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just diagnosed with liver/lung and bone mets need some hope

17 REPLIES 17

Re: just diagnosed with liver/lung and bone mets need some hope

Thanks Lucinda for bumping this up. It's the usual four in the morning and I'm reading posts from some ladies on here and find the good news stories comforting Jane xx

Re: just diagnosed with liver/lung and bone mets need some hope

Just bumping this up for Jane, a newly dx lady. Hope you can find this.

 

Lxx

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Re: just diagnosed with liver/lung and bone mets need some hope

Hi Its taxol am on is that the same???? am weekly for 17 weeks using the cold cap it worked for me last time so hopefully will again.
Thanks
Jill
xxx

Re: just diagnosed with liver/lung and bone mets need some hope

Hello Jill,
I'm on Taxotere (Docetaxol) with liver & lung mets. I have it 3 weekly for 6 cycles, alongside Herceptin, last one due next week. I had scans after the 4th cycle which showed significant shrinkage - over 75% reduction in the largest liver tumour (which was a relief as it started the size of a tangerine!).
Cold cap worked for me, I take paracetamol half an hour before my cap goes on, which seems to help with the initial 'ice cream head' feeling. Take a warm scarf or towel too, to wrap around your neck. I've stuck to the advice from my bcn to wait a few days before washing my hair afterwards, then I use shampoo for sensitive scalps, avoid styling products & use the hairdryer on a low setting.
Good luck tomorrow if you see this post in time.
Sarah.x
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Re: just diagnosed with liver/lung and bone mets need some hope

hi ladies thanks all so much for your positivity its helping so much, I dont feel strong enough to come in the chats yet maybe try next week. I start my Taxol tomorrow and plan on doing the cold cap did it last time and it worked so hope its same this time, I still cant beliver how sneaky this disease is and how cruel. Re-booked my Florida holiday for sept so that should give me something to aim for, but can help thinking will i be here?????

Hope your all feeling as well as can be
Jill xxx

Re: just diagnosed with liver/lung and bone mets need some hope

jill, dont forget the live chat is on tonight at 8.30. it is really good mags x
nicky08
Community Champion

Re: just diagnosed with liver/lung and bone mets need some hope

Hi NBF/Jill
Sorry to hear of your recent diagnois, it affects us all so badly and I remember the shock only too well when I was told I had bone mets 5 years ago. I also remember more clearly when I was told a month or so ago that it had now spread to my liver 😞 I think the shock of it all is very draining and you can feel exhausted just dealing with that, let alone treatment. I found once I had a treatment plan in place it helped, particularly as you know that the *uggers, are being beaten up and poisoned. I had 6 x FEC back in 2008 and overall had more good days than bad. It did take a while to get over the effect of chemo but you just have to take your time and listen to your body. After chemo I was on hormone treatments for 5 years until this latest change and coped really well, doing all the things I used to do. I'm now on an oral chemotherapy, capecitabine, which has it's own list of side effects so I'm dealing with these again after a long break. It is also distressing to have your plans interrrupted but think of it as just that and that you will go to Florida when you are over the chemo. We went the year after I'd finished chemo, my girls were teenagers, and still loved it.
Nicky x

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Re: just diagnosed with liver/lung and bone mets need some hope

Hi Jill sorry to read your story but just had to add my 5 cents worth. I was dx at the outset with extensive mets in liver and bones. I started out with 6 cycles of Taxotere at 3 week intervals along with Herceptin with a modest response, some slight shrinkage and no further spread. Nearly a year from dx now and stable on Herceptin & Zometa. I feel your pain, at time of dx we were 6 weeks away from going on holiday to Disney World and of course had to cancel. I wouldn't contemplate travelling abroad during chemo, we finally made it to Florida in January which was 4 months after finishing chemo. I still have no energy I'm afraid, in many ways I'm worse now than I was during chemo but everyone is different. I'm back at work so probably doing too much and I also have other health issues. Hang in there you might feel more settled with it all once treatment starts. Take care x
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Re: just diagnosed with liver/lung and bone mets need some hope

thank you all so much for replying, I have been reading your posts on my phone but cant reply. I had a MRI scan today and managed to speak to the BCN who said I will probably be on taxotere?? weekly doses has anyone had this and what is it like also how many weeks are you on it????? I was planning a family holiday this year to Florida as its my 10 year anniversay and me and OH got married in Disney so wanted to show the kids nurse today said it will be a no as its only 6 weeks till I was meant to go, cant stop crying. Can you also tell me if your energy levels improved once treatment started???

Thank you all so much for your help

Jill xx
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Re: just diagnosed with liver/lung and bone mets need some hope

Hi
Sorry to hear of your dx.
I was dx with my primary in September 2011 (with lumph nodes invovled) and at the time was advised that the bone and ct scans came back clear. Last summer I had bad back ache that just wasn't getting better, so I had an x-ray and then another bone scan and ct. The bone scan showed that a slight shaddow on my first scan was worse and in fact 3 vertebra are affected. I initially wasn't given the results of my ct scan (due to my vertebra over-reacting to the rads and needing an op on my spine) but then I had another ct and a shadow on my liver was worse, so in 3 months I managed to get drip-fed with 1 or maybe 2 vertebra to 3 with my liver joining the party.
I am on Ibandronic acid tablets every morning and a calcium and vit D supplement twice a day to strengthen my bones and, as the hormone tablets clearly weren't working for me, I am now on capecitabine (an oral chemo) 14 days on, 7 off. I am just starting my 3rd cycle of the cap and while it makes me tired, the bone strengtheners and time recovering from my back surgery are making me have less pain and discomfort.
I can't walk great distances or stand for too long (10-15 minutes is a max), but I am back to driving, have crutches for standing in the playground waiting for my 6 year old to come out of school and we went a bought a light-weight wheel chair so that we can do normal family days out in the summer. I have only used the wheel chair once so far and that was to go and buy furniture for my step son's flat and a guitar for my daughter. My step son (aged 25) pushed me that day, but is wee are away from roads and hills, I can either propel myself (slowly) or have help being pushed by my daughter. I am wary near slopes and roads with her, as before Christmas she pushed me out of the school hall (while my husband was making sure MIL didn;t topple over) but let go of me in the carpark at the top of a hill. It could have got messy.
It is tough, especially with young children. I try to hide how poorly I am from my little girl, but obviously playing Just dance on the Wii is out of the question. So I sit on the sofa flinging my arms about while she does the actual dancing. I do worry how my health will affect my daughter growing up and, of course, worry that I won't be around to see her grow up. I have a CT scan after Easter, to check if the meds are working and I so hope they are.
Good luck when you see your dr's
Sue

Re: just diagnosed with liver/lung and bone mets need some hope

Hi NBF

There is hope - here is my story

I was diagnosed in august 2008 with what they thought was stage 1 breast cancer - well it tuned into stage 3 with many lymph nodes involved along with vascular invasion - i had a mastectomy and reconstrution - 6 loads of chemo and 7 weeks radiotherapy. Four years later - so in Novemebr 2011 i was diagnosed with secondaries to liver, lung and bone. My liver was so bad they gave me 6 weeks to live - needless to say I am still here. Can't say it has been easy - i was put on chemo that made me so ill I was in a wheelchair for 6 weeks - I got multiple pulmonary emboli and i was very poorly - but i fought and fought hard and at the moment I am very well. I am on my 23rd cycle of oral cap and have a fantastic quality of life. I have a husband and two children who will soon be 11 and 9 - and I really thought I would not see my daughter go to secondary school in Septemenr - but it is becoming a reality.
I have an amazing familly - an awesome best friend who is there for me always on good and bad days and many many friends who without them all would not be in this postion today.
Don't get me wrong I do have bad days and feel rubbish sometimes and I have loads of demons I have to fight with - but | am nowe being treated as a chronic illnesss. I also know that at some point his awful disease will progress but for now I am enjoying life and making the most of it.

Massive hugs

xxx

Re: just diagnosed with liver/lung and bone mets need some hope

girl, keep fighting! the game is NOT over! It is horrible and all of us the secondary girls, we know how you feel! take good care of yourself. Let your doctors treat you and stay positive
hugs
valia
x x x

Re: just diagnosed with liver/lung and bone mets need some hope

NBF, sorry you have had to join us but as the others have said hopefully you will find comfort and information and hope in these forums.
I was diagnosed with bone mets in 2006 after primary diagnosis in 2002, like you I thought it was an immediate death sentence and it certainly took time to get my head around everything. I have had two lots of hormonal treatments and after spread to lymphs last year am currently having my second type of chemo. But I am still here 7 years after mets diagnosis and determined to keep fighting. You will find many other ladies here who have had mets for a number of years.
As the others have said I am sure that you will feel better once you have a treatment plan in place so good luck for your appointment next week and try to keep positive.
sending you lots of love
Smartie x

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Re: just diagnosed with liver/lung and bone mets need some hope

NBF, you are not going to die soon. Right now more treatments are being discovered that mean secondary breast cancer can be treated as a chronic disease like Heart Disease or Lung disease etc. I know after surgery, chemo etc its a big blow to hear that the disease has spread. So it hasnt gone away but given time to adjust you will rally and meet it head on, take the treatment and stay and feel well. I have had BC twice, the first time time my youngest was just 12 and I was desperate to live until he was old enough to manage without me. He's 21 this year and though I too have secondaries I am determined to keep going. Be gentle with yourself this is S**T but you will get your head around whats necessary treatment wise and keep going. Sending you love and hugs for now xxx Kris

Re: just diagnosed with liver/lung and bone mets need some hope

hi, i to have secs in 4 vertebrae and liver, it is very hard to get your head around unlike the breast cancer because what ever you go through, op, chemo and radiotherepy, you beleive that it will all be worth it to get cured. then your world falls apart and out of the blue the secs/ are diagnosed/ well i have started the same treatment as lucinda and am hopeful it will keep me going for many many years, i feel so well and have so much to live for to let the bugger get me.

so try and keep positive, there are lots of different treatments for us al. join the chat line with us on tues evening at 8/30/ it is great to talk to others. you are not alone and we are all here to help and suppory each other. mags xx

Re: just diagnosed with liver/lung and bone mets need some hope

NBF sorry you had to join us but you have come to the right place to get help.I was dx with bone mets from day one in May 2009.When I was dx I thought the worse but I am still here and still getting treatment.Once they have a treatment plan you will feel much better and will be more able to come to terms with what is happening.If you look in the secondary section you will see threads for bone mets and bone/liver mets.You will see lots of ladies there getting suuccessful treatments.I have recently had spread to the liver and have just started a new treatment called everolimus/exestemane.There are ladies who have had bone mets for many years.It is so hard when first dx with secondaries and even harder when you have young ones but it will feel better once you know what your treatment will be.

L xx

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Re: just diagnosed with liver/lung and bone mets need some hope

Hi NBF,

I'm sure other users will be along soon to offer support but please do remember that the BCC Helpline offers information and emotional support if it would help to talk to someone in confidence. It reopens on Monday morning Tel. 0808 800 6000 (Mon-Fri 9am-5pm and Sat 10am-2pm)

Take care,

Anna, BCC Moderator

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just diagnosed with liver/lung and bone mets need some hope

I was told on Thursday that my cancer has returned and is now in my liver, lungs (multiple small nodules) and in my bones and am so scared am going to die soon. I have 2 beautiful kids aged 7 and 4 who are my life I cant bear to think of them growing up without a mum. I really need to hear some success stories or something to get me through. I am meeting doctors next week to discuss treatment plan.
I HATE THIS DISEASE!!!!!!!!!!!!!!!!!
NBF XXXXXX