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.
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!)
It is ten months since my last chemo treatment and I, only now, have enough hair from which I can squeeze water out , after a shower (a very small amount of water squeezed from a very small amount of hair)…Not sure if people were being “encouraging” by saying it only took about four months for your hair to come back, or whether I misinterpreted “hair” as being hair you would recognise as being a part of me! Either way, it’s back – very different…but back! However….not enough to grow a fringe (of any sort) yet…
It is “ology” week again this week….
First – Dermatology consultants today and their array of both clinical and phone photos of my arms. I hope that I may be able to put “skin” to bed as my leprosy has continued to improve since the toxic “pertuzumab” was stopped. I am reluctant to say that the problem has gone as I seem to have a different skin condition developing – on my shoulders – but maybe I won’t mention that. The more I mention, the more hospital appointments I gather…Think I have now (finally!) got a handle on the things I really need to follow through and those that can fester on the sidelines.
It was inevitable that taking a step out of the medical world for a week would result in a backlog, which is exactly how it’s been this week.
I am now 4+ weeks since my last pertuzumab dose and the “leprosy” is dwindling…I have, at last finished the endless months of antibiotics and am managing to finally cut back my antihistamine intake to roughly “normal” levels. (Bearing in mind, my “normal” is something very special!)
I had my first dose of Herceptin at home on Monday, and in fact, needn’t have worried about what to do with a nurse in the house for the two hours it took to administer. The nurse and I did paperwork, which took up most of the afternoon. There was some really interesting questions I had to answer whilst hooked up to the infusion. I ended up unsure whether the “questionnaire” was designed to provide light entertainment whilst you are treated or whether there was actually a medical purpose to this deep and bizarre probing (ranging from your toilet habits to your attitude to domestic pets). It was great to see community teams using i-pads where they have your clinical records, can access blood test results and the outer world as well as personally being able to sign off on what has been done, without having to store paper files in the house.
Then to oncology. The good news is that they are unworried about my re-sprouted right breast. It is apparently fine unless it bothers me and will (or was that “should”?) resolve in time. I quite like it, it is rather like a phantom breast that completely dispenses with the need for a prosthesis (if I hadn’t already ditched it, of course) and is rock hard and quite perky…One worry to cross off the list (temporarily at least).
The bad news is that I pushed for a prognosis. This came with endless conditions, ifs and buts and hopes of new treatments BUT was, in effect, exactly what I had thought from the outset. Ballpark looking like about 4 years. Next scans in October to keep a watch on internal organs and brain (and of course breast) which are the likeliest potential hot-spots.
GP and assorted therapists tomorrow…. and hey…I have even managed a few hours at work as well..and it’s only Wednesday.
Cycle 18 completed on Tuesday…18 rounds of treatment…18! That stage may now be over but unfortunately the “leprosy” has decided, at this point, to get legs..and has erupted all over both arms in a predictably last ditch attempt to find yet another way to lay me low. Especially painful when the default position is that I am already at the lowest point I have ever been.
If there is any good news to be found it is that I have now “left” the Day Treatment Unit, never to return.
The Oxford hospitals nonetheless remain my playground…Back again on Friday for draining of, what was my right breast, which has swollen up again with molten fury…with the inevitable associated anxiety.
Monday is back for another echocardiogram – will the hi-tech equipment spot a completely broken heart I wonder? Can it be functioning? Really?
Tomorrow is my last treatment of pertuzumab – which, I hope, means that the “leprosy” may be gone before too long…and the antihistamines…and the antibiotics…I guess it may take more than a month or so as I am as itchy as ever the day before the next 3 weekly dose. A small chink of possibility at least…
When I get to the DTU (Day Treatment Unit) in the morning, will I talk to/say goodbye to “my crowd” ? – the people who are often there for treatment at the same time as me. The people I always acknowledge but to whom I have rarely spoken for obvious reasons..or they seem obvious to me!
I was thinking that maybe when I leave the unit there might be a passing out ceremony of some sort, then I realised that of course there won’t be, as so many chemo patients make return visits, almost round trips…That doesn’t sound anything near bearable at the moment…
Wonder if most have to be rounded up and forced in for second/third/fourth….times…I don’t think I will be back willingly. I don’t want to go back at all.
I am not the same person I was when I last went to work – parts of my anatomy are gone forever whilst the omnipresent cancer continues to fester within me (at a low level, I am assuming). Both left and right sides of brain have given up the ghost and I struggle to make even a business-like phone call without dissolving, plus I am told that I am suffering from (the equivalent of) a double bereavement in terms of my emotional losses.
But hey…mustn’t grumble eh? Need to focus on what I can control, which currently seems very little – my own values, moral compass and a stumble forward into this very uncertain future perhaps. It isn’t hugely reassuring to discover that my points on the life stress scale seem to equate with”at risk of illness”…..Isn’t this how it all began? However there are, it seems, still hordes of stressful events lurking out there ready to trip me up. I thought things came in threes not in battalions.
The immediate issue facing me is going to work tomorrow. I can’t even remember what I used to wear for work, let alone what I did when I got there…but maybe it will come flooding back. I did always go in and empty the dishwasher first thing. Hey…I still know how to do that and suspect it will still be there ready to be emptied…and it may be a great “can do” thing to kick-start the working day.
Only one medical encounter again this week (which is the lowest count I seem to get) until I ramp back up to several per week again which will include my last pertuzumab treatment. That said I should probably make an appointment to have the area, previously known as right breast, drained again as it is swelling back up to bumper breast proportions. Not rushing as I don’t want to be constantly attending the hospital to be drained of effluent…Just wonder how big the swelling could possibly get and what might happen if I leave it to balloon….Hmmm….
I now have less than a week before I return to work….I feel nervous and vulnerable BUT that’s still the plan. Only one brush with anything medical this week and that’s not until Friday…So I started this week well, up early (after 4-5 hours of broken sleep) – did my “time” in the gym, had a shower, put the washing on….and then stopped…which is where I have been since.
I feel in a no-mans land, scared of my own shadow yet knowing at some point I need to make a move – whilst being alert to the fact that nowhere is safe from the shellfire anymore.
After my last treatment of pertuzumab on August 12th, I move over to a different team who will administer Herceptin at home. It has been an “interesting” handover. I had a very friendly phone call from someone who couldn’t seem to tell me where she was calling from “You’ve been referred to us” seemed to be the introduction. I have been referred to more places than I would like to think of in the past months…weeks…so her opener fell flat on me. I finally asked enough times to be told “Healthcare at Home” which immediately conjured up an idea that someone had dobbed me in for dementia, incontinence, mobility issues (or all of them!) before I remembered. Healthcare at Home are the organisation who will infuse the Herceptin. We had a very jolly chat about my prognosis (which somehow seemed better than thinking about the other services Healthcare at Home might dispense) and sorted out the date for my first treatment. I received my “Welcome Pack” today – so far…so good.
“Can anyone build his happiness on the unhappiness of another? Happiness is not in the delights of love, but in the spirit’s highest harmony. How could the spirit be appeased, if behind it stood a dishonourable, merciless, inhuman action? What kind of happiness would that be, based on the unhappiness of another?”
A very dear friend sent me this (small part of a speech Dostoevsky made about Pushkin), which seems very relevant for me at the moment. How can there be such surprise at my despair? I can neither believe the situation I find myself in nor understand why even now I cannot be faced and told the truth..all of it…
I faced cancer by starting this blog in an attempt to be honest and open about my prognosis – that is how I got by…assuming the clinicians along the route would be similarly forthright and honest (which they have been). Having run with that I now find myself foundering as I unravel the spectre of dishonesty staining both my marriage and a friendship.
Meantime I have been taken on a diversionary weekend involving lots of bookshops, great company and no mobile signal – the only 3 essential elements for a good time I reckon. Unfortunately I seemed to carry all my sadness with me but it was, nonetheless, lovely to be taken away and enjoy the company of very generous old school friends who I have not caught up with for close to 30 years. We also made a discovery – that the name for a Bloody Mary without vodka is not called a Virgin Mary but….a Bloody Shame (or at least it was called that where we were staying!)
Back in the hospital environment again this week as it is yet more treatment with the leprosy drug tomorrow…my penultimate poison/mythical potion (whichever way I feel about it on the day as it drips through). I am looking forward to discarding all three lots of antihistamine and the interminable antibiotics after the last treatment on August 12th, which is now, finally, in sight.
So..the jury is out on the leprosy. Whilst it is now assumed to be a drug reaction to pertuzumab by the oncologists who have seen other cases, the dermatologists have, to date, only seen me. They are assuming this is the case but want to see me 6 weeks after pertuzumab has finished and examine/photograph (again!) my arms…Meantime they say I should stay on antibiotics (double the dose) and add more (and different) anti-histamine into the mix.
The next day I went back to the hospital to have another dose of the drug causing the problem…But now only 2 doses to go…22 July & 12 August…Bring it on…
I have all but stopped sleeping…I go to sleep but dream of being on the floor, bruised and battered…every time I try and get up I am kicked in the face until finally left for dead…I hear whispering, giggling and kissing as I lie there…Is it better awake or asleep? Both seem equally unbearable at the moment.
A chink of light though. Those of you who know me will be aware that I am the only person anybody knows who applies annually in the Wimbledon ballot and never gets tickets. It has started to become a joke yet somehow, I apply, with the same excitement and sense of anticipation each year…for the past 16 years! Well…to my astonishment – my cousin Joanne has managed to get me 2 tickets to Centre Court tomorrow…the forecast is for a fine, sunny day and I hope to get there in one piece and enjoy the day. What could possibly go wrong? Thank you Joanne.
With wedding ring discarded (the wedding ring I wouldn’t remove for my mastectomy op, only 3 months ago ) I turn to my new, reliable companion, Alan. I bought Alan very cheaply and he is to be my new sidekick. He is a red pen bearing the message “Hi, I’m Alan and I’ll be your pen until I run out” – straightforward and honest..just perfect!
So today it is back to the hospital – it’s Monday so it must be Dermatology. Now we know what the leprous rash is I expect there will be little to discuss, except I imagine, the sideshow elements – a host of more photos and a variety of consultant onlookers to check out its quirky presentation. Unless of course they have other plans which is always a possibility.
Then tomorrow back for more treatment of the leprosy drug. The final dose of this will now be August 12 so the end (of going to the chemo suite, not the treatment) is at last in sight.
I had planned that sometime around now I would have a small party to burn my bras (to symbolise the mastectomy rather than from a feminist perspective but hey..both are good). I let the date for the party drift for obvious reasons. In the meantime I have discovered that a friend’s son is volunteering on a project in Tanzania and high on the list of the things they need for the women of their community is….bras. That seems a far better way to “celebrate” so I have sent my bras to Tanzania. If anyone else would like to do the same, for mastectomy reasons or the million other reasons why we abandon bras, let me know and I will let you have the address where you can send them (in London).
I could of course still burn the chemo headwear but it doesn’t have the same ring as “bras in the brazier”