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spread to the liver questions and how to cope with cold cap

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Re: spread to the liver questions and how to cope with cold cap

Hi there,

I appreciate I'm a bit late to the party with this thread but I found all your comments helpful. Sorry to hear about all your stories and frustrations. My partner has secondary breast cancer of the liver and this is triple-negative. She is currently in bed recovering from an ablation procedure, where she had a 3mm tumour 'blasted' (it was 1.6 but in the 3 months since her scan it had grown). It was a success and I guess you could consider her no evidence of disease for the time being. 

I wanted to reply as I know that you've mentioned ablation. I know it's not an option suitable for everyone but until you question it you never know. In my experience always ask the question! Had my partner not suggested it, we would not have been offered it.

Virtual hugs,

 

Ella

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Re: spread to the liver questions and how to cope with cold cap

Hi I did the cold Cap last year and I found it helped to keep drinking a warm drink and take a hotwater bottle. I found it tolerable and that it helped me to feel less sickly. I hope you keep your hair as I did. Incidently 3 weeks after my Chemo ended my eyelashes and eyebrows fell out! I was quite cross and suprised. They grew within a week though so not too bad. I hope your Chemo is sucessful in slowing or stopping progression. Ive had almost a year free of treatment but the return again in my Liver this time means a trial CT7001 -triple negative.

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Re: spread to the liver questions and how to cope with cold cap

Hi Mermaid, that all sounds very reassuring, after my initial shock I am starting to feel quite positive about starting this new treatment.......you have to be don’t you, and I know I am in good hands at the Christie hospital!

Also my daughter and her husband have just started trying for a baby so I have lot’s to look forward to, I definitely intend on being the doting grandma for a long time to come!

Hugs Janette x

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Re: spread to the liver questions and how to cope with cold cap

Hi Janette,

sorry to hear your news and I understand it feels like a big step backwards. I had 3 and half years with just bones and convinced myself it would stay there. Had total meltdown when it arrived in the liver but once again a new treatment starts and it all becomes the new normal. I have found fulvestrant an easy treatment to be on and that kept my liver mets stable then when it became available last year added Abemaciclib to the mix ( this is one of the new targeted drugs like your ribociclib and also palbociclib... apologies for probable incorrect spelling). I’ve just had my first CT scan and the addition of the new drug has actually shrunk the little uggers in my liver. My oncologist was so pleased as I’m also on the lowest dose. 

Good luck with the new treatment xxx

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Re: spread to the liver questions and how to cope with cold cap

Morning Bee, I was told last night that I need to go to the hospital to get my blood and ECG done which is a real pain because it’s a good 30-45 minute drive away also I have to drive on the motorway part of the way which I absolutely hate doing, hubby usually takes me there for scans which is fine because I always ask for a Friday afternoon when he finishes work early, but I suppose in the grand scheme of things this is nothing and I will just have to get more confident with motorway driving!! 
janette x

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Re: spread to the liver questions and how to cope with cold cap

Hi Janette,

Sorry to hear your news. I think this treatment is very good and works well for most people. It didn't work for me because of my liver playing up and my ALT being over 1000. Means I could not tolerate paclitaxol either so was started on a half dose of capecitabine while they try to work out my liver. A nurse will come to visit you and take bloods and ECG which was a real bonus of the ribociclib. Saves all those hospital visits. Thinking of you. x

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Re: spread to the liver questions and how to cope with cold cap

Morning ladies, so I got the news I was dreading yet half expecting yesterday, the little uggers have decided to pay my liver a visit!! Lots of very small spots and largest being 1cm. They are starting me on fulvestrant and ribicuclib in a week or so. Head is still not quite with it yet, it feels like I’ve gone back 6 years and just been told I have cancer!!

hey ho it is what it is and I’ll just have to put my big girl pants on and kick it’s back side!!

Any info/advice on this treatment would be really appreciated .

hugs Janette 

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Re: spread to the liver questions and how to cope with cold cap

Hi Janette

Sorry to hear about the liver mets, it's such a shock when they appear when you've been pretty stable for a long period. I was diagnosed de novo ER+, PR+, HER2- with bone mets in Dec 2012 and ticked along on tamoxifen & letrazole for nearly 3 years before receiving the news of the little uggers in my liver. 6 cycles of docetaxel cleared them and then I was on exemestane until Oct 2016 when they returned - my big problem is that the largest one (6cm at its largest) is in the upper right quadrant of the liver which apparently is the most awkward place it can be!! I can't have RFA or liver resection because of its position & the fact that I have multiple smaller mets as well. It took over a year for oncologist to find someone who considered it safe enough to do a liver biopsy - unfortunately they didn't extract enough tissue to analyse so that was a waste of time & stress.

Since 2016 I have stability in the liver after Herceptin & Kadcyla (when it was thought I had changed to HER2+), 23 cycles of eribuilin, 3 of epirubicin and 28 paclitaxel. Finally after 6 months on capecitabine, the largest met has reduced to 4cm and the others are reducing too.

Nicky08 is my go-to lady for up to date info & support - definitely ask the questions she has suggested. All the very best with your treatment, keep us posted as to what you are put on.

Helen x

 

Hi Bee,

Have you started paclitaxel yet? I didn't bother with cold capping and never have, 3 times I've lost the hair. I have a great selection of 6 wigs!

All the very best with your treatment,

Helen x

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Re: spread to the liver questions and how to cope with cold cap

Morning ladies, thank you so much to you all for your info/advice I really do appreciate it.

I am going to sit down later with pen and paper and write lots down and do some research on the things you have all pointed out so I am fully armed with questions for her on Thursday.

Nicky, I have my LFT done every 6 six weeks before my Denosumab injection and she did say that my liver function is perfectly normal so that’s a good thing!!

hugs Janette xx

 

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Re: spread to the liver questions and how to cope with cold cap

Hi Janette,

I know we all worry but I don't think chemo is as dreadful as you imagine. It is hard but doable. The Capecitabine chemo is in tablet form which makes it easier. Good luck. 

Bee

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Re: spread to the liver questions and how to cope with cold cap

Hi Janette,

I had bone mets 2014 which was 16 years after primary. I took Exemestane for 3 and half years then had progression in bones plus 2 small liver mets. I went into Faslodex and remained stable then 6 months ago we also added Abemaciclib ( Verzinio) to the mix and just had my latest CT results which showed the liver mets had shrunk. So this seems to be a good combo to be on if your scan confirms liver mets. If it is showing up as likely mets, ask for a biopsy to confirm. 

Xxx

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Community Champion

Re: spread to the liver questions and how to cope with cold cap

Hi Janette

I thought I’d reply to you on here as the information may help others who are in a similar position.

Funnily enough our stories seem very similar, I hadn’t realised,  I too had lumpectomy, rads, no need for chemo, tamoxifen although my bone mets showed up nearly five years later rather than your 7 years. From what I know about the way my BC has behaved over the years I would guess that yours is similar in that it responds well to hormone treatments and is most likely slow growing. As to having chemo I hadn’t had it until my bone mets were found but as I also had a local recurrence I chose to have chemo, FEC, but as I knew next to nothing about treatments then I just went for it with no real research, just the options my oncologist was offering. After that I had anastrozole which was effective for nearly 5 years until my liver mets were diagnosed. When they were diagnosed I had Capecitabine which I knew from my learnings from this forum was the most likely treatment to have for my hormone positive bc. I had added complications with heart issues and a liver biopsy showing I was HER2+ (although it was only slightly positive so I didn’t really get my benefit from the treatments I was on for a while after Cape) and I am now currently viewed as HER2- as per my original primary and secondary diagnoses.
If you do have to have chemo it could be Capecitabine , or you may be put on one of the hormone drugs, that you haven’t had, with the added ‘ib’ drug that goes with it. 
Questions to ask your oncologist (if you want to know the answers! I didn’t until about 2 years down the liver mets treatment line!) would be how many lesions are visible, what sizes are they, where are they. Are they treatable with a targeted procedure such as RFA (radio frequency ablation where a probe burns the lesion from the inside out but there are limitations to the size they can treat and how many lesions they are and where they are) or resection (similar limitations to RFA). Freezing them is a newer treatment as far as I know so may not be offered in all hospitals or, again, be suitable. You could ask about a liver biopsy which would determine the receptor status of a lesion but this can’t always be done as there may not be a lesion big enough or in a suitable position  for a biopsy to be performed. This would delay treatment as they would wait for the results of that before starting you off although having said that I have had a biopsy done after starting a treatment.

One thing which I mentioned before is the liver function tests (LFTs) which they will now check more closely. The main ones they look at is ALT, ALP and bilirubin (or they are the ones I focus on) as well as AST and albumin. You can look these up online if you feel you want to know more about them but generally they indicate how your liver is coping and if all are within the normal range, or in a range deemed acceptable for treatment, you will be able to have chemo if that is the chosen treatment - hormonal treatment on its own isn’t so dependent on these being within normal but the added ‘ib’ drugs will probably need them to be. The LFT tests are done at the same time as the normal blood test is done so it’s not usually separate in any way, just an extra tube from what I can tell. Your other full blood count results also should be in the normal or acceptable ranges.

I can’t think of anything else you’d need to ask, or know about at this stage but maybe other liver mets ladies could add what they found helpful to ask?
Hope all goes well on Thursday, it’s good that the follow up appointment is so quick, the reporting for my scans takes far longer (even though the images are sent immediately to my oncologist). 
Nicky. Xx

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Re: spread to the liver questions and how to cope with cold cap

Hi Bee, thank you for your reply.

sometimes I feel I’m burying my head in the sand and should be more proactive doing research but I don’t know where to start......and as you say I don’t know how to pronounce the names of some of the treatment never mind spell them!!
So far I have been fortunate enough to not have had chemo and the thought of it scares me to death!! but hey ho I will just have to get my big girl pants on and deal with whatever is thrown at me!

hugs Janette x  

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Re: spread to the liver questions and how to cope with cold cap

Hi Janette,

It is so hard to cope after all you have been through. I think you have several options including the targeted therapies abemiciclib and ribociclib. (i am terrible at spellings these names.) I don't think I am typical so probably best to start a post to get more common responses.

I could not start on the chemo as my bloods the day before showed my ALT had gone from 500 to 1000. Had to have an emergency CT scan. Saw my consultant yesterday and he says they don't know why they had doubled in a few weeks. I am a puzzle. Anyway he started me on a 50% dose of the cape chemo which really works well for most people by all accounts. I am to have a liver biopsy and a liver mir scan to try and solve the mystery.

I feel sure that you will have several options. From my reading people can have liver mets and  live for years. Best to try not to worry and to see what your consultant says.  Easier said than done I know. Love and hugs xxx

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Re: spread to the liver questions and how to cope with cold cap

Hi Bee, I’ve only just looked at this thread. I’ve always only really posted on the bone thread. Hope you are doing okay.

I am waiting for mri results on my liver, (brief info on my history) primary in 2007 grade 1 had lump removed followed by 4 weeks radio (no need for chemo) and put on tamoxifen. Roll on 7 years and after hip pain mets found in hips, spine and ribs, been stable on letrozole up until now, got a call last week to see onc to be told they had seen spots/nodules on my liver and she had requested an urgent mri which I had on Wednesday, I see onc Thursday for results. I have never really researched treatments etc because I prefer to deal with things as and when.

 I haven’t got a clue as to what treatments to start looking at and what ALT means or the freeze treatments/ cutting away lesions!!!
Im really stressed and worried, so any advice on treatments and questions to ask would be really helpful.

hugs Janette x

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Re: spread to the liver questions and how to cope with cold cap

Hi Nicky,

You have made me feel much more positive. Its great news that you have been able to manage  since 2013. Hope it continues well for you.

 

My liver ALT was over 500 when I saw the consultant in December. I think 30 is the top of the normal range. I am having the bloods done on Wednesday and start the chemo on Thursday. If the cancer is spreading and causing my ALT to rise it doesn't make sense for me not to have the chemo which could reduce the tumours and make the ALT reduce. I suppose it is something that has to be balanced. Does too toxic mean that your liver shuts down? Hopefully if it is too high they will give me a reduced dose but I think I'm having a reduced dose in any case as I am having it weekly.  I don't drink alcohol and haven't had paracetamol for over a month. I am having lots of water with lemon in it and trying to eat broccoli! Hope it makes a difference but my urine is very dark despite all the water being drunk!

Thanks again for your reply and I shall try and stay positive until Thursday when I will not be playing this stressful guessing game.  xx

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Community Champion

Re: spread to the liver questions and how to cope with cold cap

Hi Bee

I also have mets to my liver (since 2013) and at times my ALT levels were too high to have the treatment I was on (Capecitabine). I’m not sure how high your current level is (and you don’t need to tell me ) but I did know on Cape that up to 3 times the maximum reading in the normal range would allow chemo to happen, above that it was too toxic. I did read somewhere that a reduced dose can be given with some treatments so the stress on the liver isn’t too great. My ALT levels since early on in my liver mets dx have remained  fairly normal although  I do Know that things that put stress on the liver are reflected in high ALT readings, this can include substances such as alcohol and, if I remember correctly, paracetamol.

Fingers crossed the levels are OK for treatment to start and you cope well with it. Btw I have used the cold cap before, with other chemos, but, like Linda, if the cap is not a very close fit you are likely to get areas where the hair thins or falls out. After using it on 2 separate treatment types, some years apart, I have said never again. I can’t stand the absolute cold of it, but that’s just me.

I have also had a liver resection, in 2018, which was successful for about a year after which a scan showed new lesions. I was lucky that our local hospital is a centre of excellence for abdominal cancer surgery and that my lesion was in an accessible place as there are some areas that are difficult to access and also if there are too many lesions neither procedure (ablation or resection) will be able to be done.

Nicky x

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Re: spread to the liver questions and how to cope with cold cap

Thanks Linda. I am glad it worked for you and will try to make sure that the cap is a tight fit. x

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Re: spread to the liver questions and how to cope with cold cap

Hi Bee

I had 10 weekly paxlitaxol from end August till 31 st October last year. I did the cold cap. It did work but I did loose some hair. The cap has to be a really good fit. Think why I lost some hair was mine was too big. If you do go for it you must insist. 

Good luck. 

Linda 

 

 

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Re: spread to the liver questions and how to cope with cold cap

Thanks AnnieJ. I am trying to keep positive but it's hard. I asked about cutting the cancer out in May but was told it wasn't a possibility. I didn't ask why at the time as I was in shock and so confident that the treatment would work. Love to you. x

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Re: spread to the liver questions and how to cope with cold cap

Hi Bee, I’m sorry no one has been able to answer any of your questions. I’m so sorry you are in this very difficult position. I have lung mets, but two of my friends have liver mets. I’m not sure what ALT is, so forgive me if I’m not very helpful to you. One has had a liver resection and is doing very well. The other is in a similar position to yourself and she has been unable to have two lots of chemo. Her tumour is quite large and is causing some pain, and her appetite is quite poor. However, she is very positive re treatment, and is hoping that she will be able to have it this week. I think it’s the weekly trips to the hospital that are getting her down. She has lost her hair and is, again, wearing a wig. She didn’t do cold cap first time. She said she couldn’t be bothered ( or manage?) the extra time and discomfort. I think it’s a very personal choice. I hope you get a few more informed replies, and I wish you well with your treatment. X🍀

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spread to the liver questions and how to cope with cold cap

I was diagnosed with secondary cancer in my liver and central lymph nodes at the end of May 2019. I started on abemaciclib and fulvestrant and my scan in August showed that the cancer was reduced. But my liver ALT got too high so I had to come off the abemaciclib and after a few months when my ALT was back to normal, I was started on ribociclib and fulvestrant. That only lasted a few weeks as my liver ALT went up again. The CT scan from December showed a lot of progression of the cancer in my liver and in my lymph nodes. I start Paclitaxel on Wednesday. I am really worried that my ALT will be too high and I won't be able to start the chemo. Has any one else had high ALT with progression in the liver and were you allowed to start chemo. I am not sure what my options are if I can't start the treatment. I have been reading about ablation or cyber knife. Has anyone had this? Finally I lost all my hair when I had chemo in 2012 and I want to try the cold cap again. Has anyone got any tips of how to cope. Thanks for reading.