[margarethParticipant]

Dear Tony,

I was diagnosed with Smoldering Myeloma in 2001 at 53. The myeloma went aggressive in 2005, I had a stem cell transplant in Feb 2006. I was Myeloma free until 2009 and had second Stem cell in Nov 2009. Again myeloma free until 2012. I was put on a maintenance of lenalidomide (Revilimid), this worked for me until 2016. I went on a drug trial up at Oxford, although this did not work for me, it was a great success for newly diagnosed patients. I’m now on Bendamustine and Thalidomide, whicwhichk is working for me at the time of writing this..

I only retired from work (part time) August the 5th, so this week.I know what you mean about the fatigue, I learnt that I planned my life around the fatigue. So if there was a wedding or something similar I would make sure the day before and the day after I would make sure I had easy days planned. This really worked for me.

I live alone since 2002. I have seen my 2 daughters get married held my baby grand daughter who is now coming up for 4years, been to my niece’s wedding, held her baby daughter now going to 3 in November, same with my nephew.
The best thing is to stay positive. The treatment is 100% better these days, and I’m sure you will a lot longer than the 10 years. Try not to let Myeloma be central to your life all the time. You are still Tony the same man before diagnoses. Margaret in Berks

[tonyblackstoneParticipant]

Hi Margaret

Thank you for sharing your story, it’s fantastic that 18 years on you’re still going strong and living your best life.

I’m obviously still very early in my Myeloma journey, however I’m now absolutely convinced I have a long and fulfilling road ahead, be assured I’ll be maximising everyday so that I squeeze every drop of life juice out 🙂

Very best wishes for the future, enjoy your well deserved retirement and the grandchildren 🙂

Kind regards
Tony

[margarethParticipant]

Dear Tony,

It’s great to hear your are being strong and positive. I know what it is like when you hear the words cancer and then Myeloma, a cancer you might never had heard of. Then you try and digest the words terminal and the words, how long you might have with it.
You do have a fight on your hands coming up, but it is a fight I believe with all my heart that you will win. The treatments now are so much better, and they are getting better all the time. There are so many dedicated people who are working hard to find better treatments and of course a cure.

Take care, you know your body better than anyone, so let your body guide you on both good days and days when things aren’t so good.

With best wishes Margaret

[andrewrParticipant]

Sorry for it being so late but I thought my story might be of interest.

I was diagnosed in 1997 but only started treatment in 1999 when I had chemo followed by a sterm cell transplant. Post transplant there were very few treatments available and bisphosphonates were a new and novel treatment!

I had a second transplant in 2015 and relapsed in 2017 and am currently on my 33rd cycle of Lenalidomide and prednisolone and have plateaued at a reasonably low level of paraproteins.

The real story is what Myeloma UK, some very great clinicians and Eric Low have achieved in the 22 years. There are a plethora of new drugs on the horizon particularly the anti-virals, genome based drugs and Car T treatments. From this point of view whilst it’s interesting that some people have survided 20+ years the key fact is that more average patients will survive for much longer and may even see a cure.

I believe that the chemo’s we see nowadays and have seen for decades will soon be considered as barbaric when targetted treatments become the norm. The concept of destroying all your immune system with drugs in the hope that some can be fed back and re-establish your immune system before the cancer re-establishes itself will join bloodletting in the museum of science.

The object now is to play for time to ensure you are around when the new treatments become mainstream

[tonyblackstoneParticipant]

Hi Andrew

Thank you for sharing your story and your thoughts.

I’m inclined to agree with your view in regards to the Chemotherapy and the way we’re already seeing this change and as you say with the new drug treatments I too am sure we’ll be seeing a whole different approach that delivers a far better overall outcome for patients, not to mention a better quality of life whilst undergoing the Chemotherapy.

I wish you all the very best on your Myeloma journey.

Kind regards
Tony

[margarethParticipant]

Hi Andrew,

Thank you for your email, I agree with all the things you said about chemo. When you and I were first diagnosed there was never the word cure talked about. I always asked and often wondered if it was because Myeloma is so different in each patient, also it’s ability to morph so it becomes different. I now have heard the word cure mentioned. I actually said to my consultant a couple of months ago, “If I had to have Myeloma, I wish it was now with all the new treatments and the research going on”. I do believe that a cure will be found, and agree that management treatment will get better without the use of chemo.

The consultants know how important quality of life is for us and they want the best. It must be exciting times the the researchers and the hematologists who are dedicated to find better treatments and a cure.

I also agree with you that keeping well and staying around until better treatments become available is paramount to surviving into my 80s 90s. I have a amazing grand daughter who will be 4 the end of September, I want to be around to see her grow up.

I wish you well Andrew, we will keep fighting.

Best wishes Margaret

[davidainsdaleParticipant]

Hi Tony and All

A report in the Times Business section this weekend may be of interest. Glaxo are seeking market approval for a new drug Belantamab for myeloma patients who have already had three lines of treatment. Perhaps this is the one we have been waiting for? Here is a link:

https://www.gsk.com/en-gb/media/press-releases/gsk-announces-positive-headline-results-from-the-pivotal-dreamm-2-study-for-multiple-myeloma/

Hope this helps
David

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