Hello all my brothers and sisters. I have great love for you since we share an opportunity together and I'm looking to share that with you.
Who are you?
I am an easy going guy, married ten years to my wonderful wife who is my main caregiver. I love cars and can talk about them till I'm blue in the face. I am spiritual but compassionate of others beliefs. Live and let live are words I live by. You deserve as much respect as you can give. I live in a positive light, my choice, and I am happy, no pills have contributed to this so you get what you see. I'm looking to support and share experiences. I don't want to babysit but have an ear and will tend to lend it if you need a boost in life. I look forward in whatever this experience brings, friends are always welcome. Looking forward in getting to know you.
My path
multiple myeloma diagnosed Feb 2013. I had no idea. My back started hurting Christmas 2012 and never got better. Long story short started treatment March 2013. Stage II B which means nothing to me and never will. Next steps are transplant by Dr Morab at University of Florida. My oncologist/hematologist is Dr Bubis at Jacksonville Cancer Specialist. I have nothing but great love for these professionals and their continued dedication.So if you have nothing positive to say about these individuals you will not change my mind about them. They work for me. I lucked out with Doctors the first time for which I am Grateful.
Forums
6 posts
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ChallengerDave - Name: David
- Who do you know with myeloma?: Me, myself, and I
- When were you/they diagnosed?: Feb 28 2013
- Age at diagnosis: 43
Re: Ok ready, lets go!!
I like your style Dave! I've been in this since March of 2011 and was diagnosed at Stage 3 with a huge amount of myeloma in my bone marrow or so they tell me. Never mind, I intend to stay around as long as I do and until I can't stay around any longer I intend to not act as someone who has cancer. I did the whole nine yards in 2011 including the stem cell transplant and went into complete remission but alas it lasted only a year for me (I have the light chain myeloma which I'm told is more aggressive) and now the counts are starting to rise again.
The good news is that there are still a number of drugs out there I have yet to try. I am still working (work work work) and it feels good. I have a purpose and I like to have a purpose. It is great you have a caregiver -- mine is no longer with me -- so praise her at least once a day and maybe twice a day when you are feeling particularly awful.
I also love my doctor but I am up north in Vermont and have to travel almost 2 hours to go to a special facility in Dartmouth, New Hampshire to see my doctor who is a lady (yay!). You know it might be wise if you can't keep up with everything to have that wonderful significant other you brag about keep up with your bloodwork and other necessary items. Maybe she'll be good at asking questions for you when you don't have a clue or want one.
The bone involvement was my worst side effect and even that wasn't that bad. I did cough one or twice and crack a rib (damn, that hurt!) but now that my counts are down and I had my new birthday (stem cell transplant -- all the nurses got really sentimental about the day they gave me new stem cells and called it my new birthday) things seem to be pretty good. Considering what I read on this site I feel like one of the lucky ones because I have really had no major downfalls, infections, or whatever. It has been pretty good.
On a completely different note and involving a motor vehicle (not a car but a truck) -- I remember spending Christmas day maybe in 2009/2010 driving south on a postal run from northern Vermont to New Jersey with my then husband in a big Kenworth with a sleeper cab and all decked out with Nascar emblems all over it, and with our 2 coonhounds and a black lab in the sleeper. He had to work that day so we decided to go with him. It was fun and very a different way to spend Christmas. He was, by the way, a junkie for antique trucks and I spend many a summer day at antique truck and car shows.
Good luck on your myeloma journey and if you ever need any help this is a great site and you can email me as well (just click on the email icon underneath my avatar on the left).
The good news is that there are still a number of drugs out there I have yet to try. I am still working (work work work) and it feels good. I have a purpose and I like to have a purpose. It is great you have a caregiver -- mine is no longer with me -- so praise her at least once a day and maybe twice a day when you are feeling particularly awful.
I also love my doctor but I am up north in Vermont and have to travel almost 2 hours to go to a special facility in Dartmouth, New Hampshire to see my doctor who is a lady (yay!). You know it might be wise if you can't keep up with everything to have that wonderful significant other you brag about keep up with your bloodwork and other necessary items. Maybe she'll be good at asking questions for you when you don't have a clue or want one.
The bone involvement was my worst side effect and even that wasn't that bad. I did cough one or twice and crack a rib (damn, that hurt!) but now that my counts are down and I had my new birthday (stem cell transplant -- all the nurses got really sentimental about the day they gave me new stem cells and called it my new birthday) things seem to be pretty good. Considering what I read on this site I feel like one of the lucky ones because I have really had no major downfalls, infections, or whatever. It has been pretty good.
On a completely different note and involving a motor vehicle (not a car but a truck) -- I remember spending Christmas day maybe in 2009/2010 driving south on a postal run from northern Vermont to New Jersey with my then husband in a big Kenworth with a sleeper cab and all decked out with Nascar emblems all over it, and with our 2 coonhounds and a black lab in the sleeper. He had to work that day so we decided to go with him. It was fun and very a different way to spend Christmas. He was, by the way, a junkie for antique trucks and I spend many a summer day at antique truck and car shows.
Good luck on your myeloma journey and if you ever need any help this is a great site and you can email me as well (just click on the email icon underneath my avatar on the left).
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mowgli18 - Name: Mowgli18
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2011
- Age at diagnosis: 51
Re: Ok ready, lets go!!
Mowgli, hi nice to meet you. Thanks for the reply and props on the style. I totally believe cancer is not the sign I wear around my neck. I am David and it never will take that way from me. I'm rounding my first corner and I know I will take a lot of beating but I have a very strong will. I will be on my first transplant coming in August so I'm ready. They gave me some indication that I will have a short remission period. If that's the case then so be it. I will try as many times as they will let me.
Im so sorry to hear about your caretaker. I hope there are supportive friends
/ family that share with you and help you in your times of need. My wife gets all of my special attention for all she does as she is an angel. I am also thankful for people like yourself as it helps to reach out to one another not just to a disease but to another soul on a life journey. She has been so helpful in catching things that I just bypass due to how crazy everything has become in three months of non stop doctors.
The bones are getting me. I just developed another back fracture since December as the cancer is mainly in my spinal cord. This has set me back this week from going back to work. It may do so indefinitely as I am fragile at least for the moment. I started zometa to strengthen my bones.
I love my car shows. I have two classics now and they are my freedom. When I can walk out to the garage I just stare at them and go back inside and take a nap so I can reminisce all the good times. I haven't driven in several months but I will go out and start them up just to smell the carbon and move the shifter. I push myself to try and drive them again. I hope my next kyproplasty will take and relieve my pain so I can drive again.
I look forward in talking with you as time goes on. Thanks for the reply.
Im so sorry to hear about your caretaker. I hope there are supportive friends
/ family that share with you and help you in your times of need. My wife gets all of my special attention for all she does as she is an angel. I am also thankful for people like yourself as it helps to reach out to one another not just to a disease but to another soul on a life journey. She has been so helpful in catching things that I just bypass due to how crazy everything has become in three months of non stop doctors.
The bones are getting me. I just developed another back fracture since December as the cancer is mainly in my spinal cord. This has set me back this week from going back to work. It may do so indefinitely as I am fragile at least for the moment. I started zometa to strengthen my bones.
I love my car shows. I have two classics now and they are my freedom. When I can walk out to the garage I just stare at them and go back inside and take a nap so I can reminisce all the good times. I haven't driven in several months but I will go out and start them up just to smell the carbon and move the shifter. I push myself to try and drive them again. I hope my next kyproplasty will take and relieve my pain so I can drive again.
I look forward in talking with you as time goes on. Thanks for the reply.
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ChallengerDave - Name: David
- Who do you know with myeloma?: Me, myself, and I
- When were you/they diagnosed?: Feb 28 2013
- Age at diagnosis: 43
Re: Ok ready, lets go!!
Hi Dave,
This is a short reply to say hi and sorry to hear that you have multiple myeloma. I was diagnosed at 43 as well (with a spinal fracture). Am now coming up to 4 years since diagnosis and 2 years since an allotransplant (I have been in remission for the last year). My husband (who is also a David) and I recently celebrated our 22 wedding anniversary - may there be many more).
There are a lot of good resources on this website and a lot of very helpful fellow multiple myeloma patients & caregivers. On one of his recent posts Ricardo put in a link to the Mayos Clinic 2013 guidelines for multiple myeloma treatment. I have mentioned this because you wrote "They gave me some indication that I will have a short remission period." and the guidelines set out the different treatment options for those with High risk, intermediate risk and standard risk.
All the best,
Libby
This is a short reply to say hi and sorry to hear that you have multiple myeloma. I was diagnosed at 43 as well (with a spinal fracture). Am now coming up to 4 years since diagnosis and 2 years since an allotransplant (I have been in remission for the last year). My husband (who is also a David) and I recently celebrated our 22 wedding anniversary - may there be many more).
There are a lot of good resources on this website and a lot of very helpful fellow multiple myeloma patients & caregivers. On one of his recent posts Ricardo put in a link to the Mayos Clinic 2013 guidelines for multiple myeloma treatment. I have mentioned this because you wrote "They gave me some indication that I will have a short remission period." and the guidelines set out the different treatment options for those with High risk, intermediate risk and standard risk.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Ok ready, lets go!!
Hi Libby,
22 years congratulations, me and my wife are coming up on ten in a few weeks. Yes may many more be headed our way God willing. I am slowly making headway on the information contained on these sites. Luckly I have Mayo here in Jacksonville along with my transplant doctor who has one of the highest success rates in the country, not bragging, just very lucky to have some great doctors here. Thank you for the referral as I like to read the research so i can see if they follow the protocol or question why if they deviate. Not that I understand it all just makes me feel more confident with decisions on my care. I look forward in getting to know you and everyone here. Its nice to see a picture of you with a smile. It looks like you are a very special person to your family.
22 years congratulations, me and my wife are coming up on ten in a few weeks. Yes may many more be headed our way God willing. I am slowly making headway on the information contained on these sites. Luckly I have Mayo here in Jacksonville along with my transplant doctor who has one of the highest success rates in the country, not bragging, just very lucky to have some great doctors here. Thank you for the referral as I like to read the research so i can see if they follow the protocol or question why if they deviate. Not that I understand it all just makes me feel more confident with decisions on my care. I look forward in getting to know you and everyone here. Its nice to see a picture of you with a smile. It looks like you are a very special person to your family.
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ChallengerDave - Name: David
- Who do you know with myeloma?: Me, myself, and I
- When were you/they diagnosed?: Feb 28 2013
- Age at diagnosis: 43
Re: Ok ready, lets go!!
Hi David! I'm sorry to hear about your introduction to Multiple Myeloma. If you and your wife were anything like my husband and me, you had never heard of it. Even though my husband wasn't diagnosed until 2010, we believe he actually had multiple myeloma in 2007 when his first vertebrae collapsed. Neither a bone marrow biopsy or blood tests indicated the disease. He remained relatively symptom free until fall of late fall of 2009. It wasn't until a visit to ICU in January of 2010 and more tests than I can recall, that he was diagnosed. The Free Kappa Light Chain test was not used in 2007. It is amazing to me the advances in testing and treatment that have come into being just since his diagnosis.
Like yourself, my husband was lucky to find good doctors quickly.Our prayers are with you and your wife as you begin this journey. I cannot honestly tell you that it has been our faith and our support network of friends and family that carry us through each and every day.
Praying with you for a cure.
Like yourself, my husband was lucky to find good doctors quickly.Our prayers are with you and your wife as you begin this journey. I cannot honestly tell you that it has been our faith and our support network of friends and family that carry us through each and every day.
Praying with you for a cure.
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Marie64 - Name: Marie
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2010
- Age at diagnosis: 45
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