Bonsoir Nancy!
I am not sure about the FLC ratio. I know they took blood last week, but the doctor will only tells us more about all this on our next consultation on May 2nd. Such a long, frustrating wait.
Any inconvenience in treating even if my mom is in between smoldering and active?
I mean, if the disease is not harming, then why not reduce the risk of it harming at a future stage? Does that make any sense, or are we risking her getting immune to the medicine ?
Forums
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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
I am sorry but I do not know the answer to your question! My own case was quite different, and I was in about Stage 3 before my diagnosis was caught, and I was able to start treatments. There was no ambiguity there for me. So I was saved the uncertainty that you are going through now,
Best wishes to your mother and you, Maro!
Best wishes to your mother and you, Maro!
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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
Nancy did you have a stem cell transplant? Did it go well? Is it worth considering?
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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
Yes Maro, I did have a stem cell transplant, in 2010, after induction with Velcade and dexamethasone. Then, since I was not in a complete remission yet, I was allowed to have a year of Revlimid (no dex with it). That was 'consolidation therapy'.
Everything was definitely worth it, since I eventually did get into a remission. I won't go into all the details here, but suffice to say that I have been able to go the last three years on no chemotherapy treatments. With myeloma, you never know though, since clinical relapse is always a possibility.
The thing is, that happened five years ago, and in a different country from yours also. It could be that your mother could do equally well, but on a different range of treatments. That is quite a controversy in the world of myeloma today.
I think that it would be a good idea for you to get a good look at the treatments available in France too. If the expectation is that your mother will do an ASCT [autologous stem cell transplant], does that then include consolidation or maintenance therapy? And if so, are there upper limits applied to how many cycles she may receive? In Canada for example, we do not yet have access to some of the newer drugs, except by 'special access' or on clinical trials. We may not have as much of a 'safety net' for relapse as in the US.
One thing I don't think that you mentioned is her cytogenetic profile. In myeloma, there is stratification of risk according to chromosomal deletions and translocations. Many oncologists will take this into account when designing treatment programs.
Sometimes I think that trying to compare treatments between different countries is like 'pommes et oranges'! But that's how we learn more too. Encore, bonne chance!
Everything was definitely worth it, since I eventually did get into a remission. I won't go into all the details here, but suffice to say that I have been able to go the last three years on no chemotherapy treatments. With myeloma, you never know though, since clinical relapse is always a possibility.
The thing is, that happened five years ago, and in a different country from yours also. It could be that your mother could do equally well, but on a different range of treatments. That is quite a controversy in the world of myeloma today.
I think that it would be a good idea for you to get a good look at the treatments available in France too. If the expectation is that your mother will do an ASCT [autologous stem cell transplant], does that then include consolidation or maintenance therapy? And if so, are there upper limits applied to how many cycles she may receive? In Canada for example, we do not yet have access to some of the newer drugs, except by 'special access' or on clinical trials. We may not have as much of a 'safety net' for relapse as in the US.
One thing I don't think that you mentioned is her cytogenetic profile. In myeloma, there is stratification of risk according to chromosomal deletions and translocations. Many oncologists will take this into account when designing treatment programs.
Sometimes I think that trying to compare treatments between different countries is like 'pommes et oranges'! But that's how we learn more too. Encore, bonne chance!
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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
I don't think there are any issues about maintenance therapy. They do give it here. I'm not sure in what form though.
Yes, I've heard of the cytogenetics, but I don't have those yet. I think the oncologist does, however.
I'm surprised that in Canada they are not up to date on some medications. I always thought the sociaĺ security system and medical advances in Canada were among the best worldwide.
Yes, I've heard of the cytogenetics, but I don't have those yet. I think the oncologist does, however.
I'm surprised that in Canada they are not up to date on some medications. I always thought the sociaĺ security system and medical advances in Canada were among the best worldwide.
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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
Well, in Canada we are very fortunate to have a universal health care system, which is inclusive of all. That is a huge 'plus' for us here. Myeloma treatments, just being one area of health care, may not be as quite up to date as elsewhere.
Off hand, I could think of Kyprolis (carfilzomib) not being applied for approval here yet. Apparently it was approved in the US on phase 2 data, but for Health Canada to look at it, it needs to have Phase 3 trials completed. Also, a drug such as bendamustine [Treanda] is approved for a different use, but not for myeloma. 'Off label' drug use doesn't seem to be used for oncology drugs here. There are other issues of advocacy too.
Once you get into the world of myeloma, you can notice discrepancies between countries. I have to say however, that in my case, everything has gone well so far. I know we could go further here though with access and flexibility of usage of drugs, but that is up to the government to decide. I belong to support groups that include advocacy in their agendas.
Off hand, I could think of Kyprolis (carfilzomib) not being applied for approval here yet. Apparently it was approved in the US on phase 2 data, but for Health Canada to look at it, it needs to have Phase 3 trials completed. Also, a drug such as bendamustine [Treanda] is approved for a different use, but not for myeloma. 'Off label' drug use doesn't seem to be used for oncology drugs here. There are other issues of advocacy too.
Once you get into the world of myeloma, you can notice discrepancies between countries. I have to say however, that in my case, everything has gone well so far. I know we could go further here though with access and flexibility of usage of drugs, but that is up to the government to decide. I belong to support groups that include advocacy in their agendas.
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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
Happy to hear that the treatment and the stem cell transplant went well for you Nancy.
I think my problem is that I see myeloma in a very negative way and, if my mom is to be treated, I see it as a bad thing. Mainly because I've read that it is not a curable disease and that, ultimately, it may be life threatening. I'm not sure if it is still the case today
The drugs today are really good and efficient? Success rate is really good? Are new better medications really on their way?
What astonishes me is how confident and relaxed all of you are. It is admirable and at the same time it comforts me. I really need to manage my stress.
I think my problem is that I see myeloma in a very negative way and, if my mom is to be treated, I see it as a bad thing. Mainly because I've read that it is not a curable disease and that, ultimately, it may be life threatening. I'm not sure if it is still the case today
The drugs today are really good and efficient? Success rate is really good? Are new better medications really on their way?
What astonishes me is how confident and relaxed all of you are. It is admirable and at the same time it comforts me. I really need to manage my stress.
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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
Hello everyone.
We got the results of the MRI today. No lesions were observed. Only 2 little micro spots which they believe are due to the bone marrow biopsy (BMB) + injection of anesthesia in bone (they appear where the BMB was done).
It seems they are going to go for close observation. We have an appointment on Friday to discuss all this with the oncologist.
I have a few questions I would be happy if you could help me with so that I can be prepared on Friday.
1) Is it better to treat even if no CRAB symptoms?
2) Can close observation result in aggravation in case of future symptoms?
3) Can the cancer generalize and go elsewhere if not treated
4) What questions regarding drugs should I ask?
5) High sed rate 135 means inflammation somewhere. If not treated can this result in amyloid deposits ?
I know I should ask the oncologist these questions, but I feel I'd be better prepared if I had some info first.
Would you recommend any other important questions that I should ask?
Many thanks again.
Maro
We got the results of the MRI today. No lesions were observed. Only 2 little micro spots which they believe are due to the bone marrow biopsy (BMB) + injection of anesthesia in bone (they appear where the BMB was done).
It seems they are going to go for close observation. We have an appointment on Friday to discuss all this with the oncologist.
I have a few questions I would be happy if you could help me with so that I can be prepared on Friday.
1) Is it better to treat even if no CRAB symptoms?
2) Can close observation result in aggravation in case of future symptoms?
3) Can the cancer generalize and go elsewhere if not treated
4) What questions regarding drugs should I ask?
5) High sed rate 135 means inflammation somewhere. If not treated can this result in amyloid deposits ?
I know I should ask the oncologist these questions, but I feel I'd be better prepared if I had some info first.
Would you recommend any other important questions that I should ask?
Many thanks again.
Maro
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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, Ca va?
I couldn't reply to all of your questions, and am not a doctor either, but just based on my general knowledge of myeloma, I could say:
1) I don't think treatment would be started without CRAB symptoms. That gets into the subtleties of when smoldering myeloma is morphing into myeloma, IF it does ... It's a grey area though. Others here know more about that.
2) ? I have never heard of this.
3) Yes ,if the cancer is untreated, or even sometimes even if it is being treated, it can leave the bone marrow and cause tumours elsewhere. IMO its not a good idea to let actual myeloma go untreated, if treatments are available. It is a deadly cancer if left untreated, unfortunately.
4) Well, I think that you should just ask about the course of treatments that your doctors would recommend for your mother, including the first line treatments, the SCT if you go that route, and then also about any follow up consolidation or maintenance treatment if provided. You can ask what choices are available, and then research about those choices.
There is lots of info available here about the different drugs. AND it would be good for you to know what myeloma fighting drugs are available to you in France, whether approved for first line, or relapse, or both. Remember that even if certain drugs are not available through health care, they may be available through 'special access' programs or clinical trials.
5) Sorry, don't know about 'sed rates' actually!
Bon après midi! C'est bon pour votre maman que vous est si intéressant pour elle.
I couldn't reply to all of your questions, and am not a doctor either, but just based on my general knowledge of myeloma, I could say:
1) I don't think treatment would be started without CRAB symptoms. That gets into the subtleties of when smoldering myeloma is morphing into myeloma, IF it does ... It's a grey area though. Others here know more about that.
2) ? I have never heard of this.
3) Yes ,if the cancer is untreated, or even sometimes even if it is being treated, it can leave the bone marrow and cause tumours elsewhere. IMO its not a good idea to let actual myeloma go untreated, if treatments are available. It is a deadly cancer if left untreated, unfortunately.
4) Well, I think that you should just ask about the course of treatments that your doctors would recommend for your mother, including the first line treatments, the SCT if you go that route, and then also about any follow up consolidation or maintenance treatment if provided. You can ask what choices are available, and then research about those choices.
There is lots of info available here about the different drugs. AND it would be good for you to know what myeloma fighting drugs are available to you in France, whether approved for first line, or relapse, or both. Remember that even if certain drugs are not available through health care, they may be available through 'special access' programs or clinical trials.
5) Sorry, don't know about 'sed rates' actually!
Bon après midi! C'est bon pour votre maman que vous est si intéressant pour elle.
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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
Merci Nancy!
I am a little confused about your answer to question number 3.
If not treated then it can generalize. So it is dangerous not to treat smoldering myeloma even if no symptoms if i follow your reasoning?
Or is smoldering myeloma not myeloma yet?
And yes, I love my mom very much. She has gone through so much for me and that is why I am so concerned and want the best choices made for her
I am a little confused about your answer to question number 3.
If not treated then it can generalize. So it is dangerous not to treat smoldering myeloma even if no symptoms if i follow your reasoning?
Or is smoldering myeloma not myeloma yet?
And yes, I love my mom very much. She has gone through so much for me and that is why I am so concerned and want the best choices made for her
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
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