For people living with incurable cancer only
This group is aimed only at people who have had an incurable diagnosis themselves, as we have had feedback that they would like a safe space to share their feelings openly among themselves.
If you have a loved one with incurable cancer, you are very welcome on the Online Community as a whole, but we would ask that you respect the wishes of people with incurable cancer and not post in this particular group. Instead, you will find really good support in the Carers group, the relevant cancer type group and the supporting someone with incurable cancer group.
So there I was, all chemist's were saying there were shortages of this medicine (which I take for spread womb cancer). So, surgery arranges for me to pick up a supply at my cancer hospitals pharmacy. Great. Go there, duly given supply but told point blank by the pharmacist that the manufacturer has stopped making it. Tears. (Me, not him!) What a shock to my system. The nice young pharmacist took my details, said he would phone my onc then phone me. He did this, so I have found out that I am to go on to Provera. I am grateful that there is something else I can move on to, but my nerves are shattered. Hope nobody else finds things out like that. Never expected a problem such as that to arrive, out of the blue.
I am glad I have my garden to work on tomorrow to help my sanity.
Bless all you wee chickens on this site
Welcome to the Provera club, though I'm sorry your membership came in such a way!
I'm intrigued to know how it works for spread though. Any ideas?
Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh
Gosh, bellabongo. That’s a shocker. I’m not surprised you cried. I would have too. I do hope the gardening therapy is beneficial. You can take it out on the weeds
lots of love
What is a community champ?
Thanks for the welcome, Lass. But no, I know diddley-squat as to what it will do for me. I am to make an appointment with my gp, apparently, where I will advance my knowledge on this. Meanwhile, I will do my usual, which is live one day at a time. That system hasn't let me down yet. Watch a movie, do retail therapy, gardening, do my bible study, eat cake, have lunch with some former workmates, drink giant mugs of milk. . And nap. Some things you can't control. Ya know?
Cheers my lovelies
I know Daloni! What a bummer! Gimme more of that oxycodone!!
I, too, have been put on provera after not being able to access megace. I have serious fatigue on this medication and my quality of life has diminished. Has anyone else had this?
I had serious fatigue before I was put on it, but it certainly has become worse. I've been on it 18 ish months now.
I also ended up with alopecia too, though that has lessened since they reduced my dose 8 months ish ago. More moody too, as in mood swings with highs and lows. But that could be my thyroid mess, or at least contributing to it.
I'm on so many things though, it's hard to know what is attributable to what! Lol
Thanks for your reply. I have given in to the fagtigue as I cannot beat it. My tumour has grown again after finishing chem so maybe that is contributing. My mood has lowered, I was quite positive before taking megace. A little more sunshine and less rain would be good medicine!
Hi Alison, Hi Daisy,
I’m hopefully the bearer of some good news. I was speaking to a very good friend yesterday, who just happens to a chemist. She’s phoned the manufacturer of Megace this morning and was told that they’re still manufacturing the medication, it’s not been discontinued.
The reason why there is none in circulation at the moment is due to the ‘Falsified Medicines Directive’ that came into force in Feb 2019. In a nutshell it means that manufacturers have to implement changes to the packages of all their medicines to protect patients and stop dodgy medication entering the supply chain. Apparently a number of tablets are in short supply because of this.
So ladies, please don’t give up hope - Megace will be back in the near future! I’ve got enough Megace to last me another 2 weeks, so I might be joining you on Provera for a month or two.
Is there any difference between megace and provera?
I had an apt with my oncologist tonight and asked the very same question. Megace and Provera are both progesterone based hormone therapies, which is why they’re used to prevent reoccurrence or further spread (if your cancer is oestrogen receptive). My ER assay was inconclusive but the Megace appears to be doing its job and the inoperable mass in my hip is still stable.
My onc did say that Megace is normally prescribed in the first instance when dealing with spread/reoccurrence as the side effects are more tolerable. The issue with Provera is that you have to be prescribed with a much higher dosage in order to have the equivalent effect of Megace. My Megace tablets are 160mg - 1 per day. With Provera I’ll be started on 300mg per day since I’ve only got 1 kidney (think you normally start on 400mg?). If the manufacturers of Megace haven’t sorted out their packaging issues by the beginning of August, I’ll be joining the Provera club too.
Take care x
Just a note for anyone on Provera.....
They've got another manufacturing fault, this time with the 10s. So if you're on a dose with 'bits', then you may have issues for the next month or two, depending on how long this fault lasts.
My pharmacy just called me to say they've managed to get 30 tablets for me. As I need over 450 for a month, that's a problem! They're calling all their other branches to see what they can find for me, and are delivering what they've got on Friday.
Luckily on Monday, I'm seeing my hysteroscopy nurse for a hysteroscopy..... That'll be fun with my abdomen all sore and swollen topped with whatever added discomfort from the liver biopsy tomorrow..... So I'll be able to ask them about a dose alteration while there's a fault.
But if anyone has a prescription refill coming up, you might want to get it sooner rather than later to make sure you get enough tablets!
Hi Alison (Bellabongo) Well it seems you are not alone in this problem about your meds! Although I'm not on either of the drugs mentioned, I can relate to you crying in the pharmacy! There was a shortage of the drug I had been on for over a year and when I went to the oncologist and then to the hospital pharmacy to get my usual months supply, he said he had none to give me! Boy did I panic and cry a lot! He assured me as soon as he got them in, he would call me, so that my husband could go and collect them and he would put them aside until he got there! I think I was without any for about 5 days and was sure I wouldn't survive! That too was some kind of problem with the container and the info on it! I hope this gets sorted for all of you very quickly!
In the meantime, as you say, one day at a time. Oh and if you run out of weeds, I have plenty to keep you occupied!! LOL!
Love Annette x
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: