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.

It's That Day Again + Medical Update.

Happy Indi Day - for me also - kind of. I have no radiation or medical appointments until Monday! Also, I'm happy because the course of radiation related to lesions on my hip and leg is done - for now anyway. The treatments on my chest wall will continue for a few more weeks - as a precaution - making the sessions shorter.

Pain pills are still necessary, but not working especially well. Dr K. kindly provided a refill prescription yesterday. Such prescriptions, for medications which include any kind of opioids, have recently come under a spate of New Rules, to safeguard those who would use opioids for purposes other than pain relief, sometimes accidentally killing themselves. That is all fine and good, but the complications involved in obtaining these medications now mean that even cancer patients cannot obtain refills without the requisite prescription, on paper (no fax or e-mail) signed in ink, by the ordering physician, and handed to the pharmacy. These rules were followed by us yesterday afternoon - to the letter. What did the pharmacy say? "Sorry these are not due until tomorrow (4th July) and we are closed for Independence Day so we'll have the refill ready on Friday". My response: "What am I supposed to do tomorrow, when I run out?" She: "Do you want to pay for a day's worth, the insurance will not pay until tomorrow and we are closed." Me: "So, as you are closed, should you not compensate for that by filling the prescription today?" Nope! If I had agreed to pay for one day's tablets it would have cost me $60+ for the generic. Ridiculous! I guess the fact that I'm English, and that Independence Day is the fly in the ointment, didn't help ;-)

Dang! I was cross and getting hotter under the collar! I'll manage, but some people in the same position might not. This is so unfair to those who need opioids for all the right reasons.

I do suspect that the generic of my pain medication, stocked by our pharmacy, doesn't work well, possibly due to certain cheaper "fillers" used. Comments online by those who have been taking the pills for years have indicated that this is the case - do I believe online commentary? Hmmm? I had, earlier, asked what the charge would be for the branded version of the same medication, not covered by insurance. One would, I was told, have to buy a full 100 tablet bottle of the original branded version, its cost, with discount, would be $500. Sigh. The generic, to be collected Friday, will have to suffice!

Not Particularly Radiant!

Today, Friday 28 June, I'll be undergoing the third session of my course of radiation. I'm not yet sure exactly how long the full course will be, but the schedule I've been given covers the next four weeks. Perhaps there'll be more - don't know - nobody has told me. I do know that next week's sessions will be limited to 3, due to Independence Day on Thursday, and presumably the departmental staff having a long weekend added to that. In a way this is good for me too - it gets me started, limbered up hopefully, on two shorter weeks, which have to feel easier than the usual 5-day week of treatments.

What I'd been led to believe, during the run up to undertaking the radiation course, has been proved wrong. It was along the lines of, "Oh, radiation is easy, it'll take you longer to get undressed than the actual treatment will take - it's virtually in and out of the treatment room". Nope! In my case it isn't! My treatments take between 25 and 30 minutes - even longer than the PET scan I had recently, and are more uncomfortable. I have three sites needing treatment, left chest wall (behind the mastectomy site) and both hip areas. My treatments take much longer than those of the average patient with a single treatment site. I'm not happy about it, but I'm stuck with it. Lying on the very hard plank for an extended length of time is terribly uncomfortable for me, and if I happen to move just a teeny bit the operators are not pleased with me - I understand why, but.... Ah well, I guess I can take it for a few weeks, maybe it'll get easier when the pain begins to recede in my legs and hips. At present, after Dr E's procedures the other day, I'm in quite a bit of pain. Whinge whinge. There - I needed a good whinge!

You've gotta larf! No pillows available for me - best I got were two small facecloths under my tailbone.

I've started the Ibrance tablets course, and am drinking lots of fluids, including lots of extra plain water to stave off nausea.

Do I see application for a "weed" license on my horizon? Maybe. It would probably be $100 well spent. There's an outlet in our town, even! Oklahoma has surpassed itself - at least on the medical marijuana front if on nothing else.

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.