[davidainsdaleParticipant]

Hi Nihal

Sorry to hear that your father has myeloma. I would have thought that the haematology team or your GP would be best placed to explain the significance of these results.

The problem is that you might not have the complete picture, so could jump to the wrong conclusion?

Hope this helps.
David

[davidainsdaleParticipant]

Hi Taff

I may be wrong but I believe that the biopsy may provide the medics with additional diagnostic information, as well as confirming the diagnosis or otherwise.  It may depend on the lab and what is being asked for etc.  Perhaps something to ask the experts?
Hope this helps.
David

[davidainsdaleParticipant]

Hi Taff,

Good to hear you are making progress through the system.  For me the bone marrow biopsy wasn’t too bad but expect to feel bruised for a few days afterwards!

They say that having myeloma is like being in a marathon, not a sprint, to put it into perspective!

Nice ,warm sunny day here near Liverpool, what more could you ask.

All the best

David

 

 

[davidainsdaleParticipant]

Hi Taff, just to say that there is plenty of help available through Myeloma UK.  I found the information leaflets really useful as well as talking to the nurses on the Helpline. I would also recommend speaking to other myeloma patients, either at one of the local support groups or at a patient information day.

Hope this helps.
David S

[davidainsdaleParticipant]

Hi Susie

I am at the Southport and Ormskirk NHS Trust on Merseyside.

I do recall seeing a report somewhere ( maybe on this website ) which seemed to support the collective wisdom that there was not a lot of benefit in having Zometa for more than 2 years. I don’t know if there is a gender issue here because presumably woman on average tend to have thinner bones and perhaps are more prone to fracture.

That said, I have met a number of people at Patient Information days who seem to have been on Zometa for longer, so maybe it just comes down to local practice and consultants.

I forgot to mention that there is a good MUK Info Guide on biphosphonates if you have not already seen it.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Susie

Sorry to hear that you’re having problems with the Zometa. I was on Zometa for two years but the Drs stopped it 12 months ago saying that there was no benefit in carrying it on after two years.

I had the usual ` Zometa flu’ the first time I had it but after that no real problems. I did think that three or four days after each infusion my skin seemed more sensitive and irritable.

They say a good tip is to drink plenty of fluids just before and after having Zometa to help the kidneys.

The medics or Myeloma Uk helpline are the best ones to speak to.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Kay

Sorry to hear that your mum is feeling so unwell.

You don’t say what type of chemo your mum is on. There are lots of different drug combinations and dosages, so the effects can vary quite a bit from one person to another.

The best advice is always to speak to the doctors or nurses at the hospital or the Myeloma UK helpline, they are the experts. This is what they are there for. There may be other options which you could discuss with the medical team.

In my case, I was on CTD for six cycles. Managed quite well for the first two and then started to notice side effects, but not the ones you mention.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Geoff

Good to hear that you are on the mend after a difficult few months. I was pretty much wheelchair bound for six months following diagnosis because the myeloma had caused spinal damage. Glad to say that my quality of life is now much improved following treatment – they say that myeloma is a marathon not a sprint so you have to keep going.

If you have not already done so I would recommend joining a local myeloma support group and attending one of the Patient Info Days. I have found that talking to other patients is really worthwhile and helpful.

Good luck

David

[davidainsdaleParticipant]

Hi Jan

Forget to say that BBC1 on Wednesday 1 June at 9.00pm The Big C & me follows a lady in Wales who hopes a stem cell transplant will beat her disease.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Jan

I am 2 years post transplant and doing well. There is lots of advice out there but I strongly recommend the info guide available from Myeloma UK, this was an invaluable source of information to me. There is also a great video clip about stem cell transplant on this website and there have been a couple of webinars about the topic which are available on Youtube.

That said, I found the single most helpful thing for me was going along to a Patient information day and speaking directly with another patient who had been through it all. There may also be a local support group nearby.

Good luck and I hope this helps.

David

[davidainsdaleParticipant]

Hi Claire

Sorry to hear that your husband has myeloma.

My story is similar to that above, it all started with a bad back and then wheel chair for six months. Now 2 years post SCT and quality of life is much improved.

Myeloma UK has lots of information available. I found that going to the patient information days really helpful, especially talking to other patients. There are lots of local support groups in the UK and you might find these a useful source of advice as well. It was 8 months before I spoke to anyone who had myeloma and just being able to compare notes with someone else is so worthwhile.

Good luck with your move to the UK. My daughter lives in York, a really nice place but busy in the summer. The sun is shining in Liverpool today here on the other side of the Pennines so I shall sign off to do some gardening.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Pam

Thanks for your comments. So far as I am aware, maintenance treatment ( which I think is only available as part of a clinic trial ) is not automatically offered after SCT.

If there is a local support group near you there may be other patients who you could talk to.

From what I have seen and heard, there are pros and cons and in the end it comes down to personal choice. For me, it is nice to be drug free post SCT, apart from the over the counter medicines for the odd cough and cold!

Fatigue and lack of stamina have been the main problems in recovering from SCT.

Hope this helps.

David

[davidainsdaleParticipant]

Hi jazmax

It must be a difficult time for you. Maintenance treatment post SCT is not something that I have been offered.

It is still early days after your SCT, in fact my pp levels stayed the same after my SCT and then dropped rapidly after a few months.

Myeloma UK did a very good webinar broadcast on maintenance treatment a few months ago. You can find it by using the search engine on this site or looking on Youtube. This may address some of your queries. If not then try the Helpline.

Hope this helps.

David

[davidainsdaleParticipant]

Hi dazz

Sorry to hear that you have MM and wish you luck on your journey. You will find plenty of helpful advice here on the forum.

It is hard to answer your question without knowing more of your diagnosis since it is true what they say about myeloma, everyone is different and reacts to the treatment differently. I think it is probably fair to say that most patients do find that there quality of life is affected at some point.

Staff from Myeloma Uk are available on the helpline and are always willing to give advice. There are also the local support groups which are well worth attending if you have one near you.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Val

Nothing prescribed by the medics for me post SCT.

It may be my imagination but I find Minavex helps keep some of the bugs away. You can buy it from the chemist,one spoon a day, it is usually for children!

Hope this helps.

David

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