Geri is the thyroid cancer specialist nurse on the Macmillan Support Line.
She checks this group and responds to medical or factual questions where members could benefit from an expert answer. You can also post questions specifically for her - she'll aim to reply within three working days.
Hi all :-)
I was wondering if any one knows of or has had thyrogen prescribed recently?
I had a TT in January and then discovered I was pregnant so have had to wait until after my baby is born to have rai. My baby is due in 4 weeks time, so my attention is drawing to my upcoming treatment after that.
The thought of being hypo with a 6 year old and a new born fills me with dread, I'm sure I'll be tired enough with constant night feeds, etc without being hypo also. I know there is a shortage but not sure if this had been solved yet or if there is limited stock what are the chances of me getting any :-(
I dont see my endo now until end of oct, and this is really playing on my mind. So any info would be great :-)
The news at the moment isn't good. I've just had to go hypo because there is NO stock anywhere in the UK. Genzyme claim to have three batches undergoing quality checks - it's something to do with a fault in the packaging vials and they each need to be manually checked before clearance. The US SEEMS to be getting preferential treatment over the rest of the world so my guess is the first batch will be sold before it's even out of the factory.
The latest update on their website - http://www.thyrogen.com/pdfs/supplyupdate-2011.pdf - hasn't been updated since mid July. It basically says 'We are completely clueless and don't have the slightest idea what we're doing - oops, sorry''
I have google alerts set up for any news reports on the situation and will update whenever I see anything signficant. I have to believe that the situation will ease next year, but if your consultants think you can avoid it for a few more months, then you may want to wait.
Let thyrogen be available next year!!
If not it's stiff upper lip and jelly legs time again for me.
Ally - I just wanted to say how PLEASED I am that you came back to see us. I've been wondering for the last 6 months what you'd decided to do and how things were going for you.
For now, focus on the baby and put aside the thyrogen issues until you've got through the birth and first few weeks.
Hello Ali, I just got a reply from my 'buddy' Daniel at NWLondonCancerNetwork
www.nwlcn.nhs.uk No great news from the pharmacy there that people don't obviously know, ie massive worldwide shrinkage/shortage, and I had hoped for a bit more of detailed response, but the pharma lady is quite tight lipped & buttoned up, so I can only suggest getting quite verbal with your MP/GP while you still can. For a better understanding about how the NHS 'reforms' will affect you(like no thyrogen + scan rations) visit blog.plain-sense.co.uk *NB
The other item he came back to me on was healthtalkonline.org NB In regard to place to share. It's quite full on with video links etc, and I'm sure many of you know it already. There are no post of ref to TC mind.
ps - I had my neck US and may/may not have to go back for FNA onb left anterior. I hope not but am prepped for it . Keep as well as you can -Ol
For once I don't think the thyrogen issue is one where the NHS is to blame - there's just none out there to be bought.
I had dinner a few weeks back with a couple of women who work for the strategic health authority in the North West. I mentioned Genzyme to one of them who rolled her eyes, sighed and said "We HATE Genzyme" - so apparently it's not only thyrogen they mess up.
Latest update on the Genzyme website was posted yesterday -
"Genzyme would like to provide an update on Thyrogen availability. Intermittent shipments of the product have resumed globally with the expectation that current supply projections for the remainder of 2011 will meet approximately 40 to 60 percent of global demand for Thyrogen. Genzyme continues to advise health care providers not to schedule any new Thyrogen treatments until they have secured product. The manufacturing of Thyrogen and the subsequent process to release the product for shipment are complex processes, and require months to complete. Since Genzyme has extremely limited inventory, even minor changes to our current manufacturing planimpact the timing of Thyrogen availability.
As previously stated, Genzyme continues to expect that Thyrogen supply constraints will occur through 2012. This is due to a combination of factors, including: ongoing Thyrogen manufacturing capacity constraints; longer timelines to manufacture and release Thyrogen into the market; a lack of inventory of the product; and an increase in global demand for Thyrogen. To address this, Genzyme is investing in increasing Thyrogen manufacturing capacity, and working to decrease lot release and production timelines.
Genzyme and Sanofi remain committed to Thyrogen and thyroid cancer patients. We are focused on restoring supply of the product and will continue to provide updates going forward. We sincerely regret the impact the supply constraints have had on the thyroid cancer community."
Good to hear from you and hope you are keeping well. Barbara's advice re your situation is very good and you will get through this even if you have to go hypo. Have you been told that you will definitely need RAI as not everyone does these days. When you find out for sure then you will be able to make plans and get organised.
Olly, fingers crossed that all turns out well with your FNA.
Thanks Kazzy. I've been away for a bit, just a break, so out of the Mac loop a bit. Trying to keep up with the NWLCN involvement plus posts here, but not doing very well. Concerning myself, I have to add that my lead consultant in US did retire so no2 is in the hot seat now. When she did a scan pre-op 18 months ago she unfortunately missed all the pap(whereas my old LC spotted it) trouble left neck(right follicular could hardly miss at 6cm) - so it might be a case of unfinished business in terms of making doubly sure. Shall see.
Hoping your post RAI results are coming back okay. yrs Olly.
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