Hello
Sorry for any mistakes in my English as it's not my native language. I'm a 37 y.o. female whose mother died of Stage 3 multiple myeloma a few years ago, at 57, a just 3 months after being diagnosed. This was probably partially due to the fact that it took her so long to get the right dianosis and treatment, and quality of medical care in our country which is, although not totally poor, is still worse than what you would get in the US or Europe
I'm also a single mom of a 2 year old girl whom I love more than life, with no other close relatives and a very limited support network. Now I'm absolutely terrified as for 3 months I've been experiencing unusual syptoms like a sinus infection that would never go away, migraines, fatigue and dizziness, and now, for the last week, strong pains in my lower back. I also did a urine test back in March and my proteine was slightly elevated but I retested and it seemed normal so I did not pay much attention to it. From reading all the symptoms information, I'm realizing that I may have multiple myeloma too, like those other cases where it runs in the family. I'm taking a test to confirm it tomorrow, and they say results will take around 10 days.
Sorry for writing here, I'm so terrified about what will happen to my little girl. I would really appreciate some words from those who were diagnosed in the earlier age and have small kids - how do you cope? And, of course, I wish health and strength to everyone living with this desease
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Re: Waiting for diagnosis
Hi AA,
I'm Kristina, I was diagnosed with MGUS a few weeks ago. I am 38, and I have a 4 year old and a 15 year old, both boys. I have some other complex health problems, and I have known for some time that I probably will not be around to watch them have some important life events.
The way I cope with it is by scrap booking. I have a book with blank pages. If I find a quote or some words of wisdom, I type it and print it and cut to size and it goes in my book. Cards that people have given me tha touched my heart are in there, funny things my children have said (my oldest son called grasshoppers hoppergrassers when he was little. It's memories, things I want to make sure they know (wisdoms I want to pass on), Favorite recipe's for cookies I make for them all the time, etc. I have written short personal notes in there for both my boys. I get so much pleasure from making it- it is Life Affirming for me, but if something should happen, I have something to leave them. A little book all about the things I loved, a place to find me should they miss me.
I don't know if that helps, but that is my strategey, along with staying positive.
I am so sorry to hear of the passing of your Mother so quickly. Sending prayers to you and your family for peace and comfort. Please keep us updated on your test results when you get them!
I'm Kristina, I was diagnosed with MGUS a few weeks ago. I am 38, and I have a 4 year old and a 15 year old, both boys. I have some other complex health problems, and I have known for some time that I probably will not be around to watch them have some important life events.
The way I cope with it is by scrap booking. I have a book with blank pages. If I find a quote or some words of wisdom, I type it and print it and cut to size and it goes in my book. Cards that people have given me tha touched my heart are in there, funny things my children have said (my oldest son called grasshoppers hoppergrassers when he was little. It's memories, things I want to make sure they know (wisdoms I want to pass on), Favorite recipe's for cookies I make for them all the time, etc. I have written short personal notes in there for both my boys. I get so much pleasure from making it- it is Life Affirming for me, but if something should happen, I have something to leave them. A little book all about the things I loved, a place to find me should they miss me.
I don't know if that helps, but that is my strategey, along with staying positive.
I am so sorry to hear of the passing of your Mother so quickly. Sending prayers to you and your family for peace and comfort. Please keep us updated on your test results when you get them!
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kristina - Name: Kristina
- Who do you know with myeloma?: MGUS
- When were you/they diagnosed?: April 25th 2013 KU Oncology Center
- Age at diagnosis: 38
Re: Waiting for diagnosis
Treatment options for multiple myeloma have really advanced considerably in the past few years and many new drugs with great promise such as monoclonal antibodies are in the pipeline. If you do test positive for multiple myeloma, it could also very well be an early stage like MGUS that may never progress to multiple myeloma and may never require treatment. If you line yourself up with a couple of multiple myeloma specialists that live and breathe this disease on a daily basis, you can easily find yourself living a long and quality-filled life. There are many on this site that have survived longer than 20 years and you are starting down this journey with access to so many new novel drugs and data that these pioneers did not have access to when they started.
The chances for you living a full life are absolutely there, but you need to seek out specialists that know all the treatment options and subtleties of this disease. Many oncologists/hematologists simply aren't that familiar with multiple myeloma, so I can't emphasize enough the importance of seeking out at least two MULTIPLE MYELOMA specialists with different treatment philosophies to come up with the best plan of action for you. Educating yourself, understanding all the options and coming up with a lifelong approach to this disease with your specialists, and having some faith is the key to beating to this disease.
I always find myself taking inspiration from Don Wright, although there are many others on this forum that have done quite well over the years. See his story here: http://myelomahope.blogspot.com/
The chances for you living a full life are absolutely there, but you need to seek out specialists that know all the treatment options and subtleties of this disease. Many oncologists/hematologists simply aren't that familiar with multiple myeloma, so I can't emphasize enough the importance of seeking out at least two MULTIPLE MYELOMA specialists with different treatment philosophies to come up with the best plan of action for you. Educating yourself, understanding all the options and coming up with a lifelong approach to this disease with your specialists, and having some faith is the key to beating to this disease.
I always find myself taking inspiration from Don Wright, although there are many others on this forum that have done quite well over the years. See his story here: http://myelomahope.blogspot.com/
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Waiting for diagnosis
Hello everyone.
I, too , have been diagnosed with smoldering myeloma ten months ago, which has progressed from MGUS diagnosed approx. 6 years ago. I live in Perth in Western Australia and am currently on a 'watch and wait', under the care of my haematologist. My GP has admitted to knowing very little/nothing about myeloma. My doctor advises the progression time to full blown myeloma is between 1-5 years but I feel I am floundering around just waiting for the axe to fall. Does anyone have any advice as to how to cope with the waiting?
I, too , have been diagnosed with smoldering myeloma ten months ago, which has progressed from MGUS diagnosed approx. 6 years ago. I live in Perth in Western Australia and am currently on a 'watch and wait', under the care of my haematologist. My GP has admitted to knowing very little/nothing about myeloma. My doctor advises the progression time to full blown myeloma is between 1-5 years but I feel I am floundering around just waiting for the axe to fall. Does anyone have any advice as to how to cope with the waiting?
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puffofwind - Name: Gayle C
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2012
- Age at diagnosis: 54
Re: Waiting for diagnosis
I am 37 and I have been diagnosed with high risk smoldering and I have two children and two step children. I don't know what the future holds. I almost wish I hadn't found out untill (or if)I progressed to multiple myeloma. But if I do progress, it will be better at that time so we will know what I'm dealing with.
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dishevelled - Name: Heather Trimnell
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 4/1/2011
- Age at diagnosis: 36
Re: Waiting for diagnosis
Hi Dishevelled
I am hearing you as I feel exactly the same, I wish I did not know about the smoldering myeloma. You feel so helpless as there is nothing to fight at the moment. I am lucky that at least my children are grown. I wish you all the best.
I am hearing you as I feel exactly the same, I wish I did not know about the smoldering myeloma. You feel so helpless as there is nothing to fight at the moment. I am lucky that at least my children are grown. I wish you all the best.
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puffofwind - Name: Gayle C
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2012
- Age at diagnosis: 54
Re: Waiting for diagnosis
Thank you all very much for your responses, and I wish you health and strength
Kristina, thanks also for sharing your experiences, I understand there is a great chance that MGUS may never turn into multiple myeloma! I hope very much this will be your case!
Kristina, thanks also for sharing your experiences, I understand there is a great chance that MGUS may never turn into multiple myeloma! I hope very much this will be your case!
8 posts
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