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jan52241
@jan52241

Posts: 10
Joined: May 22, 2016

Current diagnosis is Amyloidosis and multiple myeloma

Posted by @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.

REPLY

@beckyoutlaw1115

Has anyone had Velcade injections and Dara infusions n the same day? And if so, by combining these drugs, did they bring light chains down? I was on Velcade but I reached a plateau when they wouldn’t go any lower. Then my Dr. changed me to Dara. It worked to bring them down 2 points but after 8 weeks no more. So that’s the reason he combined them. Your feedback would very much appreciated. `

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Do not hesitate to contact me in the future if you want. If a phone conversation would be helpful, send your phone number and I will be more than happy to call you. No one needs to do this alone – especially when you aren’t!
Nancy

@beckyoutlaw1115

Has anyone had Velcade injections and Dara infusions n the same day? And if so, by combining these drugs, did they bring light chains down? I was on Velcade but I reached a plateau when they wouldn’t go any lower. Then my Dr. changed me to Dara. It worked to bring them down 2 points but after 8 weeks no more. So that’s the reason he combined them. Your feedback would very much appreciated. `

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Yes, I did.  Thanks so much.

@beckyoutlaw1115

Has anyone had Velcade injections and Dara infusions n the same day? And if so, by combining these drugs, did they bring light chains down? I was on Velcade but I reached a plateau when they wouldn’t go any lower. Then my Dr. changed me to Dara. It worked to bring them down 2 points but after 8 weeks no more. So that’s the reason he combined them. Your feedback would very much appreciated. `

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I love what you wrote “No one needs to do this alone .. especially when you are not.”

I love your comment also.

@beckyoutlaw1115

Has anyone had Velcade injections and Dara infusions n the same day? And if so, by combining these drugs, did they bring light chains down? I was on Velcade but I reached a plateau when they wouldn’t go any lower. Then my Dr. changed me to Dara. It worked to bring them down 2 points but after 8 weeks no more. So that’s the reason he combined them. Your feedback would very much appreciated. `

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After a visit to Mayo in MN August 2017. I continued on Velcade and Dex for maintenance. When kappa free light chain numbers started to increase, my local physician and Mayo physician consulted. After confirmation that indeed the progression was a trend, I started Feb. 7 on Daratumumab/Darzalex in combination with Dexamethazone weekly. Yesterday was my second of the first 8 weekly treatments. (Thrilled with no significant side effects today!) I remain totally optimistic that my highly qualified physicians are on this, and there will continue to be options waiting in the wings when necessary. Meanwhile, fatigue is the major effect MM has on my life, in part because of chronic pain. I would encourage all to refuse to be held hostage by fear, surround yourself with positive and faith based friends, and continue to realize a purpose in life. We are not defined by our disease.

@debdeb

What were your symptoms leading up to diagnosis?

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It's a bit disconcerting that these posts are almost a year old. What happened to these people?
Are there no current posts?

@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?

@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.

@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?

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.

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

@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?

What is your D3, K2 and Magnesium levels?

@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.

@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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