doing on letrozole ? How do you get monitored since being on it to see if it is working ? Sorry to pick your brains we are just new at this xxx
Community Champion

Re: Liver mets - new thread

Hi Sianie
I started the hormone treatment about 3 weeks after the last chemo, when I next saw my onc and he then prescribed the tablets. Since then I have got them from my GP, as I used to when I was on Arimidex previously. Hope your. Mum continues to do well following on from the chemo. I had chemo back in 2008 when my mets were first diagnosed, had a good response and then nearly 5 years of stability on Arimidex.
Take care all.
Nicky x
Member

Re: Liver mets - new thread

Sianie that is good news. My onc seems to alternate between ct and MRI scans every 3 cycles as I think they cannm tell different things from them. Really glad you've had some positive news.
Nicky that sounds wonderful. I don't think more holidays sounds excessive - I was looking up ferry times for a trip to France almost as soon as we got back! Definitely need to take breaks where you can. We bought a camper van last year and as soon as the nights are a bit milder we'll be spending as many weekends away as we can.
I had a scan before we went away, with strict instructions not to contact me with results until after I was back! Results were good, some of my livers mets have gone and others are really hard to see! So I get to carry on with taxol and avastin for as long as it keeps the nasties at bay.
Aireen how is your mum? Has she started treatment yet? It always feels better once something's being done.
How is everybody else? I've been off the forum for a bit so I'm skimming through posts trying to catch up! Xxx
Member

Re: Liver mets - new thread

Hi EJ81 - my mams scan was stable to better in the report from the scan. The onc explained this as due to the damage the cancer has caused there is now a lot of scar tissue but can't tell between cancer and scar tissue with a ct scan but cause her bloods have come down so quick he expects to the liver to have bettered. Does make any sense to you ? So 2 more weeks of taxol then a break followed by a hormone tablet so fingers crossed this works for a VERY long time. How are you doing ?
Nicky08 - how long a break did you have to have once your chemo had finished to starting your letrozole ?
Hope everyone else's treatment/results are going in the right direction
Xxx
Community Champion

Re: Liver mets - new thread

Hi EJ, thanks for asking :-)
We went to Pisa and then onto Florence last week. It started off with rain but ended with glorious sunshine and heat, just what we needed. Really. Enjoyed ourselves as I hope you did on your hols. We have another short break planned in about a month, all in between CT scans, and depending what the results are from the scans we will look to take another break ASAP! I have learnt over the 7 years of living with secondary BC to take my holidays when I can so, although this may seem excessive, we didn't do anything after the end of May last year and OH needs a break as much as I do - so it's only fair I take him away ;-)
Hope everyone else is doing OK and not suffering too much with treatments and SEs.
Nicky x
Member

Re: Liver mets - new thread

Nicky I hope you had a good break. We had a lovely time getting some sunshine. Starting to plot the next 'window' for some more time away! xxx
Member

Re: Liver mets - new thread

Sianie how did your mum get on? 

Community Champion

Re: Liver mets - new thread

Hi EJ
Have a fantastic holiday, you deserve it :-) Put all this BC cr@p behind you for a while at least and enjoy the sun, bliss. We're off soon for a short break but not anywhere as sunny as you are going to. However, as with you, it will be my first real break since finishing my chemo although did manage a few short breaks early last year whilst on Capecitabine, before I started Taxotere in the summer. Really looking forward to it but as it will be a more sight seeing holiday I think OH and I need a more relaxing break later on where we can chill out, just have to plan that one between scans, as we do!
Nicky x
Member

Re: Liver mets - new thread

Oh lovely, have a fabulous time xx
Member

Re: Liver mets - new thread

Fuerteventura - can't wait. First decent getaway since this all kicked off. Starting my next chemo cycle a week late too so I don't have to too when I'm knackered!!
Member

Re: Liver mets - new thread

Thanks EJ81, my mum has just come out of her scan now so fingers crossed for good results. Where you going nice on your holidays ?
Love sian xx
Member

Re: Liver mets - new thread

Actually, how is everyone?
Aireen, sorry you are here but welcome. I would think your mum is treatable if they are going ahead with MX but I would like to hear how she is doing. We will all share what we can to help you.
Sianie, that's great that your mum is having such a good response already. I had a good response after my first 3 cycles. Just completed my 6th cycle so waiting for scan results again but I've told my onc I don't want to hear anything til I get back from my holiday next week! I'm off to seek out some sunshine! xxx
Member

Re: Liver mets - new thread

Bumping for Kimmy1
Member

Re: Liver mets - new thread

Hi my mum is on 18 weeks of taxol to and has also received a good response due a scan soon as Drs can believe blood are down from 1800 to 285 in just 7 weeks of treatment. Hope you still responding well x
Member

Re: Liver mets - new thread

Hi Aireen, I know exactly how you feel my mum was dx December 14 with liver mets while I was 39 weeks pregnant and what should of been one of the happiest times of our lives was taken away from us by the horrendous disease. My mum is currently on her 11th weekly taxol with 7 to go then will be followed with a hormone tablet. She really well at the moment and you really wouldn't know there was anything wrong with her physically but mentally she has ok day then terrible days. How is your mum at the moment ? How are you coping ? Xxx
Member

Re: Liver mets - new thread

Good day. My mother was diagnosed with breast ca stage 4 wih liver, bones/skull mets.. Im so worried about her.. I don't know if they are still manageable or treatable.. She haven't started any medication/chemo yet because she's scheduled for palliative mastectomy this Feb 9..
Member

Re: Liver mets - new thread

Hi,Hilary,please let us know how you are.
Huge hugs,Helen xxxx
Member

Re: Liver mets - new thread

Yes thinking of hilsy too....hope all is well and sending love and prayers xxxx
Member

Re: Liver mets - new thread

Hilsy, a month on and another note to say I am thinking of you!,

Big hugs x
Member

Re: Liver mets - new thread

Hi brave,
I'm on taxol and avastin, 9 doses of the taxol so far but 18 planned if my scan results are good (having to wait a while!) I've been led to understand it could be more if its working well.
Has anyone had any experience of painful nails on taxol? My fingernails have become really sore, weird as I've just had my break week, but enough that it is waking me in the night! Onc says this means it may be time to reduce the dose but I'm nervous as I've only had 3 cycles so it seems a bit soon. Especially as the last chemo I had didn't work!