Current diagnosis is Amyloidosis and multiple myeloma

Posted by jan52241 @jan52241, Jun 12, 2016

I was diagnosed with myeloma quite by chance at a routine neuro appointment a year ago. My current diagnosis is Amyloidosis and multiple myeloma I have no one who understands this condition to talk to. I have peripheral neuropothay on my left leg and toes. I have had every test imaginable in the past year to monitor this condition. I would like some advice and what to expect in the future.

@debdeb

What were your symptoms leading up to diagnosis?

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Hello @carolynaune, I can understand how looking at older post may be off-putting or concerning. Connect will be undergoing a bit of a makeover to help lay out discussions in a more relevant order. I'd like to tag @oldkarl and @1nan to rejoin the discussion as they have posted more recently than a year ago. @carolynaune, if you don't mind sharing, what questions do you have for the community?

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@debdeb

What were your symptoms leading up to diagnosis?

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If I can be of any help or support, willing to do so. June will be start of my third year of treatment for Multiple Myeloma. I was diagnosed in 2004. Currently I am hoping to connect with someone being treated with Darzalex. After eight weekly treatments, I just had the second of eight biweekly treatments.

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@debdeb

What were your symptoms leading up to diagnosis?

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Have not had a definitive answer to what type Amyloidosis I have . Had bone marrow biopsy and fat aspiration. Not good enough I'm told. Need a heart biopsy. Has any one else had this experience?

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I would like to discuss your condition with you if you'd like. Have peripheral neuropathy as well as amyloidosis. Doctors are not familiar with Amyloidosis at all., even though I was seen by a hemotologist as well as a cardiologist. Then, at Mayo, learned that I was seeing a nephrologist–but my kidneys function just fine.

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Has anyone diagnosed with type AL Amyloidosis had success after treatment with Darzalex? If so, how many treatments?

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@bensondexter, I'd like to invite @1nan and @beckyoutlaw1115 to this discussion as they both have discussed Darzalex treatments previously on Connect.

@bensondexter, while we wait for some input on Darzalex, do you feel comfortable sharing how you are feeling? Do you have any other concerns other than the specific treatment?

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What is your D3, K2 and Magnesium levels?

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@bensondexter

Has anyone diagnosed with type AL Amyloidosis had success after treatment with Darzalex? If so, how many treatments?

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Hi. Apologies for coming into this conversation wiithout having details about your situation. But I can tell you that I startedreceiving Darzalex in January. Following established protocol I completed a series of 8 weekly treatments, and this Thursday I will get the 8th of 8 biweekly treatments. From there on treatments are monthly. Initial side effects were bone, muscle and joint pain along with other miscellaneous ones. I learned that taking over the counter Claritin majorly reduced those side effects. My myeloma numbers have dropped dramatically. I look forward to my August appointment at Mayo to learn what this will look like going forward. I was interested in hearing from others who have had this treatment. I am open to phone conversation on this or other topics.

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@JustinMcClanahan

@bensondexter, I'd like to invite @1nan and @beckyoutlaw1115 to this discussion as they both have discussed Darzalex treatments previously on Connect.

@bensondexter, while we wait for some input on Darzalex, do you feel comfortable sharing how you are feeling? Do you have any other concerns other than the specific treatment?

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I am having tremors in the hands, arms and legs which leads to falling down. I was falling before i started Darzalex. No side effects that I can identify after 8 weeks of taking Darzalex. Does anyone else have tremors and falling issues with Amyloidosis?

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@jimma

What is your D3, K2 and Magnesium levels?

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I don't know but will try to find out.

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I have Myeloma and take DarzaI . I have experienced shakinesss NO FALLING I also experience nausea but nothing happens but a towel is always nearby

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I also have significant side effects that limit activities as well as annoyances, like loss of taste; nausea and poor appetite; constant fatigue and weakness; needing to briefly stand in place on standing before moving forward; and the usual things that come with high doses of steroids. But mental energy is good, no "shakiness" or falling, and I have been successful at "pushing through" to keep living life. Looking forward to seeing if lower doses are possible moving forward. Weeks between treatments have maintained same level of side effects, no decrease.

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