[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

[davidainsdaleParticipant]

Hello Michael ( and all)

Hope you are well. I totally agree with your comments.

I worked in the Civil Service for many years and have first hand experience of the importance of Policy work. It may seem dry and boring to most but the power of the pen should not be underestimnated. In giving feedback to Myeloma UK I have always tried to stress the importance of this aspect of their work.

Don’t forget Jim Hacker and Yes Minister!

Hope this helps
David

[davidainsdaleParticipant]

Hi Susie

Hope you are well. I couldn’t agree more.

It is a pity that the number of users appears to have dropped off.

The main advantages for me with this Form is that it has a good search engine which means that earlier posts retain their value and that the content is overseen by staff from Myeloma UK.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Christine

They say that with myeloma everyone is different, which certainly seems to be true.

I was diagnosed at 59 and had SCT a year later and have now been drug free for four years. I felt that this was the right choice for me.

That said, it was not easy and expect to feel tired for sometime afterwards. It seems that the younger an dfitter you are going in the quicker you recover afterwards.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Jan

My suggestion is to speak to your consultant and the nurses on the Myeloma UK helpline to explain the figures. There are probably other factors to take into account such as overall fitness and other blood counts when trying to interpret the pp levels.

Hope this helps and that your husband is keeping well.

David

[davidainsdaleParticipant]

Hi All,

Perhaps we should ask Myeloma UK to do some badges for us to wear at 5, 10 15, 20 years post diagnosis – bronze, silver, gold, platinum !

David

[davidainsdaleParticipant]

Hi Maggie

Thanks for this helpful feedback. Why just the London marathon? I am sure that this would also apply to other events and would provide useful publicity for fundraisers during the year.

Hope this helps.

David

[davidainsdaleParticipant]

Hi All

I have to say that I share some of hartsdown views at the top of this post.

I wanted to toss in a tenner to help runners on the London Marathon and spent ages searching for a runner who was raising funds for Myeloma UK. It doesn’t help that there are lots of different online charity donation platforms. I did eventually find the team of 27 runners mentioned by Maggie, but don’t understand why the Myeloma UK website doesn’t provide this sort of information up front which would be a s ort of one stop shop?

Hope this helps.

David

[davidainsdaleParticipant]

Hi Jenny/Linda

My journey began in 2013 when I was 59. I was in a pretty bad state with spinal compression and could hardly move for 6 months due to back problems. 18 months of treatment followed with radiotherapy, CTD and stem cell transplant. My quality of life is much improved and pps have only just started to rise slowly again, so that’s six years on and I have a bit further to go to catch Linda.

I found that the early stages of diagnosis were very difficult and as a result I started the West Lancs and Merseyside myeloma support group for patinets and carers. This has been going 3 years now and is very successful.

They say that it is a marathon, not a sprint – and I think this is the best way to approach myeloma. They also say that myeloma is very individual which also seems to be true, particularly in the way patients respond to treatment.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Linda

That’s great news and inspiration to us all. Thanks for posting this. Looking forward to seeing something similar in 10 years time !

Good Luck

David

[davidainsdaleParticipant]

Hi Robert

Good luck with your recovery, expect to feel tired for a months.

Fantastic to see that your youngest is running the marathon today, is there a weblink for donations?
David

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