[davidainsdaleParticipant]

Hi Sylvia

The general view seems to be that this sort of thing is best left to qualified GPs and haematologists based on your individual circumstances rather than try and second guess what all the different parameters mean. At the end of the day this is what they are paid for and they should flag up any areas of concern and answer any questions. I think it would be too easy to draw the wrong conclusion.

I do agree that it is a good idea to ask for a print out and keep for reference purposes.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Helen

I am sorry to hear that your recent treatment has not been successful. It sounds like you have had quite a rough time of it lately.

I would certainly endorse Rebecca’s comments and add that I too have much valued your comments on the Forum website.

I do hope you enjoy that well deserved coffee in Rome, for me it will be a Guiness in Dublin!

Hope this helps

David

[davidainsdaleParticipant]

Hi Brendan

I am sorry to hear that you have have been recently diagnosed with light chain myeloma. It is something that none of us want to hear. I was diagnosed at the beginning of 2013 and had the standard first line treatment which seems to have worked well. Like you, fatigue is still an issue.

Your remarks about the start of your myeloma journey seem all too familiar with most being diagnosed late.

As you say yourself, myeloma seems to be very individual so it seems difficult to generalise, the medical specialist are probably in the best place to know what is best. There seem to new novel treatments coming along all the time so plenty to be optimistic about. Good to hear that you have not had too many side effects, the general rule seems to be to try and keep as fit and healthy as you can.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Cat

Sorry to hear that you have been diagnosed with myeloma, but glad to hear that you are coping well with the treatment.

It is generally an older persons’ disease but we have someone in our local myeloma support group who is the same age as yourself and others not too much older, so you are not alone in having to face up to it at an early age.

There are lots of opportunities out there to contribute and help put something back into the system, and places where you can get help and advice.

They say it is a marathon, not a sprint!

Hope this helps
David

[davidainsdaleParticipant]

Hi Chloe
Sorry to hear that you are finding things difficult just now. They say that myeloma is like doing a marathon rather than a sprint.

There are lots of ways in which you could get support.They say that it’s good to talk. I would certainly try going to one of the myeloma support groups which you mention. There are also Myeloma UK Patient and Family Info days which are held around the country. These are excellent and I can certainly recommend.

Other sources of local help might by Macmillan or Maggies centres which might not be not too far away from you.

Hope this helps
David

[davidainsdaleParticipant]

Hi Chloe

Sorry to hear that your mum has relapsed after 1st SCT – I know how she feels having had the same experience, albeit on longer timescales so now waiting to see what second line treatment might be. I was diagnosed in 2013, pps are currently 9 and rising slowly.

Kevin makes a number of useful comments in his post and I must admit that the idea of repeating the first treatment does sounds attractive if it worked first time. Something I am thinking about.

I know quite a number of people in our myeloma support group who have had Velcade and generally seem to sail through treatment without too much trouble. It does seem very effective at reducing paraprotein levels.

There are plenty of options and combinations of drugs becoming available to feel positive about. The consultants will have a pretty good idea of what is best for your mum taking everything into account. The best advice I have seen is to try and stay as fit and healthy as you can despite the myeloma.

I would also recommend chatting things through with the team on the Myeloma UK helpline. They are very friendly and knowledgable.

Hope this helps

David

[davidainsdaleParticipant]

Hi All

Some positive news in the Times newspaper business section yesterday – not normally know for it’s sensenational tabloid headlines but, it describes the myeloma drug Revlimd ( made by Celgene ) as a blockbuster' and one of the most successful cancer drugs of recent years’.

Hope for us all then in this New Year of 2019!

Hope this helps
David

[davidainsdaleParticipant]

Hi All

There is lots of useful information on this website but as many have pointed out, it is sometimes not easy to find.

The search engines on the home page ( next to the donate now button) and on the forum are particularly useful.I would recommend trying them.

Hope this helps

David

[davidainsdaleParticipant]

Hi, there may be a Council for Voluntary Services ( CVS) in your local area, or you could try Macmillan who will almost certainly know what is available.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Michael

Thanks for your very interesting and informative post providing an update on the drug approvals pipeline.

I think that importance of the policy work which Myeloma UK undertakes on behalf of patients cannot be understated. Working with the other blood cancer charities to effectively lobby organisations such as DoH, NICE, NHS is vital.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Helen, Peter and all

Like many of you, I have not looked at the forum for a while. That said, the recent Myeloma UK Impact report says that 89,555 hits are recorded each year on the Forum site. That’s 245 each day! So it seems that lots of people are loooking but not contributing since the last posts on several topics are weeks or months old.

The Times last week had an interesting feature on cancer research and noted that the UK spend last year on myeloma research was £6.8 million per year compared to leukemia at £35million per year, yet the number of deaths per annum is roughly the same. It also said that this year’s Nobel prize for medicine was awarded for the discovery of checkpoint inhibitors and CAR-T cell therapy. Hopefully this is the future for myeloma patients? I think there are 3 centres in the UK offering this.

It will be interesting to see if any of these points are raised at the Manchester Patient Infoday next weekend. I will be there so come and say hello!

As for me, diagnosed 2013 and 5 years now post stem cell transplant and doing well. Not on any medication but pps slowly rising, now about 7.

Hope this helps
David

[davidainsdaleParticipant]

Hi Fergus

Sorry to hear that you have MGUS. Nearly everyone I speak to with myeloma says they feel tired so I think fatigue just goes with the territory. Fatigue is still an issue for me 6 years on from initial diagnosis.

I was on Zometa for two years, and seemed to have sensitive skin problems for a few days afterwards. I don’t know whether it was the Zometa or some of the other chemo drugs causing it. But as they say with myeloma, it is a very individual disease.

Hope this helps

David

[davidainsdaleParticipant]

Hi GG
Sorry to hear that you have been diagnosed with myeloma but good to see you here on the Forum.
I had my Stem Cell transplant 5 years ago in Liverpool and am doing well, with much improved quality of life.

I wouldn’t worry too much about hair loss, it very quickly grows back. I found that the main problem was the air conditioning in the hospital causing a cold draught on my bald head, so I bought a cap which worked very well.

There is plenty of advice on this forum about preparing for a stem cell transplant which is probably summed up by keeping as fit and healthy as you can beforehand, but expect to feel tired afterwards for a couple of months.

Hope this helps, good luck
David

[davidainsdaleParticipant]

Hi Peter and All

You make a number of very valid points. If the average age of myeloma patients at diagnosos is around 70, then I suspect that most patients will not be users of latest technology including mobile phone apps, tablets and social media applications. But then the website may be aimed at other groups such as younger health care professionals.

Speaking personally, I can manage with the new website on my laptop using point and click but it is certainly less easy to navigate than the old one.

Hope this helps

David

[davidainsdaleParticipant]

Hello Rebecca

Perhaps Myeloma UK should be pushing the patient engagement aspects of their work harder eg the `official’ forum and the local support groups.

Glad to see that I am not the only one who is having difficulty with the new website layout. Perhaps a case of ` emperor’s new clothes’?

Hope this helps

David

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