Dear friends,
I got a bone marrow biopsy, but I heard a rumor that it was slightly polluted with blood. When I asked a doctor about my results from the FISH test I understood that it had not been made, and that it was not relevant. She seemed to be irritated by my question.
Question: How important is it for me that those tests were made, and that I know the results?
Details, if relevant, but the question above is my important issue right now. The Danish Cancer plan states that the FISH analysis and other chromosome tests must be taken (I have quoted the official text in English translation further down).
In a few years I turn sixty. Male, 192 cm high (6' 4"), 95 kg (209 lbs). Not sporty, but many days leaving the car at home and taking my bicycle to work, 20 km each way. Take it easy, no racing.
Diagnosis And Treatment So Far
Very few symptoms, but enough to make my GP test for multiple myeloma. Mainly tired and a little low on haemoglobin (red blood cells). M-component showed up as 22 g/L (2.2 g/dL). Also free chains etc.
X-ray, MR scan and PET scans showed slight damage to one bone in my shoulder and the one of my hip bones. No real fracture danger.
No kidney problems, no calcium in the blood, no other danger signals.
Bone marrow biopsy showed multiple myeloma cells.
I got the multiple myeloma diagnosis late June 2014 and the Danish Cancer Package for Myeloma at once offered the "officially" prescribed treatment plan as the first choice for me to accept.
Treatment Plan
3 or 4 x 3 week initial treatments with cyclophosphamide / Velcade / dexamethasone (CyBorD / VCD), stem cell stimulation, harvest, high dose chemo and then stem cell transplantation.
Plus a lot of treatment to make sure that I do not catch virus, infections, to make sure that dead cancer cells are washed out through the kidneys etc. etc. And treatment against nausea and other not wanted results of the treatment. Blood tests 2-3 times per week.
They mention that after that I can choose to join some of the experiments with continued treatment. But I can also choose to wait and see under tight surveillance. Some times you want to ask the doctor: What would you do if it was you who had to choose. But they do actually signal to you: "take the full package".
All treatment in Denmark is absolutely free for all, and they seem open to discuss alternatives to the standard plan.
They have to start treatment within a very few weeks from your diagnosis and they wanted to start me mid July. I asked the chief physician if they could wait and let me have my summer vacation first. He said that from my numbers, and the fact that I showed no real acute danger signals, he would actually suggest a good vacation, "drink some red wine and enjoy".
Treatment was then planned to start on August 8th with the first 3 week CyBorD + all the other pills. And so I did.
Some numbers
M-component
6 June: 22.7 g/L – 10 July: 12.5 – 6 August: 8.5 – 26 August: 3.0
So it dropped from > 22 to 8.3 before the treatment and after the first set of CyBorD it dropped to 3.
Kappa and lambda free light chains
My kappa lambda figures are also changing to the better, and did so even before the treatment. Treatment began on August 8th.
Kappa/Lambda Ratio - newest value first
15 August: 0.61
6 August: 1.77
10 July: 3
11 June: 4.06
Kappa free light chains (Ig) free; P - newest value first
15 August: 19.9
6 August: 90.1
10 July: 129
11 June: 192
Lambda free light chains (Ig) free - newest value first
15 August: 32.8
6 August: 51
10 July: 43
11 June: 47.3
Next week they will take tests to see what happened to M-component, Kappa/lambda chains and all other figures after the second series of CyBorD.
After 2 x 3 weeks of CyBorD
I am working full time and feeling well and OK. Only a little difficult sleeping at night (dex) and just a bit of Velcade feeling of having silicone pads under the front of my feet. Absolutely acceptable so far.
The hospital are giving me times for treatment that make sure that I do only have to take very few hours free from work.
The Official Danish Recommendation On The FISH Analysis
The official Danish Package plan for Myeloma states, and I am trying to translate as good as I can - sorry, English is not my native language.
Prognosis
"Multiple myeloma is prognostically a heterogeneous disease, and the reason lies in the underlying chromosomal aberrations. In order to obtain sufficient information, it is necessary to implement both a chromosome study and interphase FISH (iFISH), since the two studies complement each other.
In addition to those found in cytogenetics and prognosis iFISH described best with it include the International Staging System (ISS)."
From now on the I am lucky. Every 2-3 weeks I have a consultation with a physician. It will from now on be the Chief Physician who is a multiple myeloma specialist. I met him once and he seems to be the right person for me. I will have to ask him about the FISH analysis, and whether I need a new biopsy to make the FISH analysis from.
Therefore this very long message if you can answer me regarding the importance of the FISH analysis it will be of great help to me.
Forums
10 posts
• Page 1 of 1
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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: How important is FISH analysis?
Lev,
Cytogenetics do play an important role in selecting the correct drugs for treating multiple myeloma and determining one's prognosis. Some drugs simply do not work as effectively as others, depending on the mutation(s) you may have. I am surprised that your doctor was irritated by your question.
To give you an idea of how one institution changes their recommend drugs for a given set of mutations, please see the Mayo Msmart guidelines below:
(Look at the transplant-eligible recommendations section. Note that the Mayo has four different recommended drug combinations based on which mutations one may have).
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
Every doctor can have a different set of drugs they like to use in different circumstances. But to make a decision on a multiple myeloma drug treatment plan without first knowing one's cytogenetics seems a bit strange to me.
I don't know what your options are in the Danish medical system, but I might suggest finding a second doctor and requesting a new biopsy.
Cytogenetics do play an important role in selecting the correct drugs for treating multiple myeloma and determining one's prognosis. Some drugs simply do not work as effectively as others, depending on the mutation(s) you may have. I am surprised that your doctor was irritated by your question.
To give you an idea of how one institution changes their recommend drugs for a given set of mutations, please see the Mayo Msmart guidelines below:
(Look at the transplant-eligible recommendations section. Note that the Mayo has four different recommended drug combinations based on which mutations one may have).
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
Every doctor can have a different set of drugs they like to use in different circumstances. But to make a decision on a multiple myeloma drug treatment plan without first knowing one's cytogenetics seems a bit strange to me.
I don't know what your options are in the Danish medical system, but I might suggest finding a second doctor and requesting a new biopsy.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How important is FISH analysis?
Hi Lev,
It may be that your physician is not particularly interested in your cytogenetics because she doesn't really intend to change the treatment you're given based on the results of the test results. The Danish myeloma treatment guidelines may recommend CyBorD as upfront treatment for all newly diagnosed, transplant-eligible myeloma patients, without any reference to the the results of cytogenetic testing.
That's not necessarily a bad approach. The regimen contains Velcade, and there's research that Velcade improves treatment outcomes in patients with higher-risk cytogenetics.
However, the regimen may be less intensive than might be desirable if you have some of the higher-risk chromosomal abnormalities. Here in the States, many such patients would be given Revlimid, Velcade, and dex in combination, rather than CyBorD.
In any case, it would be worth seeing if you can get the results of your FISH testing, and have them explained to you so that you understand what chromosomal abnormalities were found, if any. This might lead to a useful discussion about your treatment plan.
Just as importantly, it could give you some insight into how difficult to treat your disease is likely to be. The FISH results are far from a perfect predictor of how aggressive a patient's disease will be, but they do provide some directional guidance.
For the International Myeloma Working Groups risk classification system for newly diagnosed patients, which uses cytogenetics as a key input, see this article:
"Experts Publish Consensus Risk Classification For Multiple Myeloma," Myeloma Beacon, September 13, 2013
I hope you continue to respond well to the CyBorD treatment. Let us know if you have any additional questions, and keep us updated on how you're doing.
It may be that your physician is not particularly interested in your cytogenetics because she doesn't really intend to change the treatment you're given based on the results of the test results. The Danish myeloma treatment guidelines may recommend CyBorD as upfront treatment for all newly diagnosed, transplant-eligible myeloma patients, without any reference to the the results of cytogenetic testing.
That's not necessarily a bad approach. The regimen contains Velcade, and there's research that Velcade improves treatment outcomes in patients with higher-risk cytogenetics.
However, the regimen may be less intensive than might be desirable if you have some of the higher-risk chromosomal abnormalities. Here in the States, many such patients would be given Revlimid, Velcade, and dex in combination, rather than CyBorD.
In any case, it would be worth seeing if you can get the results of your FISH testing, and have them explained to you so that you understand what chromosomal abnormalities were found, if any. This might lead to a useful discussion about your treatment plan.
Just as importantly, it could give you some insight into how difficult to treat your disease is likely to be. The FISH results are far from a perfect predictor of how aggressive a patient's disease will be, but they do provide some directional guidance.
For the International Myeloma Working Groups risk classification system for newly diagnosed patients, which uses cytogenetics as a key input, see this article:
"Experts Publish Consensus Risk Classification For Multiple Myeloma," Myeloma Beacon, September 13, 2013
I hope you continue to respond well to the CyBorD treatment. Let us know if you have any additional questions, and keep us updated on how you're doing.
Re: How important is FISH analysis?
Cheryl does bring up an excellent point that CyBorD may be the standard treatment for all transplant eligible patients in Denmark, regardless of risk stratification. I had not considered that possibility in my reply. Thanks Cheryl.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How important is FISH analysis?
Both Cheryl and MultiBilly have given you good responses.
What concerns me in some of your post is the mention that you have some sensory changes in the bottoms of your feet that don't concern you. Velcade can cause peripheral neuropathy (PN). It can become worse over time with continued use of Velcade.
Are you receiving the Velcade through infusion (higher incidence of PN) or with subcutaneous (sub-q) injections (lower incidence of PN)? In either case you should let your doctor know about the sensory changes in your feet.
In the US, doctors will either lower the dose of the Velcade or change to another drug that doesn't usually have the problem of PN developing. That may not be possible with the Danish system, but your doctor should still know about the changes.
Even if the results of the FISH testing wouldn't change your treatment regimen that is approved in Denmark, it may make a difference in what clinical trials you would be eligible for in the future. So, definitely ask your new oncologist about the test.
Good luck with you treatment,
Nancy in Phila
What concerns me in some of your post is the mention that you have some sensory changes in the bottoms of your feet that don't concern you. Velcade can cause peripheral neuropathy (PN). It can become worse over time with continued use of Velcade.
Are you receiving the Velcade through infusion (higher incidence of PN) or with subcutaneous (sub-q) injections (lower incidence of PN)? In either case you should let your doctor know about the sensory changes in your feet.
In the US, doctors will either lower the dose of the Velcade or change to another drug that doesn't usually have the problem of PN developing. That may not be possible with the Danish system, but your doctor should still know about the changes.
Even if the results of the FISH testing wouldn't change your treatment regimen that is approved in Denmark, it may make a difference in what clinical trials you would be eligible for in the future. So, definitely ask your new oncologist about the test.
Good luck with you treatment,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: How important is FISH analysis?
First: I am very grateful for the thoughtful answers from you here. They are actually consistent with the official guidelines from the Danish Health Authorities. The FISH analysis is a mandatory part of the diagnosis-process and must be used when planning treatment.
This is why I got so confused when the physician reacted as she did to my question.
In my daily work I have to read scientific articles on other topics than medicine, and my first approach to the authorities when needing them was to lay my life trustfully in their hands. Why read articles within fields where you don't have the qualifications to understand everything?
This is probably a misconception. Being with myeloma will, I am afraid, force me to keep reading many strange articles.
After my consultation with this doctor I read a lot, and then I got precise and useful confirmation and clarifications here.
Wednesday next week i have a long consultation with the chief physician who is a myeloma specialist. He will be my primary contact from now, but was on vacation during my initial induction treatment. I just have to hope that they did not for some reason forget to do the test, and that this was why the first physician reacted as she did. Maybe she just was not very competent?
Just some notes, from my one consultation with a myeloma specialist, very early in the process, I got the impression that the treatment and options are very open to the patients. Trials etc. etc.
The Danish Myeloma Organisation and health authorities are inviting patients to seminars / conferences. On 3 different days in September they are arranging a full day of seminars at conference centers in different places in Denmark. First a half day with specialists speaking on myeloma, and then more individual sessions. The theme for the morning session is the categorization of your myeloma and the importance of this for your treatment ... Maybe I should invite the physician who is causing this dialog:-)
And on November 7th they are inviting the patients to one seminar in the middle of our tiny country. This one with attendance of another panel including Angela Dispenzieri, MD, Mayo Clinic, Rochester, USA, who will explain about new treatments.
I will post an update when I have had my consultation. I only hope that the vacation period and hospital stress has not made the system drop the test by accident - this would make me pretty angry.
Once again, I am extremely grateful for the response from you here. What an enthusiasm!
And I am impressed that someone edited my first post and entered alternative values to my figures. It seems that we are using slightly different ways of representing them in Europe and in the US. Thanks!
I am not used to English as my personal way of expression, so sorry if not everything I write is strictly according to the Oxford Dictionary:-)
This is why I got so confused when the physician reacted as she did to my question.
In my daily work I have to read scientific articles on other topics than medicine, and my first approach to the authorities when needing them was to lay my life trustfully in their hands. Why read articles within fields where you don't have the qualifications to understand everything?
This is probably a misconception. Being with myeloma will, I am afraid, force me to keep reading many strange articles.
After my consultation with this doctor I read a lot, and then I got precise and useful confirmation and clarifications here.
Wednesday next week i have a long consultation with the chief physician who is a myeloma specialist. He will be my primary contact from now, but was on vacation during my initial induction treatment. I just have to hope that they did not for some reason forget to do the test, and that this was why the first physician reacted as she did. Maybe she just was not very competent?
Just some notes, from my one consultation with a myeloma specialist, very early in the process, I got the impression that the treatment and options are very open to the patients. Trials etc. etc.
The Danish Myeloma Organisation and health authorities are inviting patients to seminars / conferences. On 3 different days in September they are arranging a full day of seminars at conference centers in different places in Denmark. First a half day with specialists speaking on myeloma, and then more individual sessions. The theme for the morning session is the categorization of your myeloma and the importance of this for your treatment ... Maybe I should invite the physician who is causing this dialog:-)
And on November 7th they are inviting the patients to one seminar in the middle of our tiny country. This one with attendance of another panel including Angela Dispenzieri, MD, Mayo Clinic, Rochester, USA, who will explain about new treatments.
I will post an update when I have had my consultation. I only hope that the vacation period and hospital stress has not made the system drop the test by accident - this would make me pretty angry.
Once again, I am extremely grateful for the response from you here. What an enthusiasm!
And I am impressed that someone edited my first post and entered alternative values to my figures. It seems that we are using slightly different ways of representing them in Europe and in the US. Thanks!
I am not used to English as my personal way of expression, so sorry if not everything I write is strictly according to the Oxford Dictionary:-)
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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: How important is FISH analysis?
And then just about the Velcade/feeling in my feet ... It is on a long list of symptoms I got from the hospital where I have to call if it occurs. They give you a direct 24 hour number and tell you that while you are under treatment you must use the doctor on duty at the department as your access to the health system if something should turn up.
I did of course call in, and the physician on duty was very focused on the severity of the symptoms and that it was only in my feet and not hands / fingers. I have to keep them updated, but as long as it is only a slight feeling of having silicone cushions around the toes, we are going to wait and see.
Also thanks to Nancy for her reaction to this!
I hope that this, so far, small problem is reversible, and initially I do not really like the idea of reducing the dose, although the physician at once mentioned this option.
I did of course call in, and the physician on duty was very focused on the severity of the symptoms and that it was only in my feet and not hands / fingers. I have to keep them updated, but as long as it is only a slight feeling of having silicone cushions around the toes, we are going to wait and see.
Also thanks to Nancy for her reaction to this!
I hope that this, so far, small problem is reversible, and initially I do not really like the idea of reducing the dose, although the physician at once mentioned this option.
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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: How important is FISH analysis?
Today I met with my myeloma physician.
Fine, got the information I needed and a temporary plan for everything from now until after the transplant.
When I asked the previous physician about the result of the FISH test / analysis 3 weeks ago, she got pretty upset and told me that it was absolutely irrelevant. I got the impression that she either did not know what the FISH test was, or that something went wrong, and that she was not ready to cope with this.
The chief physician had a completely different approach. He told me that the FISH sample from the bone marrow biopsy wasn't good enough. He wanted permission to perform another bone marrow biopsy. No problem.
We all make mistakes, but what a difference between the physician today, who had no problems and informed me about it, and the previous one, who acted like some of the doctors from a TV show.
Not looking forward to the biopsy, but to the result (I hope).
It is my impression that altogether I am in the hands of competent people.
I should probably try to help the lady I met with last time to perform better in the future. But I do not have the time for conflicts and I do not want to generate ill will.
Best regards
Lev
Fine, got the information I needed and a temporary plan for everything from now until after the transplant.
When I asked the previous physician about the result of the FISH test / analysis 3 weeks ago, she got pretty upset and told me that it was absolutely irrelevant. I got the impression that she either did not know what the FISH test was, or that something went wrong, and that she was not ready to cope with this.
The chief physician had a completely different approach. He told me that the FISH sample from the bone marrow biopsy wasn't good enough. He wanted permission to perform another bone marrow biopsy. No problem.
We all make mistakes, but what a difference between the physician today, who had no problems and informed me about it, and the previous one, who acted like some of the doctors from a TV show.
Not looking forward to the biopsy, but to the result (I hope).
It is my impression that altogether I am in the hands of competent people.
I should probably try to help the lady I met with last time to perform better in the future. But I do not have the time for conflicts and I do not want to generate ill will.
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: How important is FISH analysis?
Lev,
What a relief to be informed of the actual problem rather than feel like you are silly for asking a question about your tests. You were certainly right to ask, and even if she didn't feel like being fully forthcoming about the problem with the bone marrow biopsy and that you'd have to have another one, she certainly could have handled it differently.
I understand not wanting to pursue her to help her improve her performance. You are dealing with a lot of health issues and you need to use your energy to become informed and to heal in the best way possible. Less stress in your life allows your body a better chance to recover.
Please let us know when your next BMB is to happen and anything else new.
All the best,
Toni
What a relief to be informed of the actual problem rather than feel like you are silly for asking a question about your tests. You were certainly right to ask, and even if she didn't feel like being fully forthcoming about the problem with the bone marrow biopsy and that you'd have to have another one, she certainly could have handled it differently.
I understand not wanting to pursue her to help her improve her performance. You are dealing with a lot of health issues and you need to use your energy to become informed and to heal in the best way possible. Less stress in your life allows your body a better chance to recover.
Please let us know when your next BMB is to happen and anything else new.
All the best,
Toni
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: How important is FISH analysis?
Hi Toni,
Yes, absolutely not in the mood for conflicts.
And the bone marrow biopsy will be done on Monday with my Velcade injection. Velcade-Cytoxan-dex Friday, dex Saturday, Velcade-dex Monday, dex Tuesday.
They are doing a great job planning to arrange everything very efficiently so that I do not have to be away from work too often. So they arranged the BMB 1/2 hour before my Velcade on Monday.
It will probably be some time before I get the result.
Best regards,
Lev
Yes, absolutely not in the mood for conflicts.
And the bone marrow biopsy will be done on Monday with my Velcade injection. Velcade-Cytoxan-dex Friday, dex Saturday, Velcade-dex Monday, dex Tuesday.
They are doing a great job planning to arrange everything very efficiently so that I do not have to be away from work too often. So they arranged the BMB 1/2 hour before my Velcade on Monday.
It will probably be some time before I get the result.
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
10 posts
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