To help promote Mulitple Myeloma Awareness month I had asked a number of doctors that are excellent multiple myeloma specialists if they would contribute a second opinion for a patient anywhere in the world who was in need of an experts assistance Dr Hofmeister of The James at Ohio State University, Dr. Moreb of Shands at the University of Florida, and Dr. Parameswaran Hari of the Medical College of Wisconsin volunteered to participate. To me they are not only excellent multiple myeloma specialists, but selfless humanitarians as well. I had asked patients to provide their situation in writing to the editor@myelomasurvival.com and the most compelling would be chosen April 1st. So what was the outcome.
___________________________________________________________________________
Dr. Jan Moreb - Professor Bone Marrow Transplant Program, University of Florida, Department of Medicine
This is letter from Kosovo which was selected, and Dr. Moreb has already started the discussion with Arlinda.
Dear Dr. Moreb,
Accidentaly I have seen on the internet the link: http://myelomasurvival.com/1/post/2013/03/multiple-myeloma-awareness-month-and-the-world-renowned-myeloma-specialist-dr-hofmeister-is-providing-a-free-second-opionion.html , where I can be addressed for a second opinon on Multiple Myeloma which recently was the medical diagnosis for my father- 64 years old. We live in Kosovo a new country in South East Europe and with many deficits in the health system.
Please, if you are interested I can send you the medical report in English translated for an second opinon on the treatment, options of the treatment, world centers for the treatment and prognosis of this illness.
Hope to hear from you soon.
Best regards,
Arlinda
____________________________________________________________________________
This is letter from Kosovo which was selected, and Dr. Moreb has already started the discussion with Arlinda.
Dear Dr. Moreb,
Accidentaly I have seen on the internet the link: http://myelomasurvival.com/1/post/2013/03/multiple-myeloma-awareness-month-and-the-world-renowned-myeloma-specialist-dr-hofmeister-is-providing-a-free-second-opionion.html , where I can be addressed for a second opinon on Multiple Myeloma which recently was the medical diagnosis for my father- 64 years old. We live in Kosovo a new country in South East Europe and with many deficits in the health system.
Please, if you are interested I can send you the medical report in English translated for an second opinon on the treatment, options of the treatment, world centers for the treatment and prognosis of this illness.
Hope to hear from you soon.
Best regards,
Arlinda
____________________________________________________________________________
Dr. Craig Hofmeister - Assistant Professor of Internal Medicine at Ohio State University Medical Center
This is the letter from Poland which was selected, and Dr. Hofmeister has already contacted Edyta.
Dear Doctor Hofmeister,
I am writing this email to you as my uncle Stanislaw has been diagnosed with multiple myeloma.
He is 64 and full of life. He lives in the small village in south east corner of Poland (Rzeszow is the nearest town) where the medical care is really poor and especially in this part of Poland we do not have any good specialists who deal with this illness.
He is very lovely person. He is my God father and I love him dearly. He is very brave and decided to take this illness as destiny and God's will and accept that he can die soon but I would like to help him and get second opinion about his illness and methods of treatment he should undertake. He is under care of one doctor but I am not sure if the proposed treatment is the best for him and maybe there is more that can be done for him.
Would you be please so kind to reply to my email so I can send you his full results and what kind of treatment has been offered to him so far.
I would appreciate your reply and your good heart help in this case.
Please help him.
Many thanks
Kind regards,
Edyta Rybak
____________________________________________________________________________
This is the letter from Poland which was selected, and Dr. Hofmeister has already contacted Edyta.
Dear Doctor Hofmeister,
I am writing this email to you as my uncle Stanislaw has been diagnosed with multiple myeloma.
He is 64 and full of life. He lives in the small village in south east corner of Poland (Rzeszow is the nearest town) where the medical care is really poor and especially in this part of Poland we do not have any good specialists who deal with this illness.
He is very lovely person. He is my God father and I love him dearly. He is very brave and decided to take this illness as destiny and God's will and accept that he can die soon but I would like to help him and get second opinion about his illness and methods of treatment he should undertake. He is under care of one doctor but I am not sure if the proposed treatment is the best for him and maybe there is more that can be done for him.
Would you be please so kind to reply to my email so I can send you his full results and what kind of treatment has been offered to him so far.
I would appreciate your reply and your good heart help in this case.
Please help him.
Many thanks
Kind regards,
Edyta Rybak
____________________________________________________________________________
Dr. Parameswaran Hari- Section Head and Clinical Director, Bone Marrow Transplantation and Associate Professor of Medicine, Medical College of Wisconsin, Milwaukee, Wisconsin
This is the letter from a 30 year old with no insurance from Racine, Wisconsin which was selected, and Dr. Parameswaran Hari has already contacted Nicholas.
Dear Doctor Parmeswaran Hari,
Dr. Hari, please save my life. I have a wonderful support system and a good job that's fulltime. I never saw this coming. I have been with my girlriendf for 5 years now and we planned on having a long and fun life together.. My life seemed invincible until 1 year ago on a spring night. I was at a friends party and we were all having such a great time. My friend decided to get on his trampoline and so I followed suit. After a few drinks this was obviously not a good idea. My friend jumped off of his trampoline. I did the same only I landed onto my shoulder HARD and It hurt. I put off seeing the doctor for a few days to see if the pain would eventually go away. It's when I was in the shower and heard a pop followed by my cry of pain that I knew something was seriously wrong. My girlfriend and I went to see the doctor. The Doctor took the usual x-rays. He never acted surprised or suspicious at what he saw, why would he? He has seen so many broken bones in his time. It wasn't until he came into the office after I waited and he said he noticed "something interesting was going on in there and he'd like to take a look at it with an MRI. MRI's cost tons of money, especially without insurance. I politely declined as I explained all my finances would be tied up into this injury as it is. After I healed up I was released and back to a normal life.
Everything was going fine with minor pain. On a saturday afternoon our manager had asked us to remove some donor beds (I work in a plasma center) so that a crew could come in to wax the floors that night. I knew I had been feeling pain for a few weeks in my neck/shoulder area so I really didn't want too. I figured it must have been from repetative motions at work. But I did and this decision changed my life dramatically. As my coworker and I lifted a donor bed I felt a sharp pain in my neck. I could barely move my arm as it was so excruciating. I shyly let my manager know I hurt myself. She wanted me to go to Concentra health care the day after but they were closed because it was a sunday. The first available day for concentra clinic to be open I was sent there. It was there that I met Doctor Krieger. They took x-rays and began putting me into physical therapy. a day later. After a few days or so there was very little progress. I was frustrated because I really wanted to get back into swimming but I couldn't even lift my arm to chest level. I am a big Michael Phelps fan and always joked I was training for the Olympics. About 4 days later I saw doctor Krieger at Concentra again. to have my x-ray impressions read to me He walked me into the physical therapy room and had me lift a few weights to test my limits. He then led me into his office and told me I might want to sit down for this. I could tell he was nervous and wasn't sure how he would say what he was about too. I thought to myself right away, "oh crap, because of my past medical issues with my shoulder workers comp won't cover it". I rreally wish that was the issue but as we all know it wasn't. Even as I write this I have tears in my eyes remembering this day like it was just yesterday. He started to read the radiologist's report explaining, "a soft tissue mass was shown with associated destruction of the second left rib". Not understanding this he then said the words I thought Id never hear, "this could be cancer". Tears streamed down my face as I sat back in my chair floored by this horrible news. My whole world was just flipped upside down. My heart sunk. He said he was very sorry and he'd help me as a resource in anyway he could. I left that day with a broken heart and spirit. I only lived 3 blocks away from Concentra and I remember it was the longest coldest winter walk home of my life. I then called work in tears explaining I needed the day off. The second person I called was my girlfriend on her lunch period. She has been my comforter and support in all of this. She was a little stressed but she took the news quite well and I was impressed by her composure. We both kept thinking it may be something to do with my scoliosis or various other possibilities. After a couple of weeks of visiting the Dr. Krieger at Concentra he decided that physical therapy wasn't working due to my underlying medical issues. He said we would have to end workers comp. because he has to be fair with them. He let me work with him a few more days. I wanted to believe that the physical therapy was working but it wasn't. He wrote me an order for an MRI and sent me to P.D.I. in Franklin. It was there that I met Dr. Robert G. Wells. I had a pretty good idea of his credentials because I googled him. He is a well respected radiologist within the medical community. He was also one of the nicest gentleman I have ever met and quite possibly saved my life. I was led to the area where the MRI would be performed. Never having been in one I can now state that I am not claustrophobic. After what seemed like forever I was finally done with the MRI scan. He then decided to do a CT scan. He confirmed that I had a tumor and clearly explained that it is malignant from what he can see and set a follow up appointment for a core needle biopsy. He did all this knowing I had no insurance but I paid what I could in cash. I saw Dr. Krieger again and he set up an oder for the needle biopsy with Dr. Wells. The biopsy was not painful at all and we had a good conversation while he was working away. The core needle biopsy confirmed that I had a cancer called plasmacytoma. When I got the call from Doctor Krieger I actually kind of laughed at the irony because I work at the plasma center. He said it is an incredibly rare cancer. I walked to his office to pick up my pathologist report.
I did everything I could researching this new thing called plasmacytoma. Hours upon hours on google were spent. I learnt that it is very slow progressing and is usually delt with by a few zaps of radiation or monitored. I also learnt it is more prominent in males over the age of 55! I also discovered it was not fatal so long as it is treated immediately. After a few days I talked with the doctor at the plasma center and he recommended I go to the Aurora Oncology Clinic right across the parkinglot from Concentra because his friend Doctor Malone worked there. I met doctor Ruggeri because Dr. Malone has been so backed up with patients, He was a very nice enthusiastic gentleman. He then looked at all the reports forwarded from doctor Robert Wells office. He explained to me what exactly plasmacytoma was as well as multiple myeloma. A lot of information I already knew from my research. After he got the files from Dr. Wells office he began reading a few reports. It is when he got to the CT scan impressions that left me with another surprise in my lap. This was the first time I had them read to me. He read, "several abnormal leaions in the right clavical, left clavical, right and left second ribs, and the spine were apparent." I knew from research online that this could mean I have multiple myeloma which is considerably more dangerous than plasmacytoma and is fatal. I also knew I was a rare case. More importantly I knew that there was no cure for this.
Here I was only 30 looking at cancer that generally is diagnosed in patients over the age of 50. A skeletal survey (20 x-rays or so), a bone marrow biopsy, blood work, and a PET scan were all done. The bone marrow biopsy was considerably more painful than the core needle biopsy but not as bad as people make it out to be. All tests verified that I had multiple myeloma. The good news is that the calcium level in my blood is low and there's no damage to my kidneys. The cancer was caught early enough before ANY apparent damage to my organs has begun. The bad news, as revealed by the CT Scan is that I have abnormal cell activity in both clavicals, my left femur right above the knee, both ribs, and a small hole in my skull right in the center. Talk about a third eye! Doctor Ruggeri said "it's like I have plasmacytomas in multiple areas". I didn't understamd if I had multiple myeloma or not. So he said he would say it is. I asked how long do I have. Doctor Ruggeri said he would try to get me 10 years at least. 10 years at the age of 30! That is definitely not enought time! I have so much more I want to do in my life. I want to travel and see so many parts of the world. Eventually I wanted to go to school and pursue a career. I have so many more books I wanted to read and skills to learn. I want to experience ALL life has to offer and 10 years just isn't enough. I love my girlfriend with all my heart and I want to live with her and marry her, (provided her father gave his blessings). We just moved in together 3 months ago. I want to know what it is like to spend the rest of my life with her but definitley for more than 10 more years. Ever since my diagnosis I have had so many sleepless nights wanting to stay up as late as I could just so my days last longer. It's like when you sleep everything goes by so fast. I know that if I have any hope of living long enough to see a break through in cancer research then I need the proper care. I just want to live my life as normal as I can. I don't want a death sentence at the age of 30. So can you please help save my life Dr. Hari?
Best Regards,
Nicholas Avery
__________________________________________________________________________________________________
This is the letter from a 30 year old with no insurance from Racine, Wisconsin which was selected, and Dr. Parameswaran Hari has already contacted Nicholas.
Dear Doctor Parmeswaran Hari,
Dr. Hari, please save my life. I have a wonderful support system and a good job that's fulltime. I never saw this coming. I have been with my girlriendf for 5 years now and we planned on having a long and fun life together.. My life seemed invincible until 1 year ago on a spring night. I was at a friends party and we were all having such a great time. My friend decided to get on his trampoline and so I followed suit. After a few drinks this was obviously not a good idea. My friend jumped off of his trampoline. I did the same only I landed onto my shoulder HARD and It hurt. I put off seeing the doctor for a few days to see if the pain would eventually go away. It's when I was in the shower and heard a pop followed by my cry of pain that I knew something was seriously wrong. My girlfriend and I went to see the doctor. The Doctor took the usual x-rays. He never acted surprised or suspicious at what he saw, why would he? He has seen so many broken bones in his time. It wasn't until he came into the office after I waited and he said he noticed "something interesting was going on in there and he'd like to take a look at it with an MRI. MRI's cost tons of money, especially without insurance. I politely declined as I explained all my finances would be tied up into this injury as it is. After I healed up I was released and back to a normal life.
Everything was going fine with minor pain. On a saturday afternoon our manager had asked us to remove some donor beds (I work in a plasma center) so that a crew could come in to wax the floors that night. I knew I had been feeling pain for a few weeks in my neck/shoulder area so I really didn't want too. I figured it must have been from repetative motions at work. But I did and this decision changed my life dramatically. As my coworker and I lifted a donor bed I felt a sharp pain in my neck. I could barely move my arm as it was so excruciating. I shyly let my manager know I hurt myself. She wanted me to go to Concentra health care the day after but they were closed because it was a sunday. The first available day for concentra clinic to be open I was sent there. It was there that I met Doctor Krieger. They took x-rays and began putting me into physical therapy. a day later. After a few days or so there was very little progress. I was frustrated because I really wanted to get back into swimming but I couldn't even lift my arm to chest level. I am a big Michael Phelps fan and always joked I was training for the Olympics. About 4 days later I saw doctor Krieger at Concentra again. to have my x-ray impressions read to me He walked me into the physical therapy room and had me lift a few weights to test my limits. He then led me into his office and told me I might want to sit down for this. I could tell he was nervous and wasn't sure how he would say what he was about too. I thought to myself right away, "oh crap, because of my past medical issues with my shoulder workers comp won't cover it". I rreally wish that was the issue but as we all know it wasn't. Even as I write this I have tears in my eyes remembering this day like it was just yesterday. He started to read the radiologist's report explaining, "a soft tissue mass was shown with associated destruction of the second left rib". Not understanding this he then said the words I thought Id never hear, "this could be cancer". Tears streamed down my face as I sat back in my chair floored by this horrible news. My whole world was just flipped upside down. My heart sunk. He said he was very sorry and he'd help me as a resource in anyway he could. I left that day with a broken heart and spirit. I only lived 3 blocks away from Concentra and I remember it was the longest coldest winter walk home of my life. I then called work in tears explaining I needed the day off. The second person I called was my girlfriend on her lunch period. She has been my comforter and support in all of this. She was a little stressed but she took the news quite well and I was impressed by her composure. We both kept thinking it may be something to do with my scoliosis or various other possibilities. After a couple of weeks of visiting the Dr. Krieger at Concentra he decided that physical therapy wasn't working due to my underlying medical issues. He said we would have to end workers comp. because he has to be fair with them. He let me work with him a few more days. I wanted to believe that the physical therapy was working but it wasn't. He wrote me an order for an MRI and sent me to P.D.I. in Franklin. It was there that I met Dr. Robert G. Wells. I had a pretty good idea of his credentials because I googled him. He is a well respected radiologist within the medical community. He was also one of the nicest gentleman I have ever met and quite possibly saved my life. I was led to the area where the MRI would be performed. Never having been in one I can now state that I am not claustrophobic. After what seemed like forever I was finally done with the MRI scan. He then decided to do a CT scan. He confirmed that I had a tumor and clearly explained that it is malignant from what he can see and set a follow up appointment for a core needle biopsy. He did all this knowing I had no insurance but I paid what I could in cash. I saw Dr. Krieger again and he set up an oder for the needle biopsy with Dr. Wells. The biopsy was not painful at all and we had a good conversation while he was working away. The core needle biopsy confirmed that I had a cancer called plasmacytoma. When I got the call from Doctor Krieger I actually kind of laughed at the irony because I work at the plasma center. He said it is an incredibly rare cancer. I walked to his office to pick up my pathologist report.
I did everything I could researching this new thing called plasmacytoma. Hours upon hours on google were spent. I learnt that it is very slow progressing and is usually delt with by a few zaps of radiation or monitored. I also learnt it is more prominent in males over the age of 55! I also discovered it was not fatal so long as it is treated immediately. After a few days I talked with the doctor at the plasma center and he recommended I go to the Aurora Oncology Clinic right across the parkinglot from Concentra because his friend Doctor Malone worked there. I met doctor Ruggeri because Dr. Malone has been so backed up with patients, He was a very nice enthusiastic gentleman. He then looked at all the reports forwarded from doctor Robert Wells office. He explained to me what exactly plasmacytoma was as well as multiple myeloma. A lot of information I already knew from my research. After he got the files from Dr. Wells office he began reading a few reports. It is when he got to the CT scan impressions that left me with another surprise in my lap. This was the first time I had them read to me. He read, "several abnormal leaions in the right clavical, left clavical, right and left second ribs, and the spine were apparent." I knew from research online that this could mean I have multiple myeloma which is considerably more dangerous than plasmacytoma and is fatal. I also knew I was a rare case. More importantly I knew that there was no cure for this.
Here I was only 30 looking at cancer that generally is diagnosed in patients over the age of 50. A skeletal survey (20 x-rays or so), a bone marrow biopsy, blood work, and a PET scan were all done. The bone marrow biopsy was considerably more painful than the core needle biopsy but not as bad as people make it out to be. All tests verified that I had multiple myeloma. The good news is that the calcium level in my blood is low and there's no damage to my kidneys. The cancer was caught early enough before ANY apparent damage to my organs has begun. The bad news, as revealed by the CT Scan is that I have abnormal cell activity in both clavicals, my left femur right above the knee, both ribs, and a small hole in my skull right in the center. Talk about a third eye! Doctor Ruggeri said "it's like I have plasmacytomas in multiple areas". I didn't understamd if I had multiple myeloma or not. So he said he would say it is. I asked how long do I have. Doctor Ruggeri said he would try to get me 10 years at least. 10 years at the age of 30! That is definitely not enought time! I have so much more I want to do in my life. I want to travel and see so many parts of the world. Eventually I wanted to go to school and pursue a career. I have so many more books I wanted to read and skills to learn. I want to experience ALL life has to offer and 10 years just isn't enough. I love my girlfriend with all my heart and I want to live with her and marry her, (provided her father gave his blessings). We just moved in together 3 months ago. I want to know what it is like to spend the rest of my life with her but definitley for more than 10 more years. Ever since my diagnosis I have had so many sleepless nights wanting to stay up as late as I could just so my days last longer. It's like when you sleep everything goes by so fast. I know that if I have any hope of living long enough to see a break through in cancer research then I need the proper care. I just want to live my life as normal as I can. I don't want a death sentence at the age of 30. So can you please help save my life Dr. Hari?
Best Regards,
Nicholas Avery
__________________________________________________________________________________________________
Dr. Hofmeister, Dr. Moreb, and Dr. Hari, we at www.myelomasurvival.com thank you for your paticipation, and we thank Edyta, and Arlinda, for the love and caring that they have shown for their family members in need. Nicholas, your letter was so compelling and moving. May God Bless your myeloma journey, and we will continue to follow up with Edyta, Arlinda, and Nicholas to see how their myeloma journeys unfold.
Best Regards and toghether we will SAVE LIFE/ Gary Petersen editor@myelomasurvival.com
Best Regards and toghether we will SAVE LIFE/ Gary Petersen editor@myelomasurvival.com
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