Thursday, July 18, 2019

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.

Sunday, July 14, 2019

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.

Monday, July 08, 2019

Jeffrey Epstein....Again!

My post of January 2015:
Jeffrey Epstein -
Le scandale du Jour.

Yesterday (The Daily Beast):
Jeffrey Epstein Arrested for Sex Trafficking of Minors

Billionaire pedophile Jeffrey Epstein was arrested for allegedly sex trafficking dozens of minors in New York and Florida between 2002 and 2005, and will appear in court in New York on Monday, according to three law enforcement sources. Saturday's arrest by the FBI-NYPD Crimes Against Children Task Force comes about 12 years after the 66-year-old financier essentially got a slap on the wrist for allegedly molesting dozens of underage girls in Florida.

For more than a decade, Epstein’s alleged abuse of minors has been the subject of lawsuits brought by victims, investigations by local and federal authorities, and exposés in the press. But despite the attention cast on his alleged sex crimes, the hedge-funder has managed to avoid any meaningful jail time, let alone federal charges.

Better late than...

Thursday, July 04, 2019

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!

Friday, June 28, 2019

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.

Wednesday, June 26, 2019

Update - Procedures with Dr. E.

Yesterday I had a 12.45 PM appointment with the radiologist, Dr E. for some 'local' bone cancer treatment on the lesions on specific bones in my pelvic area - better known to me as my hips. These have been increasingly troublesome lately, pain-wise. Instructed to take no food or drink after 5 AM (other than sips of water with necessary blood pressure or pain medications), I set my alarm for 4.30am, so that I could drink part of a bottle of high protein shake to "keep me going". Then it was back to sleep for a while longer.

The procedure was a little more complex than I had imagined, but Dr E. explained very clearly what it was all about. He also assured me that the PET scan I had last week showed no signs of my breast cancer having spread elsewhere - just to these two bones in my pelvic area. That was a relief, my imagination had run riot during past days!

These procedures necessitated some anesthesia because fairly thick "needles" are inserted to...well...I don't want to think about that! Once clad in hospital gown, lying on a trolley with iv inserted, I was wheeled into the designated operating area. The procedure room had a CAT scan machine all fired up. After the usual, rather awkward and painful shuffle from trolley to hard plank linked to the scanning machine, the anesthetist chatted with me for a while. He asked if I needed some pain medication - to which I nodded - that pesky plank was decidedly harder than the trolley's soft upholstery and my tail bone was hurting already. Soon after that I must've just drifted off without warning.

The next thing I knew was trying to open my eyes to see the clock on the wall opposite, in the room where husband was waiting. I couldn't see the time, mainly because my glasses were in my handbag! It was "3 something" - don't clearly remember, nor does anyjazz. Dr E. came in to talk to us before we left, assured us that all had gone exactly as planned. He said that after a day or two I should begin to feel the benefit: some residual pain from the big needle injections at first then, I'm hoping, less pain than before. I am to take it very, very easy, on my left leg especially, for a day or two - no exertions. The doctor emphasised that the main work, the "heavy lifting", of zapping the malignant cells will happen during the radiation course I'm about to begin; that will be later today, I think, and will be in charge of Dr. K. I'm to report to the Cancer Center at 2 p.m. Also there's the issue of those expensive pills - probably I'll begin the first 21 days of those today too.

We got home from the Imaging Center at around 5 PM, after a quick stop at McDonald's for an iced caramel coffee for me, parched as I was, having had nothing to eat or drink since 5 AM; then a wait at the pharmacy while the pharmacists checked, and double checked, with both involved doctors, that some slightly stronger pain pills prescribed by Dr E. (bless him!) were in order.

So, the beat goes on.....