Hi Everyone! I am thrilled to have found this site and forum where I can talk with other people going through similar circumstances and try to make sense of what my dad is going through. My mom, my brother and I are lost, devastated and in need of advice.
My dad John is 68 and has always been super healthy, running his business full time until multiple myeloma took its hold. He's a 'typical dutchman' (I say that affectionately), a strong man, loves family, in his free time loves gardening, landscaping, reading and always has time to help everyone with a project around the house.
My Dad was diagnosed with multiple myeloma 4 months ago but last Christmas he was lying on a mattress on the floor unable to move from pain. At that time the doctor said it was sciatic. Generally speaking, he has had all the symptoms for 18 months or more. He was finally diagnosed after he was rushed to the hospital for the second night in a row and refused to leave until they found out what was wrong with him. The 'Angel Doctor' who just came on shift after my dad was there for HOURS took one look at his x-rays and admitted him immediately. My dad has never been admitted to a hospital in his life and didn't know what to do or what to expect! When I went to see him the following afternoon he was severely dehydrated, he stunk and was lying in pain on a bed in and out of consciousness. When he finally went to the bathroom since being admitted the night before his urine was brown. Heartbreaking! Three nights later, disaster again ... around 8pm as he lie in his hospital bed alone (we had all gone home) the doctor gave him the news 'you have blood/bone cancer'. This devastating and life-changing news was shared with my father (high on morphine) and his 2 roommates. Imagine my mom and I trying to make sense of this in the morning. We never did see that doctor afterwards. One day I asked one of the other doctors advising him if he should have an MRI and she said "for what purpose? he already has his diagnosis". So that was that.
We still feel like we don't know anything despite our HOURS of research and trying to understand.
He has only had xrays - no MRI, or PET. They haven't explained anything to my mom that makes sense to her and we know, the terminology can be complex. To us, it's like everything is 'top secret' and it's sadly obvious that we don't know what questions to ask.
Despite these issues, GOOD news! After starting chemo at the Kingston cancer clinic we received the exceptional news that he was responding very well to the aggressive treatment and was eligible for a stem cell transplant which is scheduled in Kingston on January 22nd. Yippee!!!!!
MORE BAD NEWS ... today the doctor informed my parents that he has numerous lesions in his hips (which we knew) except one is a 4 1/2cm lesion/tumor and he needs hip surgery before his Stem Cell Transplant which is in 26 DAYS! They said his hip WILL (not maybe) break at any moment. My poor mom rushes to my house and we start googling again ... Is a lesion a tumor? How long has he had it? Why didn't they see it before? Would a PET or MRI have made a difference? Was it as obvious to them as it was to us because he has no hips, very skinny in the legs and cant walk 2 feet without support. PLEASE tell me, does it always get to the worst point before the doctor takes action?
There are more awful stories to add but I will save you the time.
My dad is a Christian man and he believes 'what is meant to be will be'. We can handle the multiple myeloma diagnosis, we can handle terminal cancer but we cant handle the fact that it didn't have to get this bad and that this pain and suffering could have been avoided. How different life would be if only....
I am grateful for the opportunity to read other stories posted and welcome any advice! In advance - Thank YOU!
'Johns Family for John'
Forums
8 posts
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Dawn Edgley - Name: Daughter Dawn
- Who do you know with myeloma?: My Dad
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 68
Re: New Member - Glad I Found You!
Hi Dawn, It is nice to meet you on this forum and it's good you wrote in with your concerns about your Dad. Firstly, it seems he has a very supportive family and that is really important!
Sorry he had to find out that he had myeloma at the emergency ward....wow, that must have been a shock. Are you in Kingston Ontario? I think there is also a Kingston Jamaica!
If you are in Ontario, then I am sure you know you could ask for a second opinion concerning your fathers care. As others have said ' myeloma is a marathon, not a sprint'. Since he is responding well to chemotherapy, and also needs surgery on his hip, maybe you should take the time to ask another myeloma specialist about his treatments too. Is he getting a bone building 'bisphosphonate' medication such as Zometa or Aredia? That will help with the bone issues.
Have you looked at the Myeloma Canada site? There are downloadable booklets which explain different topics about myeloma, using the measurements for lab tests that are used here. Also, did you know that the largest centre for myeloma specialists and myeloma research in the country is in your province....the Princess Margaret Hospital in Toronto.
Hope that helps.. as an Albertan, we have some similar issues here with health care, but it isn't really possible to directly compare care from province to province. Best wishes to you and your family!
Sorry he had to find out that he had myeloma at the emergency ward....wow, that must have been a shock. Are you in Kingston Ontario? I think there is also a Kingston Jamaica!
If you are in Ontario, then I am sure you know you could ask for a second opinion concerning your fathers care. As others have said ' myeloma is a marathon, not a sprint'. Since he is responding well to chemotherapy, and also needs surgery on his hip, maybe you should take the time to ask another myeloma specialist about his treatments too. Is he getting a bone building 'bisphosphonate' medication such as Zometa or Aredia? That will help with the bone issues.
Have you looked at the Myeloma Canada site? There are downloadable booklets which explain different topics about myeloma, using the measurements for lab tests that are used here. Also, did you know that the largest centre for myeloma specialists and myeloma research in the country is in your province....the Princess Margaret Hospital in Toronto.
Hope that helps.. as an Albertan, we have some similar issues here with health care, but it isn't really possible to directly compare care from province to province. Best wishes to you and your family!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: New Member - Glad I Found You!
Dawn...so sorry to hear that it took so long for your father to reach a proper diagnosis! As for as I understand, lytic lesions are areas that have been basically eaten away by the myeloma activity...creating structural compromises. There are also plasmacytoma/tumors that are the grouped mass of cells that will erode a specific area in your skeleon. If they said tumor...then it's probably a plasmacytoma...but I am not a professional by any means.
I thought I was a tough guy dealing with the painful symptoms for three months before being admitted to hospital...to to hear about your father weathering it for a year and a half...wow. I was having major back and rib pain..and one of my vertabrae collapsed...but urgent care had no diagnosis to offer me..it was after near renal failure that got me readmitted and doctor ordered full x-rays. I bet since they assumed your father's pain was sciatica, they only took x-rays of his lumbar which missed diagnosis...that's what happened to me in my case...because I pretty much have lytic lesions all over...not discovered until hospitalist had a hunch and ordered full body x-rays.
But toughing it for months gave way to complete weakness once I was hospitalized...like my body was telling me, NO MORE! I could barely get out of bed and stand up. If your father is getting a good response from his treatments then you should be seeing him drastically improve....one day at a time.
I thought I was a tough guy dealing with the painful symptoms for three months before being admitted to hospital...to to hear about your father weathering it for a year and a half...wow. I was having major back and rib pain..and one of my vertabrae collapsed...but urgent care had no diagnosis to offer me..it was after near renal failure that got me readmitted and doctor ordered full x-rays. I bet since they assumed your father's pain was sciatica, they only took x-rays of his lumbar which missed diagnosis...that's what happened to me in my case...because I pretty much have lytic lesions all over...not discovered until hospitalist had a hunch and ordered full body x-rays.
But toughing it for months gave way to complete weakness once I was hospitalized...like my body was telling me, NO MORE! I could barely get out of bed and stand up. If your father is getting a good response from his treatments then you should be seeing him drastically improve....one day at a time.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: New Member - Glad I Found You!
Hi Standing Tall and Nancy Shamanna,
I am so sorry that both of you are personally dealing with this disease. I hope you both have a loving and supportive friends and family to help you through. Standing Tall, it breaks my heart to hear what you went through as I have seen this pain first hand. I do hope that your treatment is going well.
Thank you so very much for writing back. My brother and his family came for dinner last night and we read your responses together. It meant more to us than you know .
We are from Brockville Ontario. Kingston Ontario is 45 min from us and Princess Margaret is in Toronto - around 31/2 hours away. The Kingston Cancer Center has been very good. Wonderful people work there. Dr. Mathews is said to be one of the best so this is good.
I am going to look into the information and suggestions you both gave me.
I have one question though. Is it standard procedure for a multiple myeloma patient to have a MRI, PETScan? My dad has only received Xrays and a CTScan since first being diagnosed. He has not received anything since. I think this question is haunting my parents. They feel that if more attention was paid to his bones, he wouldn't be in a situation now where his hip can break at any moment. The bone specialist said his hip could break in his sleep its so bad now.
Thanks and wishing you a happy day,
Dawn
I am so sorry that both of you are personally dealing with this disease. I hope you both have a loving and supportive friends and family to help you through. Standing Tall, it breaks my heart to hear what you went through as I have seen this pain first hand. I do hope that your treatment is going well.
Thank you so very much for writing back. My brother and his family came for dinner last night and we read your responses together. It meant more to us than you know .
We are from Brockville Ontario. Kingston Ontario is 45 min from us and Princess Margaret is in Toronto - around 31/2 hours away. The Kingston Cancer Center has been very good. Wonderful people work there. Dr. Mathews is said to be one of the best so this is good.
I am going to look into the information and suggestions you both gave me.
I have one question though. Is it standard procedure for a multiple myeloma patient to have a MRI, PETScan? My dad has only received Xrays and a CTScan since first being diagnosed. He has not received anything since. I think this question is haunting my parents. They feel that if more attention was paid to his bones, he wouldn't be in a situation now where his hip can break at any moment. The bone specialist said his hip could break in his sleep its so bad now.
Thanks and wishing you a happy day,
Dawn
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Daughter Dawn
Re: New Member - Glad I Found You!
Dawn and Family,
I hate hearing that your father's hip is so precarious! In these situations, it is important for the family to advocate for him...making sure that your care team is looking at this from all angles.
All I have received are my initial x-rays, but I will be given a full scan of some kind while getting prepped for my stem cell transplant...as the specialists basically want to go through the process of re-diagnosis. I think the choice of imaging will just go along with the standard of care of your medical team...as you will find a myriad of different experiences among those with multiple myeloma. Like I've said, I have a compression fracture, but my care team suggests I get through all of the chemo and the transplant(s) before addressing my back...yet I am receiving Zometa to strengthen my bones.
One would hope that your father's care team is covering all the bases, but assume nothing and just be prepared to write down all your questions as they surface...then make sure that you can come to some satisfactory understanding after consulting with the doctors...especially surrounding what ought to be planned regarding your father's hip. Sorry, I am only four months in my diagnosis, so I don't really know much more...hopefully others more experienced can chime in!
Joseph
I hate hearing that your father's hip is so precarious! In these situations, it is important for the family to advocate for him...making sure that your care team is looking at this from all angles.
All I have received are my initial x-rays, but I will be given a full scan of some kind while getting prepped for my stem cell transplant...as the specialists basically want to go through the process of re-diagnosis. I think the choice of imaging will just go along with the standard of care of your medical team...as you will find a myriad of different experiences among those with multiple myeloma. Like I've said, I have a compression fracture, but my care team suggests I get through all of the chemo and the transplant(s) before addressing my back...yet I am receiving Zometa to strengthen my bones.
One would hope that your father's care team is covering all the bases, but assume nothing and just be prepared to write down all your questions as they surface...then make sure that you can come to some satisfactory understanding after consulting with the doctors...especially surrounding what ought to be planned regarding your father's hip. Sorry, I am only four months in my diagnosis, so I don't really know much more...hopefully others more experienced can chime in!
Joseph
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: New Member - Glad I Found You!
Dawn,
It is not unusualy that a patient would not get an MRI. The full body bone scan is done with X-Rays and the CT Scan is used to target a specific area. Those two tests will show the lesions. Generally a bone marrow biopsy is done to determine the extent of the multiple myeloma and marrow impairment. Other tests are primarily done by simply drawing blood or urine, such as a serum Protein Electrophoresis (PEP), used to measure the amount of Monoclonal protein (M-Protein) in the blood and immunofixation which is used to determine the type of M-Protein beign over produced by the marrow. Typically people with multiple myeloma show a measurable M spike in the PEP test. The type of overproduced M protien are most often IgG, IgA, IgM and that is determined by the Electophoresis test. Also a serum Free Light Chain Assay (FLCA) is often run since multiple myeloma also overproduces light chains that spill out into the blood. In some cases people with multiple myeloma will not have a measurable M spike and the progress of their disease and treatment can only be tracked with the FLCA. That is the type of multiple myeloma I have.
Since you live in Canada, below is a link to a Patients Handbook from Canada that explains the disease, tests and treatments.
http://www.myelomacanada.ca/docs/myeloma_canada_patient_handbook_-feb.2012.pdf
I wish your dad and you the best.
Ron
It is not unusualy that a patient would not get an MRI. The full body bone scan is done with X-Rays and the CT Scan is used to target a specific area. Those two tests will show the lesions. Generally a bone marrow biopsy is done to determine the extent of the multiple myeloma and marrow impairment. Other tests are primarily done by simply drawing blood or urine, such as a serum Protein Electrophoresis (PEP), used to measure the amount of Monoclonal protein (M-Protein) in the blood and immunofixation which is used to determine the type of M-Protein beign over produced by the marrow. Typically people with multiple myeloma show a measurable M spike in the PEP test. The type of overproduced M protien are most often IgG, IgA, IgM and that is determined by the Electophoresis test. Also a serum Free Light Chain Assay (FLCA) is often run since multiple myeloma also overproduces light chains that spill out into the blood. In some cases people with multiple myeloma will not have a measurable M spike and the progress of their disease and treatment can only be tracked with the FLCA. That is the type of multiple myeloma I have.
Since you live in Canada, below is a link to a Patients Handbook from Canada that explains the disease, tests and treatments.
http://www.myelomacanada.ca/docs/myeloma_canada_patient_handbook_-feb.2012.pdf
I wish your dad and you the best.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: New Member - Glad I Found You!
Hi Dawn,
Sorry to hear about your father but you've come to a good place to begin your multiple myeloma education. There are several VERY good multiple myeloma info sites where you can obtain plenty of information written for the lay person, sites such as the MMRF and IMF.
Multiple myeloma is notoriously misdiagnosed....it's a rare cancer and if there is no blood work done initially to clue the doctor in on the patient's M spike then certain typical multiple myeloma symptoms can tend to lead the dx in the wrong direction, e.g., anemia. So, 18 months ago had a doctor done SPEP on your father that would have helped steer them toward imaging and then the multiple myeloma dx. As apparently that wasn't done back then you now have to contend with where you are NOW....try not to get caught up in "coulda, shouda, woulda". I know personally that's hard to do as I too am a relatively young multiple myeloma patient and sometimes that mindset of wondering "what if" just won't let go. But it doesn't help you optimize your treatment NOW, so try to stay focused on where things are NOW and how you can find the best possible treatment for your dad, NOW!
Also, try to get an multiple myeloma specialist involved with your dad's treatment, if you haven't already...that can be done long distance via phone and internet exchanges. Many multiple myeloma patients do just that!
And don't be afraid to ask the doctors questions. It's all about your dad's well-being, NOT about a doctor's ego.
All the best to your dad and your family....keep us posted.
Steve
Sorry to hear about your father but you've come to a good place to begin your multiple myeloma education. There are several VERY good multiple myeloma info sites where you can obtain plenty of information written for the lay person, sites such as the MMRF and IMF.
Multiple myeloma is notoriously misdiagnosed....it's a rare cancer and if there is no blood work done initially to clue the doctor in on the patient's M spike then certain typical multiple myeloma symptoms can tend to lead the dx in the wrong direction, e.g., anemia. So, 18 months ago had a doctor done SPEP on your father that would have helped steer them toward imaging and then the multiple myeloma dx. As apparently that wasn't done back then you now have to contend with where you are NOW....try not to get caught up in "coulda, shouda, woulda". I know personally that's hard to do as I too am a relatively young multiple myeloma patient and sometimes that mindset of wondering "what if" just won't let go. But it doesn't help you optimize your treatment NOW, so try to stay focused on where things are NOW and how you can find the best possible treatment for your dad, NOW!
Also, try to get an multiple myeloma specialist involved with your dad's treatment, if you haven't already...that can be done long distance via phone and internet exchanges. Many multiple myeloma patients do just that!
And don't be afraid to ask the doctors questions. It's all about your dad's well-being, NOT about a doctor's ego.
All the best to your dad and your family....keep us posted.
Steve
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: New Member - Glad I Found You!
Hi Dawn, Thanks for your reply. It's good to know that your father is in good medical hands. I wouldn't expect anything less from the city which has Queen's University and Medical school, actually! And top experts in myeloma are also close by in Toronto. That's how I feel about my situation here in Calgary too...we have a very strong team who treat myeloma here. I am very fortunate to be here I know, and I am quite well at the moment, due to the wonderful health care available in this century and this place. i am monitored frequently and just had my fifth annual skeletal X-ray
But surprisingly, I have never had anything beyond skeletal x-rays, which are 'standard of care' for diagnosing myeloma. There can be long wait lists here for MRI's, and my treatments were started almost immediately.
so anyways, the decision to use MRI's seems to be based here on the individual patient. I would just ask your doctor about it if it concerns you...I go in with a list of questions for appointments in case I forget anything.
But surprisingly, I have never had anything beyond skeletal x-rays, which are 'standard of care' for diagnosing myeloma. There can be long wait lists here for MRI's, and my treatments were started almost immediately.
so anyways, the decision to use MRI's seems to be based here on the individual patient. I would just ask your doctor about it if it concerns you...I go in with a list of questions for appointments in case I forget anything.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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