[christaylorParticipant]

Hello Cheryl,  seems like you were diagnosed the same year as me and went the CDT which again is the same. I was offered to do trials but back then in my shocked confused mind I decided just to take the standard treatment, however it worked in that it managed to knock it back in order to have a SCT.

Your right in thinking about further scans to establish what or where the MM is in respect of bone damage it is something I intend to ask in November when I see my Consultant. You said your oncologist ? have you asked your Haemotologist Consultant . The Zometer infusions I have just had #21 out of 24 but the Consultant has said if my kidneys are ok then I will likely have more. I feel they have worked in helping the bone damage but only by the amount of pain that’s reduced. For example after every Zometer infusion I would have massive amount of bone pain but now I don’t . So was you also told you would have these for 2 years monthly or 24 in total ?.  And with scans I only had the initial full set but was told the amount of damage done which I have mentioned before except I was told even my skull had lytic lesions so yes I would very much like a full set of scans to compare regardless of costs. Hope this helps a little but as you would have read it’s a very individual thing but sometimes our paths cross haha. Good luck and Take Care CT.

[peterlParticipant]

Hello Cheryl,

Not sure I can help much, but when I was diagnosed 12 months ago, I had both bone and kidney biopsies, a full skeletal xray and I think an MRI on the spine, but according to the hospital records, I never had the latter!

Last month I had another full skeletal xray and an MRI on the spine.  At my consultant mtg a couple of weeks later,  she told me that they can compare the two sets of xrays to investigate any further bone damage, but it wasn’t a NICE requirement to initially have an MRI (at diagnosis) so she said they have nothing to ‘benchmark to’ regarding the spine MRI, but of course now, they have the recent MRI picture to compare with – for future MRIs.

I have no idea about the drug you mentioned.

Not sure I’ve helped much, but very best wishes for the future.

Peter

[blossomParticipant]

Thank you Chris and Peter for your replies…..I am due to see my oncologist next month so will question him regarding the above. As I live on the Channel Islands we so not have a resident haematologist so all treatment comes under the oncologist.

Kind regards to you both.

[mhnevillParticipant]

Hi Cheryl

The bit in your post I am replying to is the question about infusions. I feel rather an expert on this subject. I had about four years of four weekly Zometa infusions to prevent further bone damage. I was only taken off when I began to have kidney problems.
All I can say is, since I finished infusions my pain has steadily increased and now my pp level is slowly reoccurring having been undetectable for over three years. I have always felt that, for me, the implied bonus of anti myeloma factor to the infusions was at play.
Going every four weeks did seem an inconvenience, but it was certainly worth while. I’d advise anyone to accept it gratefully.
Best wishes.
Mavis

[blossomParticipant]

Thanks Mavis, for your informed reply……this is exactly what I needed to hear – to be honest I have never felt that the 4-weekly visit for the infusion has ever been an inconvenience – we have such a great oncology unit here and the nurses are fantastic, always got time for a chat about anything!

I’m sorry to hear that you have an increase in pain and hope there is some help in that department

Kind regards

 

[mhnevillParticipant]

Hi Cheryl

Don’t know if anyone answered your points so in case they didn’t here goes! Yes you should keep having regular infusions of Zometa. It kept me MM free for three years before I had to come off because of problems with my kidneys. Since coming off I have had much more pain and my PP has begun to rise.

As for X-rays and scan, some Consultants are more thorough than others. I usually have to badger to get them others get them routinely.

All best wishes.

Mavis

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