Saturday, February 15, 2020


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.


Wisewebwoman said...

I am so very sorry to read this T, how terribly upsetting for you and that pain sounds brutal. Would a local anaesthetic help? Perhaps not. I mean it is so important to find out what's going on in there and it is so heartbreaking that two of your pastimes, computer and knitting, are now out of the question. Double shyte.

I so hate all this medical stuff too, so exhausting and endless and nothing is co-ordinated with other labs and clinics so days spent running around to specialists and hospitals, etc. Further tiring the deflated spirit. Not that we're capable of running anymore.

You're in my thoughts.


Anonymous said...

Oh Goodness! Are you to continue Ibrance + inhibitor indefinitely? I've never been one to fully engage with western medicine for the reasons you describe. I'm sure you feel most comfortable following your medical doctors' directions or you wouldn't be doing it. Are you able to hold your weight?

Sackerson said...

Sorry to read, hope you find something more effective soon. Keep working at being a leftie, it's only appropriate.

WiseLalia said...

I wonder if there is a way that you can be propped into place with some pillows? That might make the PET scan possible. This is a theory as I have never had a PET scan and don't know much about them.

Twilight said...

Wisewebwoman ~ Thanks, WWW. Yes, the fact that my few enjoyable pastimes are limited even further is frustrating and depressing. I don't think a local anaesthetic would be possible, but I shall ask the doc when I see him. I'm resting more, in the hope that it might help a little.

Twilight said...

Anonymous ~ Thank you for your comment. I'm not sure how long the Ibrance and Inhibitor therapy is to continue - as long as I can take it, I guess, or as long as I can obtain grants to allow me to afford the Ibrance. I'm not on the highest recommended dose of either, which could be why these troubling side effects have taken a while to emerge. Yes, I'm following the doctor's advice. I haven't had the benefit of the same oncologist from day one though. The original specialist, who ordered the Ibrance and Anastrozole when my breast cancer spread to bone, left; then I saw two or 3 temporary docs for single appointments, then the current temporary oncologist arrived, he'll be around for a while longer, I think. Nobody is fully familiar with my case from the beginning - which doesn't help.

I lost a lot of weight at first, but that was partly due to the lymphacitic colitis which was diagnosed in the midst of everything else. I haven't put much weight back on but the loss seems to have stopped.

Twilight said...

Sackerson ~ Thank you kindly! Yes, leftiness seems to come naturally to me, mentally, I'm working on the physical side now. :)

Twilight said...

Wise Lalia ~ Thanks for the suggestion. It'd be a solution, but it's not allowed. I've asked about this on different occasions when having scans of various kinds. They give one a hard piece of something or other to put under knees, and will, if pressed, fold a small towel to put under small of back, but that's maximum - and even that is not always possible. If you make even a tiny movement during the scan it spoils the whole thing, and it has to be begun again. I've managed, with difficulty, to get through several CT scans and one PET scan before, my back has never been good at lying flat on hard boards- but that was before the problem I'm having with right shoulder and side.