[alexandraParticipant]

Hi David

I really need to say a huge thank you for all your posts regarding Daratumumab treatment. I had DVD treatment starting January 2023 and have been on single agent Daratumamab for a year now.

Your posts kept me going when I was really struggling with the side effects, your positivity and updates on Daratumamab gave me hope that it could work for me too.

It does work and it is holding my Myeloma completely stable.

Thank you again
Best wishes
Alexandra

[alexandraParticipant]

Hi Dave
I just wanted to say that you’re not alone in this and trying to process it all is extremely difficult in the beginning. I know that for me I couldn’t imagine a day when it wasn’t the first thought that entered my mind.

I was diagnosed as stage 2 at age 43, this was 2 years 5 months ago. I didn’t choose to go down the route of a stem cell transplant so I’ve never got into remission but i am stable and have an excellent quality of life.

I understand how difficult it is to talk to loved ones as you feel as if your burdening them, even with friends I find the subject of cancer can be taboo and people can feel uncomfortable about discussing it.

There are so many positive and inspirational stories about people that are going through the same thing, my advice is to focus on these and not the negative ones as this works for me.

My life is wonderful now and I never guessed I would be able to get it back again. I appreciate every day and love spending time with my family and friends. Good luck on your journey and to getting back to being you again.

[alexandraParticipant]

Hi Shebee
I’m not sure how long Revlimid works for but I did meet someone at one of the Myeloma meetings who had been on it for 5 years and had a fantastic quality of life. I also chose to decline a stem cell transplant and I think it’s a very difficult but individual choice to make. The most important thing for me is knowing that family and friends are supportive of my treatment decisions.

[alexandraParticipant]

Hi Jenjam
My heart went out to you when I read your post, It’s so frightening especially when you have children.
I was diagnosed 2 years ago at the age of 43 and I can remember clearly how it felt that my world had come crashing down around me.
It’s good to hear that they’ve found it early and it will give them time to work out the best course of treatment for you.
I know it doesn’t feel like it now but things will feel normal again. It takes a long time to get your head into a place of acceptance.
I’m really positive about the future now and don’t allow it to dominate my life. My daughter doesn’t even think about it anymore.
There are so many success stories out there and when you do get to meet others with Myeloma it will really help.
Stay strong and know that your not alone.

[alexandraParticipant]

Hi
I’d also be interested to know if cbd oil would be something that the doctors recommend. I only had a partial response to chemotherapy, this prompted me into taking curcumin. Over the last 12 months i have found this has given me similar results and continues to bring my paraprotein level down. If this stops working for me then I would be willing to try cbd oil as another alternative.

[alexandraParticipant]

Hi there
I remember the constipation well, it can be so painful and debilitating. If it gets too bad then I would phone the hospital for advice, I had to do this and whilst it was embarrassing it was such a relief when they did help me. If it’s manageable then I can highly recommend drinking a glass of prune juice every morning. The other really important thing is lots of water especially before and after the velcade injections.

[alexandraParticipant]

Hello
It really is a very scary time when your first diagnosed. For me that was two years ago and I would never have believed that life could be normal again. I remember the huge bag of drugs that they gave me along side chemo. I think because they have to act so fast it’s so overwhelming and suddenly your trying to cope with the side effects and also getting your head around it. If I could’ve seen then how well I would be feeling now it would’ve been such a comfort to me. I think mindfulness and positive thinking really helps and also accepting that there will be bad days and that’s ok too.

[alexandraParticipant]

Hi Katz
I think it’s a very personal choice whether to have a stem cell transplant or not. Like your husband it was also recommended to me that I have a tandem transplant. This was two years ago and I decided not to go down the transplant route. After the initial vtd therapy I continue to remain well and am not on treatment although my paraprotein did rise quickly. I have been taking a high dose of curcumin daily and this has helped me to remain stable. Best of luck with what is a very difficult decision.

[Author]

Posts