I have arranged to go to my 1st Myeloma UK meeting on Monday, at Bury. The groups that I have already joined include those more local, with all kinds of cancers, although the similarity in experiences is amazing. The only thing upon which we cannot pass comment is radiotherapy.

As Monday is my heavy chemo day, and next Monday is my Cycle Review…[Read more]

The reason why I am up at this hour, is that Monday is my heavy dose day – and I am in that zone where I am completely knackered, but cannot sleep. It usually wears off by Wednesday.

Over the last 4 years since diagnosis, it feels as though I have lived through the first 2 lines of Bohemian Rhapsody.

I do not want to labour the point, but the problem is political – and it will require a political answer. Not only Myeloma patients are affected by the CDF decision, and it makes little sense for the minister to make fatuous commitments to 28 day diagnoses – then deny the treatment upon the basis of cost.

However, I have taken a practical…[Read more]

A fact is not a slur. It illustrates the callous disregard of those in charge towards those of us at the mercy of their decisions. I think that I am entitled to be angry at the posturings of amateur politicians with little grasp of the real world.

However, I did not even mention TTIP/ISDS, which will signal the death knell of the NHS. Politicians…[Read more]

Jeremy Hunt has previous for making commitments, without checking whether he can honour them. My blood tests take anything from 7 to 10 days for a result, and I invariably require a second test before my next chemo cycle can start.

He will get a bloody nose, if he continues with his threat to impose contracts on consultants later this month.

He…[Read more]

As far as I am aware, Velcade is not affected by this. This is apparently the `standard’ Myeloma treatment available across Europe, from which I suffered crippling side effects – and it did not work.

The next down the line, for me, was Lenalidomide/Revlimid – which was only effective for c10 months – so I transferred to Pomaolidomise/Invomid in…[Read more]

No it isn’t, but the attached Word document is.

I have no idea why this website adds a load of unnecessary guff between paragraphs. This is a legible version of my previous post.

I started with Thalidomide and Dexamethasone in May 2011, which resulted in an infection – to my heart. This meant that I had to have my aortic valve replaced in April 2012.

I had a stem cell transplant, which kept m…[Read more]

<p class=”MsoNormal”>I have no idea why this website adds a load of unnecessary guff between paragraphs. This is a legible version of my previous post.</p>
<p class=”MsoNormal”><span style=”font-size: 10pt; line-height: 115%; font-family: Arial, sans-serif; background: #fbfbfb;”>I started with Thalidomide and Dexamethasone in May 2011, which…[Read more]

I started with Thalidomide and Dexamethasone in May 2011, which resulted in an infection – to my heart. This meant that I had to have my aortic valve replaced in April 2012.

In December 2012, I had a stem cell transplant, which kept me in partial remission until November 2013. I was then put on Velcade, which crippled me – and did not work…[Read more]

<p style=”margin: 0px 0px 1em; padding: 0px; font-size: 11.952px; color: #666666; line-height: 1.3em; font-family: ‘Trebuchet MS’;”>I started with Thalidomide and Dexamethasone in May 2011, which resulted in an infection – to my heart. This meant that I had to have my aortic valve replaced in April 2012.</p>
<p style=”margin: 0px 0px 1em; padding:…[Read more]

My oncologist has responded, to state that she is unaware whether this will apply to existing patients – or prevent new ones being given the opportunity. However, this has to be clarified.

Whether, or not, is is disgraceful to be put in the position where I might get treatment – and someone else not – merely because of a discrepancy in timing.

I have had 1 stem cell transplant, which gave me 10 months’ remission. I was unable to generate enough stem cells for a 2nd, so the process was abandoned – and this is extremely expensive. The mortality rate for this process increases significantly as it is repeated, and no one is ever likely to have more than 2. I also have 7 younger siblings,…[Read more]

Gulp!

I do not know what happened there?

Bendamustine and Carlfizomib are apparently alternatives to Pomalidomide, but I do not know the funding status for these.

I was moved from Lendex (Revlimid & Dexamethasone) to Pomalidomide (Inmovid) & Dexamethasone in July. I await a response from my Oncologist as to how this will affect me, as my next cycle will start on 21st September.

As far as I am aware, <span style=”color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida…[Read more]