I am 58 and was diagnosed about one and a half years ago.
Found Out By Accident
I found out that I had multiple myeloma because of one doctor, a friend of me and the family. I complained to her that I had pneumonia twice within a year, both times without a lot of symptoms, I just needed a bit more asthma medicine, and then of course antibiotics when my ordinary doctor found out that I had the infection.
I was not sick or home from work one single day.
The friend-of-the-family-doctor took it serious that I said that I found it strange to catch pneumonia two times within a short time frame, and that it was the first time ever in my life that I had an infection, and she took large amounts of blood samples, and sent me to extra tests at a laboratory.
Note: Health care in Denmark is free for all, and any doctor, not only my own, can order these tests taken.
The short version – she was shocked to find M-component (M-spike) in the blood.
The Fast Track
Historically, patients with new symptoms often had to go through a long line of tests, first testing for one condition and then the next. Thereby prolonging the period of uncertainty.
A new model has been introduced in some Danish regions: The Diagnostic Unit. At this unit, instead of sending you to first one set of examinations in one long sequential line, they use an umbrella model ... covering nearly everything in parallel.
After only one week they had checked me for a lot of cancers and other serious conditions. And while doing this they had also ordered a bone marrow biopsy, a full body x-ray, full MRI and PET scans.
And of course urine and more tests for M-component. After about 2-3 weeks all together they had me mapped out.
Hematological Department
I was at once redirected to the hematological department of the same hospital, where the head of the department is a known myeloma specialist and a few other of the leading physicians are also myeloma specialists.
My Numbers - June 14, 2014
Kappa/lambda free light chain ratio: 4.06
Kappa free light chain level: 192
Lambda free light chain level: 47.3
M-component: 22.7 g/L (2.27 g/dL)
They explained that except for a little low red blood count and two, possible three, places in my skeleton / bones where they suspected attack by myeloma, there was no damage. No kidney problems or anything like it. For the first time, I was told about the CRAB description of symptoms.
The bone marrow biopsy (BMB) was only partly useful due to bad sampling. The FISH could not be done and a new BMB was done later.
I was of course shocked, kicked off my feet, scared. From absolutely healthy and with not-one-single-sick-day for 30 years to a patient with a deadly and assumed incurable cancer patient within 4 weeks.
Treatment At Once
Based on the result, the national Danish cancer plan indicate that induction treatment has to start at once with autologous stem cell transplantation (ASCT) after 3-5 months depending on the results. I understand that the cancer patient has the right to have treatment started within a very few weeks after full diagnosis.
The team at the hospital suggested another few tests and then starting Velcade, cyclophosphamide, and dexamethasone (VCD) treatment the last week of June. 3-5 series of 3 weeks with 1 week rest in between. And then the ASCT, depending on the results.
I was shocked and had planned for a summer vacation in our cottage – 4-5 weeks with my daughter and my son. I had to plan for how to reorganize my company when maybe having to be away for treatment .... now knowing how chemo, ASCT, and the myeloma would affect me. And having to go into hospital for 1-4 days every week for maybe 5 months plus then ASCT. What a change!
I asked my doctor whether he would find it irresponsible to postpone treatment for 5-6 weeks so that I could have my vacation and do some planning.
I also needed to try to make my head and psyche comprehend what was happening. Was I dying?
I had of course read a lot of scientific articles on the net, the prognosis and average time to live after diagnosis. The symptoms and terrible conditions that multiple myeloma causes for many patients. And while the doctors at the hospital did a lot to explain to me that every case is special, it took me some time to get back to my usual optimistic and fatalistic way of seeing things.
They came to the result that a good vacation would do no damage. And my doctor specifically recommended good red wine and doing whatever I enjoyed.
The start of the treatment was set to August 8th 2014.
I of course had to go into hospital a few times for test, and while the hospital is 6 km (4 miles) from my home it is "only" 350 km (220 miles) from our cottage in Sweden:-)
My Numbers - July 10, 2014 (Still Without Treatment)
Kappa/lambda free light chain ratio: 3.0 down from 4.06
Kappa free light chain level: 129 down from 192
Lambda free light chain level: 43 down from 47.3
M-component: 12.5 g/L (1.25 g/dL), down from 22.7 g/L
Vacation
I was told: Do not lift anything heavier than 3 kg (7 pounds). Do not carry even 3 kg for a long distance. I was very careful in the beginning. And I did not chop any wood for the winter, I would not be going to the cottage anyhow ... due to treatment. But after a few weeks, I threw all caution away and started windsurfing on our local lake. How stupid, I was afraid every time I felt even the slightest bit of back pain ... and who would not feel pain when surfing after not having been on the board for a few years.
Yes, call me stupid. But I had to.
You could also call it "being in denial".
Treatment Started
The week up to August 8, 2014 when treatment should start I was at the hospital for tests most of the days. To dentist etc. etc.
On August 6th I got a new full set of blood tests.
My Numbers - August 6, 2014 (Still Without Treatment)
Kappa/lambda free light chain ratio: 1.77 down from 3.0 and from 4.06
Kappa free light chain level: 90.1 down from 129 and from 192
Lambda free light chain level: 51 up from 43 and from 47.3
M-component: 8.3 g/L (0.83 g/dL), down from 12.5 and from 22.7
Treatment
During the next period I came into hospital 3 times a week, except for the fourth week in each cycle, where I only came once.
I got VCD plus a lot of extra medication to fight side effects – nausea, virus, kidney damage etc. etc. A lot for someone who had previously taken nothing but asthma medicine.
For the first 2 cycles I had no side effects, but after about 2 months I got minor symptoms, probably from Velcade. Numbness / no feelings in my feet and a subjective feeling of cushions around my toes. Not really pain, or only slightly painful on a few occasions.
The BMB was also repeated and they found none of the problematic mutations that could indicate a worse-than-average prognosis.
The BMB was OK, not too painful (as I have written about in another tread about people's experience with BMBs).
During November I went through stem cell harvest. One day of terrible pain from the Neupogen, but I have also written about this somewhere else at the Beacon.
To ASCT Or Not To ASCT?
During the autumn and while going through the induction treatment I attended some presentations by Danish and international myeloma specialists about different aspects of myeloma and the treatment. One presentation was especially interesting. The head doctor from my own hospital department had worked with myeloma for many years and held a session on the novel treatments and their impact on future treatment regimens. She explained that, in her mind, in a few years we would probably only use stem cell transplants at some very few cases. Not in general. And that some of the novel treatments given now was leading to complete response for long periods.
Thought provoking, when you are only a month or three from your own ASCT.
I spoke with my own doctor, who of course works with his boss:-) and I was convinced to go ahead. At the moment they still feel that it is too early to change the track from ASCT as the standard.
ASCT In November And December
I have read a lot of good posts about different approaches to ASCT – doing it while staying at home or being hospitalized. Here the standard is to hospitalize during the full period, being allowed to stay / sleep / eat at home for the first 2-5 days, and then staying in isolation at the hospital throughout the rest of the treatment.
I was in hospital from late November until December 16, 2014. And in isolation most of the time.
I guess that my experience was somewhat average. A bit worse than some, easier than others.
I got extremely tired and it was very difficult for me to do any exercise, read, etc. etc.
I lost my appetite. And after a week my stomach was out of order and my nausea was dominant.
I got 6 different bacteria infections in my intestines and other places, but the hospital was on guard and took blood samples throughout the day.
They used the central line for nutrition and medicine but because they ended up giving 6 types of antibiotics, they also had to establish an extra line.
After about a week from being given the stem cells back my white and red blood cells started to rise and I was lucky, they never got so low that I needed blood infusions (they only got to talk about it).
Home Again
I was very weak, but when the infections was on their way down we agreed that I could stay at home.
Friends had made everything ready for me and it was wonderful to be back in my own bed.
Eating and getting out of bed was not easy. But being out of hospital was a great step forward.
By the way: Have to mention that I have never been treated with so much care and professionalism as at the Hematological Department at Herlev Hospital! Thanks for kindness and being so fantastic.
January and February 2015 was spent on the sofa ... in the beginning, the main exercise was to go from the sofa to sit in a chair for 15 minutes. But after a few days I started with short walks and then longer and longer. And early February I slowly started working again.
My Numbers - November 28, 2014 - After Induction, Before ASCT
Kappa/lambda free light chain ratio: 0.54 down from 1.77 and from 3.0 and from 4.06
Kappa free light chain level: 20.1 down from 90.1 and from 129 and from 192
Lambda free light chain level: 37.5 down from 51 and from 43 and from 47.3
M-component: 0.0 g/L (0 g/dL) down from 8.3 and from 12.5 and from 22.7 g/L
And since then all numbers are within the normal area. Zero M-component and nothing else to talk about. Having my blood and urine tested every 4 weeks since January.
This "report" is pretty factual and does of course not give the full picture ... life is much more than facts:-)
I will add some more details on the ASCT, the trial I joined, and my thoughts and some of the many questions I have and would some day like to have answers to.
Greetings and best wishes to everyone else with and without multiple myeloma.
Lev
Forums
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Well well, not too bad so far
Follow up: The trial
After the autologous stem cell transplant (ASCT), I was offered to join a trial.
While follow-up treatment is, as I understand it, not ordered as standard in Denmark, most if not all patients are offered a trial after the ASCT. I was informed that I would be offered to join one of a number of trials already last summer, before the induction.
Just after being sent home from the hospital in January 2015, I was informed about a trial that my myeloma doctor found would be interesting for me: eurodract 2013-002076-41, done in Belgium, Sweden, Italy, Spain, Austria, Germany, Holland, UK, Poland and Norway ... and obviously in Denmark (clinicaltrials.gov information about the trial).
I decided to join. At first I got 3 mg of oral ixazomib citrate every week for 3 weeks and one week off. Then, according to the plan, I got an increased dose of 4 mg for 3 weeks with one week off. The treatment is given as small capsules.
Every 4 weeks I have to go to the hospital to have my blood and urine tested and to get the medicine for the next month. Except for calcium and Zometa, there are no other medications or treatments given.
The tests are done in double: One set done by my Danish hospital and the other set is sent to Millennium Pharmaceuticals. I understand that they are also testing for minimal residual disease, a test I still hope to learn more about.
All numbers have remained within the normal and so far no reason to leave the trial. No M-component and normal kappa/lambda free chains.
Side Effects
The trial is a randomized, placebo-controlled, double-blind study, and I believe that 40% will receive a placebo.
After my induction my initial symptoms (peripheral neuropathy) nearly disappeared. But after 1-2 months in the trial, I got symptoms again. A feeling of having pretty cold feet, no bad pain but sometimes a little bit for a short while and increased cushion feeling in toes and feet. Therefore I am pretty sure that I am not getting the placebo.
Sometimes I am tired, and at times very tired, in the evening and sometimes I collapse on the weekends, doing nearly nothing. But this could also be a result of working to much
After 1 year in the trial, I will have a new BMB done. When something happens or when the BMB is done, I will write a follow-up here.
P. S. - I know that I am writing a lot. But it has been great for me to read the stories from other patients, and I therefore want to give back, now when I feel that I have something to tell. The journey has so far not been too terrible and life is definitely good, and I hope that a lot of other people are going to fare as well as I am – or even better – with all the novel treatments coming up.
After the autologous stem cell transplant (ASCT), I was offered to join a trial.
While follow-up treatment is, as I understand it, not ordered as standard in Denmark, most if not all patients are offered a trial after the ASCT. I was informed that I would be offered to join one of a number of trials already last summer, before the induction.
Just after being sent home from the hospital in January 2015, I was informed about a trial that my myeloma doctor found would be interesting for me: eurodract 2013-002076-41, done in Belgium, Sweden, Italy, Spain, Austria, Germany, Holland, UK, Poland and Norway ... and obviously in Denmark (clinicaltrials.gov information about the trial).
I decided to join. At first I got 3 mg of oral ixazomib citrate every week for 3 weeks and one week off. Then, according to the plan, I got an increased dose of 4 mg for 3 weeks with one week off. The treatment is given as small capsules.
Every 4 weeks I have to go to the hospital to have my blood and urine tested and to get the medicine for the next month. Except for calcium and Zometa, there are no other medications or treatments given.
The tests are done in double: One set done by my Danish hospital and the other set is sent to Millennium Pharmaceuticals. I understand that they are also testing for minimal residual disease, a test I still hope to learn more about.
All numbers have remained within the normal and so far no reason to leave the trial. No M-component and normal kappa/lambda free chains.
Side Effects
The trial is a randomized, placebo-controlled, double-blind study, and I believe that 40% will receive a placebo.
After my induction my initial symptoms (peripheral neuropathy) nearly disappeared. But after 1-2 months in the trial, I got symptoms again. A feeling of having pretty cold feet, no bad pain but sometimes a little bit for a short while and increased cushion feeling in toes and feet. Therefore I am pretty sure that I am not getting the placebo.
Sometimes I am tired, and at times very tired, in the evening and sometimes I collapse on the weekends, doing nearly nothing. But this could also be a result of working to much
After 1 year in the trial, I will have a new BMB done. When something happens or when the BMB is done, I will write a follow-up here.
P. S. - I know that I am writing a lot. But it has been great for me to read the stories from other patients, and I therefore want to give back, now when I feel that I have something to tell. The journey has so far not been too terrible and life is definitely good, and I hope that a lot of other people are going to fare as well as I am – or even better – with all the novel treatments coming up.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Well well, not too bad so far
The Autologous Stem Cell Transplant (ASCT) As I Experienced It
I have chosen to expand the story a little bit with some more details.
I got the high-dose melphalan chemo late November and a few days after I was hospitalized according to the plan. And on December 4th I got my stem cell transplant, chewing ice cubes during transplant and for an hour or two after to counter damage to mouth and throat.
The transplant was quite a ceremony. Two doctors and 3 nurses handling the stem cells, warming them from the ultra cold to just being cold. Checking, double checking, triple checking.
The smell of onion, or whatever it was, was as I understand it pretty dominating in the room for a day or two.
During the next days, the effect of the chemo really set in. Vomiting, tiredness, and my digestion getting completely out of order. I will spare you the details
My numbers kept dropping, low on blood platelets, white blood cells, and red blood cells. But after 7-8 days the new stem cells settled in and started to work. To me this was somewhat of a miracle ... but to the doctors and nurses it is obviously just business as usual. Good the same.
They were talking about blood transfusions as the numbers started to go up.
For about two weeks I just felt like being on an ocean ship without modern stabilizers and being scared when the next meal was threatening. They tried to convince me to eat, but the mere thought of food had me running for the bathroom – if I was not already there.
I got 6 different infections, but none of the multi-resistant types that all hospitals are afraid of. All the different bacteria that started attacking me were of types that we normally have in the body. When weakened, they can become dangerous. In my case, one of them attacked my digestive system and intestines. Very painful. To ease the pain, they started to give me morphine, but I hallucinated and did not like the experience. Then they found an alternative that did not take all the pain, but it was a good compromise, and after 4-5 days the pain subsided.
I got 6 types of narrow and/or broad-spectrum antibiotics. And this probably did not add to my well being.
That was it, and on December 16th I was allowed to "go" home, while still officially being hospitalized.
After a few weeks I was eating normal and after 1-2 months I was recovering and getting back to work.
While being at hospital in isolation and with nausea, infections, etc., etc., I felt that this was not something I would ever endure again. But in retrospect, and knowing that the effect was good, I am happy I did it.
I have spoken to other myeloma patients and many actually had a much easier ASCT than I had, and some of them with few or very few side effects and with no infections. So, please do not feel scared by my description.
Best regards
Lev
I have chosen to expand the story a little bit with some more details.
I got the high-dose melphalan chemo late November and a few days after I was hospitalized according to the plan. And on December 4th I got my stem cell transplant, chewing ice cubes during transplant and for an hour or two after to counter damage to mouth and throat.
The transplant was quite a ceremony. Two doctors and 3 nurses handling the stem cells, warming them from the ultra cold to just being cold. Checking, double checking, triple checking.
The smell of onion, or whatever it was, was as I understand it pretty dominating in the room for a day or two.
During the next days, the effect of the chemo really set in. Vomiting, tiredness, and my digestion getting completely out of order. I will spare you the details
My numbers kept dropping, low on blood platelets, white blood cells, and red blood cells. But after 7-8 days the new stem cells settled in and started to work. To me this was somewhat of a miracle ... but to the doctors and nurses it is obviously just business as usual. Good the same.
They were talking about blood transfusions as the numbers started to go up.
For about two weeks I just felt like being on an ocean ship without modern stabilizers and being scared when the next meal was threatening. They tried to convince me to eat, but the mere thought of food had me running for the bathroom – if I was not already there.
I got 6 different infections, but none of the multi-resistant types that all hospitals are afraid of. All the different bacteria that started attacking me were of types that we normally have in the body. When weakened, they can become dangerous. In my case, one of them attacked my digestive system and intestines. Very painful. To ease the pain, they started to give me morphine, but I hallucinated and did not like the experience. Then they found an alternative that did not take all the pain, but it was a good compromise, and after 4-5 days the pain subsided.
I got 6 types of narrow and/or broad-spectrum antibiotics. And this probably did not add to my well being.
That was it, and on December 16th I was allowed to "go" home, while still officially being hospitalized.
After a few weeks I was eating normal and after 1-2 months I was recovering and getting back to work.
While being at hospital in isolation and with nausea, infections, etc., etc., I felt that this was not something I would ever endure again. But in retrospect, and knowing that the effect was good, I am happy I did it.
I have spoken to other myeloma patients and many actually had a much easier ASCT than I had, and some of them with few or very few side effects and with no infections. So, please do not feel scared by my description.
Best regards
Lev
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Well well, not too bad so far
Some Of My Questions
After about 18 months with multiple myeloma, induction, stem cell harvest, ASCT, and the trial, I do of course have a lot of questions.
I have chosen not to ask the questions at my monthly review with the responsible doctor, because I want to get the answers when I am ready and when I believe that he and the hospital can actually say something at least half way conclusive.
So I have written an email to my doctor - giving him my questions, but asking him NOT to answer me now. If there are no new (bad) developments, I want to go through everything after my next bone marrow biopsy in February.
But one question is puzzling and confusing me:
How come that my kappa / lambda free light chains and M-component dropped so drastically even before starting the induction treatment?
My numbers - June 14, 2014 at diagnosis
Kappa/lambda free light chain ratio: 4.06
Kappa free light chain level: 192
Lambda free light chain level: 47.3
M-component: 22.7 g/L (2.27 g/dL)
My numbers - July 10, 2014 (Still before treatment)
Kappa/lambda free light chain ratio: 3.0 down from 4.06
Kappa free light chain level: 129 down from 192
Lambda free light chain level: 43 down from 47.3
M-component: 12.5 g/L (1.25 g/dL), down from 22.7 g/L
My numbers - August 6, 2014 (Still without treatment)
Kappa/lambda free light chain ratio: 1.77 down from 3.0 and from 4.06
Kappa free light chain level: 90.1 down from 129 and from 192
Lambda free light chain level: 51 up from 43 and from 47.3
M-component: 8.3 g/L (0.83 g/dL), down from 12.5 and from 22.7
My numbers - November 28, 2014 - After induction, before ASCT
Kappa/lambda free light chain ratio: 0.54 down from 1.77 and from 3.0 and from 4.06
Kappa free light chain level: 20.1 down from 90.1 and from 129 and from 192
Lambda free light chain level: 37.5 down from 51 and from 43 and from 47.3
M-component: 0.0 g/L (0 g/dL) down from 8.3 and from 12.5 and from 22.7 g/L
From an M-component of 22.7 g/L to 8.3 g/L within approximately 6 weeks, and the kappa / lambda moving in the right direction as well. And during induction the normalization continued to complete remission.
Some of my questions:
This was the third, and for now my last, addition to my story. When I have had some time to reflect, I will add some comments about getting cancer and specifically multiple myeloma in a welfare state like here in Scandinavia. It will of course primarily be of interest for Scandinavian, North / Western European, Canadian and maybe Australian / New Zeeland patients.
After about 18 months with multiple myeloma, induction, stem cell harvest, ASCT, and the trial, I do of course have a lot of questions.
I have chosen not to ask the questions at my monthly review with the responsible doctor, because I want to get the answers when I am ready and when I believe that he and the hospital can actually say something at least half way conclusive.
So I have written an email to my doctor - giving him my questions, but asking him NOT to answer me now. If there are no new (bad) developments, I want to go through everything after my next bone marrow biopsy in February.
But one question is puzzling and confusing me:
How come that my kappa / lambda free light chains and M-component dropped so drastically even before starting the induction treatment?
My numbers - June 14, 2014 at diagnosis
Kappa/lambda free light chain ratio: 4.06
Kappa free light chain level: 192
Lambda free light chain level: 47.3
M-component: 22.7 g/L (2.27 g/dL)
My numbers - July 10, 2014 (Still before treatment)
Kappa/lambda free light chain ratio: 3.0 down from 4.06
Kappa free light chain level: 129 down from 192
Lambda free light chain level: 43 down from 47.3
M-component: 12.5 g/L (1.25 g/dL), down from 22.7 g/L
My numbers - August 6, 2014 (Still without treatment)
Kappa/lambda free light chain ratio: 1.77 down from 3.0 and from 4.06
Kappa free light chain level: 90.1 down from 129 and from 192
Lambda free light chain level: 51 up from 43 and from 47.3
M-component: 8.3 g/L (0.83 g/dL), down from 12.5 and from 22.7
My numbers - November 28, 2014 - After induction, before ASCT
Kappa/lambda free light chain ratio: 0.54 down from 1.77 and from 3.0 and from 4.06
Kappa free light chain level: 20.1 down from 90.1 and from 129 and from 192
Lambda free light chain level: 37.5 down from 51 and from 43 and from 47.3
M-component: 0.0 g/L (0 g/dL) down from 8.3 and from 12.5 and from 22.7 g/L
From an M-component of 22.7 g/L to 8.3 g/L within approximately 6 weeks, and the kappa / lambda moving in the right direction as well. And during induction the normalization continued to complete remission.
Some of my questions:
- Is it normal that the numbers improve so much without any treatment?
- What would have happened if I had not gotten the induction treatment?Would the numbers have continued their dramatic trend towards normal?
- And the very egoistic question: What does this mean for my personal prognosis?
This was the third, and for now my last, addition to my story. When I have had some time to reflect, I will add some comments about getting cancer and specifically multiple myeloma in a welfare state like here in Scandinavia. It will of course primarily be of interest for Scandinavian, North / Western European, Canadian and maybe Australian / New Zeeland patients.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Well well, not too bad so far
Greetings, Lev. My name is "Dana", which means "boy from Denmark", but I am actually from the USA. I visited your country a few years ago, though, and loved it!
Thank you for writing your story. Like you, I received CyBorD (VCD) chemotherapy for four or five months, tolerated it well, and had a complete response. But my schedule was different - I got it once a week with no weeks "off". Also, like you, I soon went in for high dose melphalan followed by ASCT. I did not have any pain from the Neupogen used for stem cell collection. I was lucky to not get infections after the transplant, which was notable because I was an out-patient living in a hotel near the hospital. So I was examined every day, but never put in isolation (I walked around that city in a face mask). But I do agree that some of those antibiotic pills produce a bad reaction from the digestive system!
Best wishes for your continuing recovery ...
Thank you for writing your story. Like you, I received CyBorD (VCD) chemotherapy for four or five months, tolerated it well, and had a complete response. But my schedule was different - I got it once a week with no weeks "off". Also, like you, I soon went in for high dose melphalan followed by ASCT. I did not have any pain from the Neupogen used for stem cell collection. I was lucky to not get infections after the transplant, which was notable because I was an out-patient living in a hotel near the hospital. So I was examined every day, but never put in isolation (I walked around that city in a face mask). But I do agree that some of those antibiotic pills produce a bad reaction from the digestive system!
Best wishes for your continuing recovery ...
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Well well, not too bad so far
Hey Lev,
Is care for rarer cancers such as myeloma centred around Copenhagen or do other cities in Denmark provide myeloma expertise as well ?
I know that Icelandic (and Greenlandic/Faroe) patients are sent to Denmark for very specialized medical care, so I figure Denmark has an advanced medical care system; however, do Danish patients ever have to travel to Germany for some aspects of myeloma treatment, or is all of it available in Denmark?
Is care for rarer cancers such as myeloma centred around Copenhagen or do other cities in Denmark provide myeloma expertise as well ?
I know that Icelandic (and Greenlandic/Faroe) patients are sent to Denmark for very specialized medical care, so I figure Denmark has an advanced medical care system; however, do Danish patients ever have to travel to Germany for some aspects of myeloma treatment, or is all of it available in Denmark?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Well well, not too bad so far
Hi Little Monkey,
Denmark is a tiny country, 5.7 million people living within 43.000 km2 (16.600 sq miles).
There are three main areas, the peninsula Jutland at the north of Germany, plus the main islands Fyn in the middle and Sjælland (Zealand) closest to Sweden. All connected by bridges and with a bridge and ferries to Sweden as well.
To give an impression of the concentration of the population: Denmark is divided in 5 regions and two of them are on Sjælland (region Hovedstaden and region Sjælland). The area of Sjælland is only 9.800 km2, but the population is 2.6 million (nearly half of the entire population) is thereby centered around Copenhagen.
In Jutland there is at least one hospital that is participating in trials and has myeloma experts (Vejle Hospital), and on Fyn, Odense University Hospital is also involved in myeloma trials. On Sjælland, I know that Rigshospitalet (the national university hospital) and Herlev Hospital are specializing in myeloma.
Thus, unless you are living in Greenland, The Faroe islands, Island or on Bornholm in the Baltic Sea or on one of the many but thinly populated islands, you do not have to travel far to get to a myeloma expert.
In general, it is my experience that most novel myeloma treatments are available in Denmark, but I also know that allo transplants are not commonly used for myeloma here.
I know that one of my very good friends who also has myeloma was considering the Mayo clinic, especially because of the possibilities with the measles virus treatment. I have not personally heard of people going to other European countries for myeloma treatment.
And you are right. Patients from the North Atlantic countries within or outside the Danish Kingdom are being sent to Copenhagen/Rigshospitalet for treatment for myeloma and for other cancer types. There are only 57.00 inhabitants on Greenland and 49.000 on the Faroe Islands and thus no real basis for local myeloma expertise.
Both Norwegian and Swedish hospitals do of course have splendid myeloma specialists. Due to the large size of those two countries and with only 10 million Swedes and 5 million Norwegians, the "logistic" situation for myeloma patients is not as good as for the Danes. But the systems are the same as the Danish, treatment is free for all.
Danish, Swedish and Norwegian myeloma specialists are working together in the Nordic Myeloma Study Group. Danes/Swedes/Norwegians have the right to settle in the other countries and automatically get the right to treatment in the Scandinavian country they settle in.
Denmark is a tiny country, 5.7 million people living within 43.000 km2 (16.600 sq miles).
There are three main areas, the peninsula Jutland at the north of Germany, plus the main islands Fyn in the middle and Sjælland (Zealand) closest to Sweden. All connected by bridges and with a bridge and ferries to Sweden as well.
To give an impression of the concentration of the population: Denmark is divided in 5 regions and two of them are on Sjælland (region Hovedstaden and region Sjælland). The area of Sjælland is only 9.800 km2, but the population is 2.6 million (nearly half of the entire population) is thereby centered around Copenhagen.
In Jutland there is at least one hospital that is participating in trials and has myeloma experts (Vejle Hospital), and on Fyn, Odense University Hospital is also involved in myeloma trials. On Sjælland, I know that Rigshospitalet (the national university hospital) and Herlev Hospital are specializing in myeloma.
Thus, unless you are living in Greenland, The Faroe islands, Island or on Bornholm in the Baltic Sea or on one of the many but thinly populated islands, you do not have to travel far to get to a myeloma expert.
In general, it is my experience that most novel myeloma treatments are available in Denmark, but I also know that allo transplants are not commonly used for myeloma here.
I know that one of my very good friends who also has myeloma was considering the Mayo clinic, especially because of the possibilities with the measles virus treatment. I have not personally heard of people going to other European countries for myeloma treatment.
And you are right. Patients from the North Atlantic countries within or outside the Danish Kingdom are being sent to Copenhagen/Rigshospitalet for treatment for myeloma and for other cancer types. There are only 57.00 inhabitants on Greenland and 49.000 on the Faroe Islands and thus no real basis for local myeloma expertise.
Both Norwegian and Swedish hospitals do of course have splendid myeloma specialists. Due to the large size of those two countries and with only 10 million Swedes and 5 million Norwegians, the "logistic" situation for myeloma patients is not as good as for the Danes. But the systems are the same as the Danish, treatment is free for all.
Danish, Swedish and Norwegian myeloma specialists are working together in the Nordic Myeloma Study Group. Danes/Swedes/Norwegians have the right to settle in the other countries and automatically get the right to treatment in the Scandinavian country they settle in.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Well well, not too bad so far
Ya, I heard a good joke once; tell someone to go find a Danish-Norwegian dictionary 
I understand Danish slightly better than Norwegian as I studied German in school, and Danish pronounciation is a bit more like German; but I don't know Danish or Norwegian well.
The reason I asked about referal to Germany is that I had a cousin in Central Europe who was refered to a Hospital in Germany for a very specialized surgery; I know that persons from smaller countries in Europe are sometimes sent to Germany for specialized treatments for rare illnesses,
Ya, I am familiar with Scandinavia and Northern Europe having free or nearly free medical care, just like here in Canada.
I understand Danish slightly better than Norwegian as I studied German in school, and Danish pronounciation is a bit more like German; but I don't know Danish or Norwegian well.The reason I asked about referal to Germany is that I had a cousin in Central Europe who was refered to a Hospital in Germany for a very specialized surgery; I know that persons from smaller countries in Europe are sometimes sent to Germany for specialized treatments for rare illnesses,
Ya, I am familiar with Scandinavia and Northern Europe having free or nearly free medical care, just like here in Canada.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Well well, not too bad so far
Hi again,
From what I read in other posts here, I understand that it may not be so easy in some of the more South Eastern European countries, like Romania, Slovenia, Bulgaria and the rest of the ex-Yugoslavian countries. But I understand that some hospitals in Spain are very active in myeloma research and trials.
While the four Scandinavian countries may have tiny populations (all together just +20 million in no, dk & se + 5.5 million in Finland and approx. 600.000 in the North Atlantic nations), the general wealth and very strong infrastructure seem to make sure that the hospitals are capable of most of what is needed.
The small size of the countries may also be important because it makes it more needed to be open to new treatments and international trials.
https://myelomabeacon.org/forum/new-test-and-trial-treatments-available-to-danish-patients-t4166.html?hilit=Danish
And the existing very strong international medical industry in Denmark and the other countries are probably also a factor.
From what I read in other posts here, I understand that it may not be so easy in some of the more South Eastern European countries, like Romania, Slovenia, Bulgaria and the rest of the ex-Yugoslavian countries. But I understand that some hospitals in Spain are very active in myeloma research and trials.
While the four Scandinavian countries may have tiny populations (all together just +20 million in no, dk & se + 5.5 million in Finland and approx. 600.000 in the North Atlantic nations), the general wealth and very strong infrastructure seem to make sure that the hospitals are capable of most of what is needed.
The small size of the countries may also be important because it makes it more needed to be open to new treatments and international trials.
https://myelomabeacon.org/forum/new-test-and-trial-treatments-available-to-danish-patients-t4166.html?hilit=Danish
And the existing very strong international medical industry in Denmark and the other countries are probably also a factor.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Well well, not too bad so far
A tiny update.
Had the monthly consultation with my nurse and doctor and they choose to give me an update. They explained that they have two different methods for analyzing for M-component (M-spike). And since the result of the standard analysis and my kappa / lambda figures had returned to normal, they are using the other method to test for M-component. The results of those tests together with my bone marrow biopsy is that I am in stringent complete remission.
I know that this may be a limited time and that things can change from month to month. But .... so far so good.
Best regards,
Lev
Had the monthly consultation with my nurse and doctor and they choose to give me an update. They explained that they have two different methods for analyzing for M-component (M-spike). And since the result of the standard analysis and my kappa / lambda figures had returned to normal, they are using the other method to test for M-component. The results of those tests together with my bone marrow biopsy is that I am in stringent complete remission.
I know that this may be a limited time and that things can change from month to month. But .... so far so good.
Best regards,
Lev
- The lab results
- results.png (100.51 KiB) Viewed 1918 times
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
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