Ibrutinib

Not sure about Waldenstrom, but we have a number of folks on ibrutinib so if it’s the best way forward for you and your Consultant thinks it is then push for it.

I think it's more of less been accepted that waldenstrom responds to ibrutinib, but the cost is obviously prohibitive ..there are waldenstrom patients who have been trialing  with good results and as far as I know a decision will be made in late 2020 ...but as we know the drug companies and NICE change the goal posts ...my consultant may very well feel it's a waste of nhs money for one patient whrn chemo is a much better value option in the short term ..and as results are usually a snapshot ..the short term is usually the way it's viewed..I just wanted to get a broader view of where ibrutinib and similar drugs were going in the scheme of waldenstrom patients  ..as we cannot be cured 

There have been a few folks with waldenstrom come through the site over the years. You can put waldenstrom into the site service h tool at the top and have a look at the threads and if required put up a post and see if they are still using the site.

I think you keep your big feet in the doors of your team and push as why not you get the chance if the drug?

I also had a rare type of NHL and was fortunate that my team were willing to pay the cost of a new drug that had come in from the USA @ £80 a day and it did a good job but some times good things come to and end...... so ended up on the Stem Cell Transplant Rollercoaster - but three and half years on post SCT - I am still in remission.

Keep pushing the doors.

I'm truly heartened to hear that SCT has provided a remission for you..I was offered SCT  as an option, I decided that having researched it to the best of my ability it was something I wouldn't cope with ..so deep respect to you for being  fearless or at least putting your fear into perspective. I totally appreciate that drugs such as ibrutinib are not without their issues and do stop working at some point .I don't want to diss my oncologist in any way ...but I also accept that having been let down a number of times by him the worst being that he forgot to refer me for a fairly local ibrutinib trial .I appreciate that his clinics are full to bursting .but there have been other issues which leave me feeling a bit cast adrift..maybe I'm not pushy ..but I get the impression that he is one that would dig heels in further if I did get a bit forceful ..I'm ever hopeful 

Wishing you a very long and happy remission 

Hi, your understanding is correct I believe and just in case you have not seen it here is a link to the NICE guidelines

https://www.nice.org.uk/guidance/ta491

You may want to ring the helpline here or at Lymphoma Action to ask if the has been any changes to the guidelines and what the latest is and if they are as this link infers then I would be raising this with the consultant and seeking their support to get the drug if that's your preferred option at this stage.

John 

So sorry to hear that you have had issues with falling through the NHS system gaps. John has given you some great information so please follow it up.

I would be arranging a ‘face off’ with your Consultant and should you not receive a clear commitment to move this forward I would be looking to get a second opinion from other Cancer Centres. It is your life and you do need to push for the very best.

Back in early 2014 when my 14 year condition went out of control Allo SCT (with cells from my brother) was the only route available at that time to hit remission. It was a big roll of the dice taking two goes as the first SCT did not work. 

Stem Cell Transplant has moved on immensely over the years and the success rate is now very high with only those going into the process with other underlying medical issues facing real problems.

All the best with getting your pointy elbowed into the doors of the system.

Please keep us up to date.

You are allowed to change your consultant

There is no guarantee you will get anyone better though.

They all tend to sing from the same hymn sheet.

Yes ..I realise that they have limited options and funds for treatment..I don't expect anything more than anyone else;However in this case my consultant actually asked me if I would consider a trial and I agreed ..he went on holiday the next day..and at my next appt 6 weeks later he told me that he had forgotten to put me forward . We are all human and I know they are busy .My employers asked him to provide a simple report of my condition in the November due to my absences during my lowest point ..and nothing came through until I think February of the following year, they didn't ask for a great deal of information just that they could make reasonable adjustments to my working pattern etc.

When I was going through ritux infusions and things were not going well,I had very little support or information from him or my support nurse ..and those are just a few incidences..I very much feel like I'm in this pretty much alone...not feeling sorry for myself, because I suppose I feel lucky to have had some treatment...and after all as you rightly say I probably wouldn't get alot more support from any other consultant.

Being up in the Highlands we do have limited access to experts and resources but my team were great and totally get the challenges and are very proactive.

They actually asked if my case could be put out for review both in the UK and abroad and the combined recommendations were reviewed and my wife and I sat with my team and we went through the various (limited) options to make a plan and go for it.

I was put down to Newcastle to see a skin specialist and was about to book a flight to Guys & St Thomas in London but was able to set up a Video Conference with the area Specialist.

I think doors can be pushed and it looks like it is in your hands to do the pushing.

You are fortunate i think..or maybe you inspired your team to help you to the fullest extent ..thinking about the specialist I have seen they are probably exhausted and have nothing to give above what they have to ..my guess is that if I pushed the door open ...it would lead to the back street and warned never again  to darken his door lol..in the meantime  will keep my eye on what is going on in the wider world of treatment ...and hope that I'm not asking for the impossible when the time comes