Stage IV cancer? Incurable? Roll up, roll up, this thread is for you!

Absolutely no advice etc I’m afraid but just wanted to say I am listening, it’s a shitty situation and I so wish I could help 🤗
I read and lurk on t’other thread.
I have lost too many friends to this ghastly, relentless disease; my only hope is that my DD manages international cancer drug trials so one day things might change…. xx

Hi @mowly just joining over from the other thread. I'm just hoping you can get some answers to your emails and can sort out an earlier flight to get back to start the Cape. It must be frightening being so far away from home and feeling so utterly dreadful at the same time. I'm 3 and a half years living in Cancerland and still can't understand how communication from hospitals is so poor. I remember before my major surgery when I was so weak, a friend making suggestions about seeking a second opinion. It's hard to convey to others that you don't have any energy in reserve for admin or anything really.

By way of introduction for others not from the other thread, I have stage 3c ovarian cancer and was told early on that I'm incurable.

I’m not on the other thread but having had stage 4 breast cancer for 5 1/2 years, I thought I would join this one

in November of 2017, I found a lump on my rib underneath my rib. I had injured my rib a few months before horse riding and the lump was in the exact same place. I went to the GP to get it checked. He didn’t seem u dialysis worried but said he was referring me to get it checked. 7 weeks later, appointment day finally came!!I had gone to hospital on my own naively thinking that the lump was due to the rib injury. Never ever thinking that It was more sinister. I knew even before thee oncologist broke the news to me that something was wrong by the way the staff were acting. Pointing at the screen, getting me in for lots of X-rays etc. I was told that day that it was in both breasts and a few weeks later just as chemo was due to start, we found out that it had in fact spread to the spine and pelvis. I really thought my life was over. The plan for chemo was abandoned and I went straight onto letrezole, ibrance and zometa. I had 5 years on being stable but in January a routine scan showed that it had spread to the liver. I was taken off letrezole and ibrance and put on faslodex. More scans in May showed that the faslodex wasn’t working and the liver had got worse. Now on cape. Due scans imminently to see how this treatment is working. Absolutely dreading them.

Hey ladies, also joining from the lovely Cancer Support thread.

I was diagnosed with breast cancer last year and finished treatment in February. At the end of May I was sent to A&E with suspected appendicitis but the biopsy showed a very rare form of appendiceal cancer (which in itself is very rare) which has spread to my colon, ovaries and peritoneum and is therefore stage 4 and incurable. Totally unrelated to the breast cancer.

I'm due to have a stent fitted in my kidney on Tuesday to improve its function (tumour pressing on it) and the following week begin 6 months of Capox. If I am really lucky and the chemo shrinks or stabilises the tumours I may be eligible for surgery at a specialist centre in Basingstoke, but bearing mind my luck so far, I'm not holding my breath on that.

I'm 53 years old, a year older than my mum was when she died of a different cancer and knowing how fucking awful and damaging it is to lose a parent before you are grown up is the worst part of all of this for me. My sons are 14 and 18 and are the sweetest, loveliest boys who do not deserve to have their world blown apart. Nor does my lovely husband.

But I am trying very hard not to be angry or bitter. I'm not asking "why me", because why not me?

And I'm not going down the "fuck cancer" road either. For me it's not helpful to see it as some kind of third party invading my body with evil intent, it's just my own body getting confused. It's not something to "battle" or "fight", I just need to take my medicine, and hope for the best.

And I'm not falling apart (yet) but I'm not brave either and hate being told I am. When shit happens in life, what other actual choice do you have than putting one foot in front of the other?

Wishing you all the best.

Also happy to join. I find most (breast) cancer threads pretty upsetting as it tends to overwhelmingly be primary cancer patients who don't understand the whole added hell of a secondary diagnosis.

I was diagnosed with stage 3 breast cancer ten years ago at the age of 39. 8cm but only sign was slight "thickening" of skin which I could not detect as different from other breast tissue even once I knew it was there. Had mastectomy. Then FECT chemo and lost my hair. Then radiotherapy x 30. Developed sepsis and spent six weeks as an inpatient very ill.

Completed herceptin in 2015 but end of that year a chance scan for pain in right hip revealed a met in the left femur. NHS only offered to pin the femur and no chemo. Private offered revolutionary titanium prosthesis of femur and hip to remove the cancer, and then gold-standard pertuzumab and herceptin along with Paclitaxol, the latter for five months.

I've been on this regime now for seven years so am coming up to my ten year anniversary of primary breast cancer diagnosis and eight year anniversary of secondary diagnosis.

The surgery has disabled me and life as a significantly disabled person is challenging, plus I'm on ongoing chemo which will never stop.

My chemo nurse worked out I've had over 130 cycles of chemo. I've also had multiple surgeries, both ovaries removed resulting in instant surgical menopause, sepsis for six weeks, at least ten admissions to hospital and multiple rounds of anti biotics. I've had countless scans ; most be over 100 by now...Pet CTs, bone scans, dexa scans, MRI scans, and many more. Must have had hundreds of blood tests.

But...I'm stable and NED. There were 12 of us who went to Penny Brohn cancer centre in Bristol (marvellous) five years ago. We were all young secondary breast cancer patients. There are only 3 of us left now ; I've had some very good friends pass away and it is devastating. So I know how fortunate I am to be alive. No thanks at all to the NHS: they offered me no curative treatment at all and STILL refuse to pay for the gold standard drug of pertuzumab for me, even though it's worked for seven years and that all new patients get it. They won't apply the rule retrospectively. They also refused to pay for a portacath, insisting instead on a picc line. I've seen dozens of patients die from
Infected picc lines and Hickman lines. So overall, if i had stayed on the NHS I would definitely be dead and I know I am fortunate to have private coverage.

That's me. My motto; it's the same as Winston Churchill's : "keep b*ggering on".

Pleased to see your thread @mowly77 . I won’t stay here as so far I have only had two primary breast cancers and no secondary yet. I just popped by to say that my oncologist said as I got through FEC okay I didn’t need the blood test for Cape as it is related to the F drug. I’ve done 4 rounds on Cape, stopped for two extra weeks due to sore feet and am now back on it. It’s fine apart from fatigue and hand foot syndrome. Some get diarrhoea or nausea but I’ve been fine. I’m having it as prevention as I’m only stage 1 but they found some live cells after chemo so I qualified for 8 rounds. If it’s used for secondary cancer it’s an open ended course and the dose seems to be lower. I’m tall and fat so I’m on a monster dose of 5000mg daily. Most are on 1000 to 2000mg daily on the Xeloda FB page. That is quite useful apart from all the praying!
Hope your stay in the US has been positive and you get home in a timely manner to start Cape. Sending love to you and your little one.
Top x

Joining in :) I have stage 4 melanoma and immunotherapy has got rid of all the tumours which is absolutely incredible, but it still feels like the shittiest stick ever. Thanks for the thread

Hi Mowly I just popped in from the other thread to share my experience of Capecitabine. Bearing in mind I have had most of my colon removed it’s no surprise that my main symptom has been diarrhoea. It was manageable in my first two cycles but worsened in cycle 3 so I spent a few days in hospital with dehydration. For cycle 4 they reduced my dose and it was much more manageable again. I’ve also been more proactive with the drugs and I hit the Imodium hard at the first instance of diarrhoea. I was trying to hold out and take the minimum amount of drugs but I realise now this did not help.

My other symptom is hand and foot syndrome. Again this only appeared in cycle 3. My hands and feet are red and peeling but no blisters and they aren’t terribly sore. I moisturise regularly with cream containing urea and ensure my feet are dry and warm (it’s winter where I live). I can do gentle exercise.

Hi,

I've come over from the other thread. @mowly77 I know you're worried about the Cape, but apart from the foot syndrome, and feeling a tiny little bit tired, not fatigue, I actually feel fine, and if you did know me, you wouldnt have any idea I have this, it's not making me feel like horrifically tired after what I had last year. Just wanted to give you a more positive take on Capcitabine.

Im 43. got diagnosed with TNBC grade three last August. Had 12 weekly sessions of carbo and plax ( can never spell that). two week break, right side mastectomy. 5 weeks after, open heart surgery to remove benign tumour they found in there. Found a lump i thought was scaring in mastectomy site and got rediagnosed on 27th April and spread to liver 3rd May - i only finished chemo on 12th dec 2022!

Got told by oncologist I have 5 chemos I can try and thats it. No immunotherapy as the tests proved negative for that. So, got give a two year prognosis, and to go do the things I want to do.

In a way, I'm doing what someone else said, take the medicine and hope for the best and cross everything that it works, well, stops it growing or spreading further, although every time I have a scan they find another fucking surprise, so I had a Ct yesterday and have a few weeks wait for that but Im not stressing, what ever happens happens.

I do feel the same about blowing my kids world apart. they're 17, 15, 12 and 8. how are they going to deal with this? It's the worst thing they're going to have to go through and I wont be here to help. I've been doing all the practical stuff, like planning my funeral and swapping things into my husbands name that I can, all that stuff so that it does have to be thought about when Im to ill to do so.

Anyway, sorry for waffling, thats my story so far.

I’m 54, diagnosed in May this year with Primary Peritoneal Cancer Stage 4B.
lots of cancers metastasise to the peritoneum (lining of our organs), but very few start there 6/1000000

The cancer is usually diagnosed late because the symptoms are vague. It’s treated like ovarian cancer.

Prognosis is automatically poor - but with chemo and surgery some people do get a while. From what I can see on the Facebook group - most seem to get two years.

So currently just don’t know what to think. Doing the chemo, surgery looming, more chemo, maintenance drugs. No idea if it’ll be worth it. Lots of unpleasant ways for it to spread.

I guess this thread will be a good place just to be honest. Because I find you don’t get much of a chance to do that in real life.

Thankfully my children aren’t young, but we’ve been through a lot as a family, and I’m thoroughly resentful of having my third (child free) stage taken from me.

Can we please talk practical stuff a bit more?

I wanted to do the letter writing thing but I'm finding it almost impossible to write anything properly meaningful. Sadly we don't have wider family, but I do have some amazing friends and I want to ask them to take the boys out for dinner on special occasions and also just to be in their lives so they can share memories. My own mum died when I was 20 and then my dad two years later. I was an only child and my mums' family just didn't bother with me after she died and I think not having anyone to share and keep memories alive with was like another bereavement, do I really want to try and ensure that doesn't happen to my boys and that they have people around to tell them about me and to also remind them how much I loved them.

I've also started putting bills in DH's name and I've written down passwords to things.

All our family photos are in the cloud on Google photos and I pay for extra storage. Just wondering how we can transfer that too but also in a way which means our sons would also be able to take it over if and when DH also dies?

We made our wills a while back but I'm really concerned about what could happen if DH remarries. I absolutely want him to do that but am worried that could then jeopardise my sons' inheritance if DH doesn't bother to make a new will after he remarries. As far as I can tell the only option is to put my share of the house in tryst for my boys but if DH remarried, or even just wanted to move house, that would automatically dissolve the trust and he'd have to give the boys their share, which he wouldn't be able to afford to do. It's so frustrating.

Does anyone have a spreadsheet or list of things to sort?

Surely, if this oil saved lives, then no one would need to lose their life to cancer ever again 🤔

I believe you have to change your joint tenancy house ownership to tenants in common then set up the trust. I did it for around £250 with a local solicitor. Definitely seek advice

Can you link to it @mowly77 ?