[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

[davidainsdaleParticipant]

Hi

I had my stem cell transplant over 4 years ago, and yes , all my hair fell out but it did grow back quite quickly and for me was not a problem. I think it is probably different for women rather than men about how they feel.

I suggest that your sister has a chat with your local Macmillan centre. They deal with all types of cancer and regularly give advice to ladies who are on treatment and lose their hair.

In terms of getting through the stem cell transplant, my suggestion is to keep as fit and active as you can an dthen focus on things you would like to do afterwards.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Ian and All

Just a comment along the lines that the Policy and Public Affairs work which Myeloma UK do to influence the organisations such as NICE and NHS is really important.

It’s great that new drugs are coming along but no good if patients can’t access them – remember the original campaign by Eric Lowe ago to get patient access to Velcade?

The reality is that we live in a world where policy and politics cannot be ignored so it is vital that Myeloma UK fights for our corner.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Alex

I am also a patient. Diagnosed 5 years ago and had my SCT 4 years ago.

Sounds like you need to speak to a haematology specialist, have you thought of asking for a second opinion? This should not cause offence. You may also like to enquire about the extent of any genetic profiling that has been done. This may help to add to the available information.

The Myeloma UK Helpline nurses are very helpful and will be able to offer some advice on the general rules for stem cell transplant. My understanding is that this is generally based on overall fitness and extent of response to first line treatment.

Hope this helps

David

[davidainsdaleParticipant]

Hi Sue

Just seen your post about itchy skin problems.

I think my skin is certainly more sensitive and/or itchy since having myeloma treatment. It always seemed to be linked to Zometa infusion but might have been the SCT or other chemo. It seems to come and go every few weeks and is more of a nuisance than anything so it is hard to complain – I find that Epiderm which is available from Chemists with prescription usually works.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Paula

I was great seeing your blog, very interesting and thoughtful. Another way to reach out to all of those affected by myeloma.

Good to see that you enjoyed the Birmingham Infoday -MUK held their North West Infoday in Liverpool this year and it was a great success.

Wishing you well.

David S

[Author]

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