Saturday, June 22, 2019


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.


Sackerson said...

Just hello, and wishing you many more good days.

R J Adams said...

Life can suck when you get to our age, Ann. Mrs RJ is presently upstairs on her bed suffering the vile effects of her latest chemo session. It's even taken out her taste buds, though they say they'll eventually recover. We see the oncologist again in ten days after a CT scan two days before. Needless to say, our thoughts and good wishes go with you and Anyjazz. I know only to well what he's going through!

Wisewebwoman said...

I had a sense you were going through a pile of shyte when I didn't see a post from you. I read it all and can't imagine how stressful this all is for you and Himself. But especially you. Cancer is such a bummer and so unpredictable and stealthy and rapacious.

The cost of the medications are criminal. These effing drug companies.

I am glad you are focussing on the quality of your life.

Words are so inadequate at times. Mine are.

Know all good thoughts go your way.

And thank you for sharing this journey with us, your readers.


Anonymous said...

Should your current dilemma ever affect me, I would forego the Ibrance. It is only a small part of your treatment, yet carries significant risk. Ibrance with an inhibitor extended life by 10 months avg compared to inhibitor alone - not remission. Your radiation treatments and a-inhibitor are the worker bees. An oncologist would be remiss to not provide this option, but I personally believe Ibrance is over-rated for the price. National Institute for Health and Care Excellence stated the side-effects outweighed the benefit. There are numerous pharmaceuticals costing plenty that deliver rather slim results with high risk, and Ibrance is one more. You've not had good luck historically with side-effects. You're a tough bitch and I know you'll do fine lol. You'll be under the weather for a while, but hope you'll gift us with periodic updates. Thanks fos sharing. Stay strong.

Twilight said...

Sackerson, RJ Adams, Wisewebwoman, and Anonymous:

Rather than respond individually I hope you'll not mind a communal "thank you" just for today. I appreciate and value all your good wishes and opinions - and shall keep them in mind as I journey this road to who knows what and where. At least I'll not be lonely. :)

I do intend updating with journal-type posts, I hope somewhat less wordy than this one, as things happen.

Charley Settles said...

Thank you, Ann, for inviting me into your life. And I want to remind you that for the joy you've touched so many with, we'll be eternally grateful as we water the seeds you've entrusted to us.

Twilight said...

Charley Settles ~ That's really far too kind, Charley - but I do thank you for those words. :)

Kaleymorris said...

Thanks for the update We are ever at the ready to assist.

Twilight said...

Kaleymorris ~ Thank you - and we, both, are ever grateful! :)

WiseLalia said...

My best wishes for a successful treatment and good (in your eyes) outcome.

Twilight said...

WiseLalia ~ Many thanks Lalia, your kind thoughts are much appreciated. :)