Hi Maro, I live in France too, and I have myeloma (type III - the most aggressive - by the French classification). It's been quite a journey but I'm hanging in there most of the time.
Reading about the treatments proposed for your mother it would seem that they differ in different parts of France as I had a different experience.
I had a very high amount of paraprotein kappa (100g/litre - yes really!) when diagnosed and was initially put on Velcade Revlimid and prednisolone (the prednisolone was a mistake that somehow happened somewhere in the hospital administration) and when that proved ineffective the prednisolone was replaced with dexamethasone, which combination was, fortunately, remarkably effective.
I was 55 when diagnosed and they did mention people over 65 tended not to have an SCT as part of their treatment plan - the reason they gave me was that the attendant risks outweighed the potential benefits - they suggested that the risk of secondary infection or some form of system collapse was relatively high.
I was told that the standard treatment was VRD followed by SCT with melphalan - fortunately the VRD has been very effective but the SCT, sadly, wasn't. I had a maintenance prescription of Revlimid on its own for a year after I finished the VRD (it was proposed that I took dexamethasone as well but I refused as I had found the mood and energy swings and insomnia unbearable to live with).
It does seem that the M-spike is relatively low - the haematologists I've seen say that treatment is not generally proposed unless it goes over 10-30g/litre - depending on a number of variables which I don't understand well enough to try and present here.
In terms of the different results from different labs: The electrophoresis test is very delicate and the results can vary depending on the calibration of each individual machine, so it is always better to have tests done in the same lab for them to be comparable (or same two labs if you want to cross-check).
I have quite a bit of French-related data and information so if you have any specific questions about myeloma, related to what happens in France, I'd be happy to try and help.
Best wishes,
Mij
Forums
Re: Questions from France about smoldering myeloma
HI Maro, I am so glad to see that another patient from France, who knows about how myeloma is treated there, has written in!
No, I don't actually know enough about smoldering myeloma to have a well informed opinion on whether or not it should be treated. I think that there is a trend towards earlier treatment than before. Partly that may be based on the availability of more sensitive tests to detect such symptoms as bone lesions. For example, an MRI is better than an X-ray that way. But best to ask your oncologist about that! (Une autre question pour le doctor!).
No, I don't actually know enough about smoldering myeloma to have a well informed opinion on whether or not it should be treated. I think that there is a trend towards earlier treatment than before. Partly that may be based on the availability of more sensitive tests to detect such symptoms as bone lesions. For example, an MRI is better than an X-ray that way. But best to ask your oncologist about that! (Une autre question pour le doctor!).
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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: Questions from France about smoldering myeloma
Hi Maro, Nancy and All!
Some thoughts on Maro's five questions:
1) Smoldering myeloma (SMM) is thought to be a precursor to myeloma and therefore thought to be worth treating in some circumstances. It's complicated, but it can be simplified as only if there are CRAB symptoms at some point. SMM can come and go with some people and if it becomes more active, and CRAB symptoms appear, then that is where treatment is advised.
Tests have become more sensitive over the last few years and SMM is detected more easily and earlier than before. As a result, however, there is no data that is really definitive as the parameters have changed. At some point, the tests will become so sensitive that very low level SMM will be detected which, in a proportion of cases, will never transit into symptomatic myeloma, but we will only know when that has happened with hindsight! (It seems unlikely that we have got there yet.)
It's probably worth noting that although myeloma is a terminal diagnosis, albeit a deferred one, and that more people respond positively -- i.e., live longer, and with better quality of life, from treatment than those who aren't treated -- that this needs to be balanced against the fact that ALL the treatments have attendant risks. Velcade, melphalan, Revlimid, thalidomide, etc. can all actually cause cancer, or other fatal conditions, but the percentage of people affected by these is significantly smaller than those who are helped by them.
So the treatment is not without risk, which is why it's unlikely that treatment would be proposed if no CRAB symptoms.
2) No (I decline any tests which are unpleasant, like bone-marrow biopsies, if they will not add any pertinent information to my diagnosis or treatment)
3) Yes, this can in fact happen whether or not there is treatment
4) It's probably best to ask what your options are - Professor Attal in Toulouse is a pioneer in myeloma research and his treatment plans are very successful. Researching treatments yourself is also important - if for nothing else than to be able to discuss things in an informed manner with your haematologist.
I made some mistakes in my treatment:
- I noticed that I was being given prednisolone instead of dexamethasone, but didn't pursue it further after being assured that 'It's the same'. I should have done more research and been more assertive.
- I didn't research the potential pros and cons of stem cell transplant versus VRD sufficiently. The stem cell transplant was a truly terrible experience and it yielded no benefits. My haematologist subsequently said that some evidence suggested that there was no overall benefit of SCT compared to VRD. I wish I'd known before! I have never fully recovered from the SCT in terms of loss of energy and fatigue
- I had a bad allergic reaction to the Bactrim and, combined with the effects of the anticoagulant Arixtra, led to a subdural haematoma which, according to the neurologist, I was lucky to not suffer permanent brain damage from. My mistake was to keep taking them as I got more ill. This was because, when I had the haematoma, I was misdiagnosed by two doctors in general practice who thought it was just a reaction to the chemo. I knew it wasn't, but the symptoms were so severe (projectile vomiting, collapse/fainting, agonising pain) that it was difficult to be assertive and trust my sense of what was happening - which turned out to be right.
I also made some GOOD decisions relating to treatment - albeit accidentally in one case:
- When they finally switched from prednisolone to dexamethasone -- by which time I had partially recovered from the news of the diagnosis and some of the more intense symptoms -- I was following the treatment plan very closely due to the previous mistake and ended up insisting on what turned out to be a double dose of dexamethasone. (In fairness to me, it was ambiguous in the haematologist's prescription.) But it had an incredibly beneficial result -- my Ig Kappa reduced from 65g/litre to 17g/litre in one treatment. Several doctors were both very impressed by the results and highly amused at the way it happened.
- I declined to take amoxicillin as a preventive antibiotic. I discussed this with my consultant, who gave me the option of having the Amoxy to hand rather than risk diarrhoea, mouth ulcers, thrush etc, which are common undesirable effects of taking it long term
- I refused the dexamethasone with the consolidation Revlimid treatment. Taking dex was torture for me and I am so glad I stopped it. The Revlimid worked fine on its own.
5) I don't know about amyloidal deposits with respect to sed rates, but I do know that sed rates are really non-specific and will be high with any infections or even from a bang or knock . Very high rates can be a sign of myeloma, but are not in themselves a cause for concern unless occurring together with particular symptoms and other test results.
Hope this helps
Very best,
Mij
Some thoughts on Maro's five questions:
1) Smoldering myeloma (SMM) is thought to be a precursor to myeloma and therefore thought to be worth treating in some circumstances. It's complicated, but it can be simplified as only if there are CRAB symptoms at some point. SMM can come and go with some people and if it becomes more active, and CRAB symptoms appear, then that is where treatment is advised.
Tests have become more sensitive over the last few years and SMM is detected more easily and earlier than before. As a result, however, there is no data that is really definitive as the parameters have changed. At some point, the tests will become so sensitive that very low level SMM will be detected which, in a proportion of cases, will never transit into symptomatic myeloma, but we will only know when that has happened with hindsight! (It seems unlikely that we have got there yet.)
It's probably worth noting that although myeloma is a terminal diagnosis, albeit a deferred one, and that more people respond positively -- i.e., live longer, and with better quality of life, from treatment than those who aren't treated -- that this needs to be balanced against the fact that ALL the treatments have attendant risks. Velcade, melphalan, Revlimid, thalidomide, etc. can all actually cause cancer, or other fatal conditions, but the percentage of people affected by these is significantly smaller than those who are helped by them.
So the treatment is not without risk, which is why it's unlikely that treatment would be proposed if no CRAB symptoms.
2) No (I decline any tests which are unpleasant, like bone-marrow biopsies, if they will not add any pertinent information to my diagnosis or treatment)
3) Yes, this can in fact happen whether or not there is treatment
4) It's probably best to ask what your options are - Professor Attal in Toulouse is a pioneer in myeloma research and his treatment plans are very successful. Researching treatments yourself is also important - if for nothing else than to be able to discuss things in an informed manner with your haematologist.
I made some mistakes in my treatment:
- I noticed that I was being given prednisolone instead of dexamethasone, but didn't pursue it further after being assured that 'It's the same'. I should have done more research and been more assertive.
- I didn't research the potential pros and cons of stem cell transplant versus VRD sufficiently. The stem cell transplant was a truly terrible experience and it yielded no benefits. My haematologist subsequently said that some evidence suggested that there was no overall benefit of SCT compared to VRD. I wish I'd known before! I have never fully recovered from the SCT in terms of loss of energy and fatigue
- I had a bad allergic reaction to the Bactrim and, combined with the effects of the anticoagulant Arixtra, led to a subdural haematoma which, according to the neurologist, I was lucky to not suffer permanent brain damage from. My mistake was to keep taking them as I got more ill. This was because, when I had the haematoma, I was misdiagnosed by two doctors in general practice who thought it was just a reaction to the chemo. I knew it wasn't, but the symptoms were so severe (projectile vomiting, collapse/fainting, agonising pain) that it was difficult to be assertive and trust my sense of what was happening - which turned out to be right.
I also made some GOOD decisions relating to treatment - albeit accidentally in one case:
- When they finally switched from prednisolone to dexamethasone -- by which time I had partially recovered from the news of the diagnosis and some of the more intense symptoms -- I was following the treatment plan very closely due to the previous mistake and ended up insisting on what turned out to be a double dose of dexamethasone. (In fairness to me, it was ambiguous in the haematologist's prescription.) But it had an incredibly beneficial result -- my Ig Kappa reduced from 65g/litre to 17g/litre in one treatment. Several doctors were both very impressed by the results and highly amused at the way it happened.
- I declined to take amoxicillin as a preventive antibiotic. I discussed this with my consultant, who gave me the option of having the Amoxy to hand rather than risk diarrhoea, mouth ulcers, thrush etc, which are common undesirable effects of taking it long term
- I refused the dexamethasone with the consolidation Revlimid treatment. Taking dex was torture for me and I am so glad I stopped it. The Revlimid worked fine on its own.
5) I don't know about amyloidal deposits with respect to sed rates, but I do know that sed rates are really non-specific and will be high with any infections or even from a bang or knock . Very high rates can be a sign of myeloma, but are not in themselves a cause for concern unless occurring together with particular symptoms and other test results.
Hope this helps
Very best,
Mij
-
Mijji - When were you/they diagnosed?: 2011
Re: Questions from France about smoldering myeloma
Hello Nancy, Mijji.
Mijji, Your English is perfect!
I would like to thank you for your detailed and prompt very detailed response.
It has been very helpful in general and has mostly answered all my questions.
I am happy to hear that you are finally getting through this illness.
I have a few questions:
1) I would be happy to receive any detailed information regarding the French methods which you could send me; feel free to private message me.
2) How long have you been in remission?
3) You mention that it is a terminal illness. This is something which worries me. Is it really a terminal matter now --still? Are treatments not solving the problem? What are our hopes in respect to finding new treatments on short/medium term that will possibly cure myeloma?
4) You mention RVD was used. The oncologist here told me Revlimid is used only in case of relapse. Perhaps it was used for you due to the advanced stage.
5) One thing I still don’t understand. Smoldering myeloma is a precursor to multiple myeloma. But is it myeloma? Smoldering myeloma does contain the word myeloma. It sure has the abnormalities which can lead to it, but it isn’t it yet. Hmm ?
I read an interesting article about the 10 discoveries made in 2013 by Dr Rajkumar. Have a look at it, it really gives hope.
Here is the link: https://myelomabeacon.org/news/2014/01/25/top-10-discoveries-multiple-myeloma-2013/
A lot of this is still very confusing for me.
I wish you all the best and hope that your remission will last forever …
Mijji, Your English is perfect!
I would like to thank you for your detailed and prompt very detailed response.
It has been very helpful in general and has mostly answered all my questions.
I am happy to hear that you are finally getting through this illness.
I have a few questions:
1) I would be happy to receive any detailed information regarding the French methods which you could send me; feel free to private message me.
2) How long have you been in remission?
3) You mention that it is a terminal illness. This is something which worries me. Is it really a terminal matter now --still? Are treatments not solving the problem? What are our hopes in respect to finding new treatments on short/medium term that will possibly cure myeloma?
4) You mention RVD was used. The oncologist here told me Revlimid is used only in case of relapse. Perhaps it was used for you due to the advanced stage.
5) One thing I still don’t understand. Smoldering myeloma is a precursor to multiple myeloma. But is it myeloma? Smoldering myeloma does contain the word myeloma. It sure has the abnormalities which can lead to it, but it isn’t it yet. Hmm ?
I read an interesting article about the 10 discoveries made in 2013 by Dr Rajkumar. Have a look at it, it really gives hope.
Here is the link: https://myelomabeacon.org/news/2014/01/25/top-10-discoveries-multiple-myeloma-2013/
A lot of this is still very confusing for me.
I wish you all the best and hope that your remission will last forever …
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions from France about smoldering myeloma
Hi Maro,
The best I can probably say in response to your questions is:
1) It's easier for me to reply to specific questions than to try and give a general synopsis of French treatment protocols. Or you could check out Pr. Attal's writing - he has published at least one paper in English which is available through the Beacon's archives
2) Strictly speaking there is no remission in myeloma (though people sometimes refer to significantly-reduced myeloma activity as such). Once you have myeloma, even when activity drops to a non-quantifiable level, you are still waiting for the other shoe to drop.
3) It is hard to accept but it is terminal. Finding a way of coming round to acceptance through the fear, confusion, denial, grief and anger which arise is a significant part of dealing with the diagnosis. Unfortunately, no-one has been cured of myeloma, although some people have lived for extended periods with it - over ten years - others have died with myeloma, but of other health issues - like cardiac arrest.
4) It depends on the haematologist, mine uses VRD as an initial treatment, my understandig is that any haematologist would using Attal's protocols would do this.
5) I'm afraid I don't know the answer to this
It is confusing and frightening and in some ways even more complicated when it's someone you are close to rather than you yourself who has the disease. Because we tend to respond to problems by taking action, by trying to do things to help get control of the situation, we can end up doing this vicariously for someone with myeloma.
In some ways this may be helpful but I found it very tiring to deal with when people I know reacted like this - in a way they are expressing their concern by trying to make things better but in my case what I needed was just for people to be with me and, failing that, to try and understand how things were/are for me.
Otherwise it just felt like I was having to look after the other person's anxiety and grief, because when someone is trying to make things better instead of appreciating what is going on, it is a way of not facing up to the terminal diagnosis and I just didn't, and still don't, have the energy or strength to try and pretend that that was what was happening.
Take care of yourself with all this
Wishing you well
Mij
The best I can probably say in response to your questions is:
1) It's easier for me to reply to specific questions than to try and give a general synopsis of French treatment protocols. Or you could check out Pr. Attal's writing - he has published at least one paper in English which is available through the Beacon's archives
2) Strictly speaking there is no remission in myeloma (though people sometimes refer to significantly-reduced myeloma activity as such). Once you have myeloma, even when activity drops to a non-quantifiable level, you are still waiting for the other shoe to drop.
3) It is hard to accept but it is terminal. Finding a way of coming round to acceptance through the fear, confusion, denial, grief and anger which arise is a significant part of dealing with the diagnosis. Unfortunately, no-one has been cured of myeloma, although some people have lived for extended periods with it - over ten years - others have died with myeloma, but of other health issues - like cardiac arrest.
4) It depends on the haematologist, mine uses VRD as an initial treatment, my understandig is that any haematologist would using Attal's protocols would do this.
5) I'm afraid I don't know the answer to this
It is confusing and frightening and in some ways even more complicated when it's someone you are close to rather than you yourself who has the disease. Because we tend to respond to problems by taking action, by trying to do things to help get control of the situation, we can end up doing this vicariously for someone with myeloma.
In some ways this may be helpful but I found it very tiring to deal with when people I know reacted like this - in a way they are expressing their concern by trying to make things better but in my case what I needed was just for people to be with me and, failing that, to try and understand how things were/are for me.
Otherwise it just felt like I was having to look after the other person's anxiety and grief, because when someone is trying to make things better instead of appreciating what is going on, it is a way of not facing up to the terminal diagnosis and I just didn't, and still don't, have the energy or strength to try and pretend that that was what was happening.
Take care of yourself with all this
Wishing you well
Mij
-
Mijji - When were you/they diagnosed?: 2011
Re: Questions from France about smoldering myeloma
Bonjour Maro and Mijji, Today I had the opportunity to listen to a talk given to my patient support group by Dr. Xavier Leleu, MD, PHD. He is an associate professor at the Department of Hematology, Hopital Claude Huriez, CHRU, Lillle , France. (He said that Lille is in the NW of France).
I specifically told him about you trying to help your mother, and asked about the health care system in France. He said that there is universal health care for cancer patients in France, and that you were welcome to approach him, or his hospital. Also, France is divided into several regional zones for health care.
I was very impressed with his talk, which was titled 'How the latest research has changed the long-term management of myeloma'.
Perhaps this will help you out in your quest for good care for your mother!
I specifically told him about you trying to help your mother, and asked about the health care system in France. He said that there is universal health care for cancer patients in France, and that you were welcome to approach him, or his hospital. Also, France is divided into several regional zones for health care.
I was very impressed with his talk, which was titled 'How the latest research has changed the long-term management of myeloma'.
Perhaps this will help you out in your quest for good care for your mother!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Questions from France about smoldering myeloma
Hello Nancy!
I am very touched by the fact that you thought to ask about my mom's case. Thank you.
Did you mean social security by speaking about the health care system in France?
Was Dr Xavier Leleu in Canada for this occasion? I would be happy to hear a bit more about his presentation. Was it an optimistic view of things? Any good news in terms of progress in research and solutions? Tell me more...
Mijji: Thanks for your reply. I am French so I can read his articles in French if you have anything interesting you could recommend me to read.
Wishing you all well.
I am very touched by the fact that you thought to ask about my mom's case. Thank you.
Did you mean social security by speaking about the health care system in France?
Was Dr Xavier Leleu in Canada for this occasion? I would be happy to hear a bit more about his presentation. Was it an optimistic view of things? Any good news in terms of progress in research and solutions? Tell me more...
Mijji: Thanks for your reply. I am French so I can read his articles in French if you have anything interesting you could recommend me to read.
Wishing you all well.
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions from France about smoldering myeloma
Hi Maro, It was a very interesting talk by Dr. Leleu. Sometimes we patients are invited for a presentation if a guest oncologist is talking to the haematological oncologist's department, so I always try to attend those talks. Dr. Leleu will also be presenting a talk in Edmonton, Alberta, on Saturday at a patients conference there.
He is a top researcher in myeloma and if you go into the 'search' portion of the Beacon, he is referenced, in particular to the approval of pomalidomide in France. That is a topic that I am interested in, since I have an interest in drug advocacy. He did not specifically address the topic of smoldering myeloma, but did outline the different treatment protocols for transplant 'eligible' and 'ineligible' patients. (In a nutshell, younger and older patients).
It was a very good talk, and we in the audience were drawing comparisons between the French and Canadian systems. If you have the chance and are in that area of France, he would be a top expert to consult, IMO.
Yes,he was fairly optimistic, in the sense that he has been treating patients since at least 1998, and a lot has improved since then. He was there for when thalidomide and stem cell transplants were introduced, and that is going back a ways in myeloma treatments. He is keen on 'maintenance' therapy actually.
I specifically asked him about the health care system in France, and mentioned the Beacon and your situation. It was interesting for all of us in the audience I am sure, since how would we know the system in another country unless we ask about it?
He is a top researcher in myeloma and if you go into the 'search' portion of the Beacon, he is referenced, in particular to the approval of pomalidomide in France. That is a topic that I am interested in, since I have an interest in drug advocacy. He did not specifically address the topic of smoldering myeloma, but did outline the different treatment protocols for transplant 'eligible' and 'ineligible' patients. (In a nutshell, younger and older patients).
It was a very good talk, and we in the audience were drawing comparisons between the French and Canadian systems. If you have the chance and are in that area of France, he would be a top expert to consult, IMO.
Yes,he was fairly optimistic, in the sense that he has been treating patients since at least 1998, and a lot has improved since then. He was there for when thalidomide and stem cell transplants were introduced, and that is going back a ways in myeloma treatments. He is keen on 'maintenance' therapy actually.
I specifically asked him about the health care system in France, and mentioned the Beacon and your situation. It was interesting for all of us in the audience I am sure, since how would we know the system in another country unless we ask about it?
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Questions from France about smoldering myeloma
Ok appointment today is done with onco.
Surveillance for now every 3 months blood checkup.
FLC ratio 0.11
Beta2microglobulin is 2.9mg (so below the 3.5 in Iss)
Albumin is 50
Complete Body MRI clean shows no lesions.
Just a question: is the flc ratio not too out of range? Should mri be performed more regularly?
Many thanks
Surveillance for now every 3 months blood checkup.
FLC ratio 0.11
Beta2microglobulin is 2.9mg (so below the 3.5 in Iss)
Albumin is 50
Complete Body MRI clean shows no lesions.
Just a question: is the flc ratio not too out of range? Should mri be performed more regularly?
Many thanks
-
Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Questions from France about smoldering myeloma
Bonjour Maro, I am glad to hear that your mother has a three month hiatus before being checked up on again. This is the reality of SMM or active myeloma actually -- regular check ups that continue indefinitely, whether or not one is taking active treatments. But for you two, as 'newbies', it will give you a chance to investigate and learn more, whether or not her SMM ever does progress (hope not!).
Best wishes to you, and i have learned this week that there is excellent care available in France, and many clinical trials too! I guess you could research as to where are the centres of excellence for myeloma in France, or maybe other readers know more about that.
Best wishes to you, and i have learned this week that there is excellent care available in France, and many clinical trials too! I guess you could research as to where are the centres of excellence for myeloma in France, or maybe other readers know more about that.
-
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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