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Managing the Enzalutamide delivery cycle

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User
Posted 16 Dec 2015 at 17:22

The purpose of this post is to explain how I try to ensure I never run out of Enzalutamide (Enzo). I hope it may be of use to others. The post contains factual information that I know to be true and other information that I have deduced and that I believe to be true.

My Enzo is delivered to me at home by a company called Healthcare at Home. They are just a delivery company, they do not have the power to dispense. They only deliver my 4 weekly supply of Enzo to me if my Onco has authorised them to do so via a signed prescription. My Onco can't dispense Enzo to me willy nilly. Enzo is expensive. She only has the power to dispense if the Enzo is still working. She can judge whether it is working via the PSA blood test. Therefore, I need to have such a test every 4 weeks.

When I first entered this process my Onco said that I should have a blood test 7 days before my Enzo ran out. I thought this would be a tight timescale for the logistics required. I suggested the blood test should be done 11 days before my Enzo ran out. This was agreed.

I show below the 28 day cycle together with the actions I and others take.

Day 1 to Day 16 - take tablets, yum yum!

Day 17 - Bloods taken at my GP's practice and sent to The Royal Devon and Exeter hospital.

Day 19 - The blood test results should by now be available for my Onco to review. She's a very busy lady and it may be a day or three before she is able to do so.

Day 21 - Have Healthcare at Home contacted me to arrange delivery of my Enzo? If yes, breathe easily and continue swallowing the magic beans until Day 17 of the next cycle. If not, start progress chasing. Contact Healthcare at Home, tell them I run out in 7 days and ask them to start nagging The Royal Devon and Exeter hospital.

Day 24 - Delivery arranged? If yes, happy days. If no, progress chase Healthcare at Home again.

Day 25 - Delivery arranged? If yes, happy days. If no, progress chase Healthcare at Home again.

Day 26 - Delivery arranged? If yes, happy days. If no, progress chase Healthcare at Home again and it's getting to brown trousers time.

Day 27 - Delivery arranged? If yes, deep joy. If no, get in car, drive to The Royal Devon and Exeter hospital, start hammering on doors and don't leave until I have the magic beans in my hands.

Day 29 - Return to Day 1 above.

User
Posted 16 Dec 2015 at 19:47

Hmmm
Sounds complicated but then you have the home delivery and GP in the loop.
But then if it works then don't try to change it.

my own experience is that my Onco writes 2 prescriptions for 4 weeks each (to be presented for dispensing at the pharmacy separately.
I take the prescription to the Infirmary Pharmacy for the dispensing. This usually takes about an hour, so I go read the paper and have a tea in the cafe.
So at the subsequent Onco appointment She just needs to issue a prescription for 4 weeks as I already have 2 weeks left from the previous lot.

As far as blood is concerned I again have this taken at the Infirmary typically on a Friday morning and go to my Onco appointment on the Monday after the weekend.

My GP isn't really directly involved although they are kept in the picture by my Onco

Hope this helps

User
Posted 16 Dec 2015 at 20:07

Im really getting this scenario having experienced it first hand !! My step-son has to be fed nightly with a milk feed via a gastrostomy ( tummy peg ). He has needed this since he was 5 and is now 20 yrs old. Someone has to sign for it every month even though he needs it for life. Throw into this leaving home for a college , returning every school holiday period , now going to university , returning when he feels like it ........... Managing the doctors , carers , supply company , deliveries.
Yes you have it -- a nervous breakdown all on a plate. Day in , day out !! Unbelievably terrible communication at times.

User
Posted 17 Dec 2015 at 08:52

Interesting how the system varies in each area. We think we understand ours now, although it took a while to get it all agreed:
The prescriptions are issued in advance by the onco at consultations, and sent direct to the cancer/chemo unit within the hospital, who do the dispensing. Before they release a 4-week supply, they need blood tests and BP readings. These can be done in the hospital clinic, and the drugs can be collected in person. Tony prefers to have his blood tests done at the GP surgery, which is closer to us, and they send them direct to the hospital. The results are copied back to the GP. BP is to be taken at the same time as the blood samples.

Many men collect their Enza in person, but we have arranged a home delivery. This doesn't seem to involve any extra agencies, it's sent out by the hospital. Two days before this, Tony's blood sample is sent in. Next day the hospital nurse will phone him, and do a "telephone triage" asking how he is, and what his BP is. If all is well, the drug will arrive the day after that at our home. If somehow this fails, he can go in and collect it the following day This month it will all happen a day earlier to avoid holiday dates, but fingers crossed it will all work out.

Marje

 
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