Hello Everyone!
I want to say THANK YOU to all the members, staff and advisors that provide so much information and insight. This forum has truly been a "Beacon"! This has been our "go-to" reference for about a year now and has provided immeasurable support and knowledge.
Hubby's journey started in May of 2014 with a rather unique presentation (so the doctors said).
Elevated heart rate, back pain, headaches, abdominal swelling, nausea, difficulty toileting, walking, eating and encephalopathy with slurry speech, sleepier, leading to hospitalization. The doctors were stumped, as each specialty came into the hospital room and tried to figure out what was going on.
CT, x-ray and MRI were done, numerous labs, a nerve biopsy in the head, lumbar puncture, EEG. All ok, except for elevated C-reactive protein (21.9) and sed rate (53). No monoclonal protein in urine.They decided to do an EGD / colonoscopy to see the source of abdominal swelling.
Because my husband lost his 43 year-old nephew 1 year prior to AL amyloidosis (sadly he was diagnosed just 2 weeks before he passed) and his sister has MGUS, I asked for them to biopsy and look for this. They at the time did not think this was possible. However, the stomach/colon biopsies came back positive for amyloidosis, AL kappa amyloid, and they were taken aback!
Then came the bone marrow biopsy, which revealed 10-15 % myeloma cells in marrow, no amyloid in marrow. All marrow plasma cells part of an abnormal monotypic populations showed loss of CD45 and CD19, aberrant expression of CD56, and cytoplasmic kappa light chain restriction, verified by Mayo Clinic. PET scan did not show any bone lesions.
IgE 49
IgG 618
IgM <20
IgA 45
Kappa free light chains (FLC) 94.20 (0.69 - 2.34 mg/dL)
Lambda free light chains (FLC) 0.92 (0.51 - 2.75 mg/dL
Kappa:lambda FLC ratio 103.00 (0.58 - 2.24)
Consultation with hematologist / bone marrow transplant unit where doctor ruled out bone marrow transplant (BMT) due to concentration of amyloid in gut and higher possible incidence of gastric bleed from BMT. He was started on CyborD (cyclophosphamide, Velcade, and dexamethasone). During his 3rd infusion, he developed dessert plate sized hives all over, which they deemed from the Velcade, so added Benadryl (diphenhydramine) to weekly infusions to stave off the reaction.
He made slow but steady progress as his light chains came down. He had to take a short break from chemo to manage pneumonia in Jan 2015. In Apr 2015, while we were at Mayo Clinic, he developed shaking chills, no cause found.
In May, since his light chains had plateaued, it was decided to change to Kyprolis, cyclophosphamide (Cytoxan), and dex. Immediately after starting the Kyprolis, his BNP started climbing, doubling or more each month. It was 12, then 27, then 99, then 183.
This correlated with the change in chemo and a heart biopsy was done last month. It showed amyloid in the heart, which the doctors assume has been there all along and that it was the new chemo that affected his heart. His doctor recently said he did not see the dramatic response with the other chemo that he hoped for, although progress was made and hubby was deemed to be 80-90% PR
As we enter this new Revlimid and dex regimen, this is our starting point:
Kappa free light chains (FLC) 29.50 (0.69 - 2.34 mg/dL)
Lambda free light chains (FLC) 0.90 (0.51 - 2.75 mg/dL
Kappa:lambda FLC ratio 32.78 (0.58 - 2.24)
First dose was last night. The new chemo potential side effects have me worried (blood clots, heart attack, etc). For those of you who have taken this combination, what have your experiences been with side effects and how long after starting the med did you experience them?
I'm wondering if hubby is at increased chance of complication from this combination in light of previous heart/chemo issues? Current ejection fraction is 33% in heart.
Also, while they say that AL amyloidosis is not the hereditary kind, I still find this hard to believe (given his sister and nephews issues). Although hubby, a 24 year Army career soldier, did do a short stint in Vietnam and there is a presumed service-connected disability with exposure to Agent Orange and this remains a strong possibility, as well as his exposure to nerve agents while in his Gulf War Deployment. Are any of you out there veterans with these health issues?
I welcome any and all comments, advice and ideas! You are all an inspiration, and it is comforting to know that the battle is a shared one and we can find strength in each other! Praying for each of you, caregiver and patient alike, and those who treat, so that a cure will be found!
God Bless you All!
PS: The biggest question of all that I forgot to ask was in regards to nerve involvement. Everything we have read and asked of the doctors, all that is mentioned is neuropathy. However, hubby has tremor-like body movements during sleep, almost approaching seizure-like activity, with a negative EEG. Does anyone with nerve involvement have any similar symptoms?
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7 posts
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DeeBee - Name: DeeBee
- Who do you know with myeloma?: Husband AL Amyloidosis 10% myeloma cells
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 64
Re: My husband's amyloidosis / multiple myeloma journey
Welcome to the forum!
That is quite a journey you have been on. Thank you for all your information. It will take me some time to digest all of this, but suffice it to say for now that my father and I both have AL amyloidosis, and now I have multiple myeloma too. Even though there is not thought to be a hereditary component to AL, clearly something else is going on for certain families.
One other response I have is that I took Kyprolis (carfilzomib) for several months before it was found to be damaging my heart and lungs, and I was changed to cyclophosphamide (Cytoxan) and pomalidomide (Pomalyst). With dex, of course. After conversations with a few oncologists (and one who is an oncology-cardiology specialist), the heart issue with carfilzomib seems to be more significant than originally thought. My cardiopulmonary injury is improving, and is thought to be completely reversible, by the way.
That is quite a journey you have been on. Thank you for all your information. It will take me some time to digest all of this, but suffice it to say for now that my father and I both have AL amyloidosis, and now I have multiple myeloma too. Even though there is not thought to be a hereditary component to AL, clearly something else is going on for certain families.
One other response I have is that I took Kyprolis (carfilzomib) for several months before it was found to be damaging my heart and lungs, and I was changed to cyclophosphamide (Cytoxan) and pomalidomide (Pomalyst). With dex, of course. After conversations with a few oncologists (and one who is an oncology-cardiology specialist), the heart issue with carfilzomib seems to be more significant than originally thought. My cardiopulmonary injury is improving, and is thought to be completely reversible, by the way.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: My husband's amyloidosis / multiple myeloma journey
I'm a fellow veteran who served in Vietnam from 1968-69 as an infantryman. I was diagnosed with MGUS and autoimmune issues in May 2014. Much to consider concerning Agent Orange in Vietnam and chemicals and inoculations during the Gulf Wars.
My thoughts and prayers are with you and your husband this Veterans Day and may God Bless.
My thoughts and prayers are with you and your husband this Veterans Day and may God Bless.
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Jer610 - Name: Jerry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 5/2014
- Age at diagnosis: 66
Re: My husband's amyloidosis / multiple myeloma journey
Tracy J,
Thank you for the warm welcome! I do remember your post about you and your father (but could not remember your name at the time) and we mentioned it to both the Mayo Clinic doctor and hubby's local doctor. The Mayo Clinic has enrolled the family in a study as they, too, think it too coincidental to not have some kind of inherited disposition. Perhaps they will find a "new kind" of inherited AL amyloidosis from this study.
They explained while any discovery would not allow them to treat any sooner, it would benefit the family members to know if there is a gene that carries this so family could be on the lookout and get sooner treatment before organ damage was done. We have not yet heard of any progress with the study but will let you know if they find out anything!
They also say hubby's finding of 10-15% myeloma cells is incidental finding and his diagnosis is considered as the AL amyloidosis, as primary. Is this similar to your multiple myeloma?
Thank you for the information regarding Kyprolis and the hope for reversal of it's effects. Did the change in treatment protocol help you? Do you know how they base their decision on what chemo to try?
Appreciate your response and look forward to staying in the loop with you! Be Well!
Thank you for the warm welcome! I do remember your post about you and your father (but could not remember your name at the time) and we mentioned it to both the Mayo Clinic doctor and hubby's local doctor. The Mayo Clinic has enrolled the family in a study as they, too, think it too coincidental to not have some kind of inherited disposition. Perhaps they will find a "new kind" of inherited AL amyloidosis from this study.
They explained while any discovery would not allow them to treat any sooner, it would benefit the family members to know if there is a gene that carries this so family could be on the lookout and get sooner treatment before organ damage was done. We have not yet heard of any progress with the study but will let you know if they find out anything!
They also say hubby's finding of 10-15% myeloma cells is incidental finding and his diagnosis is considered as the AL amyloidosis, as primary. Is this similar to your multiple myeloma?
Thank you for the information regarding Kyprolis and the hope for reversal of it's effects. Did the change in treatment protocol help you? Do you know how they base their decision on what chemo to try?
Appreciate your response and look forward to staying in the loop with you! Be Well!
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DeeBee - Name: DeeBee
- Who do you know with myeloma?: Husband AL Amyloidosis 10% myeloma cells
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 64
Re: My husband's amyloidosis / multiple myeloma journey
Jer610,
Thank you also for your service, sir, and thank you for your response! We understand the watch-and-wait can be a nerve wracking experience, as it is for hubby's sister. The Vietnam Agent Orange exposure has caused so many illnesses in our vets. Hoping you have contacted a Veteran Service Officer to see if they can assist you, or if you have enrolled in the Agent Orange Registry thru your local VA hospital.
Prayers and well wishes and God's Blessings to you also!
Thank you also for your service, sir, and thank you for your response! We understand the watch-and-wait can be a nerve wracking experience, as it is for hubby's sister. The Vietnam Agent Orange exposure has caused so many illnesses in our vets. Hoping you have contacted a Veteran Service Officer to see if they can assist you, or if you have enrolled in the Agent Orange Registry thru your local VA hospital.
Prayers and well wishes and God's Blessings to you also!
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DeeBee - Name: DeeBee
- Who do you know with myeloma?: Husband AL Amyloidosis 10% myeloma cells
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 64
Re: My husband's amyloidosis / multiple myeloma journey
First off, God bless you too. I also went a long time undiagnosed. By the time I was properly diagnosed, I was completely paralyzed and I had no use of my toiletry functions. I relate to your husband as far as it goes with the uncontrollable chills and shakes. I was placed on Velcade, Cytoxan, and dexamethasone. But by the grace of God and my dad as my caregiver and finally getting into Moffitt Cancer Center, today are much better.
My dad too served in Vietnam and was exposed to Agent Orange. There is absolutely not one person on either side of my family going back as as many generations as we can find and no one has had cancer. I am the first. This is now the second time that I have heard about the connection.
But back to your medication. The Cytoxan and the dexamethasone was the worse for me but it also did help to get my M-spikes to where they needed to be. Unfortunately I did have blood clots and for 8 months I had to give myself shots in the stomach of Fragmin (dalteparin). So between the Fragmin and the Velcade my stomach was completely black and blue.
I still get uncontrollable chills and then no matter how cold it is I will break into uncontrollable sweating. I really do not know what causes it. I do know that I was given 6 weeks to live 2 years ago. And God has shine his light and blessed me with His grace. God's love, my dad's love, and the love of all my doctors and nurses. I am truly a very blessed person today.
Stay strong for your husband as I will keep you in prayer, the both of you. God bless you
My dad too served in Vietnam and was exposed to Agent Orange. There is absolutely not one person on either side of my family going back as as many generations as we can find and no one has had cancer. I am the first. This is now the second time that I have heard about the connection.
But back to your medication. The Cytoxan and the dexamethasone was the worse for me but it also did help to get my M-spikes to where they needed to be. Unfortunately I did have blood clots and for 8 months I had to give myself shots in the stomach of Fragmin (dalteparin). So between the Fragmin and the Velcade my stomach was completely black and blue.
I still get uncontrollable chills and then no matter how cold it is I will break into uncontrollable sweating. I really do not know what causes it. I do know that I was given 6 weeks to live 2 years ago. And God has shine his light and blessed me with His grace. God's love, my dad's love, and the love of all my doctors and nurses. I am truly a very blessed person today.
Stay strong for your husband as I will keep you in prayer, the both of you. God bless you
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TonyThnkGod
Re: My husband's amyloidosis / multiple myeloma journey
TonyThnkGod,
Thank you for your response and prayers. It is an amazing testament to the miracles of modern medicine that what was once 6 weeks is now years for you!
Thank you for sharing your experience with the meds. It seems not everyone experiences the same thing. Hubby has gotten over the shaking chills but still remains cold all the time, especially hands, sometimes feet. I wonder if the chemo which causes anemia contributes to this?
I still have so much to learn and understand so I can help advocate for hubby who seems in a daze most of the time. Guessing this is the chemo brain they refer to?
Wishing you wellness and health!
Thank you for your response and prayers. It is an amazing testament to the miracles of modern medicine that what was once 6 weeks is now years for you!
Thank you for sharing your experience with the meds. It seems not everyone experiences the same thing. Hubby has gotten over the shaking chills but still remains cold all the time, especially hands, sometimes feet. I wonder if the chemo which causes anemia contributes to this?
I still have so much to learn and understand so I can help advocate for hubby who seems in a daze most of the time. Guessing this is the chemo brain they refer to?
Wishing you wellness and health!
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DeeBee - Name: DeeBee
- Who do you know with myeloma?: Husband AL Amyloidosis 10% myeloma cells
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 64
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