Liver mets - new thread

[springsummer]

yes i have the braca 1 gene so had my ovaries removed as a precaution. they found aa small stage 1 cancer there  so had to have a hysterectomy as well.  was out of prison, sorry hospital ,after the hysterectomy after 2 days!!  keyhole surgery.  this was 2 years ago. all good now no reocurrence. SS

[fergal_jay]

Hi all so nice to see good news, we've had a bit of a blip with mum she has liver mens but on last 2 scans had enlarged ovary which has continued to grow so after having a marker done on it which looked fine they've now decided she needs to go in to hospital and have ovarys and fallopian tubes out. Everything has been looking good regarding breast lump and liver but this has worried us. Anyone else had ovary issues??

[helen44]

Fab news Nicky, really pleased for you. Will PM you sometime soon. I had CT last week - results on Wed so bit anxious at the moment.
H x

[belinda]

Brilliant news Nicky. X

[Marie123]

Fabulous news , enjoy Marie xxx

[Newyork]

Yey really pleased to hear that Nicky!!!!xxx

[LemonDrizzle]

Lovely to hear that you're stable Nicky x

[EJ81]

Stable is really good Nicky. I'm so pleased for you. Xxx

[nicky08]

A quick update. Just had a call from my onc with my results and all is stable in the liver and bones are healing so I am mighty relieved! They don't usually give them over the phone but he us due to move to another hospital in the Trust so this is his last week at the one I go to and I'd have a bit of a wait until my next appointment with a different onc. Nice to have good news and also not have had the time to stress over the time in between the scan and the results. Will find out the actual details when I next go in for treatment but stable is fine by me.

Nicky x

[nicky08]

Hi

gillg78, hope you get the treatment you need and the bone scans show them as being stable, sounds like your onc is on the ball.

Ive had my scan a week or so ago but as we were in the middle of moving house I haven't really been thinking about the results, which weren't available when I went in for treatment last Friday. I am waiting for an appointment with my onc to discuss them as they don't give them over the phone and will chase them up if I need to. To be honest the house move, and the stress associated with that, took my mind off things so I'm trying not to think too much about the results which is unusual for me as I normally want them ASAP. Happy to wait this time!

Hi to all liver mets ladies, hope you are doing well on your treatments.

Nicky x

[Gillg78]

Hey ladies, just thought I would give a wee update. Results show one rogue liver tumour double in size and rest of liver tumour (I have many) and lung stable. Onc is going to do a bone scan, if there is no progression in bones I get to stay on tamoxifen and monitor growth if bones have progressed I change treatment. Mixed bad, but happy to not just go right back onto chemo. Hope you are all well in your treatments. Nicky how fix your results go? X

[Chick]

Hi Isy,

My sugar free diet is where I have taken sugar out of my foods, ie, sugar in tea, alcohol, chocolate etc but I can eat any fruit at all including their natural sugar. Its the extra's we are putting into our bodies that I have eliminated. Thank you very much for your message. I started my chemo yesterday and early days I know but I feel ok. My neck is painful from the Portacath. Sleepless night but I have all day to rest now. I wish you ladies all came into my appointments! I am going to request a liver biospy and a closer inspection of my spine as I fear that when they scan me after 3 chemo sessions, there will not bre any change if the spine for example is scarred from the car accident. Then I dont want them to write me off when I have a chance of getting my lymoh nodes removed. I am also talking to my old surgeon at Leicester as I moved six months ago and he has been a great support. Dont you feel sometimes like you are doing all the work and research yourself!

xx

[Sarn123]

Hi gillg sorry to hear your sad news but hopefully this will help you cope a little bit better, I too was Dx with extensive bone mets literally all over at the same time lungs full of fluid and a few small mets in liver too this was almost 4 years ago to the day. I had cape first for 18 months this took me to a stable place for 8 months on hormones alone, for the last year been on e/e combo off and on and so managed to live a good quality of life for almost all of the 4 years obviously had ups and downs. My last scan showed a progression and TM s have been raising so got to start chemo again next week, but I try and stay positive and although dreading all the crap that goes with the chemo my plan is to get it back under control and get back on hormones in a few months, hope this helps a little bit this is just the way I've dealt with it, but like I said I've had a good 4 years mostly enjoying beautiful holidays all over the world. Good luck with scan results and the future, because you do have one love sarn xxxxx

[nicky08]

Hi gill, no, I'm not stalking you! I just saw your other message and then this one. It's good to see your work/life balance is now right and that you are enjoying your little boy 😊 He must help so much when you see how far you've come since last year. Good luck with the scan results in August, I think I will be due another one around then, and glad you are just getting on with things.
Nicky x

[Gillg78]

Just checking in ladies. Dx in August 14 right out the bag with mets in lung, liver and bones. Nearly a year in chemo, rads to spint and now on hormones I feel dare I say it kind of normal. Dumped the crap in my life, including work! Lol and now take every day as it comes. My baby boys keep my going. Scan time looming with results mid August. Hope everyone is well in their treatments. Xxxx

[Gillg78]

I asked my first onc prognosis who gave me 6 months! Don't see her anymore. My current onc says, I have no idea! Do I expect you to be 75 sitting on a bench probably not but I expect you to do all you can health wise to help you get through treatment. Do your planning, get it over with then forget about it and live your life. I think I love her...xxxx

[Isy]

Hi Chick
I'm actually quite cross that your doc gave you such cut and dried statistics. All the professionals I've come across over the years just don't quote stats any more they are so unhelpful. They lump together a young, fit woman like yourself with an 80 year old who may have a range of other health issues. My onc just keeps telling me there are so many options and different treatments coming along all the time, even compared to three years ago, your body is young and strong enough to try different things if one thing doesn't work. So many people now talk about cancer as a chronic disease, a life threatening one yes, but then so is diabetes and AIDS - look how a diagnosis of that was thought of just a few years ago! All the best with your treatment and stay positive.
BTW does your sugar free diet include natural sugars or just processed ones?

[Chick]

Hello Elly. Thank you so much for your reply. The chemo I am to start began with a D! He said I am to get the full whack but it won't make me as ill as FEC did. My concern too is that I feel like I'm on a conveyor belt. My reports indicted 'presuming cancer cells in the lower spine due to scarring'. I had a car accident in 1997 which unaligned the base of my spine but you wouldn't know. I asked if this was the scarring yet they are unaware of my medical history. They ran an ultrasound test on my liver and again presume it is a tumour as it did not absorb liquid. I do know it's cancerous in the axilla though as my left arm gets great pain and swells. As I've squeezed in an emergency week away, I'm sitting in the sun reading on cancer diets and prevention a. As none of the medics advise on this, it is so essential that we all cut out sugar and gluten. Think I may have mentioned this but I'm being advised by a Social Scientist who works closely with US Professors. Their information is the same as the kindle books I am reading. If we starve our bodies of sugar the cancer can't function. I'm giving it a good go and this week has been hard, in the sun, with no alcohol! Just a still water for me thank you. After all, cancer just got a free holiday xxx thank you ladies, you are my strength xx

[EJ81]

Hi Chick, you are braver than me. I have never asked about life expectancy. Partly as I don't think it is helpful and partly because I don't dare! I agree with Nicky though, I don't think your onc should be giving such specific timings. No one can say how well you will react to chemo and other treatments. Some ladies on here have been living with secondaries for over a decade!

I don't plan too far ahead but that is simply because I have to fit things in around chemo and scans NOT because I think I won't be here!

What chemo will you be on? I hope you find it manageable. Being younger should work in your favour. Lots of love, Elly xxx

[Chick]

Thank you so much Nicky08. The breast care nurse did look surprised at his estimate. I see the whole hospital this time round as totally negative. It's everyone else around me keeping me positive. I know they can't flower it up but it was quite a shock. I have been on a tumour reducing diet with a social scientist. Very simple. Cut sugar out of everything, drinks and food and go gluten free. It's really not that hard but we are aiming at starving the tumours! Be interesting to see my scan results after chemo no 3. So many people praise this forum and postings from strong ladies like you are what my family read too. Thank you x

[nicky08]

Hi Chick
To be honest I think oncologists/doctors do more harm than good when they quote life expectancy. All the facts are based on fairly out of date information and don't include recent treatments that are now being used. I do agree that our life expectancy will be less than we'd hoped for but I guess there are other diseases that also have that issue. There have been ladies on here who have lived for many years with liver mets, in fact have a look at the inspiring stories and one lady in particular, blondie, springs to mind.
I hope you new treatment works well for you and treats you kindly.
Nicky x

[Chick]

Hello Ladies,
Just needing a bit of advice please. I start my chemo on 24th for lymph nodes, base of spine and liver. Been told it's microscopic disease. I'm 46 soon, day before chemo and I asked the question on life expectancy. Bearing in mind I have no symptoms of secondary. I was told 6 months without treatment and 30 months with. I've been keeping positive and strong but mainly for everyone around me. Your posts are essential for someone like me who is now being told to not plan Christmas 2017. Just wanted your thoughts on this please and do doctors normally give such a devastating prognosis? I was also told if I didn't have it on the liver I could have lived for years with it just in the bone x

[nicky08]

Bumping up for vonnie

[nicky08]

Bumping up for Louis/Debra

[nicky08]

Hi Helen (44)
Hope you are doing OK and that your next appointment goes well. I'm doing OK and latest scan shows the liver mets are still shrinking so long may that continue for us all. It has taken a while to get over the tiredness from the chemo so make sure you pace yourself and don't overdo it. I finished in December and the muscle fatigue took a while to get over but generally I am doing well, touch wood. Been on a couple of holiday s and looking forward to another one now with our grown up daughters which is what I promised I would do if I had a period of stability having been on chemo of one sort or another for the last two summers. I will add something to the meet ups thread but it may be tricky to get a venue that suits all of us who are still in the group.
Take care though and maybe you can escape the island again and meet up 🙂
Nicky x

[annieE]

Hi Pen

If you look in the complementary therapies thread there are posts from Hazelr and La-La re having Iscador during chemo although this is not strictly a homeopathic treatment. Also think there are some older posts about milk thistle. Good luck with your treatment

best wishes

Anne

[nicky08]

Hi Pen
I suggest you ask your team about any supplements including homeopathic ones. A few years back some ladies mentioned taking milk thistle to help with the liver function but it also could mean the liver doesn't process the drugs you are on so well so I would keep clear of it unless you have been told otherwise.
Nicky x

[Mrs_Merc]

Hey Liver ladies,

I am on weekly Paclitaxel and Herceptin currently, but wondered if anyone had any experience of homeopathic rememdies whilst on treatment? I was thinking Milk thistle type?

Hugs

Pen x

[helen44]

Hi there my friends. Haven't posted for a while but been reading. Pleased to hear you're doing well Nicky -would be nice to see you sometime soon, will look on the meet ups thread.
Due to see onc next month after finishing docetaxol in March. Feel pretty ok, tired all the time though. Hair is growing albeit with plenty of grey!! Was very brave and went to a party with no turban or wig!
Wishing everyone all the best with treatment, hang in there.
Love Helen xx

[nicky08]

Hi gill
I was only thinking about you the other day, as you had started this thread, so it is great to hear from you and how you are doing. Yes, it takes a while after chemo has finished to get anywhere near human again! I finished in Dec but it's only now I seem to be getting over all those pesky side effects and getting my full strength back. As to my hair it has come back quite well but I do wish my fringe would grow quicker than the rest, I'm fed up looking like my brothers 😉 I too have currently got stable results with further shrinkage of my liver mets so am making the most of my 'in between the scans' time by taking a few short holidays. Wishing you, and all other liver mets ladies well. Do keep in touch even if it's just from time to time.
Nicky x

[Gillg78]

Hi liver met ladies, I haven't posted for ages I sneak a peak sometimes though. I was dx double whammy with liver, lung and ext bone. I have had docetaxil chemo which shrunk liver by 30% and rads to spine and shoulder and surgery to repair my shoulder which has been eaten away. I have been on tamoxifen and ibrdronic acid tabs since February and things seem to be stable. My hair has grown slightly and finally 4 months after chemo I am starting to feel like a human being. Just wanted to say hi and hope you are all doing well in your treatments . Xxxx

[Barton]

What brilliant news, Nicky! Long may it continue! Good news gives all of us hope. Hugs, Barton.x

[elliedog]

Thats wonderful news Nicky. Just goes to show that even without the chemo this is a powerful combo. X

[Mitch23]

Hi Nicky

That's excellent news ! Long may it last for you!
Love jo x

[EJ81]

Great news. Really pleased for you xxx

[nicky08]

Hi liver ladies 🙂
Just reporting back from my CT scan results appointment and all is good 🙂 Liver met/s shrinking and bone mets healing. So relieved as I'm now on Herceptin and Pertuzamab without the chemo element and this was the first scan that would show if it's working. Will wait to see what the full report says when I get it hence the confusion about how many mets I'm talking about.
It's great to hear from you blondie. Although I have seen your annual updates over the 7 years I've been on here I hadn't realised quite how ill you were when you started treatment. Wow, you have come far and long may it continue. I know of another lady through a friend who has also been on Herceptin for over 10 years and initially received it as a named patient back in the day! Still going strong. Thanks for sharing your story again.
Hope all liver mets ladies are doing well on the various treatments they throw at us and that SEs are manageable.
Nicky x

[elliedog]

I agree blondie. You appear to do well on it so why take the risk.

Thanks again x

[sod6162]

Thank you Blondie, yes it does. Congrats and very best wishes for your continued good health x

[blondie]

Sod6162
I have been on Herceptin so long the protocol has changed several times. I have been offered 'treatment holidays' ie miss a treatment or even two (not that I ever did - but knowing I could was a comfort). I was often moved forward a week to avoid Christmas and bank holiday rushes. Then the rule changed and - miss a week and you have to re-load. Now I will move a few days or so either side of my treatment date so I can fit in holidays etc and that doesn't seem to be a problem. Hope this answers your question.
blondie

[blondie]

It has been mentioned but more as a confidence booster - ie 'there are people in the U.S. who have been considered cured and come off Herceptin, do you want to? No? That's fine.'
The consensus here is if it ain't broke.....
So I plug on - 201st here I come!

[elliedog]

Hi All

I recieved my copy of my latest meeting with my lovely onc today.Although I was obviously there when we discussed all this it is still good to see it written down on paper, It was good to see him describe my scan as excellent and that my liver remains normal. He also said that me going for re-construction would be good for me and there certainly no oncological contra-indication. For the moment he wants to scan me annually and to continue on my present treatment.But most of all I took the following from the letter "there is every chance she will remain in remission for years." He has always been positive but careful with his wording and always made me aware of how serious the situation is.To hear him say these words and then put it in writing really does does make me feel that I definately will be here for some years to come yet.

[sod6162]

Thanks Blondie.....one last question...were you able to change the day, or is it always the same day of week....x

[elliedog]

Hi Blondie. Thats great to hear. As you've been NED for a long time have you ever considered coming of the Herceptin?Good luck with you latest scan.
Elliedog X

[blondie]

Hi Sheila
No I haven't worked since my secondary diagnosis as I was given about 6 weeks to live and was very poorly. I couldn't do my job now anyway as I don't have the speed of thought needed (chemo brain) or the energy.
Somehow I ended up on a lower dose. We aren't sure how, possibly I was neutropenic one time and it was reduced and never put back up! Details lost in the mists of time. It means that I can't have the subcut as it is a pre-prepared standard dose so it is injections for me.
blondie

[blondie]

Hi Jo
The answer is, hopefully ( scan soon) none! I have been NED for years now. Hope that is a help and encouragement to you
Blondie

[sod6162]

Hi Blondie, can I please ask... are you having your injections intravenously, in hospital, every 3 weeks? I start my treatment this week, and I wondered how you manage? Do you work? So sorry, don't wish to appear nosy, but I can feel the bottom of my world dropping.....thanks in advance, Sheila

[Mitch23]

Wow that's amazing! May you have many more!
Can I ask a question? How many liver mets have you/ do you have? And for how long? Congrats !!
Jo x

[blondie]

Just to let all you fellow liver mets ladies know - I have had my 200th Herceptin injection!! Amazing, unbelievable - I feel very humble as a appreciate all the work, dedication and money that has gone into getting me this far.

Let's hear it for all those unsung researchers out there - keep up the good work
A very grateful
Blondie

[Mrs_Merc]

Hi all

Thank you for all the support guys, and I hope I can offer the same to you

Please dont misunderstand me - I am well aware of how a prognosis works. I was theatre sister in both the NHS and in private practice for many years - It's just a bit of shock when these words and phrases are said to you - they appear to take on another meaning.

Since my last post, the jaundice has set in and they started me on weekly Taxol yesterday - and as my HER2 status has changed they are also giving me the Herceptin. I am also having a Portacath fitted on Monday as I have litte to none decent vascular access. It was ok when treating and looking after other people- I just cant get my head around needing some help myself.

Anyway, I have been trying to catch up with everyone's timelines here, and I am in awe of how all of you cope with just day to day living. I just hope I can live upto your amazing fights and stand tall with you all in this battle.

Lets nuke these darned nasties

Love to all,

Pen x x

[Mrsmu]

Thanks Ej81. That is really encouraging.