Hello Jan,

Thank you for your reply 🙂 Yes I’ve read the experiences of some of the ONJ sufferers on the Myeloma Beacon website…very very worrying.  I suppose if it were me would I want Myeloma  pain in my body or ONJ in my mouth/face.  If it’s in my body it would be taken care of more quickly through the Haematology department, but as you ha…[Read more]

Hello, coming late to this post.  I am so glad someone is posting about ONJ.  I tried to speak about this on a Myeloma Facebook page, but they closed ranks on speaking about the seriousness of this topic, preferring the …everyone is different and not wanting any examples of other ONJ sufferers.

My husband was on Zometa up to his SCT in March 2…[Read more]

Hi Tony

Main hospital is Queen Alexandra Hospital, Portsmouth.

SCT carried out at Southampton General Hospital.

I do have the Myeloma UK leaflet which I’m definitely taking along next week.  I will let you know how it goes.  The consultant might not remember my asking last time when I bring it up asking for the pre printed form you m…[Read more]

Hello Tony,

Thank you for your reply.  Yes I was aware of the no shingles jab, just cannot understand the opposing instructions from the two consultants…..any ideas?   Was yours an autologous transplant or donor?

Best wishes,

Sonia

Hi Les,

My husband Les, who will be 70 this year, is due any day to have the SCT at Southampton.   There wasn’t a bed available today, so we have to ring every morning until there is one which could take between 2-4 weeks due to infections etc

My husband is taking it in his stride….Me….I’m worried of course!!

Good luck to you

Best…[Read more]

Hi Les,

My husband Les, who will be 70 this year, is due any day to have the SCT at Southampton.   There wasn’t a bed available today, so we have to ring every morning until there is one which could take between 2-4 weeks due to infections etc

My husband is taking it in his stride….Me….I’m worried of course!!

Good of luck to you

Best…[Read more]

Hi,

Priming and harvesting all done last week.  Very tiring but a great bunch of people at Southampton.   SCT due any time around 6th March.  Line being put in 3rd March.

Thanks to to all the advice and relating of experiences….good or bad…..it has helped in understanding all the procedures.   😊

Yes Bernard, it is a great age.  Thanks for…[Read more]

Hi Steve

Under Dr Orchard at Southampton and Dr James at Portsmouth QA.  Strange too that my husband developed pain and diagnosed recently as micro insufficiency fractures in the pelvic area.  He is on morphine tablets as sitting became almost impossible.

Hubby is very positive about it all.  Thank you for your good wishes.  Nice to reach oth…[Read more]

Hi Steve

Your reply came straight to my phone as we were sitting in C7 having the chemo today.  It’s good to see someone on here age 70 going for an SCT….I see you come under Portsmouth QA too.

Today went well, but we take your point about the side effects, which seem a common reaction.  As you say the staff in Southampton are great, nothing t…[Read more]

Thank you all so much for taking the time to reply with details of experiences and some timely advice.  🙂
Jan…we have been out today for extra pjs!! I hope your current therapy goes well ready for your sct later in the year.
Louisehenry….. I think I read about your experience a few weeks ago on the forum.  (You’re from the IOW?) I showed my h…[Read more]

Hi

My husband has had weekly velcade for the past 4 months, along with dexamethazone and cyclophosphamide.  He was originally on Thalidomide, but that stopped reducing the para proteins and therefore was replaced by Velcade.

He is treated under QA Hospital Portsmouth.  He was shown how to administer the first injection at the hospital and then d…[Read more]