Disconsolate

Just a quick update - as much for my own record as for any stray reader passing by.

Side effects from either Ibrance or Anastrozole have been causing more problems than usual of late.
Arthritis-like joint pains in fingers which I was managing reasonably well, have spread to my right shoulder and side- so much so that knitting is now unwise, and using the computer mouse with right hand also a no-no. I can manage small amount on the computer with mouse in my left hand - but it's a bit of a fumble.

I had an appointment for a PET scan this coming Tuesday (18 Feb), waited until Friday hoping that the pain might ease off after doing no knitting for several days, and hardly any computer time - but no, and pain pills do hardly anything to help, nor does medical marijuana. The problem with my femur, however, does seem improved - it looks as though to get the effect needed from the medications, I must bear the side effects. It might also be that the pressure I've been putting on my right arm and shoulder, using the quad cane for so long, has contributed to this right shoulder/side issue. :-(

Regarding the PET scan - there is no way, with my shoulder as it is, that I could lie on a hard board for 20 to 25 minutes without moving a muscle. I made enquiries of various local medical staffs. It's difficult to speak to the the people mainly involved as the PET scan people are in town only on Tuesdays, and my oncologist only on Wednesdays. It was not possible for me to speak to either. I had been told, and pretty forcefully, that if PET scan appointments are not taken up, and not cancelled, the patient would be charged. YIKES! It's flippin' expensive! Nobody was able to tell me whether, if I turned up on Tuesday at 8.30 am and was unable to "do" the scan, whether I would be charged. By this time, after many phone calls to different places, with no helpful information, I decided the best thing would be to cancel the appointment. I confirmed that I shall keep (what was to be) the follow-up appointment with oncologist on 26th Feb, as planned. Perhaps he will be able to suggest some way of dealing with my problem and I can re-schedule the scan. They were unable to find an earlier appointment for me to see the oncologist so...I shall wait. I'm limited to reading, or more likely napping in front of the TV, upon which I've become quite the expert.

Stuff Done

The past week has seemed filled with "stuff to do" that was not sufficiently interesting to write about at length: follow-up appointment with radiologist (skin all healed well after radiation treatments in August). Dentist appointment for a filling. Appointment for a CT scan to discover whether any changes have taken place for good or ill during past 6 months. Haven't had result yet. Letters and numerous garbled phone calls about my grant towards cost of Ibrance medication running out. Efforts made to obtain a fresh grant. Finding a way to fax our last tax return in relation to the grant issue. Having faxed it, more garbled phone calls in relation to same. I say "garbled" because most of the time I cannot understand what the person at the other end of the line is saying. They are usually carrying out lists of routine contacts, gabbling their lines at top speed. I thought that it was an accent problem, but no, my husband has the same difficulty. Nobody is taught how to speak on the phone, in a professional way, these days - or if they are, the lessons are soon forgotten!

Then it was Hallowe'en.

We had only two trick or treaters this year, one of whom was my husband's great-granddaughter, Serenity, with her grandparents. It seems that the old-fashioned Hallowe'en customs have, at last, been overtaken by more communal and organised dress-up occasions care of churches, schools or other societies. It was an unusually cold evening here too, which didn't entice young visitors travelling on foot. Here is great-granddaughter Serenity, with husband and I - he got all dressed up for the occasion too. :)

Various Goings On

The weather here in southern Oklahoma is, at last, after days of temperatures in the 80s, acting in more autumnal fashion. Today it's actually cool to cold outside - 49 degrees, windy with a storm in the offing. The trees haven't yet donned their fall colours, after a few more of these cooler nights, it'll happen.

In other news, a routine blood test on 16 October, to discover how the targeted therapy medications are affecting my blood quality, showed that the white cell count was below desired minimum - same for platelets. Oncologist told me to take a second week off the Ibrance capsules - these are routinely taken for 21 days with 7 days off each month. This time I had 14 days off. Blood test yesterday showed figures had bounced back to an acceptable level, so off I go again with the Ibrance. I'm to have a CT scan next week - to check whether much has changed for good or for ill since my last scans around 6 months ago. Not looking forward to that!



The problems I had in obtaining a refill of my pain medication last month happily did not recur this time. Our usual pharmacy has changed their wholesaler. The medications I take for pain-while-walking now come from a different generic manufacturer. I was worried that these might be even less effective than those I've been taking, but, though it's a little early to be sure, I do suspect that these might be a tad more effective.

Further afield, Brexit bumbles on...and on....and on. When, oh when, oh when will it end? The part of it all that affects me personally is the currency exchange rate, it affects my two pensions coming from the UK. The rate has been volatile for a couple or more years, diving down then up, down again etc, depending on what had been Boris Johnson's or Ms May's latest failed attempts at bringing about a deal.

In the USA the season known as "The Holidays" is almost upon us. I'm glad to be here, still, to see it once again! Hallowe'en decor has been showing up for the past few weeks in front yards - ghosties, ghoulies and long leggedy beasties, spider webs and witches...you know the drill. We now await the Trick or Treaters on 31st of the month. We had very few last year - disappointing, because it's fun to see the imaginative costumes the kids come up with, and the excitement on the faces of the littlest ones. Perhaps the custom is starting to go out of fashion, for one reason or another - safety, perhaps, and many communal organised Hallowe'en costume events. Next up: Thanksgiving on 28 November, followed by You-Know-What-mas, a month later.
Ka-ching...ka-ching!

On the knitting front, I'm using a big skein of pink "ombre" tinted yarn to make another, longer scarf. It's something I can pick up and just knit, without need to refer to a pattern. I love seeing the changing shades of pink appear, apropos of which, I noticed that my husband is reading "The Secret Lives of Colour" by Kassia St Clair. I shall read it too, when he's done with it. Back-cover blurb: "From the scarlet women to imperial purple, from the brown that changed the way battles were fought to the white that protected against the plague, from kelly green to acid yellow, the surprising stories of colour run like a bright thread through our history." Several varieties of pink are investigated, for example: Baker-Miller Pink; Mountbatten Pink, Puce, Fuchsia; Shocking Pink, Fluorescent Pink, and Amaranth. Maybe some of those will appear in my scarf.

Medical Update plus Something Completely Different, with Ian Lang.

Radiation therapy course finishes this morning! YAY!!!!
My second 21 days of Ibrance began mid-week after 7 days free of the demon pill. Oddly enough the loss of appetite and nauseous feelings increased during that 7 days off - I was expecting the opposite. I really need to be eating more. I'm oncologistless at present, so I asked one of the senior nurses about the nausea. She very kindly sent a couple of prescriptions to be picked up - 2 different nausea medications specifically for problems caused by chemotherapy and other cancer-related therapies. One of these medications worked a treat on the first trial, not as well the second time - but I'm to take them alternately, and for a particular reason didn't do that initially- better luck next time, I hope.

On the medical marijuana front, I have an appointment at a local MM dispensary late tomorrow afternoon (I managed to get their last appointment - my stars must have been aligned!) I'll see a visiting physician who will (I hope) give me a recommendation letter to send to the Oklahoma Medical Marijuana Authority, so as to get me an MM Card. That card will enable me to buy product at any dispensary in the state. This appointment will cost me $75, a little cheaper than expected, and because I'm on Medicare the cost of the MM Card will be just $20 (as against $100 for those not on Medicare or Medicaid.) Around 10 days, after sending (online) proof of identity, residence, the recommendation letter, with a digital photograph of myself, and my Medicare card + the dosh, all to the OMMA, I shall hope to be set up to buy something which might help on several fronts.

And now for something completely different....

I'm calling on Ian Lang of Quora to provide a lighter note. As any regular readers will remember, Ian has very kindly given his blanket permission for me to use his writings on my blog. Here's what he had to say - waxing all poetic for a change - in answer to this question.

What do British people think of Boris Johnson as their PM?

Non-British readers will likely need a translation of "soss" : it's short for sausage; and should any readers in the USA be thinking of 'chips' as known in their world (= a bag of crisps in the UK), chips are something akin to steak fries in the United States - certainly not like French fries which are way too skinny for their own good!
So:

What do British people think of Boris Johnson as their PM?

I think unlike John Masefield, I’ll stay away from the sea

And focus all my wishes on soss ’n’ chips for tea.

I think I’d not like to be at work in summer’s hot enthrall-

I think that is much better though, than watching the football.

I think I really can’t be arsed, with who it is in charge;

Johnson, Corbyn, Hunt, Leadsom, or that bloke Farage.

For I think that in some future age, it will be so much fooey.

In five billion years, as well we know, the sun will go kablooey.

And all that we have said and done and all our silly rhymes

Will be vapourised. Including those with lines that don’t suit the rest of the metre and aren’t made into couplets.

I think then, that we should not dwell on our human worries of toss,

Yet cast our minds to glorious times, when there are chips, and soss.

And splendidly, egg as well, if you’re lucky.

Quick Journal Update on the Medical Front After Wednesday's Follow-Up Appointment

After my radiation session yesterday afternoon, we had to take a 40 minute drive to a Cancer Center in a neighbouring city, for "Lab Work" (blood analysis) - in connection to the Ibrance therapy I've followed for the past 21 days. The purpose was to discover whether Ibrance therapy has affected my blood too severely to continue treatment. It has affected white cell count, but that was expected, and in my case it is not a severe enough change to preclude continuation of the "targeted therapy" Ibrance offers. I was given this information, not by my usual oncologist, but by a young doctor who informed us that my oncologist left her position at the end of last week. That was a surprise! He also said that, for a time, our town will not have a visiting oncologist, the previous doctor's replacement will not be "doing" the Cancer Center in our town. Ah well, I suppose that something will be sorted out for us sooner or later.

The young doctor we saw yesterday tried to be helpful in regard to my severe pain-when-walking issue. He suggested that I try a different medication, at least until the radiation and Ibrance effects fully kick in for me. He suggested extended relief morphine tablets, and prescribed a month's supply, one pill twice a day. If there happens to be any "break-through pain" I can still supplement with my usual pain pills - this need is likely to be fairly infrequent. As it turned out, not as infrequent as I'd hoped. I took one morphine pill at 7.30 PM but it had no effect whatsoever on the pain-while-walking. I'm back to the pain pills already. Disappointing! I'll make further enquiries about the morphine tablets tomorrow - perhaps it will take time to get into the system - or perhaps the dose prescribed is too small.

The doctor we saw also advised me as to medical marijuana. He said that, in these circumstances, considering current lack of oncologist, it might be preferable to use the doctor who visits the medical marijuana outlet in our town as my recommending physician. Now I need to look into what'll be needed for that, in addition to an extra payment of $100 for the doctor's fee. The next visit of the speciality doctor to our town's outlet for MM isn't until 8 August.

We shall now await news from the specialist pharmacy in Texas who deal with Ibrance, as to what I'm going to have to co-pay for another 21 days' tablets. I do have a nice 7 days off the demon pills now though, to allow time for my body to re-orient itself a little.

Another Medical Update

Not a lot to report...let's see....

Radiation ongoing, usually for 5 days per week, on chest wall area, it will continue for another 2 weeks. I'm now needing to cover the radiated area with some soothing cream, containing a little lidocaine - expensive at the pharmacy and not covered by Medicare ($45-50 per tube). I was pleasantly surprised when the nurse gave me a tube, paid for by a charitable foundation. A whole pile of the stuff had been provided by the foundation for radiation patients' use.

Walking is still very painful when my weight goes onto left leg; pain pills at maximum dose help a little for a few hours, but do not eliminate pain. Radiologist says that if pain doesn't improve in a few weeks he'll consider more radiation shots, but healing will take time.

Re oral medication: The Ibrance daily doses are coming up to the 21-day cut-off period, when 7 days off it will follow. I have to go to a nearby town for blood test in relation to this on Wednesday, to make sure the medication hasn't adversely affected my blood count, also to establish whether this, very expensive, medication is to continue, and at what cost. A substantial co-pay is going to be needed this time, for sure.

I've been adjusting my blood pressure medications recently, the usual dosage was proving to be too strong, probably due to my loss of weight, and/or as a side effect of the pain pills. To be on the safe side I saw our GP on Thursday, to check that the way I'd adjusted dosage was the best way. It was.

I mentioned to our GP that I'm starting to lose my appetite (again), probably due to the Ibrance meds. I want to put weight on now, not take it off! I asked whether he would recommend that I apply for a medical marijuana license to help with appetite, and perhaps pain also. He offered me a prescription for a medication that is a synthetic version of marijuana, or the parts of the herbal version that are helpful: Marinol (or its generic equivalent). I decided to accept a month's worth - it cost me $135 for 30 tablets. Doctor said that my oncologist would probably feel comfortable to recommend herbal medical marijuana, which could eventually work out cheaper, after the $100 dollars for a license. He prescribed a low dose of the Marinol generic (due to my age. I do NOT want to get dizzy and fall!)It is to be taken at bedtime. Not much to show for it after just three tablets. I'm hoping to see the oncologist on Wednesday, and will ask then about possibility of medical marijuana rather than Marinol. I've read that Marinol can have some nasty side effects that the herbal version does not have.

MEDICAL MATTERS (again)!

My April 27 post took my breast cancer story up to the point when, after some time had passed following my left breast re-excision mastectomy, the drain tube had been removed, followed later by all the stitches. All my posts relating to breast cancer, by the way, can be accessed by clicking on "breast cancer" in the label cloud - in the sidebar, below and to the right.

Story continues: I saw the oncologist, on May 29 - she whom I hadn't seen since November 2018 - when all had seemed to be going so well, around six months after my lumpectomy. Oncologist appointments scheduled after that had had to be cancelled as things began to move on quickly.

So...on May 29, the oncologist brought herself up to date on newer developments, on the breast cancer's possibility of metastasis, taking into account my weight loss during past months. I'd attributed this loss mainly to the lymphocytic colitis I had been found to suffer from, following a colonoscopy; she was unaware of this. Anyway, she referred me to the radiation department for an assessment, ordered a CT scan, and prescribed another course of estrogen-blockers (the pesky tablets I had to stop taking early on in my tales of woe). This time she prescribed a lower dose and different generic type as a starter.

A CT scan was carried out the next day. This showed that my early stage breast cancers had indeed spread into some of my bones (apparently a favourite place for spreading BC to roam into). In my case it has roamed into left femur and right hip. I'd been having problems, and pain, but had put it down to arthritis or side effects from other medications. I'd had other things, such as surgery, on my mind for some weeks!

During an interview with the radiation oncologist a few days later, he told me that bone cancer is treatable, can be controlled quite well by various means. He set me up for an appointment to plan a course of radiation on my chest wall, and on both hip areas. This was done, on Thursday this week, by simulating the radiation I shall need, using a special machine to make a plan of how, when, where and for how long radiation will be focused. For this planning session we had to travel to a nearby city (40 minutes distant) because the required machine is not available in our hometown. Fortunately, the eventual daily radiation procedures can be done in our hometown. Radiation oncologist also advised me to have a PET scan; the other oncologist had also recommended this. A PET scan can show any other tiny lesions lurking throughout the body (excluding brain) and give detail on how one's organs are working. I was not keen on lying on a hard, flat board for 25 minutes in an enclosed space, but did so, earlier this week - I think it was Tuesday. Days and dates have morphed into a blur, it began to seem as though a ton of bricks had fallen on me from a great height! Setting out the order of things here is proving helpful to me so, dear reader, please feel free to skim or move to the last paragraph should things become too wordy by half!

I didn't enjoy the PET scan but it was not as difficult as expected. It was carried out, quite unexpectedly to me, using a travelling PET scanner. The machine, situated in an area within the trailer of a huge truck, was in town that day just for yours truly, at 8 AM, and for one other lady afterwards. One technician and a driver/assistant made up the crew. The truck would later be on its way north, to Kansas and beyond hauling its precious cargo, stopping at hospitals here and there to carry out its helpful business.

Another layer of treatment from the oncologist is still to begin : a second set of pills to go with the estrogen-blockers. These tablets are going to be ridiculously expensive, even with all kinds of discounts deducted from the price. Ibrance is the name of this ultra-expensive medication; its purpose is known as "targeted therapy", rather different from chemotherapy which is an all-encompassing zapper. Ibrance targets only specific types of cancer cells. There will, inevitably, be side effects, some of which could pass me by, but my immune system will be weaker, so avoidance of bugs and germs will be the order of the day from now on. Ridiculously expensive, I said ? With no discounts or insurance the current price is, I've been told, between 14 thousand and 15 thousand dollars per 21 days. The pills are taken for 21 days of each month with 7 days off. Obviously, nobody could afford those prices - per month!

Medicare has accepted an Ibrance prescription for my treatment, as has our supplementary insurance. The pills can only be supplied by specialist pharmacies. I'm dealing with such a one in Austin, Texas. The pharmacy people have been working to secure discounts for me from various sources. So far they have a single $5,500 donation from the PAN Foundation, to be used as the pharmacy sees fit. My Medicare, and the medication supplement side of Medicare will cover some part of the first month's cost; some of the $5,500 will be used to cover the rest, the pharmacy has told me. So, initially, for 21 days' pills, I'll pay nothing. Once I've accepted the arrangements and am "in the program" the specialist pharmacy tell me that they will work on securing more discounts. I've been warned that co-pays, from then on, could still be high - between $300 to $700 per month. Sigh. We'll cover what we can for as long as we feel it reasonable to do so, and IF the tablets are shown to be zapping the nasties after several months. I shall be tested routinely and regularly to ensure blood counts don't go too low, as well as to discover what improvements have occurred - if any. It's said, online, that this medication has been found to be quite powerful and very successful in many cases. I won't know if I don't try. There is no generic version available. The Ibrance pills for the first 21 days were delivered yesterday (Summer Solstice) via FedEx. I shall not begin my course until Wednesday next due to other procedures scheduled for Tuesday, about which, please read on, if you have the patience.

Something more was fixed up just two days ago. As well as the multi-week radiation course being planned for me, the radiologist at our local hospital is going to do some "local treatments" on the lesions in my left femur and right hip (iliac bone I think). This will take place on Tuesday next (25 June). I'll be under light anesthesia during the procedures (similar to the level of "knock-out" used during a colonoscopy). The radiologist will put an injection in one side (left femur, I think), and perform an "ablation" on the iliac on the right. I think that an ablation is a kind of very strong electrical zap to deliver a mighty blow to the malignant cells, hastening relief from pain. I've only a sketchy idea about these procedures though, haven't yet been told about them in detail.

At the age of 80 + years I'd have limited time on Planet Earth in any event - with or without latest health-related developments. If I can retain a reasonable quality of life while taking the recommended medications and treatments, and it helps me to spend more time with my husband - who is now 82 - I shall count myself very lucky indeed.


TL;DR (Too Long; Didn't Read version):Breast cancer has spread from left breast (now fully removed) to the bones in my left femur and right iliac. A variety of tests and treatments are available, some have been already undertaken others are still to begin. I'm 80 years old so I do not expect miracles, but a little more time would be good - as long as quality of life remains reasonable.