[alexplypinParticipant]

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 and Zometa day, it will be a struggle – but, hopefully, worth the effort. The campaign against the CDF decision has to be on behalf of all those affected by the treatments to be withdrawn. I am a 38 Degrees member as well, and have campaigned strongly against TTIP on their behalf. My frequent visits to surgeries, clinics, and patient groups have meant that I have got the message out to many people who were previously unaware of this iniquity. It would not be a huge stretch to tag our protest as a living example of the potential implications.

 

[alexplypinParticipant]

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.

 

[alexplypinParticipant]

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 approach to this problem – not just via this forum. I have contacted the other Support Groups with which I am associated, my local MP, and Heidi Alexander, to see what – if anything – is being done about it. If we sit back and do nothing, nothing will happen – and I am not quite ready to put on my wooden overcoat.

[alexplypinParticipant]

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 are trying to break the NHS, as justification for handing it over to the private sector. If the Pomalimide stops working, I have no idea what happens next. In those circumstances, I would prefer that my fate were decided by a medical professional, rather than a bean counter.

This is a political issue, and will not be resolved without some action at a political level. Fortunately, last Saturday gave a glimmer of hope that there is an alternative.

 

[alexplypinParticipant]

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 is perfectly happy to scoop up health professionals – many not qualified to NHS standards – in conflict with Immigration Policy. If and when UK replacements are trained, will these unfortunates be deported whence they came?

I have e-mailed Heidi Alexander today, to see what she believes are the NHS priorities.

He exhorts the plebs not to go to A&E, then turns up there mob-handed on a family trip, when his little Johnny gets a sniffle.

[alexplypinParticipant]

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 August. Initial indications are encouraging, but I am running out of options. The surreptitious meddlesome top down privatisation of the NHS, and the horrors of TTIP/ISDS, continue in the background. Sooner or later, it will be a bean counter – not a doctor – who will decide my fate.

[alexplypinParticipant]

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

[alexplypinParticipant]

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 me in partial remission until November 2013. I was then put on Velcade, which crippled me – and did not work anyway. So, in March 2014, I was transferred to Lenalidomide and Dexamethasone. I had a break from this in November 2014, when a failed attempt was made to harvest more of my stem cells for a 2nd transplant.

Most patients are probably aware that subsequent stem cell transplants have much higher mortality rates than previous ones, and the patient is not the decision maker for such an expensive procedure. I also have 7 younger siblings, willing and able to donate whatever is necessary, but this also carries additional risk – which the professionals will not consider.

In April of this year, I reverted to Lenalidomide with Dexamethasone, and was transferred to Pomalidomide with Dexamethasone in August – when the Lenalidomide had stopped working. The Pomalidomide/Dexamethasone regime seems to be working, and the Hospital Pharmacy has apparently told my Oncologist that my treatment will not be affected, as an existing patient. If it works for me, I do not see why it should be denied others.

For those that have not seen it, this is the CDF Report from last Friday.

• This reply was modified 9 years, 6 months ago by  webteam. Reason: Removed extra tags

[alexplypinParticipant]

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 anyway. So, in March 2014, I was transferred to Lenalidomide and Dexamethasone. I had a break from this in November 2014, when a failed attempt was made to harvest more of my stem cells for a 2nd transplant.

Most patients are probably aware that subsequent stem cell transplants have much higher mortality rates than previous ones, and the patient is not the decision maker for such an expensive procedure. I also have 7 younger siblings, willing and able to donate whatever is necessary, but this also carries additional risk – which the professionals will not consider.

In April of this year, I reverted to Lenalidomide with Dexamethasone, and was transferred to Pomalidomide with Dexamethasone in August – when the Lenalidomide had stopped working. The Pomalidomide/Dexamethasone regime seems to be working, and the Hospital Pharmacy has apparently told my Oncologist that my treatment will not be affected, as an existing patient. If it works for me, I do not see why it should be denied others.

For those that have not seen it, this is the CDF Report from last Friday.

• This reply was modified 9 years, 6 months ago by  webteam. Reason: Removed extra tags

[alexplypinParticipant]

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.

 

[alexplypinParticipant]

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, but they no longer consider transplants using cells not generated by yourself – again because of the risks.

I have e-mailed my Oncologist, Myeloma UK, Maggie’s Community, and my local MP in order to find out what I am supposed to do in November. I will not go gentle into that good night.

 

[alexplypinParticipant]

Gulp!

[alexplypinParticipant]

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.

[alexplypinParticipant]

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 Grande’, sans-serif; line-height: normal;”>Bendamustine or Carlfizomib are the only other alternatives – and I do not know the funding status for these.</span><span style=”color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; line-height: normal;”> </span>

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