My 72-year-old, very fit and active mother has been just diagnosed with smoldering multiple myeloma after 4 years of frequent illnesses. She was in hospital for a month with an unknown persistent febrile illness, possibly Ross River fever. Six months later she had severe opthalmic shingles. She was then hospitalised with pneumonia and most recently has been diagnosed with organising pneumonia and on prednisone 25 mg daily, being gradually reduced. She has had her calcium level noted to be high a few times over the years, but it is currently normal.
My question is: Are the frequent infections part of the smoldering multiple myeloma? Is it likely to persist? Should she have fluvac and pneumovax (she is antivacc)? Any other thoughts?
Thanks
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Adeldave - Name: Adele
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 72
Re: Frequent infections & smoldering myeloma
Hi Adeldave,
There are certainly folks on this forum that do experience repeated infections that are smoldering.
Do you know what her M-spike, immunglobulin levels (IgG, IgA, etc), plasma cell percentage from her bone marrow biopsy and her serum free-light chain values are? This might give folks on the forum an idea of the degree of her smoldeirng multiple myeloma.
Now having asked the above questions, there is a set of criteria for symptomatic multiple myeloma that some multiple myeloma specialists use that is known as "CRABI", which basically adds the condition of repeated infections (the "I" in CRABI stands for infections) to the standard CRAB criteria (C=hypercalcemia, R= renal issues/failure, A=anemia and B=bone lesions). CRABI is used to classify a person as symptomatic instead of smoldering. The infections (I) would need to be attributed to a weakened immune system due to the SMM.
Regarding your question about pneumococcal and flu vaccines, this is generally considered a good practice for smoldering patients. But, I won't go as far as recommending them for your mom given I'm not a doc and I don't know if her age and current conditions might contraindicate getting those vaccines.
Are you working with a multiple myeloma specialist or just an oncologist that has some familiarity with multiple myeloma? There is quite a difference between these two types of docs and it might be good to seek out a multiple myeloma specialist if you can to discuss the CRABI criteria and her specific situation. If you let us know which city your mom lives, folks on this forum can give some recommendations.
There are certainly folks on this forum that do experience repeated infections that are smoldering.
Do you know what her M-spike, immunglobulin levels (IgG, IgA, etc), plasma cell percentage from her bone marrow biopsy and her serum free-light chain values are? This might give folks on the forum an idea of the degree of her smoldeirng multiple myeloma.
Now having asked the above questions, there is a set of criteria for symptomatic multiple myeloma that some multiple myeloma specialists use that is known as "CRABI", which basically adds the condition of repeated infections (the "I" in CRABI stands for infections) to the standard CRAB criteria (C=hypercalcemia, R= renal issues/failure, A=anemia and B=bone lesions). CRABI is used to classify a person as symptomatic instead of smoldering. The infections (I) would need to be attributed to a weakened immune system due to the SMM.
Regarding your question about pneumococcal and flu vaccines, this is generally considered a good practice for smoldering patients. But, I won't go as far as recommending them for your mom given I'm not a doc and I don't know if her age and current conditions might contraindicate getting those vaccines.
Are you working with a multiple myeloma specialist or just an oncologist that has some familiarity with multiple myeloma? There is quite a difference between these two types of docs and it might be good to seek out a multiple myeloma specialist if you can to discuss the CRABI criteria and her specific situation. If you let us know which city your mom lives, folks on this forum can give some recommendations.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Frequent infections & smoldering myeloma
Hi Adledave,
Allow me to update my earlier remarks a bit. It seems that "infections" aren't currently considered part of the official criteria for symptomatic multiple myeloma. Dr. Shain was one of the docs that used to refer to the "CRABI" criteria (I believe I first picked up the "CRABI" term from one of his earlier posts). But but note that he recently commented as follows:
Also note that Dr. Shain makes a good comment about "immunoparesis" (suppression of one or more of the normal levels of an immunoglobulin, which can result in weakened immunity). This is one of the reasons I asked about your mom's various immunoglobulin levels and M-spike level.
Allow me to update my earlier remarks a bit. It seems that "infections" aren't currently considered part of the official criteria for symptomatic multiple myeloma. Dr. Shain was one of the docs that used to refer to the "CRABI" criteria (I believe I first picked up the "CRABI" term from one of his earlier posts). But but note that he recently commented as follows:
By definition MGUS has no bearing on your organ dysfunction (CRAB*). In the past, increased rate of serious infections was an additional criteria for active multiple myeloma. This has been omitted from the most recent IMWG update for active disease".
Also note that Dr. Shain makes a good comment about "immunoparesis" (suppression of one or more of the normal levels of an immunoglobulin, which can result in weakened immunity). This is one of the reasons I asked about your mom's various immunoglobulin levels and M-spike level.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Frequent infections & smoldering myeloma
Thanks a lot. Mum is having a bone marrow biopsy on Wednesday. So when we have those results, I'll put her other results up as well. Is under a general haematologist, not oncologist.
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Adeldave - Name: Adele
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 72
Re: Frequent infections & smoldering myeloma
I am sorry to hear about your mother's recent diagnosis.
I am assuming that your statement regarding your mother’s diagnosis of 'smoldering' multiple myeloma (SMM) stems from the finding of a high M spike (> 3g/dL or 30 g/L), since the bone marrow results are still pending. Myeloma or SMM can weaken the immune system due to suppressed production of immunoglobulins other than the involved immunoglobulin.
Also, the word “smoldering” suggests that that your mom’s initial work-up did not suggest that she met any criteria for commencing therapy. If the bone marrow does indeed establish SMM – i.e., clonal plasma cells (>= 10% but <60%) – our approach is to enroll high-risk SMM patients in a national trial for SMM, such as ECOG E3A06. This randomized phase III trial studies how well Revlimid works and compares it to observation in treating patients with asymptomatic (smoldering) multiple myeloma. However, the patients should not be on doses of prednisone that are greater than 10 mg per day, and as such your mother may not qualify based on the current eligibility criteria.
In the absence of contraindications, patients with SMM above 65 years of age can get high dose-inactivated trivalent flu vaccine that is approved (not the nasal or live attenuated vaccine) for this age-group, and pneumococcal vaccine, although there is evidence of suboptimal protective effect of these vaccines on myeloma patients. A recent European study (see reference below) involving smoldering and stage 1 myeloma patients showed that the protective effect of influenza vaccine more than doubled (31.3%) after a second trivalent vaccine dose, and this booster approach can be used in patients who are unable to mount good responses to the first dose as a result of their heavily immunocompromised state.
Reference:
M Hahn et al, "Efficacy of single versus boost vaccination against influenza virus in patients with multiple myeloma", Haematologica, Mar 2015 (link to full text PDF of article).
I am assuming that your statement regarding your mother’s diagnosis of 'smoldering' multiple myeloma (SMM) stems from the finding of a high M spike (> 3g/dL or 30 g/L), since the bone marrow results are still pending. Myeloma or SMM can weaken the immune system due to suppressed production of immunoglobulins other than the involved immunoglobulin.
Also, the word “smoldering” suggests that that your mom’s initial work-up did not suggest that she met any criteria for commencing therapy. If the bone marrow does indeed establish SMM – i.e., clonal plasma cells (>= 10% but <60%) – our approach is to enroll high-risk SMM patients in a national trial for SMM, such as ECOG E3A06. This randomized phase III trial studies how well Revlimid works and compares it to observation in treating patients with asymptomatic (smoldering) multiple myeloma. However, the patients should not be on doses of prednisone that are greater than 10 mg per day, and as such your mother may not qualify based on the current eligibility criteria.
In the absence of contraindications, patients with SMM above 65 years of age can get high dose-inactivated trivalent flu vaccine that is approved (not the nasal or live attenuated vaccine) for this age-group, and pneumococcal vaccine, although there is evidence of suboptimal protective effect of these vaccines on myeloma patients. A recent European study (see reference below) involving smoldering and stage 1 myeloma patients showed that the protective effect of influenza vaccine more than doubled (31.3%) after a second trivalent vaccine dose, and this booster approach can be used in patients who are unable to mount good responses to the first dose as a result of their heavily immunocompromised state.
Reference:
M Hahn et al, "Efficacy of single versus boost vaccination against influenza virus in patients with multiple myeloma", Haematologica, Mar 2015 (link to full text PDF of article).
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Dr. Prashant Kapoor - Name: Prashant Kapoor, M.D.
Beacon Medical Advisor
Re: Frequent infections & smoldering myeloma
This sounds very familiar. I was diagnosed with "high risk" smoldering multiple myeloma about 10 years ago. The mutation of my cells has earned me the label of "high risk" IgG lambda. I have 20% plasma cells, an M-spike of 0.9 g/dL (9 g/L). My infections, I have been told, are caused by an un-measurable IgA – below 3. Each year, I succumb to pneumonia, bronchitis, and sinus infections in addition to norovirus and food poison. I usually have a good outlook and am able to look beyond my health issues, but as each infection prolongs over several weeks, I'm in need of an attitude adjustment.
I used to be very active with biking, swimming, and running. This was a big part of my social life. My infections are now controlling my activities. Besides changing my exercise plans, I stopped traveling to foreign countries after ending up in a hospital.
I'm currently having internal conflict since, against my better judgment, I signed up for a cruise and a train tour over 2 weeks this summer. For the first time, I purchased travel insurance. I have never encountered this much stress over an upcoming trip.
So, my question is, is there anything I can do to try to prevent getting sick? I plan to arm myself with antibiotics in case of an infection, even though I don't like to self medicate, but I find going to an unknown doctor has always been an issue. Any suggestions?
Also, is the premise of the ECOG E3A06 study that lenalidomide will help reduce infections? I would prefer to not take medications, but if this would reduce infections, I'm willing to sign up.
Mary
I used to be very active with biking, swimming, and running. This was a big part of my social life. My infections are now controlling my activities. Besides changing my exercise plans, I stopped traveling to foreign countries after ending up in a hospital.
I'm currently having internal conflict since, against my better judgment, I signed up for a cruise and a train tour over 2 weeks this summer. For the first time, I purchased travel insurance. I have never encountered this much stress over an upcoming trip.
So, my question is, is there anything I can do to try to prevent getting sick? I plan to arm myself with antibiotics in case of an infection, even though I don't like to self medicate, but I find going to an unknown doctor has always been an issue. Any suggestions?
Also, is the premise of the ECOG E3A06 study that lenalidomide will help reduce infections? I would prefer to not take medications, but if this would reduce infections, I'm willing to sign up.
Mary
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MnM - Name: Mary
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2003
- Age at diagnosis: 49
Re: Frequent infections & smoldering myeloma
Dear Mary
My husband was diagnosed SMM in 2011 and it was a run of infections that told us something was wrong. The blood test and biopsy confirmed it. Bi monthly check up has been uneventful so far.
We have been careful not expose ourselves to coughs and colds and have been able to go on holiday at least twice a year and twice been on a cruise but our luck ran out this year. We went on a cruise from Capetown to the UK and we started to get worried when the number of people with coughs seemed to be increasing each day. We arrived home congratulating ourselves on our hygiene strategies but spoke too soon, the virus took hold of both of us within 48hrs and eventually led to pneumonia and hospitalisation for IV antibiotics for my husband.
We are in week three since discharge and on the third lot of oral antibiotics, which at last appear to be working. We won't be cruising again, you are "trapped" with others that don't have the same hygiene standards and just basic medical care if anything goes wrong. My advice is move away from people who are coughing, wash hands frequently, don't touch bannisters, lift buttons etc. other than that I would say that insurance is the best way you can protect yoursel. Good luck.
My husband was diagnosed SMM in 2011 and it was a run of infections that told us something was wrong. The blood test and biopsy confirmed it. Bi monthly check up has been uneventful so far.
We have been careful not expose ourselves to coughs and colds and have been able to go on holiday at least twice a year and twice been on a cruise but our luck ran out this year. We went on a cruise from Capetown to the UK and we started to get worried when the number of people with coughs seemed to be increasing each day. We arrived home congratulating ourselves on our hygiene strategies but spoke too soon, the virus took hold of both of us within 48hrs and eventually led to pneumonia and hospitalisation for IV antibiotics for my husband.
We are in week three since discharge and on the third lot of oral antibiotics, which at last appear to be working. We won't be cruising again, you are "trapped" with others that don't have the same hygiene standards and just basic medical care if anything goes wrong. My advice is move away from people who are coughing, wash hands frequently, don't touch bannisters, lift buttons etc. other than that I would say that insurance is the best way you can protect yoursel. Good luck.
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Lynda - Name: Lynda
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: 2011
- Age at diagnosis: 70
Re: Frequent infections & smoldering myeloma
Hello,
I have immunoparesis of both uninvolved immunoglobulins and also low involved immunoglobin that is "normal" and this has qualified me for IVIG therapy and this treatment has made a significant difference in the quality of my life. I was on antibiotics every other month before starting IVIG and I have not been on antibiotics since and it has been almost one year!
I encourage those of you with chronic or repeat infections to investigate the possibility of this treatment to improve your quality of life while you watch and wait. I am looking forward to vacation out of the country this summer!
Treatment for SMM was never provided as an option.
Best
J
I have immunoparesis of both uninvolved immunoglobulins and also low involved immunoglobin that is "normal" and this has qualified me for IVIG therapy and this treatment has made a significant difference in the quality of my life. I was on antibiotics every other month before starting IVIG and I have not been on antibiotics since and it has been almost one year!
I encourage those of you with chronic or repeat infections to investigate the possibility of this treatment to improve your quality of life while you watch and wait. I am looking forward to vacation out of the country this summer!
Treatment for SMM was never provided as an option.
Best
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
8 posts
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