Perhaps, perhaps, perhaps….

I had the treatment of group B of these women. Looks like I might be lucky….That said, trial was for regular breast cancer, early diagnosis and I was late and this was not trialled for my rarer form of inflammatory breast cancer

However….The Texas Programme for Inflammatory Breast Cancer issued this (rather lengthy) statement, which I have shortened.

Those of you who are active on social media may have noticed that this week, Genentech announced that their ongoing phase 3 trial of Pertuzumab (Perjeta) along with Trastuzumab (Herceptin) and chemotherapy has reached its primary endpoint (https://www.gene.com/…/phase-iii-aphinity-study-shows-genen…). The press release notes that the results would be shared at a major medical conference this year. We’d like to proactively answer some questions about the impact of these results on IBC care with this post.

Trial design:
Patient population: Early breast cancer patients (IBC excluded) with HER2+ tumors, removed by surgery and who are candidates for adjuvant chemotherapy with a Trastuzumab-containing regimen.

Study arms: Physicians choice of 3 acceptable standard types of chemotherapy along with Trastuzumab for everyone for 6-8 cycles, followed by Trastuzumab to complete 1 year. 50% of patients received Pertuzumab in addition to this for the whole year and the rest received a placebo.

Take-home for IBC patients: All we know from the press-release so far is that the result is positive, but we don’t know the details. These data have only a limited impact on how we approach IBC care due to the fact that the current standard of care for IBC is neoadjuvant (pre-surgical) chemotherapy. The FDA approval label for Pertuzumab specifically includes IBC and we routinely use Pertuzumab for our HER2+ IBC patients.

Inflammatory breast cancer is treated with neoadjuvant chemotherapy – chemo first, surgery/radiotherapy afterwards….

So…perhaps, perhaps, perhaps (do click to hear Doris!)

 

Taking my own medicine

Having spent the past couple of weeks telling others to focus on what they can do rather than what they have lost, I find myself backed into a corner and having to look at my own situation:

I can:

• Drive again
• Detach (or semi-detach) from hospital
• Potter in my garden
• Sit in the sunshine
• Enjoy company
• Discover what makes (the new me) happy
• Travel (sensibly)
• Have long and funky fingernails
• Brush my hair
• Get through my GoodReads target for this year (as you can see 59 read, to date, from a target of 75)
• dance in the light of the moon, as if nobody is watching, as if everybody is watching!

but I am also thinking I can:

• Forget what I am up against and do too much
• Take on the world
• Say yes to anything (maybe these first 3 are the same?)
• Reduce medication
• Travel (foolishly….?)

…but sadly I can’t, but it’s been fun trying! AND – how terrible is sleeping from 10pm one night to 5pm the next day?

I am trying not to fret about the stuff I have lost and find other ways to do things or find new things to embrace

…

I have 3 goals (that I consider do-able) on the horizon for this year.

1. I originally had the first on my 1991 “to do” list
2. The second is an unexpected going back. A gathering forged from tragedy
3. The third has been on my “forever” wishlist

and also daring to dream about 2017. Not sharing yet. Will if I accomplish.

 

 

I’ve lost that fuzzy feeling

1977

It’s one thing coming off herceptin, heart monitoring, scans, blood tests and facing cancer but quite another deal climbing down from a very high anti-depressant dose. Even my gentle downward stumble seems to be turning me into yet another person I haven’t been before.

I don’t have to do this but somehow thought I was ready to engage with some of the pain. I am ready. Guess I had just forgotten how much pain I had (that was secreting itself behind the SSRI influence) and what pain is like.

I have seen my GP and know I can take it at my own pace or, indeed, not do it all. For the time being, 6 weeks in, I have re-calibrated my gradient for reduction. Waking up and smelling the coffee isn’t quite what I had anticipated and I am so missing my quirky, irreverent, spirited, intelligent, argumentative, tenacious, fierce, talkative, difficult, magnetic and so talented…yet dead, friend. The endless silence she leaves in her wake is hitting me in waves, some days lapping…some days tidal.

But I’m OK..I need to experience this…and overwhelming all of this is the delight and roars of laughter I can only hear in my head (that we would have shared) if she had seen my fake nails, nail art, tattooed eyebrows and tiddly pom mules!

Her “poem book”

Tiddly pom mules

 

Save

Kicked into the long grass doing my “stuff”

Another decision making hiatus, another step forward, and, as a bonus, another new word. I am a “neophyte” that is. if I have understood the word correctly – converting to my own lay medical approach of dealing with metastatic cancer. I have stopped treatment.

Life is short and I am going to go my own way (not sure why this is all starting to sound a bit Fleetwood Mac) through it and quit being medicalised. I have reached a point, at last, when I feel my judgement is sound and I am not being controlled. I no longer want to be a slave to the hospital, all its sub-text and endless testing (not forgetting the permanent incumbent worry). I have decided to consider myself “better” and plan to “live” accordingly.

• Yes…I have thought about it…(fancy…)
• Yes…I know what I am doing
• Yes…I have discussed with my oncologist
• Yes…I have discussed with my family
• and no…I don’t need further advice

I have now got the hang of this going solo lark. I make my own choices based on what I consider to be important. Finally I am finding out what I do consider to be important; what makes me happy and what catalysts make me spiral downwards. So…that’s the plan.

• Second Hand News
• Go Your Own Way

 

Should know better

Echo results…blood tests…herceptin…eye problems…insurance negotiations…driving license re-application….oncology…

AND what do I do? Act my age? Be sensible? ….n’ah…what do I do? Without consulting/talking to anyone whose advice might be useful. I get my eyebrows (which vanished..never to return, from chemo) tattooed. Or, in more age-appropriate language. I have had microblading.

Whilst the shape is OK (or is it?)…they are very dark…I gather this will “soften” but I currently feel defined by my eyebrows. Unsure what to do, other than act surprised! Should I….

• Disregard aftercare advice and see what happens?
• Wait for 2nd appointment and get them broadened? add grey? re-shaped?
• Take to my bed/garden/the hermit-life?
• Grow my fringe?
• Buy better concealer?
• Stop being so vain?
• Botox my lips to shift the focus?
• Wonder about rain damage
• or blame my mother, she did tell me “that if the wind changed I would forever remain with THAT face” and it was BREXIT day after all…(so maybe Boris’ or Nigel’s fault)

…and wonder why someone of my age was so compliant when the “technician” was not the young beautifully browed  beauty I had imagined (after my NARS experience). Instead someone with eyebrows I visibly balked at (so far as I was able, without my glasses on) and there’s the rub…

 

 

To tox or not to tox

Fast forwarding through dentist, diabetic checks, scans, herceptin, numerous telephone consultations and a fabulous double dose of both Simon Schama & my American family… I have been fully immersed in  The Quest for the Cures – fascinating stuff (albeit 9 hours of it on YouTube). It looks at our lifestyle and eating habits, sugar and acids particularly, and their role in the proliferation of cancer. This is examined along with the effects of the treatments were are being offered.

To put this in context, I am strongly in the evidence-based medicine corner…almost nailed to it. However amid this (rather jarring) American proselytising documentary I am feeling that there is something to hear and heed seriously about our heavy handed treatment of cancer. Instead of bombing the immune system with chemotherapy and radiotherapy, maybe we should be boosting the immune system and de-toxing. There are (inevitably glossy, shiny, white-toothed smiley American) people demonstrating how changing their habits have”cured” them. I take this with a winnebego-load of salt but something is resonating loudly here.

I have already done the bombing with chemo and surgery so am unsure how I can or could go with the programme. But, whilst I have already long pondered the decision of refusing mammograms and further chemotherapy I continue to look at the options.

I now have 6 hours of  Cancer: The Emperor of All Maladies to watch (it is available free online in US and DVD in UK)…As “they” say knowledge is power

 

The Ant-Man Cometh

I appear to have slumped back into my “Plagues of Egypt” period. Ants are attempting a pincer movement in my kitchen (worktops, cupboards, floor, bin) and my counter-offensive is proving useless. I have called for backup but apparently that can only be provided once the ants are identified…only garden ants or pharaoh ants can be “resolved” by pest control.

Whilst I was struggling with identification issues a friend knowledgeably remarked that the pharaoh variety sported headresses and sandals. I don’t have them. However the ant-man cometh and I am relying on the fact that:

• he has better eyesight than me
• I have the common or garden variety of ant
• he has better seek and destroy know-how than I do.

Identification is the buzz word of the week here. Identifying my medical “problem” and identifying myself. It appears that the hospital departments I contact do not have any record of me. I am wondering if this works like unsolved crimes. If I don’t exist then I do not need diagnosis or possible expensive treatment or monitoring and hospital “success rates” improve. My ECG results are..who knows where? My neurology results (from my hospital stay) are…who knows where?…and my echo results seem to exist only when I am physically in that hospital department. The chink of light is that my full set of CT scans are clear (I say clear in the sense that nothing new has popped up and that what is there is being kept at a standstill by the herceptin).

I am trying to see this as positive. If I don’t exist then I don’t have any medical problems, therefore travel insurance and driving need not be an issue. But it is never going to be that simple.

 

Back in my virtual world

Just over 5 days without an internet connection has proved challenging, irritating, expensive and a reminder of how life was, not that long ago. But, as my invidious disease, former “friends” and ex-husband have taught me…there is no looking back. Eyes forward and get on with it (at least I knew this communication issue was finite and I could always find a wi-fi or 4G spot if needed!)

In the meantime the hospital letters have been pouring in after a brief hiatus. Herceptin is continuing after an obstacle race with my echo results. Next week I embark on my 5 day ECG. I am still unclear how this works. I understand that a mechanism the size of a mobile phone will be fitted and can be attached to my belt or go in my pocket I have neither but am ignoring that for the time being. Just imagining that I might be offered a Guantanamo one size jumpsuit with pockets and belt for the experience but expect I will have to work it out for myself (gym will be interesting!). On day 5 of this, I have been called for a mega-set of CT scans. I imagine I can’t do this with the ECG stuff in place. (It says 5 day ECG but clinic is every Tuesday so either it is a 7 day ECG or it will stop working on day 5 in which case, problem solved). Suspect (given the weight of experience) that problem is not solved, and, after waiting a month for these “urgent” tests one of them needs changing…but which one?

 

Lunching to lounging

Who are these people? At every turn (and, it seems this lady is “for turning”….a lot), I seem to be encountering the phrase “your Christmas Day outfit and style” – this dilemma is not one I am familiar with, shop for or…to be perfectly honest, give undue consideration to…I am not a Christmas jumper kind of person and glitter/kitchens don’t really gel. For me, it is really a day that is barely one step up from a pyjama day but includes smoked salmon. That’s my take on it but my table will, naturally be heaving…Philip in the Cabbage Van has made his first visit – the prelude to Christmas order and he or another will be back midweek in one of their fruity or veggie vans…

Elvis and my other Deep South Christmas merchandise will be up and will, inevitably set the required tone…

But…Santa, LBD and glitz aside, health issues continue. More treatment on Monday when I imagine I will have to confront the newly found heart problems but am trying to let it ride and just keep taking the tablets. What a can of worms this cancer lark is. With eyes firmly on the future, not past it seems the treatment can cause the same survival issues as the disease…maybe it’s better (?) to die from heart problems than cancer…who knows and guess I won’t get to choose, but I can sit and ponder.

My friend was interred at Highgate Cemetery this week. She now has a foot (or some ash) in both of her much loved worlds – the Caribbean, where she will forever stalk its marine life and north London, her other home, near the Ladies’ Pond. It was another day of memory, poetry, tears, flowers and rum but inevitably some bass notes of black humour.

Poems all the more poignant as they were in her own handwriting…

and there goes my heart..breaking all over again…

 

Me and my breaking heart

It seems that payment is being exacted for my transatlantic blast by way of a series of breakages.

Dad fell and broke his hip and is doing his 86 year old best to re-mobilise. He is frustrated and fed up but is making amazing progress. Undoubtedly the thought of being held captive for much longer is firing his resolve!

And why only earth should I think there was just the one major problem to deal with? My heart seems to be malfunctioning as well. A routine echo (echocardiogram) hasn’t shown good results. I have to attend every 3 months for these checks in order to continue the use of herceptin (which is keeping the cancer at bay) but has known cardiac side-effects. It appears that marked changes are showing in my left ventricular function. Hopefully this can be treated with medication which will be assessed in another 3 months. If the increased medications don’t work then, I was told, it will be decided whether my life is more at risk from the treatment for the cancer or the cancer itself…Back to rolling the dice…

…and all the surrounding stress seems to be resulting in all manner of other breakages…

• Coffee pots x 2
• Teapots x 2
• Baking dishes x 1
• Wineglasses x 3
• Cat dishes x 3

but who’s counting?