[bandityogaParticipant]

We saw the consultant today and Ian’s MRI scan showed the myeloma was active on his lower back. He is starting pomalidomide and dex next Monday. I only pray that it works as this is the last line of treatment.

[rebeccaRParticipant]

Hi Maureen, Good luck with the pom – this could be the one that works its magic for you so fingers crossed. I am sure Ian has not gone though the whole series of treatments/different combinations of therapy? so just for peace of mind have to hand the best experts in the country for second opinions/options.

Good luck

[bandityogaParticipant]

Hi Rebecca

Ian has not had a whole lot of of combinations/treatments. He has had CTD, Velcade and dex and revlimid and dex then SCT. We don’t have a specialist in myeloma at our hospital so I have phoned Myeloma UK and asked some questions. There is a trial for early entry to daratumumbab near us but they said Ian wasn’t suitable so we will have to find out why as he meets all the criteria on the web. I also asked about mixing a combination of 3 treatments and was told they were only licensed for 2 treatments so I am thinking this would be end treatment. I will ask for a second opinion regarding combination of treatments.

Ian is a lot fitter than he was first diagnosed and I do pray that the treatment will work and give him many more years.

[rebeccaRParticipant]

Yes looking at the web he appears to meet the criteria but after the velcade/dex did he have a full course of rev/dex treatment or was it just a quick top up pre Sct to lower numbers further? Otherwise can’t understand shy he is not eligible so would chase that up as perhaps that trial would be better than the pom? Either way Maureen I would seriously look to going to a top person in London for a case review/second opinion of the best way forward. When I had a second opinion it was very reassuring to speak to a leading expert. for once, and hear their suggested options based on valid expertise/insight – regardless of where you are ultimately treated. When I relapse I will always now go for second opinion – even a third when critical -(I am at a lovely hospital but it is too little). Choose well and you will be speaking to those leading the field with their knowledge. These are our most important decisions in life so let’s ensure, wherever we can, we consult the leading lights…I waited 6 weeks on the NHS – but was in no hurry – guess a private consultation would be quicker…combine it with a little break. It is very reassuring at difficult times when you feel you are taking control of your own destiny – or as much as you can – and that’s worth something in itself. It is good to hear Ian is still very well with it all which bodes well for the next treatment cycle. I do recall a Scottish lady who chose to have treatment in London once but cannot remember the detail of it all. Everything is worth considering – why not ask the helpline about it as they know all the best people and advised me who to ask. Take care.

[deanParticipant]

Hi Maureen

I defenitly agree with Rebecca on a second opinion. There has to be away for you to be able to get the next set of drugs for when your husband may need them for later. I’ve also got a Myeloma specialist as back up & he just double checks my team are making the right decisions. His miles away but worth the trip.  It makes me so angry that the drugs are out there but you have to go through all the extra stress to get them. If it helps I think the new drugs are as you said : daratumumab, then elotuzumab & Panobinostat. So there is more drugs out there for your husband it’s just getting them. I also remember my Myeloma specialist saying to me that if Velcade etc has stopped working, it doesn’t mean you can’t go back to them starting from the first ones which stopped working. After a break from being used they can become effective again & changing the mix. It’s all about planing & keeping your guns in reserve etc was his words to me. Good luck and hope it’s helps.  Regards Dean

[bandityogaParticipant]

Hi Rebecca/Dean

We are going to ask to see the specialist myeloma consultant at The Beatson in Glasgow which is only 30 miles away. It will hopefully put our minds at rest and let us know why he wasn’t considered for the trial. If we aren’t satisfied, we will ask to get another opinion in London, although the funding in England is different to Scotland. Pomalidomide is available in Scotland but not England and there lots more trials in England.

The woman who went to London for her treatment lived in Inverness and her name was Eva. She was very knowledgeable and I spoke to her a few times. Sadly she passed away a few years ago.

I will keep you updated.

maureen

[bandityogaParticipant]

After a long talk with another consultant, we decided that the best way forward was to use the next treatment in line which is pomalidomide. The daratumumbab trial was full in our area and it was only as single use without dex etc.

We were very happy with our consultant as she took lots of time and explained everything we needed to know. If Ian gets into complete remission, he may get another SCT but it depends if he can harvest as he had difficulty first time around. He started the 4mg of pomalidamide with 40gm of dex on Tuesday and apart from a few sleepless nights, he seems to be doing fine but it is early days yet. I hope that it works and we are taking one day at a time.

Maureen

[stanley-1960Participant]

Hi Maureen,

Sorry to hear of Ian’s relapse but glad your are happy with the way forward on Pomalidomide. I hope this brings Ian back to a position for a possible second SCT.

All the best to you both,

Stanley

[bandityogaParticipant]

Thanks Stanley, he doesn’t seem to have too many side effects yet apart from lack of sleep due to the dex. Hoping that pomalidomide will get Ian back into remission.

Hope you are doing well.

Maureen x

[andygParticipant]

Hi Maureen.

I’ve not had any serious side effects with Pomalidomide and Dex and I’m currently in the middle of cycle 37.

Hopefully it gets to work really well for Ian and he achieves remission.

Every day is a gift

Andy xx

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