[majic30Participant]

My husband recently diagnosed with 10% he had spinal cord compression caused by tumour. Given radiotherapy to reduce this. Fortunately he’s managed to mobilise a little with stick and morphine.however his spine showed disease and this has been diagnosed as symtomatic myeloma. He’s 45 not sure what to make of it all so far but we are aware of the facts to date. have to see dr at qe Monday re sct but not sure about the facts etc. my husband not keen on zometa either as we hv read too many side affects and risks. If anyone can shed any light or explain anything  we might not understand I would b grateful……. I appreciate everyones mm is different. Just nice to talk to someone…. Currently coming to end of 2nd cycle ctd.

[jmsmythParticipant]

Hi sorry to hear that your husband has MM. My husband was diagnosed in 2006 with smouldering MM. He had SCT In March last year. In the 8 years that he’s smouldered he’s had Zometa on and off. He started it again after SCT but had to stop,as his potassium was low. He has never had a any side affects ( potassium low because of SCT). He has sailed through Zometa and hopes tomstart again when potassium stabilised

Kind regards Jean

[SalParticipant]

Hello. So sorry to hear your news. Your story is so similar to ours. My husband was diagnosed after spinal cord compression and a plasmacytoma tumour. He has a lot of damage to his spine and the full myeloma diagnosis was given in January. He just started his 3rd cycle of VCP today. He is 44.

One of the really big changes in our lives is that it is now impossible to plan ahead. I find that really difficult but have to see it as a discipline that needs practice.

I think we all have to find our ways of dealing with things and everyone’s  situation is different. I have found this forum very useful, though, and there are plenty of people who can offer their perspectives if you have questions. I can’t help with the Zometa question as my husband is on Loron, which is a bisphosphonate taken daily in tablet form.

If you haven’t read the infosheets on this site, you might find they answer some of your questions. They are very clear.

I hope the appointment on Monday goes well.

Sarah

[majic30Participant]

Just wondered if levels were ok and m was reduced below 10% why would u need sct ?or is this something that happens further along…..  he’s not in denial but some things just dont seem clear.

• This reply was modified 11 years ago by  majic30. Reason: Too much personal info

[rebeccaRParticipant]

Hi, even if you are lucky enough to get a complete response from your current treatment i.e. ALL evidence of m gone they will still, generally, want him to have an SCT as this is deemed to help give the best possible chance of a longer remission than without it and especially because he is so young. SCT is nothing to fear (had mine 10 weeks ago) it is just another treatment option.

Good luck
Rebecca

[eveParticipant]

Hi

My husband has been on Zometa for 3 years plus Ad Cal ,I can only tell you,he has no side effects at all,he did need a tooth removed,so had it removed. In hospital,as dentist prefer hospitals to deal with it,no problems at all,there are a small percentage of people who have problems,but you have to look at the bigger picture,Myeloma does tremendous damage to your bones,and Zometa has proved how effective it can be.

Usually treatment is started not just on percentage in bones,but extra damage EG bones!!! It’s your husbands choice!!! But he is young,and SCT offers a chance of more remission,and possible an Allo SCT.
You need to get in touch either Ellen free phone number top of this page,she will explain send you booklets,you both need to be well informed before you make decisions

Myeloma can be treated but not cured,but you can have long remissions ,so learn all you can.Eve

[majic30Participant]

Thanks for your info and advice x

[mhnevillParticipant]

Hi.

Just to confirm what Eve has said about Zometa. I have been on it for well over two years and was on tablet Bisophonates for a year before that. Like Slim I have no symptoms except a flue like fever the first time I had an infusion. They only used to give them for two years but have decided they are worth while continuing with as they do the business with the bons and appears to have an anti MM effect. As with all drugs there are possible side effects, but as your husband’s MM is very much bone related, I would say it is a risk worth taking.

When my MM progressed, after removal of a spinal plasmacytoma eighteen months before, my Consultant said I could potentially suffer stress fractures at any time because I had so many bone lessions. I haven’t had a single one. I put that down to Zometa so I continue with the four weekly infusions.

I do hope your husband’s treatment goes well.

Best wishes.

Mavis

[majic30Participant]

Thanks Mavis and everyone else… Meeting went ok came away much clearer and hv read through the sct booklet tonight. its a lot to take in ATM but once we know how things are working in the cycles we will be faced with where to go next x

[majic30Participant]

After 3rd cycle para proteins  down to 1.9  it started at 13 does anyone know how far down it needs to go ??? Husband wants a break after 4th cycle .

[rebeccaRParticipant]

Hi, the ultimate goal is to get down to 0 pre SCT, 1.9, I believe, is a very good achievement and know some go to SCT with this level but would go with the consultant on no. of cycles pre SCT – I had 8 cycles of a different treatment and levels didn’t budge much at all after 5th cycle but continued with maximum to reinforce the treatment I’d had. I’m sure you’ve not much further to go be it 4 or 6 cycles pre SCT.
Rebecca

[CarolsymonsParticipant]

Hi

It seems the standard treatment in the UK is 6 cycles at least. I had no paraprotein detectable after 3 cycles, but my light chain ratio was still abnormal, so had to complete the 6 cycles. Do you know your husband’s light chain readings? Even then the ratio never got to normal, but I had the transplant anyway. Bone marrow biopsy showed 4% at that stage. 5 weeks post transplant -still mo paraprotein and normal light chain ratio at last…..biopsy will be repeated at the 100 day mark post transplant. Not sure what other tests will be done then. So far so good….

Carol

[Author]

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