[davidainsdaleParticipant]

Hi Taff

Good to hear that you have responded well to the treatment and the myeloma is under control, just the colateral damage to sort out now.

It may help you to know that you are not alone in having mobility problems, it seems very common with myeloma unfortunately.  I was pretty much in a wheelchair for six months myself and unable to move due to spinal collapse and spinal cord compression. Glad to say that quality of life for me is much better now but it took a lot of time, effort and patience to build up the strength in my muscles and get back on my feet again.  Google maps is great for tracking progress.  50m one day, 100m the next and so on.

Macmillan have lots of usual things going on so it might be worth asking them what is available to help you above and beyond what the NHS has to offer.

Acid reflux also sounds familiar, with me it is self inflicted if I have a beer or glass of wine in the evening. I find that a glass of milk usually sorts it out, if all else fails I have a stock of Lanzoprozal which work well.

With luck, we will have some fine weather and daffodils soon.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Lennie

Sorry to hear that you are having a rough time of it at the moment.

It may help to have a chat with one of the nurses on the myeloma infoline.  They are very helpful and know a lot about myeloma, so will be able to give you some advice or send you some information.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Paul

Sorry to hear about your diagnosis, hope that you are coming to terms with what has happened.

There is lots of useful information available from Myeloma UK either as booklets or downloads.  I found them very helpful.  I would also encourage you to use the Helpline, the staff are fantastic and it is their job to help patients like us – no question is too small.  If you are well enough I would also suggest going to one of the local patient information days and making contact with one of the local myeloma support groups.

Myself, I was diagnosed at the start of 2013 with a bad back which got progressively worst to the point I couldn’t move. Radiotherapy, chemo and stem cells followed and pleased to say that quality of life is much better for me now – most problems are self inflicted doing too much DIY!

They say that having myeloma is a marathon not a sprint.

All the best for 2017.
David

[davidainsdaleParticipant]

Hi Chris, sorry to hear that you might be back on treatment.

There seems to be plenty of positive news coming out on the drugs front which gives hope for the future.

There is a MUK Infoguide series on Velcade and myeloma – this might be a good starting point for you and probably answers some of the questions in your post.
Seasons Greetings and hope this helps.
David

[davidainsdaleParticipant]

Hi Neil

I would suggest having a look to see if there are any local myeloma support groups near to where you live.

There are now over 90 around the country so hope you fill find one suitable.  These provide an excellent opportunity to meet and talk to others in a similar position.  In the absence of a myeloma specific group there are plenty of haematology and macmillan support groups which may be able to help as well.  From a personal perspective as a patient I find these groups invaluable.

 

There are also regular patient information days held around the country which are great events to go to.  If there isn’t one close by there is always the option of combining this with a short break?

They say that having myeloma is like being in a marathon, not a sprint , so you have to keep going!

Hope this helps.
David

[davidainsdaleParticipant]

Good to hear from you. You are a hero. As if myeloma wasn’t enough to cope with…….

 

David S

[davidainsdaleParticipant]

Hi Nihal

There is a good information guide in the publications section here on this website which you might find helpful.  Here is the link https://www.myeloma.org.uk/wp-content/uploads/2013/09/Myeloma-UK-Serum-Free-Light-Chain-Infoguide.pdf

If you need a hard copy then I am sure the Helpline will be able to arrange this.

David

[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

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