[coastiParticipant]

Hi webTeam,

Any chance you could add tapatalk support for access from mobiles & tablets ?

thanks

Laura

 

[coastiParticipant]

Hi there,

Sorry you and your wife are having such a  touch time.  I didn’t have the delusional symptoms when I had my autoSCT but it very much reminds me of when my Mum was in hospital having a hip replacement.  She caught a simple urine infection and it caused her to be totally delusion, refusing medication not reckoning people.  It was very scary at the time, and I had hard time believing nurses when the said “don’t worry, it’s the infection and antibiotics will fix it”.  Sure enough it took a couple of weeks but antibiotics did work.  Your wife’s Hickman line infection maybe causing her confusion very possibly?

The sore mouth is very common with the melphalan chemo for transplant.  I had it quite bad for 4 or 5 days, the nurses gave me co-codamol and oral morphine which helped. It goes away quite quickly once white blood counts starts to come back up.

Best wishes, hope things improve soon for you

Laura

[coastiParticipant]

Hi Jane,

Thanks for the tip on vitamin B and folic acid, I think I’ll give that a go for my PN which isn’t painful just a bit numb at the moment.  I’d read conflicting things about ALA (Alpha Lipoic Acid) and didn’t want to risk it just yet.

Enjoy the gym!

Laura

[coastiParticipant]

Hi Julie,

My MGUS was diagnosed from a routine blood test at the GP that I had for something completely unrelated and I had no symptoms.  Blood test showed a high level of paraproteins and I had more tests after that.

I’ve read that stat before that around 10% of over 60’s have MGUS. But if 10% of MGUS people go on to have MM that’s a lot of people and MM is a rare disease???

Laura

[coastiParticipant]

Hi Emma,

I’m new on the forum too, and I’m also considering the allogeneic as part of the LenaRIC trial. Just wondering if that is what you were given the option of?  As you say it’s a huge decision. I was presented with it half way through my CTD therapy for autoSCT (which I had just before Xmas), so have been thinking about it for a while and trying to read as much as I can find to make the best possible decision.  I’m pretty sure at this point I’m going to go for it, but reserve the right to change my mind! Possible cure is a big carrot, but when I’m currently so well and I’ve no other big issues due to MM it’s risking a lot. Doctors think I’ll be having end of April or May.  Send me an email or reply here if you want to share your thoughts on this – it’s never far from my mind and I would be glad to share with someone faced with same decision.

Sorry to jump on your thread Scott – hope all is going well for you.

Laura

 

[coastiParticipant]

Hi Jane,

Thanks for the update. Quite a scare you had last time, but as you say so long as it results in a good outcome it’s worth it.

Good luck, and thanks for sharing your long term living with this story !

Laura

[coastiParticipant]

Hi Jane,

I’m a forum newbie too, just had my first SCT.  Interested that you had better result from your second transplant as I’ve been told to expect that a second one is normally half the remission length.

Laura

[coastiParticipant]

MyelomaUK were presenting today to Scottish Parliament committee on getting earlier access to new drugs.  Don’t know what the outcome was though

http://www.scottish.parliament.uk/S4_HealthandSportCommittee/Meeting%20Papers/Papers_for_Meeting-25_February_2014.pdf

Laura

[coastiParticipant]

Hi,  Would like to give a big thumbs up for the Beatson Centre in Glasgow where I’ve been getting treatment. Excellent team there, doctors very good and clear in discussing treatment, issues etc at clinics.  I had SCT in the transplant ward and the full team were great, only issue was the food …. not good 🙁  Also they have a Maggie’s centre there which was really helpful to have some days between appointments

Laura

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