[shadyladyParticipant]

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 have read, it is now a waiting game through the dental route.

My husband (retired) has recently had returning pain in his hip (micro fractures…. and is permanently on morphine) BUT he is able to  go for his usual walks and the pain is manageable.    My worry is him being in dental pain, and waiting for  NHS funding for root canal work to be done.

Best wishes

Sonia

 

[shadyladyParticipant]

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 2016.  There was some dental treatment to be done, but was referred to the Maxillofacial dept at the hospital.  They did all the necessary examinations and X-rays then pronounced they no longer did dental surgery (they had not informed the consultant in the same hospital about this new non procedure…..he was extremely cross!!) and my husband would have to be referred for nhs funding.  This was last summer.  It took 3 months to get the funding through and a few weeks ago after root canal work and capping my husband is ready to go back on Zometa. EEEEEK

My worry is that my husband was not in any pain whatsoever, but to wait 3 months for funding if you are in pain has really made me think is Zometa worth it?  I’ve heard that Pamidronate does not cause ONJ but it does have side effects.

Sorry if I’m rambling a bit but it’s all a bit worrying.

Best wishes to all

Sonia

[shadyladyParticipant]

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 mentioned!

Yes there are enough harvested stem cells for a second transplant should it be needed.

Yes I hope you keep well on the zometa.  BTW my husband is waiting to go back on the zometa.  He needed dental treatment….root canal……I expect you know once you have biphosphonate, it’s in your body for good…..but we also discovered the dentists can never do extractions because of the side effects of biphosphonate (jaw bone destruction).

Best wishes

Sonia

 

 

[shadyladyParticipant]

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

[shadyladyParticipant]

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 wishes….Sonia

 

 

• This reply was modified 8 years, 8 months ago by  shadylady.

[shadyladyParticipant]

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 your good wishes.

I’ll keep you all updated.  😷

 

 

 

 

[shadyladyParticipant]

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 others out there in this weird world of MM.

Regards  Sonia

[shadyladyParticipant]

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 too much trouble and a friendly bunch.

Do hope your referral appointment goes well.

Thanks again

Sonia

[shadyladyParticipant]

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 husband your reply regarding your time at Southampton…..good to know he said.
He has done quite well on all the medication since last May, having CTD, then going from Thalidomide to Velcade.  His main problem has been constipation.  He also has a fractured pelvis and is on morphine.  He’s not doing so bad giving that he’ll be 70 this year.  Thankfully he has retired and can go with the flow.

[shadyladyParticipant]

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 did the rest of them himself at home.  The treatment package I collected from the hospital pharmacy once a fortnight, to be stored in the fridge at home.

He has just stopped all treatment ready for a stem cell transplant.

Good luck

Sonia

 

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