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Re: ~*~Can you please share your story~*~
Diagnosed with MGUS after several anemia readings and a low WBC had my doctor send ne to an oncologist for additional tests. That was 18 months ago. I feel good with no symptoms and am monitored every 3-4 months
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Jerry k
Re: ~*~Can you please share your story~*~
My mother had pain in her right shoulder last august. Initially she thought that she might have slept in a position that would have caused strain on the shoulder. She took pain meds but the pain did not go away. So she went to see orthopedic doctor who took an X-Ray and then said she had frozen shoulder which is very common in females after 55 years of age. She also went to physiotherapist to exercise as suggested by doctor for a month. The pain was still the same. Then one day she fell down and had a fracture in her right shoulder. The doctor again took an X-Ray and this time he said that he saw a lesion in the bone. So he did a biopsy and the biopsy detected plasmacytoma. Other than that my mother did not have any other problems. No fatigue, no pains nothing. It was just unbelievable that she could have something like this.
Re: ~*~Can you please share your story~*~
Hi Ruchi,
It just amazes me how certain things don't show on X-rays when they're first done. How is she doing now?
It just amazes me how certain things don't show on X-rays when they're first done. How is she doing now?
Re: ~*~Can you please share your story~*~
Hi Yvie Dee.
Thanks for asking. She is doing OK. She had a surgery because of the fracture and then she had taken radiation. After that the doctor noticed that her Kappa/Lambda kept on increasing due to high kappa values. And she also had high B2 microglobulin value. So the doctor gave her 8 rounds of Velcade and now she is on Revlimid maintainance treatment. Due to Revlimid she experiences some weakness but other than that she is doing good. But one thing is for sure if it wouldnt have been for her fracture we would have never known that she had plasmacytoma as she had no symptoms at all. There are people who have frozen shoulder and the pain is pretty similar to that and does not go away with pains meds as well. So we would have thought that she is also having the same and wouldnt have done anything.
Thanks for asking. She is doing OK. She had a surgery because of the fracture and then she had taken radiation. After that the doctor noticed that her Kappa/Lambda kept on increasing due to high kappa values. And she also had high B2 microglobulin value. So the doctor gave her 8 rounds of Velcade and now she is on Revlimid maintainance treatment. Due to Revlimid she experiences some weakness but other than that she is doing good. But one thing is for sure if it wouldnt have been for her fracture we would have never known that she had plasmacytoma as she had no symptoms at all. There are people who have frozen shoulder and the pain is pretty similar to that and does not go away with pains meds as well. So we would have thought that she is also having the same and wouldnt have done anything.
God bless.Re: ~*~Can you please share your story~*~
Yvie Dee wrote:
> Eric, I am so happy that you are in remission and back to doing the
> activities you like. Reading all of these comments from everyone just
> confirmed for me how much of the run around we get from doctors simply
> because they don't really have answers. My fear is being diagnosed at a
> late stage. It's like Russian roulette. But I thank you for sharing your
> story. And wish you the best always.
I am pretty pleased with how quickly my primary care physician got me diagnosed. I read on this forum that the average multiple myeloma patient sees their doctor three times often over the course of months before the correct diagnosis is made. In my experience, it can be pretty challenging for a general physician to see the signs and make the connection to multiple myeloma, while it can be fairly easy for a Hematologist/Oncologist to make the correct diagnosis because they have a lot more experience with the cancer and training specifically for it. I was only the second multiple myeloma patient my general care physician has ever had. He was not sure what the cause of my back and rib pain was and I can see that is was bothering him that he did not. But as soon as he saw my CBC test it was like he completely forgot about the back and rib pain and focused on that test. Looking back I can see he did not know what I had from the CBC test but he knew that something was seriously wrong and immediately ordered a lots of other labs that day to try and determine what the problem may be, and then referred me and had an appointment made two days letter with a Hematologist/Oncologist. I had all the classic physical symptoms of multiple myeloma, back and rib pain, and with the lab results the Oncologist knew in less than a minute I had multiple myeloma but was waiting for the bone marrow biopsy to confirm before he told me. So from my first visit to my primary care physician for back and rib pain to correct diagnosis it took about a week, pretty fast in the world of multiple myeloma. I do not fault the other doctors who saw me for my shingles, sinusitis, and other aliments for making a connection to possibly having a weakened immune system from multiple myeloma. My primary care physician was a bit upset that he was not notified about the abnormal CBC test results I had a few weeks earlier from the sinusitis surgery pre-op. The test results were good enough for surgery and guess that is all that whoever reviewed them was looking for. He looked at them and obviously saw a much deeper problem. Maybe that is an electronic medical records and notification system issue. I was diagnosed at stage III and had 30% cancerous bone marrow, and was only days away from kidney failure from high calcium. If had not seen an Oncologist just days before my kidneys failed it would have been very interesting to see what would have happened the. I was starting to drink a lot a fluid and urinate a lot, and starting feeling really bad all over. I did not know what was happening to me but I emailed my Oncologist with what was happening to me and he told me to go the ER immediately. I was able to tell the ER staff I was just diagnosed with multiple myeloma a few days earlier so that helped greatly focus on what to do and I was admitted to the hospital within the hour. If I had not known I had multiple myeloma I may have waited a lot longer before going to the ER and if I was not able to tell the ER staff I had multiple myeloma, who knows what would have happened.
> Eric, I am so happy that you are in remission and back to doing the
> activities you like. Reading all of these comments from everyone just
> confirmed for me how much of the run around we get from doctors simply
> because they don't really have answers. My fear is being diagnosed at a
> late stage. It's like Russian roulette. But I thank you for sharing your
> story. And wish you the best always.
I am pretty pleased with how quickly my primary care physician got me diagnosed. I read on this forum that the average multiple myeloma patient sees their doctor three times often over the course of months before the correct diagnosis is made. In my experience, it can be pretty challenging for a general physician to see the signs and make the connection to multiple myeloma, while it can be fairly easy for a Hematologist/Oncologist to make the correct diagnosis because they have a lot more experience with the cancer and training specifically for it. I was only the second multiple myeloma patient my general care physician has ever had. He was not sure what the cause of my back and rib pain was and I can see that is was bothering him that he did not. But as soon as he saw my CBC test it was like he completely forgot about the back and rib pain and focused on that test. Looking back I can see he did not know what I had from the CBC test but he knew that something was seriously wrong and immediately ordered a lots of other labs that day to try and determine what the problem may be, and then referred me and had an appointment made two days letter with a Hematologist/Oncologist. I had all the classic physical symptoms of multiple myeloma, back and rib pain, and with the lab results the Oncologist knew in less than a minute I had multiple myeloma but was waiting for the bone marrow biopsy to confirm before he told me. So from my first visit to my primary care physician for back and rib pain to correct diagnosis it took about a week, pretty fast in the world of multiple myeloma. I do not fault the other doctors who saw me for my shingles, sinusitis, and other aliments for making a connection to possibly having a weakened immune system from multiple myeloma. My primary care physician was a bit upset that he was not notified about the abnormal CBC test results I had a few weeks earlier from the sinusitis surgery pre-op. The test results were good enough for surgery and guess that is all that whoever reviewed them was looking for. He looked at them and obviously saw a much deeper problem. Maybe that is an electronic medical records and notification system issue. I was diagnosed at stage III and had 30% cancerous bone marrow, and was only days away from kidney failure from high calcium. If had not seen an Oncologist just days before my kidneys failed it would have been very interesting to see what would have happened the. I was starting to drink a lot a fluid and urinate a lot, and starting feeling really bad all over. I did not know what was happening to me but I emailed my Oncologist with what was happening to me and he told me to go the ER immediately. I was able to tell the ER staff I was just diagnosed with multiple myeloma a few days earlier so that helped greatly focus on what to do and I was admitted to the hospital within the hour. If I had not known I had multiple myeloma I may have waited a lot longer before going to the ER and if I was not able to tell the ER staff I had multiple myeloma, who knows what would have happened.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: ~*~Can you please share your story~*~
I Have IGG Multiple Myeloma. Misdiagnosed for 6 months. four Doctors before very last 'considersation' to take a blood test taken confirmed condition. three out of four doctors failed to diagnose or run full set of tests. One told me that there was nothing they could do, prior to diagnosis, and that for the pain i should just go away and keep taking painkillers.
Back pain, long bone and hip pain. Memory issues due to anemia. Now on RCD responding well, long may it continue to be so! vertebrae implosion due to shrinkage of spinal tumour. pressure on spinal chord. Radio therapy helped with tumour, apparently totally finished off!
Lookiing towards a brighter future, chemo very tiring but endured.
Back pain, long bone and hip pain. Memory issues due to anemia. Now on RCD responding well, long may it continue to be so! vertebrae implosion due to shrinkage of spinal tumour. pressure on spinal chord. Radio therapy helped with tumour, apparently totally finished off!
Lookiing towards a brighter future, chemo very tiring but endured.
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artin888
Re: ~*~Can you please share your story~*~
Maybe you need to look at the dose of Revlimid you are on? Do you need more DEX? I was on the wrong dose of DEX V Revlimid and I had a number of issues that were all resloved when the doses were looked at and changed. Might be worth discussing with you Doctors.
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Anonymous
Re: ~*~Can you please share your story~*~
In the Jan of 2008 I had a routine physical as I had turned 55. The physical included a urinealysis as well as a CBC etc. My PCP said I had excess protine in my urine and sent me to a kidney specialist. The kidney specialist did more tests and said my kidney function was fine but had also expressed some concern about the exceess protine. Since I was an avid cyclist I suggested that it might be creatine but he said it was not. He then went on to explain what his concern was about and described multiple myeloma and MGUS. He said that since I appeard to be healthy and the test only showed a faint hint that we should wait, take the test again in a year and see if there was any change. Well in January of 2009 he re ran the test and said the protine was still present and sent me to an oncologist that treated multiple myeloma patients to determine if I had MGUS or something more. In Feb 2009 the oncologist ran a batery of tests inclucing a Bone Marrow Biopsy and a complete body EX Ray as well as PEP, CBC, Light Chain Assay etc.
The result was that I had Light Chain IGG Kappa multiple myeloma at stage 2. I had some small leisions on my hips and right femur. No measurable M spike and only a faint trace of M protein on the standard PEP.
I started on a regime of VRD plus Aredia. The Velcade was every week combined with 40 mg of oral Dex. The Revlimid was 10 mg on 21 days and off 7 days. The Aredia was once every 8 weeks. My IGG Kappa at that time was at 95. My oncologist said we shouild know within one cycle wheather or not I would respond as he expected. I did respond and after 3 cycles the the IGG Kappa was down in the normal range and after 5 cylces the light chain Assay average was in the normal range. He left me on that regime for another 3 cycles then started to back off the dosage. The Revlimid 10 mg has been unchanged but he reduced the Velcade to once every 2 weeks and cut the Dex gradually so that I am only on it when I take the Velcade and at 20 mg rather than 40mg. (Also Velcade is now subcutaneous which started January this year.) The Aredia is now once every 16 weeks. I have been in a remissive state for a little over 3 years. Recently my white and red counts have slipped a little and this past spring had a sinus and upper respritory infection that caused me to miss a couple of days of work. Then I had a serious C Diff infection and developed Viral Meningitis in early July (I have posted about that in another thread). Also my imunogobulins were all well below normal. As a result I am now recieveing IVIG once a month and was taken off all Chemo for a month. Last week he re ran all the blood tests. The light chain Assay still showed me all in the nomral range and the PEP shows normal. However the CBC is still showing me slightly anemic but my Immunogobulins are coming back up. So he put me back on the Dex and Velcade once every 2 weeks but I am off of Revlimid until my red and white counts start coming back up.
Since I have been off Revlimid I feel less fatigued and noticed an improvment in cycling. After the Viral Meningitis and C Diff I lost nearly 14 lbs and all my endurance. But it has come back and I am almost back to normal. (I posted about my biking on come back in another thread.)
The disease effects everyone differently. In my case the 3 1/2 years of chemo seems to have taken a toll.
Ron
The result was that I had Light Chain IGG Kappa multiple myeloma at stage 2. I had some small leisions on my hips and right femur. No measurable M spike and only a faint trace of M protein on the standard PEP.
I started on a regime of VRD plus Aredia. The Velcade was every week combined with 40 mg of oral Dex. The Revlimid was 10 mg on 21 days and off 7 days. The Aredia was once every 8 weeks. My IGG Kappa at that time was at 95. My oncologist said we shouild know within one cycle wheather or not I would respond as he expected. I did respond and after 3 cycles the the IGG Kappa was down in the normal range and after 5 cylces the light chain Assay average was in the normal range. He left me on that regime for another 3 cycles then started to back off the dosage. The Revlimid 10 mg has been unchanged but he reduced the Velcade to once every 2 weeks and cut the Dex gradually so that I am only on it when I take the Velcade and at 20 mg rather than 40mg. (Also Velcade is now subcutaneous which started January this year.) The Aredia is now once every 16 weeks. I have been in a remissive state for a little over 3 years. Recently my white and red counts have slipped a little and this past spring had a sinus and upper respritory infection that caused me to miss a couple of days of work. Then I had a serious C Diff infection and developed Viral Meningitis in early July (I have posted about that in another thread). Also my imunogobulins were all well below normal. As a result I am now recieveing IVIG once a month and was taken off all Chemo for a month. Last week he re ran all the blood tests. The light chain Assay still showed me all in the nomral range and the PEP shows normal. However the CBC is still showing me slightly anemic but my Immunogobulins are coming back up. So he put me back on the Dex and Velcade once every 2 weeks but I am off of Revlimid until my red and white counts start coming back up.
Since I have been off Revlimid I feel less fatigued and noticed an improvment in cycling. After the Viral Meningitis and C Diff I lost nearly 14 lbs and all my endurance. But it has come back and I am almost back to normal. (I posted about my biking on come back in another thread.)
The disease effects everyone differently. In my case the 3 1/2 years of chemo seems to have taken a toll.
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: ~*~Can you please share your story~*~
my story is long but I will write the short version!
I was sick with Multiple Myeloma for at least 2 years, likely longer.
Symptoms started one at a time, and I would go to my family doctor who would send me to a specialist, who would in turn tell me there was nothing wrong with me, and come up with a benign explanation for what I was feeling.
In total I saw at least 5 opthamologists, 3 neurologists, 1 urologist, several allergists, 2 Gastrointestinal dr's. 2 ENT's and maybe more...
I was eventually diagnosed in the ER when I collapses at work at my desk and went to the ER. At the time I was seeing a neurologist with a specialty in MS. MS seemed like the a possible diagnosis for my symptoms because many of them seemed nerve related, and included frequent migraines, nerve pains in my hands, problems with my legs, vision problems, weakness, vertigo, extreme fatigue, GI problems, problems with my bladder and others.
At the ER they diagnosed me wit anemia, and told my the protein in my blood was very high, about 10x normal. They did more bloodwork and told me it would take a week to come back, and discharged me with orders for a chest xray, and follow up with internal medicine clinic for difficult to diagnose people (Like the TV show house)
When I went to the appointment I could barely walk without fainting, and I had to lie and a stretcher in the room before they even told me the diagnosis. The resident Dr. took a thorough history and was shocked that I was so ill. He asked, "have you not been to see a dr?!" and I told him how many dr's I'd seen for the last two years. He was able to get all my symptoms and create a timeline that showed many common myeloma symptoms of frequent infections (in my case Ear and Sinus, which is why I was seeing the ENT), vision / migraines, bleeding issues (why I was seeing the GI doctor), the neuropathy and nerve stuff (neurologists) and then the anamia and back pain and skin rash I had not even seen anyone about, other then to hear a number of times I should take Iron pills to bring up my hemoglobin. I was admitted from the clinic to the hospital for bone marrow biopsy the same day, and then kept in the hospital a few weeks for all the tests. I started chemo the same week.
I saw my current specialist a few month later to prepare for my stem cell, and she was able to tell us I had at least stage II myeloma, and likely had it for two or more years. ONe of the reasons my diagnosis was delayed was my symptoms were not the typical broken bone type stuff (though I did have lesion in my Rib, spine, hip) but the bigger ones like bleeding, migraines etc were related to blood Hyperviscocity because the M-Protein was so high.
I responded well to Velcade and Dex and my transplant and have been in remission for two years. I completed two years of monthly pamidronate and am now on a drug free break.
One of the biggest reasons Myeloma was such a left field diagnosis (and maybe who no onelooked for it) is because I was diagnosed at 32, and had it for at least two years, so I would have been 30 years old if they diagnosed me quickly. Very rare. (the word appears all over my chart!) No one in my family ever heard of multiple myeloma, but there is a history of colon cancer in my family.
I was sick with Multiple Myeloma for at least 2 years, likely longer.
Symptoms started one at a time, and I would go to my family doctor who would send me to a specialist, who would in turn tell me there was nothing wrong with me, and come up with a benign explanation for what I was feeling.
In total I saw at least 5 opthamologists, 3 neurologists, 1 urologist, several allergists, 2 Gastrointestinal dr's. 2 ENT's and maybe more...
I was eventually diagnosed in the ER when I collapses at work at my desk and went to the ER. At the time I was seeing a neurologist with a specialty in MS. MS seemed like the a possible diagnosis for my symptoms because many of them seemed nerve related, and included frequent migraines, nerve pains in my hands, problems with my legs, vision problems, weakness, vertigo, extreme fatigue, GI problems, problems with my bladder and others.
At the ER they diagnosed me wit anemia, and told my the protein in my blood was very high, about 10x normal. They did more bloodwork and told me it would take a week to come back, and discharged me with orders for a chest xray, and follow up with internal medicine clinic for difficult to diagnose people (Like the TV show house)
When I went to the appointment I could barely walk without fainting, and I had to lie and a stretcher in the room before they even told me the diagnosis. The resident Dr. took a thorough history and was shocked that I was so ill. He asked, "have you not been to see a dr?!" and I told him how many dr's I'd seen for the last two years. He was able to get all my symptoms and create a timeline that showed many common myeloma symptoms of frequent infections (in my case Ear and Sinus, which is why I was seeing the ENT), vision / migraines, bleeding issues (why I was seeing the GI doctor), the neuropathy and nerve stuff (neurologists) and then the anamia and back pain and skin rash I had not even seen anyone about, other then to hear a number of times I should take Iron pills to bring up my hemoglobin. I was admitted from the clinic to the hospital for bone marrow biopsy the same day, and then kept in the hospital a few weeks for all the tests. I started chemo the same week.
I saw my current specialist a few month later to prepare for my stem cell, and she was able to tell us I had at least stage II myeloma, and likely had it for two or more years. ONe of the reasons my diagnosis was delayed was my symptoms were not the typical broken bone type stuff (though I did have lesion in my Rib, spine, hip) but the bigger ones like bleeding, migraines etc were related to blood Hyperviscocity because the M-Protein was so high.
I responded well to Velcade and Dex and my transplant and have been in remission for two years. I completed two years of monthly pamidronate and am now on a drug free break.
One of the biggest reasons Myeloma was such a left field diagnosis (and maybe who no onelooked for it) is because I was diagnosed at 32, and had it for at least two years, so I would have been 30 years old if they diagnosed me quickly. Very rare. (the word appears all over my chart!) No one in my family ever heard of multiple myeloma, but there is a history of colon cancer in my family.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32