[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

[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

[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

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