Hi Everyone - I posted a few times in the old MM support group, but I found reading the advice more helpful. I don’t see much activity here and I think it’s partly because it took me a few minutes to figure out how to Create a New Topic.
I was diagnosed three years ago at age 42. I’ve been through a few courses of treatments starting with RVD (revlimid, velcade and dexamethasone), then proceeded to autologous stem cell with only a partial remission, and I’m now fairing well on Darzalex. My red and white counts are low but not as low as they were on RVD. I have more energy than I have in years as I progressed through treatment. In retrospect, I had symptoms when I was in my mid-30s.
Although it didn’t feel possible at the time, there are ways to cope through this, so if you need advice as a new bee I think a lot of us can help you here.
Reading about others side effects and tips on what worked best for them, honestly helped me get through the toughest days. Everyone else’s posts gave me courage to get through some tough times. I was shy and scared of my diagnosis at first so an online support group was great for me. I hope everyone keeps the lines of communication open for others like me : - )
Jayne
Hey Jayne,
We’ve had a few changes and some people have found them a bit difficult to work around, but as it seems you have found, with a little bit of perseverance it can all be worked out.
It’s great to hear that you’ve had some success with your treatments and hopefully others may read this and consider mentioning it to their medical team as another treatment option. It’s only by sharing our own experiences that others may consider these in their own treatment regimes. As they say “Onward and upward”
Thanks for sharing.
Merl from the Moderator Support Team
Hi there Jayne
Thanks for posting. We know that some people have had a bit of a challenge trying to figure out how our new platform works, and we’ve got a collection of “Slide Guides” for you. Click on the left hand tab below the banner:
There you’ll find a collection of step-by-step guides for doing almost anything that you might want to do here.
And anytime you need help, just post or send us a message by clicking on our avatar
and then on
And we’ll respond. We’re pretty good that way!
Thank you for your very positive words to your fellow members. You’ve helped a lot of people by taking a few moments to give some encouragement.
All the best to you
Seenie from ModSupport
Hello, MM community members
We’ve had a really interesting and upbeat message from Jayne, who hasn’t posted in a while. We hope that reading her message, “Having a positive experience with Darzalex” puts a little sunshine into your day, as it did ours.
If you’ve been away for a while, and forget how to log in, simply go to the home page, enter your email address (the one this came to) and then “Forgot my password” (even if you remember it). Then just follow the instructions.
If you’ve had a bit of difficulty in getting used to our new platform, please have a look at the Slide Guides which are available to you right from the home page of the community by clicking on the “How to Use this Site” tab:
All the best to you, and we hope that you’ll visit and say hello soon.
Seenie from ModSupport
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