Myeloma Forum | alexplypin | Activity https://forum.myeloma.org.uk/members/alexplypin/activity/ Activity feed for alexplypin. Sat, 11 Apr 2026 21:50:51 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 18913ffc6787757b567224d1f143d072 alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/4/#post-124156 Tue, 15 Sep 2015 17:29:46 +0100 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]

]]> 0fa4a4989d34600d244acb9e54e107b2 alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/3/#post-124145 Tue, 15 Sep 2015 00:32:41 +0100 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.

 

]]> 92ea3f9371c3dd79e4d352b15ade00fc alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/3/#post-124143 Mon, 14 Sep 2015 23:56:31 +0100 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]

]]> 5c38c7c9914ebadb643e4ad75a945bbb alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/3/#post-124140 Mon, 14 Sep 2015 20:43:31 +0100 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]

]]> 2c39d1fec240e1847206b83a88fa86ea alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/3/#post-124134 Mon, 14 Sep 2015 17:58:06 +0100 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]

]]> 14984ee3a07628dc66e6f0a4ead4938d alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/3/#post-124050 Thu, 10 Sep 2015 05:46:30 +0100 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]

]]> d03e0cc72de7fc842a311eb897d4a817 alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General https://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/2/#post-123989 Tue, 08 Sep 2015 01:05:23 +0100 No it isn’t, but the attached Word document is.

]]> 77145a554a1f8fbf203d69eed7fb05f3 alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/2/#post-123988 Tue, 08 Sep 2015 01:03:28 +0100 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]

]]> 06903bfedf31d09c60595b2618ad2fd4 alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General https://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/2/#post-123988 Tue, 08 Sep 2015 01:03:28 +0100 <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]

]]> a3a62b48c23922422110b90782e64898 alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/2/#post-123986 Tue, 08 Sep 2015 00:59:19 +0100 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]

]]> 31e08f77619bd9a29d7fe78bcaf98c05 alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General https://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/2/#post-123986 Tue, 08 Sep 2015 00:59:19 +0100 <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]

]]> 522eae55f6d13fe341ed39bf13061c2d alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General https://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/2/#post-123959 Sun, 06 Sep 2015 15:12:09 +0100 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.

 

]]> 5b4780b5be0d96a371d0c916f695bb80 alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/#post-123928 Sat, 05 Sep 2015 13:19:50 +0100 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]

]]> 57fbd3a3de0e2d7bcae353ee3e71daab alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/#post-123923 Sat, 05 Sep 2015 09:48:09 +0100 Gulp!

]]> b435f3b6c6c16e660dc044174725cb68 alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/#post-123921 Sat, 05 Sep 2015 09:21:29 +0100 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.

]]> aa060724667c8fd763267b062fc990ad alexplypin replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/#post-123920 Sat, 05 Sep 2015 09:19:27 +0100 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]

]]> 17c843f5828df14926c09fbebb935307 alexplypin became a registered member https://forum.myeloma.org.uk/activity/p/40696/ Sat, 05 Sep 2015 09:12:21 +0100 0