Hi,
My name is Linda, but I go by Sister In Law because I was a support system for my sister in law about four years ago (this time of the year, too) when she was diagnosed with lambda light chain myeloma and amyloidosis. She found out she was ill because she was increasingly breathless, had some horrible bouts of coughing, and got pneumonia a few times. She also had several bouts of "intestinal flu or food poisoning," she said.
Eventually, her ankles swelled like balloons and she got very sick to her stomach. A doctor had pushed some Naprosyn on her for her migraines. I think the Naprosyn revealed and pushed her into kidney failure. From there, the doctors began hunting for a cause and found amyloidosis. It is so rare that the surgeon who did the fat pad biopsy scoffed and said he had never had one be positive. But hers was.
It took four months to get anyone to move on her disease and finally she began Revlimid. Anyway, by the time they began treating her, she was at stage 2 and her organs were impaired. She did a stem cell transplant quite late in her disease and her kidneys failed completely. She could not recover and passed away last December 3 years after her diagnosis. She was in total remission! That's the sad part.
So I walked the road alongside of her all that time. I never dreamed I would be on the Myeloma Beacon again asking questions. My husband (her brother) has now been diagnosed with lambda light chain disease (of some sort). We have to have a lot of testing yet and have an appointment with the oncologist on October 2nd.
I have had a very hard time to deal with this news. I know that every case is different. What I do not know is if lambda light chains always cause amyloidosis? I cannot find that answer.
I know that some day I will know what he has, but for now, I have a very fresh story I remember very clearly and hope that his case will be much better than hers. He does not have elevated calcium, creatinine, or BUN. He's a tiny bit low on albumin and total protein. All the rest of his blood work is fine.
In early June, he all of a sudden got SICK. He was exhausted, constipated terribly, got neuropathy, and nauseated. Gradually, he has recovered somewhat. Only a little nausea, fatigue, and neuropathy, which is the worst part. His sister did not get the neuropathy until she did Velcade via the port, which I don't think they do anymore.
So here I am. I cannot believe it. Their dad had kappa myeloma of some sort 20 years ago and lives on at 86 in total remission. What a family I married into!
Are there any other people out there who have lambda light chain myeloma or MGUS without amyloidosis? I am so hoping for him to not have amyloidosis. Such a long time of having everyone sick! So tired of illness.
Forums
7 posts
• Page 1 of 1
Re: Sister in law wondering about lambda light chain myeloma
Dear Sister in Law
First, I am so sorry that your sister-in-law was diagnosed so late in her disease and that she succumbed to it. It was a blessing that she had you by her side.
Second, it is so surprising to hear that her brother, your husband, might also have multiple myeloma. I read the Beacon religiously and this is the first time I have heard of siblings and a parent all having multiple myeloma.
My husband has IgA lambda multiple myeloma. I believe that might be what you are referring to in your question. If it is, I can say that he does not also have amyloidosis.
I pray that whatever diagnosis your husband receives that he gets the care and treatment that he needs sooner rather than later.
First, I am so sorry that your sister-in-law was diagnosed so late in her disease and that she succumbed to it. It was a blessing that she had you by her side.
Second, it is so surprising to hear that her brother, your husband, might also have multiple myeloma. I read the Beacon religiously and this is the first time I have heard of siblings and a parent all having multiple myeloma.
My husband has IgA lambda multiple myeloma. I believe that might be what you are referring to in your question. If it is, I can say that he does not also have amyloidosis.
I pray that whatever diagnosis your husband receives that he gets the care and treatment that he needs sooner rather than later.
-
PattyB - Name: PattyB
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 64
Re: Sister in law wondering about lambda light chain myeloma
We got the basic results today of my husband's bone marrow biopsy. I'll eventually be able to post all of it on here, but for now, it is on his phone and he cannot seem to send it to me. But this is what I got from the report:
2.7% of the marrow is lambda light chain
I know ratio matters. Lambda was 1.9 to 1.
Not sure if this matters or if more information is needed.
Hoping it is MGUS, although he feels really bad with neuropathy and fatigue. Terrible. I hope they will treat him with something for this ailment. It's hard for him to work.
Hoping they did the Congo red stain to check for amyloidosis (what his sister had, plus myeloma). Hoping that is negative. Hoping they remembered to do that test..
2.7% of the marrow is lambda light chain
I know ratio matters. Lambda was 1.9 to 1.
Not sure if this matters or if more information is needed.
Hoping it is MGUS, although he feels really bad with neuropathy and fatigue. Terrible. I hope they will treat him with something for this ailment. It's hard for him to work.
Hoping they did the Congo red stain to check for amyloidosis (what his sister had, plus myeloma). Hoping that is negative. Hoping they remembered to do that test..
-
Sister In Law - Name: Linda
- Who do you know with myeloma?: Husband, sister, father-in-law
Re: Sister in law wondering about lambda light chain myeloma
Hi Everyone,
I have been randomly posting because I knew that my husband had many symptoms of myeloma and it seems to be the family curse (his father and sister). Tonight, we looked at his online chart and saw the bone marrow biopsy report. One report said 2.7% lambda, but a later report said 30% myeloma. I think it is probably the last percentage, unfortunately.
My husband has felt bad for months and has been to every doctor in the country to finally get to this point. He's white, pasty, weak, sick. Losing muscle mass and exhausted. He keeps breaking blood vessels in his eyes. His blood pressure plummeted when he first got sick and he got bad neuropathy. The poor man is really miserable.
We have an appointment with the oncologist on Tuesday. The man was a jerk. I hope he is nicer this next appointment or we will be moving to another partner in the clinic.
Anyway, I hope he can continue working for awhile since our insurance is through his work. I hope the dexamethasone gives him a boost once they start treatment. We just finished 3 years of misery with his sister, and now we start again. What a crazy life.
I have been randomly posting because I knew that my husband had many symptoms of myeloma and it seems to be the family curse (his father and sister). Tonight, we looked at his online chart and saw the bone marrow biopsy report. One report said 2.7% lambda, but a later report said 30% myeloma. I think it is probably the last percentage, unfortunately.
My husband has felt bad for months and has been to every doctor in the country to finally get to this point. He's white, pasty, weak, sick. Losing muscle mass and exhausted. He keeps breaking blood vessels in his eyes. His blood pressure plummeted when he first got sick and he got bad neuropathy. The poor man is really miserable.
We have an appointment with the oncologist on Tuesday. The man was a jerk. I hope he is nicer this next appointment or we will be moving to another partner in the clinic.
Anyway, I hope he can continue working for awhile since our insurance is through his work. I hope the dexamethasone gives him a boost once they start treatment. We just finished 3 years of misery with his sister, and now we start again. What a crazy life.
-
Sister In Law - Name: Linda
- Who do you know with myeloma?: Husband, sister, father-in-law
Re: Sister in law wondering about lambda light chain myeloma
Husband had bone marrow biopsy on Monday. Flow cytometry said he had 2.7% multiple myeloma in bone marrow, but the later report (which I think may be hand counted?) said he had 30% myeloma in his bone marrow. So we have no clue what is going on. We see the doctor on Wednesday.
In the mean time, our friend, a PA, said that the truth is probably in the middle somewhere – maybe even MGUS or smoldering. He said sometimes the numbers are inflated due to clots, etc.
Has anyone else ever experienced this and what was the outcome?
In the mean time, our friend, a PA, said that the truth is probably in the middle somewhere – maybe even MGUS or smoldering. He said sometimes the numbers are inflated due to clots, etc.
Has anyone else ever experienced this and what was the outcome?
-
Sister In Law - Name: Linda
- Who do you know with myeloma?: Husband, sister, father-in-law
Re: Sister in law wondering about lambda light chain myeloma
Hi Sister in Law,
There's a big difference between 2.7% and 30%. Are you sure that both numbers refer to the percentage of cells in your husband's marrow that are plasma cells?
A total bone marrow plasma cell percentage of 2.7% would be about what a normal, healthy person would have. If, on the other hand, the 2.7% is the percent of marrow cells that are MONOCLONAL plasma cells, then that would indicate your husband has a plasma cell disorder. But that would still be a low monoclonal plasma cell percentage.
I would double check with someone that the 30% number is really referring to a bone marrow plasma cell percentage.
There's a big difference between 2.7% and 30%. Are you sure that both numbers refer to the percentage of cells in your husband's marrow that are plasma cells?
A total bone marrow plasma cell percentage of 2.7% would be about what a normal, healthy person would have. If, on the other hand, the 2.7% is the percent of marrow cells that are MONOCLONAL plasma cells, then that would indicate your husband has a plasma cell disorder. But that would still be a low monoclonal plasma cell percentage.
I would double check with someone that the 30% number is really referring to a bone marrow plasma cell percentage.
-
Jonah
Re: Sister in law wondering about lambda light chain myeloma
Hi Linda
welcome to this community. Very sorry to hear your husband and his sister were dealt these difficult diseases. I'm not a medical professional by any stretch. I have researched the disease to the best of my ability and offer what I can to be helpful.
This site has a multitude of helpful people and articles. This article from 2010 is specifically about multiple myeloma associated amyloidosis. Note that hereditary amyloidosis is the rarest of the three types. https://myelomabeacon.org/news/2010/09/15/multiple-myeloma-associated-amyloidosis-what-every-patient-should-know/
Is your oncologist a myeloma and/or part of a specialist group for myeloma and amyloidosis? If not, please seek out a referral (if you need one) or find a specialist at your earliest opportunity. put 'myeloma specialist' in the search box near the top of this site. The list is good and hopefully you can find one near your home. They are often involved in the latest research and have a wider range of experience with all the different ways multiple myeloma expresses itself. Insurance should cover a second opinion. If travel is difficult, improvements in communication technology allow for electronic consults. They play a vital role in diagnosis, interpretation and therapy recommendations.
In any event, if the relationship with the oncologist is not working, change doctors. multiple myeloma has been medically intense for us; it's a huge plus we've found a talented and approachable hemotologist/oncologist who guides our journey.
My husband has lambda light chain myeloma, diagnosed in august of 2013. He had renal involvement at time of diagnosis. Amyloidosis was ruled out twice: first with a negative Congo red stain test and secondly with no findings in the kidney biopsy.
multiple myeloma is a highly individualized disease, making it difficult to compare notes with other patients as to what is working and what is not. For example, my husband's first plasma cell load in his bone marrow biopsy from his hip was between 3 and 5 percent. The docs had to take a second bone marrow sample from an active bone lesion to definitively diagnose the disease. We met another newly diagnosed lambda light chain only patient at a support group. That patient's first bone marrow biopsy plasma cell load was over 80 percent. Go figure.
There appears to be a predisposition to multiple myeloma if a first line blood relative has the disease. As you note the father had differential expression of the disease vis a vis the diagnoses for his children. multiple myeloma remains an uncommon cancer. Amyloidosis is even rarer than multiple myeloma. Here's a link to a research report from 2013 on the topic. Check out the section titled "myeloma in families" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3734900/
As for your questions about the blood and other test results and their interpretation, find out and get copies of each set of lab results. Understanding which lab results are important to track and what they mean facilitates a collaboration between the patient and doctor as far as treatment and monitoring are concerned. There are helpful booklets on these topics from the cancer, blood cancer and multiple myeloma foundations. This is (hopefully) a long haul with periods of respite for you and your husband ahead.
The pace of research and pipeline of newer therapies is amazing. I take great comfort from all those folks who are dedicating their lives to improving outcomes and searching for the elusive 'cure'. In the meantime, patients must stay in the game to garner what may well be better therapies and quality of life.
welcome to this community. Very sorry to hear your husband and his sister were dealt these difficult diseases. I'm not a medical professional by any stretch. I have researched the disease to the best of my ability and offer what I can to be helpful.
This site has a multitude of helpful people and articles. This article from 2010 is specifically about multiple myeloma associated amyloidosis. Note that hereditary amyloidosis is the rarest of the three types. https://myelomabeacon.org/news/2010/09/15/multiple-myeloma-associated-amyloidosis-what-every-patient-should-know/
Is your oncologist a myeloma and/or part of a specialist group for myeloma and amyloidosis? If not, please seek out a referral (if you need one) or find a specialist at your earliest opportunity. put 'myeloma specialist' in the search box near the top of this site. The list is good and hopefully you can find one near your home. They are often involved in the latest research and have a wider range of experience with all the different ways multiple myeloma expresses itself. Insurance should cover a second opinion. If travel is difficult, improvements in communication technology allow for electronic consults. They play a vital role in diagnosis, interpretation and therapy recommendations.
In any event, if the relationship with the oncologist is not working, change doctors. multiple myeloma has been medically intense for us; it's a huge plus we've found a talented and approachable hemotologist/oncologist who guides our journey.
My husband has lambda light chain myeloma, diagnosed in august of 2013. He had renal involvement at time of diagnosis. Amyloidosis was ruled out twice: first with a negative Congo red stain test and secondly with no findings in the kidney biopsy.
multiple myeloma is a highly individualized disease, making it difficult to compare notes with other patients as to what is working and what is not. For example, my husband's first plasma cell load in his bone marrow biopsy from his hip was between 3 and 5 percent. The docs had to take a second bone marrow sample from an active bone lesion to definitively diagnose the disease. We met another newly diagnosed lambda light chain only patient at a support group. That patient's first bone marrow biopsy plasma cell load was over 80 percent. Go figure.
There appears to be a predisposition to multiple myeloma if a first line blood relative has the disease. As you note the father had differential expression of the disease vis a vis the diagnoses for his children. multiple myeloma remains an uncommon cancer. Amyloidosis is even rarer than multiple myeloma. Here's a link to a research report from 2013 on the topic. Check out the section titled "myeloma in families" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3734900/
As for your questions about the blood and other test results and their interpretation, find out and get copies of each set of lab results. Understanding which lab results are important to track and what they mean facilitates a collaboration between the patient and doctor as far as treatment and monitoring are concerned. There are helpful booklets on these topics from the cancer, blood cancer and multiple myeloma foundations. This is (hopefully) a long haul with periods of respite for you and your husband ahead.
The pace of research and pipeline of newer therapies is amazing. I take great comfort from all those folks who are dedicating their lives to improving outcomes and searching for the elusive 'cure'. In the meantime, patients must stay in the game to garner what may well be better therapies and quality of life.
-
philatour - Who do you know with myeloma?: spouse
7 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories