[JetParticipant]

Maybe they don't talk about things that are that far in the future…?

I don't know as I only went to the morning of our local Info Day last year. I got bored and it was a sunny day so we left. Bad form! LOL!

It sounds quite exciting, but probably not for us, but those who come after…?

[JetParticipant]

Maybe try this link: http://www.dailymail.co.uk/home/search.html?sel=site&searchPhrase=ImMucin

If it doesn't work, just search the Daily Mail page for ImMucin.

[JetParticipant]

Yes, it's the one in Israel. If you can't click on the link, just Google Daily Mail Israel ImMucin. Worked for me.

I'm quite well at the moment. Tomorrow's my last day of Velcade. Bit wobbley from the Dex, but energised, so it's ok. Just finding trouble typing straight and I have college assignments to complete. Ah well, it'll all get done. Off to Paris next week prior to allo SCT on 16 May.

Hope you're well too, Eve. x

[JetParticipant]

Hi Penny

I am also about to face a donor stem cell transplant – providing they can find a match. Any prior experience, particularly about recovery and GvHD would be appreciated. Do you have a possible date for yours? Mine will probably be around May this year.

At Nottingham they have a list of 9 patients who've been through it from a similar position as myself, i.e. following a failed auto. The longest is 4 years post-transplant, alive and well, in remission and with 100% chimerism – that means the donor stem cells have completely taken over the immune system – so it worked. I will be sharing more about this on my blog, including a chart showing patient results at a local level, when I get round to writing it (jetblackliving.wordpress.com).

Jet

[JetParticipant]

Yes, that's very helpful, Caz. Thanks!
From my own research above, it seems they will do USA, but maybe not for every condition????
Good to have a used recommendation… but also not expecting to have any reason to claim, to be honest. Just covering my back!
Jet

[JetParticipant]

Yes, my blog can be found at jetblackliving.wordpress.com. You can subscribe, so you'll get an email each time I post an update. Thanks to everyone who's interested to read and comment on it.

There are a few of us blogging:

Debs: debsjourneywithmyeloma.wordpress.com
Wendy: wendyduffield.wordpress.com
Sean: mylifewithmyeloma.blogspot.com
Mick: lornaandmickyour-loma.blogspot.com

[JetParticipant]

I tried Medici and failed at the first hurdle… The date of birth field only covers people 18-49! LOL!

[JetParticipant]

Bloomin Norah!

I just tried All Clear Travel and got a quote for £1499 for the same conditions for a week in USA!!!

[JetParticipant]

I just went to the MIA site and can't get an online quote for Myeloma. You have to call them.

[JetParticipant]

I just checked World First and got a quote for one week including USA/Caribbean. This is the response I got:

The total premium for your policy, including the accepted medical conditions, is: £102.28

We have shown below the status of the declared condition(s) for each traveller and how much extra to cover any accepted condition(s) is included in total premium. You can exclude the declared condition(s) by ticking the box alongside each traveller name and we will recalculate the total premium for your policy, which is shown above.

J. Black (aged 50) screened for:
Condition(s): Multiple myeloma, Anaemia, Impaired kidney function, Chronic renal failure
Status: Accepted

£56.51 to EXCLUDE cover for the declared conditions.

If we have declined to cover your pre-existing medical conditions, or if you choose to exclude them, it will mean any claims arising from the declared conditions(s) will not be covered by your policy.

I also checked for an annual policy for exactly the same conditions, which they declined.

Hope that's helpful for others.

[JetParticipant]

Thanks for these suggestions, folks! I'm going to try some of them, along with one that Wendy told me about, with whom she managed to get an annual policy including myeloma, but excluding USA and Caribbean for a very reasonable amount. I think it was under £100, but not sure. The company is World First and I think it was an online questionnaire that she thought asked appropriate questions and not like one she'd tried over the telephone who asked her if she'd been diagnosed as terminal. Not really a question you want to answer!

[JetParticipant]

Thanks Jo

It's nice to know people are thinking of me. I don't come on here often, so best place to find out how I am is on the blog. You're welcome to leave a comment on there too.

As you can see, my remission has failed and I am now on Velcade, in preparation for an allo transplant later this year. Not really ready to fully face that yet, so just going day by day and hoping they can find a match.

How are you getting on?

[JetParticipant]

Having the blood test on the Friday prior to the next Tuesday makes a lot of sense, doesn't it? I might try suggesting that in Nottingham. Thanks for sharing, Mari.

[JetParticipant]

Thanks Helen.

How are you getting on? Am I right in recalling that you had your SCT a month or so before I had mine? Or am I mixing you up with someone else? Sorry, I've been a bit out of touch.

Hope you're doing well.
Jet

[JetParticipant]

Hi Eve

I have just started on Velcade cycle 1, as my remission following the SCT failed very quickly. Velcade is currently being administered by injection, but at Nottingham they are well on their way to being able to administer it subcutaneously. I'm hoping 2nd or 3rd cycle.

I was warned by the specialist nurses that the worst bit would be waiting for the drug to arrive. They can't make it up beforehand as it only has an 8-hour expiry.

So, far, after only 2 visits, it's gone well. The first visit was on Monday, where they already had my blood results and the prescription issued the week before. The Velcade was delivered about 15 minutes after I was in the chair. The second day was Thursday, where I had my shortest ever visit to DayCase – in and out in just over an hour. They didn't need to take blood on either day. They only did a sitting and standing blood pressure check and neuropathy questions.

I'm not sure about next week's visit (Day 8 of first cycle), if I'll need a blood test first, but I'm going in at 3:45, so will see if that works as well.

I've been warned that the worst day is the first day of each cycle, as like Dai said, they need to see the blood results to check the correct dose, have a consultation and issue the prescription. It is then taken up to the cyto-lab and of course that's when the waiting will begin.

I've arranged to go in at 9 to be cannulated and have the blood taken from that. Then see the consultant and while waiting for the Velcade, have my Zometa infusion. Not sure if it'll be any quicker, but that's the plan. I really hope it works as I have a T'ai Chi class on Monday afternoons which I'm reluctant to miss.

Good luck with yours and hope you can find a way to lower the waiting time. It's bad enough to have to keep going into hospital without it taking the whole day.

Best wishes
Jet

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