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.


Wisewebwoman said...

Every time I think of you to get an update (usually over breakfast) I think I must drop you a line and you're always here with an update.

The misery of all this copay and negotiating for marijuana along with your suffering makes me enraged. So fortunate that charitable foundations ease the burden a little. But unconscionable that in the land of the free that essential services for ill people are not but are profitable. Anyway this is what you're coping with also. Enough.

I was having an internally whiny day today with my legs and more new meds (free) and your post shut me up.

I do hope everything starts to work soon and that healing will occur, it sounds like the treatments are taking a toll and I am so sorry.


Anonymous said...

Let's hope no pain, no gain applies :).
Definitely scope the cannabis offerings. It's come out of the dark ages into the light of respect for its benefits. Stoney Twilight has a nice ring to it. Go to this link for Allbud and click on "strains", look at the buttons on the left, click on "symptom & condition". You can find dispensaries on this site, too, to compare inventory and prices. You'll probably want edibles. Comes in different concentrations, with most finding relief at 50 mg THC, but WWW pointed out the benefit of various cannabinols, CBD being only one.

Much to be desired with American healthcare, but it sounds like you're in good hands, albeit expensive.

Twilight said...

Wisewebwoman ~ Thank you, WWW! I keep telling myself that I am lucky that the pain doesn't extend to "everything, all the time". At present severe pain happens only when walking and putting weight on left leg. It could be so much worse if pain were constant! Walking is important though, even just around the house can take a major effort at times. Still, with help of pain pills I can still go shopping at the supermarket (limiting length of aisle walks).

I saw Dr.K this afternoon, he's the radiology specialist oncology doctor. He is of the opinion that left leg should begin to show improvement - very slowly, soon - if that does not happen he'll give it another "shot" or two - he said, though, that's not usually necessary in such cases. Fingers crossed! He also encouraged me to look further into medical marijuana.

Twilight said...

Anonymous ~ I hope so - am ready for a bit of gain!

Thank you - I shall deinitely further investigate the cannabis issue. LOL! Stoney Twilight - something to aspire to eh!?

Thank you for those links.

First stage will be getting a doctor to recommend me for the medical marihuana therapy, in my case it will probably fall to the general oncologist whose patient I am. If she isn't happy about doing it, the store in our town has a doctor attending once in a while who will, for a $100 fee, look into possibility of recommendation for any patient who cannot find a doctor who will recommend them for the therapy. Sounds a bit iffy to me, but could be a last resort if nobody else in my squadron of doctors/specialists proves willing to assist; some of them, such as surgeon and radiologists are temporary, so understandable if they are not comfortable with this.

You're right - I do feel that I'm in good hands, and count myself very fortunate. Though medications would have been less expensive in the UK, I doubt that, in my particular case, I'd have had better (or even as good) treatment across the Atlantic. Actual treatments and procedures here have cost me nothing extra so far, due to Medicare and our supplemental insurance.

Wisewebwoman said...

I should add that doctors and specialists here have reservations on usage of MM: that there have been no long term studies done on their effectiveness in combination with other drugs but I say hey with the sunset of our lives nearly upon us, who cares?



R J Adams said...

As one who regularly partook of the 'evil weed' (usually daily) for twenty years, illegally of course, and at a time when politicians, doctors, and god knows who else (probably God, as well!) were claiming it was vile, evil, highly addictive, led automatically onto hard drugs and sent you totally round the bend within a week, I can say with some authority that it has never done me any apparent harm. I'm still relatively sane (though some readers of Sparrow Chat may disagree) and hopefully in good health for my seventy-three years. What it did was repair my health at a time I was close to mental breakdown from overwork and assist me in finding a new outlook on life when I desperately needed to do so. I had no difficulty in stopping its use when I moved to the States (didn't relish a lifetime behind bars in an American jail if I was caught with it!)
Needless to say, many of those quick to condemn the weed were happily snorting cocaine at every opportunity.
Okay, rant over! I hope you can source some decent MM and that it helps with the pain and the stress you're suffering right now. Meanwhile, remember you are in our thoughts.

Twilight said...

Wisewebwoman ~ I'm grinning along with you, WWW! :)

Twilight said...

RJ Adams ~ Ah! Thanks RJ - I'd have guessed that you are someone with real life tales to tell on this topic. :) Thank you for your take on the MM issue, and for your kind thoughts.
It'll be an interesting experiment for me - though it could take a while for me to actually get my hands on some MM - red tape an' all that! It's lucky for me, and surprising, that Oklahoma is a MM state - due to one of the question asked on the ballot paper in 2016 - everybody and their dogs must've voted "YAY!!!"

anyjazz said...

How you smoothly keep track of all the physician appointments and the medication regimen and still steer your regular life on a normal path is a mystery to me. If I break a fingernail and I don't know what to do next.

Twilight said...

anyjazz ~ LOL! It gets wearing at times - not so much the appointments (notes on calendar help with those) or taking medication at right times (pill boxes and my lists help) It's all those wee extras that cause my memory bank to overflow and eyes to cross at times. Things such as: wash mouth out with a baking soda solution 3 times a day to prevent mouth sores - a side effect of Ibrance. Take temperature before taking Ibrance tablet each day. Apply a special cream to radiated areas twice per day, but go to radiation appointments with skin cleared of the cream - or anything else - and use only certain brands of soap. :-/

: ) said...

Consider iodine-iodide as antiestrogenic should Ibrance offer difficulty.

Twilight said...

To :) - Thank you for the links and suggestion - I shall certainly save that information for use if things with Ibrance go awry - physically or economically. :)