Categories
Cancer

[CANCER] Another Update and Some Smaller Charities for those #BusyLivingWithMets

X Ray of Bex Lewis taken in New Zealand, April 2020
X Ray of Bex Lewis taken in New Zealand, April 2020

So, it’s been over a week since I got my new diagnosis (I still don’t know how big/bad it is), and by now I should have had a CT guided biopsy, and a CT scan with contrast … COVID is playing havoc with appointments, so it’s going to quite a bit longer before I know exactly what’s going on.

  • I now have a COVID swab test on 14th July (don’t they look just lovely, not had one before)
  • I will have both the CT scans at the same time on 16th July – very early start (but not a starving op :-)), and I have to lie in a hospital bed for 4-5 hours afterwards before they’ll let me get home. The CT guided biopsy will be under local anaesthetic (no sedation), as I think my other one was, to my chest wall (sternum area). Apparently it’s an ‘aerosol generating procedure‘, so with COVID this has made things MUCH more complicated, and I’ll be operated on by a team in a full hazmat outfit, extra cleaning, and all sorts… unlike last time when it was nurses/surgeon in their normal dress!
  • So clearly I am not getting my results back on 15th July, and it’s thought that 22nd July will be too early, so looks like results on 29th July (which was supposed to be my occupational health meeting, so I guess that’s moving too). At present I’m only signed off til 17th July – thankful that I’ve been in my job long enough to get up to 6 months paid sick leave if necessary… so that’s likely to extend. *And this ongoing worry is exhausting.
  • I won’t be going into the hospital for treatment on 20th, as he said Herceptin and Perjeta are clearly not working, so once we have the results from these CT scans, Laurel Suite at Stepping Hill will fit me back in to start the new treatment… if the tumour is HER2+ then probably kadcyla (every 3 weeks).

Pain Management

We’ve spent most of this week trying to get my pain under control – apparently it’s ‘complex pain’ (of course it is), first we tried the morphine/ibuprofen/paracetamol route, but it didn’t seem to do a lot … so we’re now onto pregabalin (originally a drug for epilepsy) which should help manage the nerve endings that are firing off all over my scar site. Making me a bit droopy and slow, but it seems to be making a difference (even if it’s not all gone). I can’t believe how fast the week has gone – lots of sleep (sometimes attempted sleep), lots of messages, parcels, gifts from people to help buy a new bed/laptop/mortgage – and just help in some way :-). It feels very unBritish to accept it, but I am trying to just say THANK YOU very much – everything means such a lot! I have been told to check out where I am financially in case of medical retirement – so I’m trying to do that, but it’s doesn’t seem straightforward, but hoping still have time (years) to sort!

Someone asked if I still have secondaries, or if it’s now ‘tertiary’ – it’s still secondaries – as soon as the cells leave the site of origin and start to spread around the body, they can form secondary sites of tumours – and that is what we are now dealing with… and hopefully will be for some time yet, although I have also been watching friends decide that it’s the right time to stop treatment in balancing length versus quality of life.

Cancer, COVID and Death

If you haven’t seen Panorama this week – worth a watch – they’ve chosen to build it around Kelly’s story (more on #YouMeBigC).. and two people from within the advocacy group have died recently, watched the funeral of Elaine this morning on Obitus, and the walk-out tune was:

I also heard today another good friend has gone, and waiting to hear when Fi has died – she did a lovely goodbye video – it’s the down side of making friends with (so many) people on social media who are in similar situation (which otherwise has so many upsides)…. and I wish more people would read ‘With the End in Mind‘ to make death not just something we have to think about when we’re dealing with difficult/imminent realities… and COVID19 has encouraged some thought into this:

‘In the Netherlands, it is fairly unusual for a person not to have an end-of-life plan registered with their doctor. In the UK, on the other hand, only 4% of us do.’

Support Organisations

Anyway, if you’re looking for charities that make a difference to those of us with secondaries:

  • METUP-UK is a small advocacy organisation fighting for better data, better drug access policies, more research into secondary treatments, more consideration of secondary cancers (within all the pink), improvements in quality of life, and education for those who are at risk. *Related T-Shirt
  • Jo also set up ABCD – and provides excellent diagrams for ‘red flags’ for identifying secondaries, as well as other information.
  • Stage 4 Deserves More offers support packs for women diagnosed with secondary breast cancer in the UK
  • Make 2nds Count raising awareness, funding research and supporting families
  • Secondary1st – seeking a cure for secondary breast cancer (it will affect around 30% of those with primary cancers, and is incurable)

A couple of smaller charities that have a wider remit:

  • Climbing Out (I had a place on this for this week :-() – about rebuilding confidence through 5 day outdoor courses with lifelong chronic illness.
  • ABCD Exercise Retreat (I did this a couple of years ago, and my group of friends from that is powerfully supportive). *Can fund here.

And here are the charities that have helped throughout:

I’ll probably think of others, but I’m tired now – it’s been a long day – and I’ve not even been working (and I’ve not even got through all my FB messages)!

Categories
Cancer

[CANCER] Fear of the known? Chemotherapy (again) #WhatCancerLooksLike #BreastCancer

Well, it’s not fear of the known, more like – as Kaz says ‘The fact is you must face the known this time around with a gut wrenching feeling in your stomach, before the drugs have even had the chance to do that for you. It’s not exciting and it’s not something I had planned on doing again.’ *Oh, and check out #TrueCancerBodies in response to campaigns such as #BosomBuddies.

I’ve had a lovely weekend, keeping myself occupied, meeting a friend to talk research:

 

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Made it up north (research collaboration en route to a wedding tomorrow) with Jayne .. #busylivingwithmets

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Attending a wedding that has slotted in nicely in between the treatments (yes, I still feel nauseas and overtired, my back is sore, but I could stay in bed and feel sorry for myself, or get out there, and sleep a lot!):

 

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It’s not #waitingroomfeet today – it’s Suzie and Gareth’s wedding 🙂

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And my cousin has come up to come with me to the hospital today/tomorrow, and we (well, I passed things mostly) caught the little bits of painting that needed doing in the hall, and put up about 85% of the things that needed to go up (I have about half my neighbours toolshed in the house at the moment):

 

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We have been busy.. esp @findmystyle! #homedecorating #pictures

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But, having hope not to be back in the chemo chair, here we are. This morning I have just taken my steroids (a friend calls these Dexy’s Midnight Runners, as there’s very little sleep to be had with these):

The hospital called this morning and asked me to go in at 1pm, rather than 2pm. So far as I know today is bloods, Herceptin (ensuring I don’t react to this drug – can damage the heart), cold cap fitting ready for tomorrow (yes, I know I said I wasn’t going to use it again, but it worked so well), and picking up a long-term sick-note (I’m expecting to work as/when I feel OK, thankfully I can work from home, and I’ve got things I want to be doing if I’m well enough). Tomorrow I have to be in by 9am, ready for the docetaxel and the perjeta, and then am watched til the end of the day to make sure I don’t react to the drugs. My cousin is with me til tomorrow lunchtime, then the lovely Suzanne is coming for the afternoon and taking me home – I do find the big silver lining of cancer treatment is the time I can sit and chat to friends – and I’ve got to know my neighbours very well as they look out for me!

We’ll have to wait and see how this drug affects me – I had paclitaxel last time – a gentler version of the docetaxel I’m having this time (although I’m hoping to have a reduced dose). It’s the combination of the drugs that I need, rather than the chemotherapy itself, so a bit frustrating to be landed with the heavyweight drugs (though hoping for a reduce dose) – once the steroid high wears off after Wednesday, I’m expecting to crash out (Netflix, here we come, if I’ve got enough brain capacity to focus)… side effects likely to include feeling like been hit by a bus (fatigue/muscle pain), lack of resistance to infection (though I’ll be having those lovely stomach booster self-administered shots) , mouth shot to pieces/lose taste buds (think about what to eat), hair falling out (hopefully cold cap will avoid for head, but leaves open to e.g. drippy nose, ear infections, etc.), hoping to avoid the stomach upset but we’ll see! People seem to say the nadir is 7 days afterwards, and, remember, I have tickets to Hamilton for 29th April!!!!

Expectation is that treatment will continue with:

  • Drug combination: 7 May (after bank hols), 28 May (after bank hols), 17 June.
  • When the docetaxel is finished, I start denosumab every 6 weeks to strengthen bones
  • I continue with the Herceptin and Perjeta every 3 weeks via infusion.
    This, and the denosumab, will continue ‘for the forseeable’ (we hope for a very long time, as the reason I’d be taken off is that the tumours have grown and therefore the drugs have stopped working – tumours shrunk or stable are what we hope for – otherwise we start a game of ‘whack-a-mole’ with any new tumours)
  • I’ll be sent for an appointment to talk oophorectomy around halfway through the chemo, likely to happen around 2 months post-chemo
  • I’ll have regular scans – I’ve lost track of how often, I think around every 3 months (not sure if those are full body scans, MRI scans, CT scans, DEXA scans, or a mix of all those, and probably heart scans too).

My gym have given me 3 months complementary membership, til mid July, so I can go and attend odds/ends of classes on, probably ‘the good week’ (no swimming because of infection risk), and I have nearly the whole of August booked off work for annual leave – culminating in Greenbelt (no, I’m not camping!) – I’m seeing if I have enough £ to do my bathroom (tell you, planning house sorting gets you through all sorts)… and if anyone wants to come help with gardening feel free – otherwise just keep offering chats (online/offline) – just we have to be flexible! Looking forward to seeing Natalie Collins on Weds, then I think it’s crash out for the week! Thanks everyone for messages!!!!

Categories
Cancer

[CANCER] Event for ‘Younger Women’ with Secondaries with @BCCare #YoungerWomenTogether

When I wrote about how good the ‘Younger Women Together’ event for women with primary cancer (under 45) was, I never anticipated that I’d be back so soon for an event for younger women with secondaries (or metastatic cancer)! I am, however, very grateful for the fact that these events exist, because it just helps so much to be in a space with other women who are in the same situation to you.

Introductions//Thyroid Scan

I missed the introductions as I had an appointment at the Christie on the Friday morning. I had written in my diary that it was an ‘ultrasound for thyroid’, but hadn’t read the letter that also said that it was a ‘Fine Needle Aspiration’ (2 small needles into my thyroid/neck). The specialist said that he can’t see anything suspicious on my thyroid (2 are slightly larger, but not uncommon, but ‘because of your history, it’s best we check’ (how many times do we hear that?!). Anyway, got next appointment with the oncologist on 18th March, so should get results then.

Medical Update: Management of Secondary Breast Cancer in Younger Women

I joined the event as Dr Elena Takeuchi was showing some stats, and discussing the way that cases for younger women are managed with advance/secondary/metastatic breast cancer (concerns are often different than older women with breast cancer, especially around work, fertility, etc.).

There were a lot of stats/charts in this session, focusing on the fast-changing nature of the situation (and therefore the hope that is there for treatment, if not cure), with a big focus on individualised treatment, and the fact that there are still a lot of options.

I loved, and am a bit overwhelmed, by the number of people it takes to get us through (and in conversations afterwards, the patchiness of some of this provision – part of why I’m very grateful to be part of the Christie network)

‘Supportive Care’ is the name that some palliative care departments are calling themselves (because of the association with ‘end of life’ care)

Palliative Care

I think I enjoyed this session with Tracey Coleby the most over the weekend, despite being quite nervous about going – that it might be that focus on end of life care (or that’s what people in the group would ask questions on). It appears my notes will have likely come up at MDT’s that Tracey will have at been at over past few weeks!

Tracey talked about efforts made to rename palliative care (as supportive care), and that before too long, that too would become associated with end of life care, so it’s more about re-educating people that palliative does not necessarily mean end of life care (and hospice is not necessarily end of life either). End of life is a fairly small bit of the job.. it’s more about patient centred care and effective symptom control (some are Macmillan nurses – but that’s about who funds the post).

Described as a holistic approach, individualised care, advance care planning (not waiting for the end – e.g. in planning treatment, is travelling, etc. still important to you, so does that affect the type of treatment and it’s potential side effects), supporting a good quality of life… dealing with social, physical, financial, mental, etc. The expectation is that if side effects are managed to give a good quality of life, you’ll tolerate the treatments for longer, therefore a ‘better outcome’.

At the Christie, they’ve been working on a more collaborative approach to working, between the medical teams, nurses, and the community (e.g. GPs – although I went for my Zoladex injection 1 week/5 weeks after secondary diagnosis, and the GP system hadn’t flagged my new diagnosis up; this is particularly important because WE LOOK WELL, and GPs are not specialists, especially in metastatic cancer).

There’s a lot of emphasis on symptom control, trying to keep appointments together, because time is precious (although I had 7 appointments this past week, it did feel that calendars between the hospitals had been looked at – it’s a bit like the university calendar management – got to balance academic/student calendars – or in this case consultant/patient!); keeping on top of side-effects, etc so that there are less CRISIS interventions; and – if the patient is open to it – open and honest conversations about next steps/options.

There’s a question of standardisation of expertise/access around the country (it’s a bit of a postcode lottery – I’m not in a hurry to leave the area that the Christie covers!), so some people will get this as part of what their team provides or signposts to, and other patients will have to actively seek out palliative care teams and hospice visits (where inpatients and outpatients are typically kept separate – are options for daycare and complementary therapies). The key question palliative care teams ask is WHAT DOES THE CANCER STOP YOU DOING (and can they help you do it?)? Question of CONTROL. Look out for Secondary Days in Manchester.

We heard Paula’s story … Paula was originally given a very small handful of months to live, and had reached this state (TBH, a state I totally fear)…

but with help from the palliative care team, her pain was managed, she was given new drug options, and ‘got her life back’, travelled a lot, and survived about 8 more years.

When Tracey joined the Christie in 2008, just seemed to be a series of crisis points, and feels this is now much better managed – planning for both best and worst case scenarios, with a care plan in place at MDT before the patient comes in for the clinic (typical for surgery, less for other specialisms). Also trying to ensure that nurses are not there ONLY for bad news… can be involved from first primary diagnosis – don’t need to wait for pain/mets.

Trials are aways considered when there are changes in the tumour – note that for trials ironically need to be relatively well (to be able to withstand the treatment), and for the time delay, etc. It seems that belief impacts behaviour, pain – drains energy. Don’t assume that all symptoms are about decline, but can also signal an improvement.

About QUALITY OF LIFE – to be as well as you can be for as long as possible. It’s all very individual – try not to compare with others.

Exercise Session

This session was run by Kevin Kipling, and we talked about how cancer had affected our mobility and energy levels, plus the options that we are taking up (of course I mentioned Pokemon).

We looked at walking, cycling, and swimming (when not on chemo) as being the best aerobic activities, whilst weight-bearing exercise (own body, or supported weights) helps build bone strength (build up kg/reps gradually).

Consider using resistance bands as well as body weight, build HR gradually, and look at 150 minutes of exercise (about 30 mins a day – at a good heart rate – and yes, housework, etc counts), with around 2 resistance exercise sessions in there. Also flagged up that there are GP referral schemes such as PARIS.

Social Time

There was time before dinner to go to the Cloudwater Brewery (no, I don’t like beer, but I like trying new things), raising a glass to Angela, who only reached 41 before cancer took her :-(. After dinner, a handful of us headed out briefly, before returning to the hotel for 2-4-1 cocktails:

 

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Last few hours of 43 🙂 #busylivingwithmets #cocktails #birthday

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Clinical Research/Trials/New Treatments

After a good breakfast, it was time to join Dr Donna Graham in her talk on clinical trials…. very complex, but many many options, including for women with secondaries. She looks after all kinds of clinical trials for all kinds of different cancer – can affect treatment, risks/causes, prevention, screening, diagnosing or controlling symptoms. Today’s talk to be focused particularly on drug trials, and how they can make a difference.

A lot of research has (and is) done into biomarkers – such as Oestrogen positive or Herceptin receptive cancers, and now there’s a lot of research into genomes (and immunotherapy is quite a trendy research area too).

We started, unexpectedly, with the Bible (although this apparently quite common!), before popping along to James Lind/Scurvy, and Hanahan and Weinberg:

We looked at what is a clinical trial (aka, why can not everybody just be given this medication when it’s discovered?), and how it’s often ‘easier’ to block an overactive element than stimulate an underactive one.


The phases that clinical trials go through before they become standard medication (including mandatory trial on 2 x animal species before tested upon humans):

We see how it can take 20 years, and about $1 billion of investment (and lots of ‘failed’ research at further cost) before a drug can be registered for standard use – note that trials can be abandoned at any time by the trials companies (if you’re one of the rare people it was working for, can be difficult to get more drugs in that case):

And looked at the number of patients involved at each stage (e.g. the Optima trial I joined to see if chemotherapy would benefit is Phase 3, and the CORE trial I was originally offered for stereotactic radiotherapy was Phase 2/3)

If you’ve joined a trial, if it’s clear that it’s not working, or the side effects are intolerable, you’re not committed to sticking with it, and likely to be taken off it. Even once a drug is on the market, it will be subject to ‘post-market surveillance’.

To be eligible for a trial, you either need to be very well, or out of other treatment options (and therefore have little to lose on an unknown drug … there was definitely some people in this situation at the event :-(). In some ways it’s quite depressing to see that most increases are listed in months (e.g. 18 months), but that is considered a success (whereas a couple of weeks isn’t).

There are efforts to look at global recruitment and collaboration in order to get drugs to market faster (hopefully at less £). There are hundreds of trials happening at any one time, but in the USA last year there were maybe 15 oral drugs approved by the FDA (no idea on IV drugs), and that doesn’t mean automatic licensing in UK. A lot of drugs are currently approved by the EMA, in the UK drugs have to be approved by NICE (especially to be approved on the NHS, and only in certain situations – e.g. I need pertuzemub, but I can only have it with docetaxol chemotherapy (one of the nastiest), even though I don’t really need the chemo). Someone asked what is Brexit going to do, and of course NO ONE KNOWS – which is quite terrifying!

Some of the trials currently (or recently?) happening for secondary cancer: TULIP; PlasmaMatch; TARGET and AURORA.

Finding trials (as your oncologist may not necessarily be aware/offer you all options):

And in our region, there are active participants of ECMC. So here’s to good communication:

Adjusting/Adapting to a Life-Limiting Illness

I know I ‘look very well’, which most of the time I’m very grateful for, but sometimes it’s frustrating that people just expect you to be ‘back to normal’ when your head if quite scattered, and your body is going through so many more tests and treatments – which require you to be at home (very thankful for the way my house has progressed over the year), and a lot more time in bed, and everyone else’s life seems to continue. As there were other sessions on dealing with diagnosis with your children on at the same time, it was really helpful to be in a session with people who also don’t have any (sadly, most of whom want/ed children), and think about the challenges we face (and strategies for managing them), especially the responsibility/guilt we feel for those around us, and how we need them to help us get through (and how little support there is for those ‘PABC’ (People Affected by Cancer, but who don’t have cancer). Session was facilitated by Helen Miller from the psychiatry team at the Christie.

So I appreciated this from my colleague Jeff (and MMU for featuring me on #IWM19):

Other Services Available

We discussed the range of options available at Breast Cancer Care (including specialist secondary nurses, as many BCNs are much more familiar with primary cancers), and other places to go for support (I’m too old for quite a few of them):

Mindfulness

At the end, we risked nodding off, in a guided mindfulness session with Kelly Birtwell from Uni of Manchester.

Birthday Celebrations

Also last year, I had chemotherapy on my birthday, and was looking forward to a more fun celebration this year!


To be fair, I did have fun – and went out for some cocktails after the event:

 

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Found a few more friends #birthday #busylivingwithmets #cocktails #waiter

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and some food:

 

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Hot drink time then probs some sleep … lovely day #birthday #busylivingwithmets

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And so lovely to be remembered by so many people:

Categories
Cancer

[CANCER] Talking Radiotherapy Options @TheChristieNHS

After having had my zoladex at the GPs, I headed off to The Christie, ready to talk radiotherapy with Dr Misra, and whether I want to be entered into the CORE trial – I will be having radiotherapy either way, but it may be standard treatment, or stereotactic ablative radiotherapy (which seems to be used quite widely in the rest of the world, but the NHS doesn’t routinely fund it). I am eligible for the trial because I have less than three metastatic tumours (just one), of less than 3cm – in other words, I have oligometastatic tumours.

I have another appointment with Dr Misra next Tuesday to sign up for the trial, assuming I say yes, once I’ve read the 18 page consent form. If I say yes, the form then heads off to London, and the randomisation determines which kind of radiotherapy I get, and then the process starts.

He asked why I sighed when he asked how I was doing – well, no one wants more cancer treatment do they?

Standard Radiotherapy

This could start within a couple of weeks, with a CT planning scan probably within a week of being assigned standard radiotherapy. Standard dose is 10-15 treatments, typically 10, and this would likely happen before any chemotherapy.

Side effects (which is the bit I really care about) are mostly local, including temporary stiffening and tenderness around the treatment area (which I think is T11, not T10 as had originally been mentioned); redness on the treated site, and nausea (which they would seek to keep on top of with medication). The fatigue which I am particularly nervous about (as that is still impacting), but the expectation is that it shouldn’t be as severe, because a smaller area is being treated.

Late effects can either weaken the bones and lead to a possibility of fracture, or (more commonly) harden the bones and reduce damage.

Stereotactic Radiotherapy

There may be a waiting list for this to start, in which case, Dr Chittalia (my oncologist) would likely start the chemotherapy, as we want to get going with the treatment (although as I’m still on exemastane and zoladex, which is what the tumour appears to have been reacting to, it’s not as urgent as it could be) and and the radiotherapy would be fitted in at an appropriate time in the midst of treatment. I’ll see Dr C next Monday.

The potential side effects for this are largely the same as standard radiotherapy, with an increased risk of fractures in the long term, because it has focused so tightly on one area. It’s often ‘sold’ as ‘without nausea’, but if the beam ends up being sent through the front of the body, it can still cause nausea (joy).

What does it mean for the gym?

I’ve been building up my time at the gym, but I’ve been a little confused about what’s OK to do, and what’s not OK. For now, they want me to be cautious, but not freaked out. Once treatment is over, can be reassessed, so is not necessarily for ever but:

  • Nothing unsupported
  • Machine weights with max 10kg – and keeping an eye on what body doing – should be OK
  • Cycling/swimming are good
  • NO LIFTING AT ALL

Oh, and I thought this clip was excellent: