Hi everyone,
It is with a very heavy heart and a head in total chaos that I join this forum in the hope that my knowledge will increase and my spirits may be lifted.
I was diagnosed with MGUS when I was 34 and pregnant, after a blood test accidentally picked up high paraprotein levels. I have then been checked regularly and it was confirmed this week, on my son's 6th birthday, that I have a large lesion in my spine and 30 percent plasma in my bone marrow, confirming multiple myeloma.
I know my profile is rare for MGUS as I was diagnosed at 34 and am a white female. Also, the progression rate from MGUS is very low. So it seems I have not been lucky to become this rare case.
It has only been two days since diagnosis and my head is in a spin, as is my husband's. I am devastated I may never see my little boys grow up. We see the consultant on Tuesday at Addenbrookes in Cambridge, UK to hear the treatment plan.
I am just so terrified right now.
Lorna xx
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5 posts
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Lorna - Name: Lorna
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 13 June 2018
- Age at diagnosis: 41
Re: 41-year-old female with multiple myeloma after MGUS
Lorna,
I know you will get encouraging news from expert multiple myeloma folks here in the forum.
There are many new treatments just released, and many more in development. This truly is a golden age for myeloma research. When one treatment stops working, another is available.
Your age is a major positive. Younger folks seem to have stronger responses, and they tolerate the treatments better.
We all look forward to hearing from you again!
I know you will get encouraging news from expert multiple myeloma folks here in the forum.
There are many new treatments just released, and many more in development. This truly is a golden age for myeloma research. When one treatment stops working, another is available.
Your age is a major positive. Younger folks seem to have stronger responses, and they tolerate the treatments better.
We all look forward to hearing from you again!
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: 41-year-old female with multiple myeloma after MGUS
Thank you so much Jimmy. I am finding some hope in the stories I've read on here so far. Just want to the consultant appointment on Tuesday done so that I know the exact diagnosis and treatment plan, and possibly the prognosis.
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Lorna - Name: Lorna
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 13 June 2018
- Age at diagnosis: 41
Re: 41-year-old female with multiple myeloma after MGUS
Lorna,
Take heart. My heart goes out to you, and I know where you are coming from. Today is my son's 16th birthday, and one year ago, I spent his entire birthday in tears because I thought it was going to be my last birthday celebration with him. I'd been diagnosed just three months before and things weren't going well. I couldn't see a way forward.
But I was fortunate to have great doctors who with the help of second opinions from myeloma treatment centers found effective treatments even for my difficult case. It's terrible to be so young and have to face this. I'm a decade older than you, and I can only imagine how hard it is to have such a little one. But take heart. I've learned so much in this past year. I was floored at first, and overwhelmed, but have since learned there are so many options for myeloma patients today, and those options are expanding month by month. Often, a drug will work for years and years. So take heart. So many people on these forums have been living with myeloma for years. Find a doctor whom you trust, and don't be afraid to ask lots of questions and get second opinions if necessary.
Today, I ran five miles early, as I do every morning these days, then came home and baked my son a birthday cake, something I never imagined I would be able to do again. And I feel great, practically normal. It isn't easy, and last year was tough with a stem cell transplant, but we really have no choice. I fight hard, and I fight hard mainly for my son. I remember one dark hour, a nurse in the hospital telling me to remember to breathe, to breathe for my son. And I do that every day. Learn as much as you can about this disease. These forums are a great way to do that. I send you strength and lots of good wishes and hope for a wonderful future with your family.
Best, Courtenay
Take heart. My heart goes out to you, and I know where you are coming from. Today is my son's 16th birthday, and one year ago, I spent his entire birthday in tears because I thought it was going to be my last birthday celebration with him. I'd been diagnosed just three months before and things weren't going well. I couldn't see a way forward.
But I was fortunate to have great doctors who with the help of second opinions from myeloma treatment centers found effective treatments even for my difficult case. It's terrible to be so young and have to face this. I'm a decade older than you, and I can only imagine how hard it is to have such a little one. But take heart. I've learned so much in this past year. I was floored at first, and overwhelmed, but have since learned there are so many options for myeloma patients today, and those options are expanding month by month. Often, a drug will work for years and years. So take heart. So many people on these forums have been living with myeloma for years. Find a doctor whom you trust, and don't be afraid to ask lots of questions and get second opinions if necessary.
Today, I ran five miles early, as I do every morning these days, then came home and baked my son a birthday cake, something I never imagined I would be able to do again. And I feel great, practically normal. It isn't easy, and last year was tough with a stem cell transplant, but we really have no choice. I fight hard, and I fight hard mainly for my son. I remember one dark hour, a nurse in the hospital telling me to remember to breathe, to breathe for my son. And I do that every day. Learn as much as you can about this disease. These forums are a great way to do that. I send you strength and lots of good wishes and hope for a wonderful future with your family.
Best, Courtenay
Re: 41-year-old female with multiple myeloma after MGUS
Firstly, sorry Jimmie for putting Jimmy. I should know better after 41 years of being called Laura!
Thank you so much Courtenay. I am just starting this journey and to be honest I'm terrified. It's only been 4 days and I've been going through all the emotions and have managed to get positive at times, but overall I'm so scared of the more detailed consultant meeting on Tuesday.
Your words and story are inspirational to me. I hope to see my boys into their teens and way beyond.
Lorna xxx
Thank you so much Courtenay. I am just starting this journey and to be honest I'm terrified. It's only been 4 days and I've been going through all the emotions and have managed to get positive at times, but overall I'm so scared of the more detailed consultant meeting on Tuesday.
Your words and story are inspirational to me. I hope to see my boys into their teens and way beyond.
Lorna xxx
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Lorna - Name: Lorna
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 13 June 2018
- Age at diagnosis: 41
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