BERT2011 (Bugger, Estrogen Receptive Tumor)….

Metastic breast cancer at 38

The Sh*t has hit the proverbial

Well it’s been a while and I wish I had better news, but I’m afraid the trials from last year have been un successful and the Epirubicin that I had from November has also been unsuccessful. Tumours in my liver have grown, the fluid on my lung has increased and I’ve just started the last available chemo drug- Vinorelbine. Which I’m told only has a 10% success rate. On the upside no New tumours have grown however my oncologist looked worried.

I asked the horrible, no guarantee, awful question of how long… the answer is hopefully 6 months. Which is shocking and upsetting, and I’m stubborn so hoping I can sneak out a bit longer.

The plan now, ask if there are any phase 1 trials in Manchester or Cambridge, carry on with this weekly chemo ( tablet if I can manage it) and scan again in 10 weeks.

I’m also being referred to the respiratory clinic in Sheffield to see how bad this lung is and if it can be drained, not a nice process but one I will undertake if it makes life easier.

Broken leg update… healing well and other that initial blip of me thinking I was super woman I think I’m doing ok, 5 weeks since surgery and it’s coming.. need to focus on getting normal movement back now ASAP.

Jonathan, family and friends as always being incredibly supportive ….thankyou and I hope going forwards now we can just concentrate on making some memories.

Love to all…. Jane

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Trial start day

Well after several weeks of to’ing and fro’ing, I got on a trial! Yay!! It’s a phase 1 trial.. so first tests in humans.. pretty scary stuff.

Short blog.. this was my first day.

14.5hour day from leaving home at 7am to returning at 9:40pm.. huge thanks to Bob for looking after Bella all day!. Dad and I leave for Manchester. Driven myself as wanted to make sure I could so that I can going forwards.

3 ECGs

5 lots of blood tests

Physical exam

Doctor appointment

Steroids and other concoctions

Cooling cap – freeze to -6.5

Blood pressure tests x 2

Chemotherapy- Paclitaxol

New trial drug – INCB Incyte Arginase trial

1 cannula

Home… tired… and alarm set for 1am to take next set of trial drugs….

Whatta day.

Night night … fingers crossed 🤞🏻

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Next

Not sure where to begin tonight… been pondering for a few weeks about updating my blog… do I want to? What do I put!.. how does the blog help… the conclusion I came to was, that the reasons I started the blog in the first place still remain…

  • a forum for me to put my thoughts into words in the hope that this would help me cope
  • A way to update my family and friends without having to repeat the story, which can be upsetting
  • To help others like me with information

So here I am tonight staring at the curser wondering where I begin… I’ve been thinking the last couple of weeks “I’ll just wait till we have a plan..know what we are doing” then I’ll update the blog.. however that’s been a few weeks now and although sadly things are becoming clearer there still a lot of uncertainty.

The big news… cancer has progressed, my current chemo has stopped being effective and I have growth of tumours in my lung, liver, an adrenal mass and most worryingly several tumours in my spine. I’ve been struggling with pain since November and many scans and tests later have determined that this is due to a new bone met in my spine on L3, ( already had one at L1 which was treated with radiotherapy last year). But this news one is causing a certain amount of grief. Also there’s 5 other small mets appeared higher up my spine, the Lung one has regrown and a newbie has arrived in my liver (9mm). This means that everything put together, Erubulin (the chemo I’ve been on) has lost its effectiveness and it’s time to try something new.

Ok… the hard news… What’s Next… well… the truth is I am running out of options, metastatic Breast cancer is treated in 2 methods, hormonal treatment ( the preferred option as it’s less intrusive to your life, and when you have an incurable disease it’s all about maintaining the best quality of life you can have) and the second option Chemo. Hormonal treatments as we know have proven not very successful for me some time ago so I’ve been on different chemo’s for the past few years. There are only so many chemotherapy drugs and there is only 1 left (suitable for my type of breast cancer) which I haven’t tried. This is called Vinorelbine. …. wow putting down on paper “there’s only 1 left” is not an easy thing to write. Tissues!

So tonight’s blog title is Next… ie what do I do now… I asked the hard question a few weeks ago… how long… and in truth there is simply no way to tell, the reply I forced my poor oncologist to give me.. “2018 looks ok, 2019 may be challenging.”

The last few weeks therefore has been more scans, assessment for 2 clinical trials and trying to come up with a plan to a) sort out the pain in back, sides, stomach etc and b) what treatment plan to start. I was unsuccessful in matching the criteria for the 2 trials, Plasmamatch and Pipa. The most recent CT showed the new Liver tumour met and an adrenal mass so trying to eek out a little more Eribulin chemo is no longer an option.

Apologies if this is not reading very well..there is so much information to impart my thoughts are a little all over the place.

I have started radiotherapy this week on my spine to try and help with the pain that the new bone mets are causing, I have been on a myriad of pain killers over the last few months with some difficult side effects, but I now have a morphine skin patch and optional liquid morphine which is working. Hoping the radio will ease the pain and I’ll be able to lower the morphine requirement.

So the Next is… I have been referred to another cancer specialist hospital in Manchester called Christie’s, it runs more clinical trials than Weston Park and the 2 trials I missed out on were both at Christie’s. Clinical trials run through a number of Phases before they are either classified as a new treatment or discounted. Phase 1trials are the first type of trial of a drug on humans.. this type of trial is now my lifeline. This is what I went to Manchester for yesterday to meet the Experimental Clinical Trial oncologist and ask if they have any new Trials which I may join. I return on Monday for more tests and the outcome of their discussion of me today. … it’s a very scary position to be in, that there’s not much left that we have in the arsenal to treat me. I’m sorry, this cannot be an easy read.. trust me it’s not easy to write either.

Fingers crossed that Christie’s have something I can try… if not then I will start the Vinorelbine, coupled with some more Epirubicin. This is a chemo I’ve had previously and there’s some scope for me to have a bit more before it would affect my heart. After that… who knows.

Well there you are, up to date….

the end of this post is a favour… I am very very lucky to have so many friends who care and I thank you all for that so so much. I do read all your comments on here and Facebook. The favour is… please don’t text me about this post.. I find it difficult to repeat the information and go through the upset of telling this over and again. I hope you understand, please do not think me rude. It is wonderful to hear your kind words of support on Facebook etc, please just don’t be offended if I cannot respond.

Time to put this behind me for tonight, sweet dreams to you all Jane xxx

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Still here and kicking, but cancer keeps kicking back

In the 5.5 years I’ve been fighting this crap disease I’ve read many blogs, hoping to find inspiration and also see how others are being treated, what drugs are out there etc… In all that time one thing I’ve noticed and found hard to handle is when someone stops posting….

its been a while since I’ve written on here, and for once that’s a good thing.. I’ve had 18months of successful treatment on capcietabine, a tablet form of chemo, and it gave me back some semblance of normal life for a while… And when you’ve got a terminal disease the Normal things in life that all you healthy people take for granted suddenly become extremely important. So I’m posting tonight for 2 reasons…. I wanted to say to any other fellow cancer Met fighters….I’m still here.. The lack of posting is only because I’ve been busy enjoying life…

unfortunately the other reason is to use this as my medium to update all family and friends that cancer has given me a swift kick back this week… There’s been progression. As a Metastatic breast cancer patient these are the words you dread hearing from your oncologist. I’ve been having a dull back ache in my lower spine for a few weeks now,  originally just thought I’d been over doing it in the garden or even needed a new mattress… As you will see in the scan pics I’m posting with this feed.. My bone scan comparison with this year and last year disagrees… The met in the L3 joint in my spine has become infected as it were. .. Which means my treatment is starting to fail.. Also there’s been a slight growth of a tumour in my lung.

What does this mean… Well it’s time to change treatment…. How scary is this?… Very……….. Unfortunately there’s not enough research out there yet into metastatic cancer… And it’s incurable… And there is a finite number of treatments…. A Swap means that Ive now ticked off another and I must start on a new one…. That list is getting shorter 😦 and I can’t deny that’s quite scary.

So next week I start some new treatment, moving on to another IV based chemo called eribulin. This will be given to me over the course of 2 weeks, one infusion a week indefinitely until that one stops working

am I scared…. Yes…. Wil I give up…. HELL NO! ..it’s come as a shock as I’d become complacent on capcietabine.. It was working and had for a while…. To be suddenly reminded of your immortality is a fairly swift kick to the guts. Hearing the words from you oncologist “we’,ve got treatments that will take us through to 2018” is quite tough to hear.

So it’s my last weekend pre the new treatment… I’m getting my (as granny would say) glad rags on tonight and going out for some Wine with my friends. Next week will bring a new challenge.

 

Im so lucky to have wonderful people around me supporting me… You all know who are.. Thankyou  ❤️❤️❤️

 

 

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The calm before the storm

So here I am.. The night before my last chemo session ( for now… I must stress there will no doubt be more)…

I feel strangely calm tonight, I’m Very pleased that tomorrow is my last session for hopefully a few months, this chemo has been far tougher to handle than when I had it in 2012, and I didn’t know until Wednesday when I saw the Prof that apparently the drug I’ve had this time (Taxotere, also known as Docetaxol) is probably one of the hardest chemo drugs I’ll face.

I’m aware I haven’t posted much lately so I have quite a lot to tell you.. Re treatment, results and next steps… Sorry I’ve been quiet I’ve had my head down trying to concentrate on me and getting through this. So, an update where shall I begin…

Side effects of Taxotere … The worst one… Is the Neuropathy, I’ve linked this to explain the symptoms.. But basically it’s a permanent pins and needles/numbness in my fingers and toes.. My right hand and foot are the worst.. So much so that that it’s caused me to be Even more clumsy than I normally am.. I’ve bashed all the finger nails on my hands, so much so that All the nails on my right hand have fallen off.. Horrible!!! So Neropathy… Proper PANTS!! The prof tells me that is should ease post treatment so I’m really hoping so as I, thoroughly fed up of it.

Hair loss… Well this ones I’m pretty happy with actually… I have done the Paxman cooling cap here and I have to say I’m IMMENSELY impressed, my hair has thinned but I’ve still go a full head of hair, no bald spots and it has made such a difference!! I don’t feel like chemo girl.. No one is staring at me, I don’t get the sympathetic “ahh bless she’s having chemo” looks… It’s meant an immense about to me, I now don’t have to start all over again trying to grow my hair back…. My HUGE thanks here go to the Weston Park Hospital Charity who help to provide funding to these caps… Thankyou x

Other side effects… Well there’s the side effects from the steroids.. I hate hate hate these! I have to take them for 3 days around my chemo delivery day and have it intravenously on the day too… It’s Hateful stuff. Makes me very Hot, flushes, massively grumpy, angry, mood swings (sorry Mum &Dad) and had given me a round face and ridiculous fat appetite..serious diet starting soon! As for the other effects these follow the chemo norm.. Very tired, sick for the first week, weak.. Loss of concentration, forget what you are saying and lately chemo brain which I alike to baby brain… Scattered!

Ok… Crap side effects aside…time to officially share some good news… In Decemeber I had scans to See how it was going and if chemo was working… Good news I can still barely bring myself to believe… The 3 tumours in my lung are no longer showing.. So to my understanding have for now disappeared, and the 2 left in my liver are extremely small… So for now Fabulous news!!

This leads me nicely onto..what next… Well after treatment tomorrow I will go for a CT scan of everything in the next couple of weeks to give us a Benchmark to check against over the coming months, I’ll then be scanned every 3 months so see if the chemo is still working in my system and holding the progression of my diesease, this means no new tumours and the 2 in the liver don’t grow. I will continue my Denusumab injections to strengthen my bones and I will go back on the Faslodex injections… Oh poo!! These hurt… Must be done though.

So that begins me uptodate..and I thank everyone for all their constant support and well wishes.. 😘😘

Bring on tomorrow and starting my recovery….time to try and start enjoying things again

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Man down

I write my blog today from my bed!!! Yes me !!! In bed during the day!!! TOTALLY unheard of… But today I give up I’m just Man Down 😦

This Chemo is rather kicking my ass this time it has to be said, I’ve hit day 3/4 &5 which remembering my last dance with chemo were the worst days.. However I do think so far Taxotere (the chemo drug I’m on this time) versus FEC ( the 3 drugs I had last time) is Far Far worse. To be expected though, stronger drug stronger dose.. But I have to admit the last couple of days are proving a challenge to my normal get up and go.

Symtoms are pretty poo… There’s quite a few.. (I write these for fellow patients so you can see what’s coming) …Are you sitting comfortably?

very sore mouth, feels like I’ve eaten 10tonne of salt and burnt all my mouth, and my jaw bones ache.
Wicked stomach cramps! Keeping me awake most of the night.
Constipation
Tiredness
Inability to concentrate
Headache
Pins and needles in my right hand.. Permanently so skin feels sore.
Weird nerve like shooting pains.. Only occasional.
Nausea… This ones great! Constant stomach churny feel… Keep taking the tablets Jane 😦

But on the upside… At least if it’s hitting my body this hard it should also be hitting The mini Berts too!

Desperately hoping that tomorrow shows a marked improvement… Feeling very frustrated as I’ve too much to do, work, house, dog walking (which is lovely in these fresh winter days). I know you will all tell me to “take it easy”… But I swear if one more person says this I may scream! 😜 I don’t Do taking it easy.. It’s like caging an animal.. It’s driving me nuts!!

House is progressing well, thorough the extreme kindness and dedication of some wonderful people..
Jon & Steve Monaghan ( for organising a Fabulous plumber and tiler to get my en suite ready for me).. It looks amazing I’m so happy with it, like my own little boutique hotel room!
Rob Hill, for taking a huge weight off my shoulders and sorting out the drains.. Wow this is such a relief and nice to know he has it in hand and I don’t have to worry xxx thanks Rob
Mark Schofield, plasterer and render extraordinaire… For being my knight in shining armour and sorting out plastering nightmares where people keep letting me down.

THANKYOU all so much I am truly truly grateful and humbled for all your kind efforts for me x

… That’s all for now as I need a little nap.. Hoping when I wake the nausea will have worn off.

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“Here we go again, on my own” (white snake lyrics )

It’s been a long time since my last “confession”.. Post apologies everyone I have been ridiculously busy building my own home… Literally.

For those who don’t know me I’ll begin today with a quick recap, but ultimately today’s post is to give an update to my friends and family on my current health and treatment.

2011 – diagnosed stage 2 breast cancer
2011 got married
2012 – IVF
2012- chemo
2012 -bought a bungalow to demolish and full a life’s dream of building my own home and try and put cancer behind me
2013 – fell down broke my hip – total hip replacement
2013 – found out hip was week due to a tumour… Breast cancer had Metastasised to my bones… Stage 4 cancer (Incurable)

Which brings 2014… Big year this year.

Demolished bungalow, began building… Separated from husband, getting divorced..
started Hormone treatment for cancer, failed, stared clinical trial failed…

Next Friday.. I will start Chemotherapy again.

So… here we go again.. This time on my own.. 😥… Hopefully with the help of my family and friends… But certainly if you’d have asked me 3 years ago where I’d be right now this is Not what I had in mind!!

The details… I will go for my first Chemo next Friday. And current assumption 6 lots once every 3 weeks as before.. I will loose my hair AGAIN!! My chemo this time is Taxotere, it will be given intravenously and I’ll most likely require steroids with it too… Pretty scared that this will make me look bloated.

How to I feel ?…. PISSED OFF!!!, scared.. Chemo has come 12 months early than I was anticipating.. Scared that this means my life is shorter. Upset that I will loose my hair again.. It’s really shit loosing your hair I won’t lie.

I can write no more to you all today as I now can’t see the screen for tears… But I promise I’ll be back soon… the Thorpey MOJO has been challenged this week and I need a few days to get back on track…

be right back peeps xxxx

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A call for new lingerie and self tanning!!

I write my blog tonight after a full day of back and forth to Weston Park Hospital, after more blood tests, ECG and the results of my CT I can confirm I have, thankfully, been accepted onto the Pfizer Palomo 3 clinical trial.

I have been given the drug, and now start taking a daily tablet… Here’s hoping I got the real test drug and not the placebo! .. Also today I’ve had for the first time my Faslodex injections… Which gave rise to tonight title for the blog ( thankyou to Denise! For a great title idea!)… Every 4 weeks I will go for 3 injections, my normal denusumab for my bones.. And 2 new ones.. Faslodex.. Administered into my BUM!! It’s an intra muscular injection.. Which I have to say was quite painful!.. Well my knuckles went white gripping the bed lets put it that way!
However it means I get to bare both butt cheeks every 4 weeks to 2 people! 😳 so it’s time to go shopping for New knickers.. And a new requirement to self tan my Ass!!

So fingers crossed I got the real drug (2/3 get it ) and now to look forwards and hope

Thankyou to everyone for their kind wishes today xxxx

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A set back..

Well in my last update I mentioned they were MRI’ing an anomalie in my liver that we were hoping was a blood vessel… I’m afraid this was not the case and we are now fairly certain that it’s a cancerous lesion, and as it had grown from 5mm to 10mm this indicates that my body has become accustomed to Letrozole which means that it’s effectiveness is no longer going to keep my cancer at bay… So I had a few options.. And I’ve made a decision to apply to join a clinical trial.

The trial will hopefully start in 2 weeks, it’s the Paloma 3 trial with Faslodex and a new drug which we hope will extend the longevity of the Faslodex so that my body doesn’t become accustomed too quickly.. The But in this is that I may get whats called the Placebo.. So the sugar pill and not the real drug.. There’s a 2 in 3 chance of me getting the new drug… Phase 1 and 2 trials of the drug have apparently been promising.. So it’s something I have to try.

1st step is for me to be assessed to see if they will accept me on the trial, this involves scans and blood tests and signing a contract, if accepted I’ll start in 2 weeks. The Faslodex is, unfortunately, given as injections.. In my Bum!!!.. Which anyone who knows me will be a challenge as I’m very needle phobic… But it’s something I’ll have to try to hopefully prolong my life.

There will be side effects, some similar to chemo apparently… I’m hoping no hair loss, but I need to discuss with the team next week. ..

How am I feeling??… Pretty shocked and disappointed.. I guess I thought I’d have longer on the first drug… But I refuse to wallow and feel sorry for myself..so after much googling last night and the early hours of the morning when I couldn’t sleep it’s time to kick up a gear once more and start fighting again.

Keep your fingers crossed people.. I need to get on this trial..and I need to be getting the real drug not the placebo…

Not sure what else to write tonight… Need a little more time for this to sink in…. I’m ok… Normal service will resume shortly 🙂

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Phew!

Ok so had some little tit bits of good news recently.. I had another scan of my liver last week to see if the ‘anomalie’ that showed in my liver on the last scan was growing or not.. And the results are in …. It’s still unclear what it is for certain, however whatever it is it’s shrunk.. Which is fabulous news as this means that I can remain on the Letrozole tablets for now as they appear to be doing what they should.. So.. Lung tumours are stable and liver anomalie is smaller… Time for a little dance! 💃

The other good news is that my tumour marker levels have dropped… Tumour Markers?? I hear you say.. Well yes that’s pretty much what I said.. As these little thing have never come up in conversation before!
Google to the rescue… tumour markers.. And I find out that increased levels of these markers can indicate some cancers.. Now I was aware about this for prostrate cancer etc but not for breast cancer.. My levels have dropped from 47 in December 2013 to 32 now, March.. Which apparently is within the ‘normal’ range… So whilst this is fabulous news I mustn’t get too excited as it’s only a possible indication… But I’ll take it.. Good news is good news.

House update.. Demolition has begun.. And my life’s about to get mega mega busy.. So bear with me on the updates xx

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