[Melpen]

Re: Amyloidosis and multiple myeloma

by Melpen on Wed May 14, 2014 9:34 pm

Ray's story is so inspiring I was recently diagnosed with multiple myeloma after a plasmacytoma fractured my femur I almost didn't survive after surgery, ended up in the advanced heart failure unit at Beth Israel in Boston for 2 weeks They diagnosed amyloidosis I am currently on dex/cytoxin/Velcade and my PEP and proteins after a slow start are finally responding and coming down I am going to Boston Medical Center amyloidosis clinic next week for amyloidosis evaluation they are supposed to be tops in research in country and Beth Israel suggested I go

[parkerj]

Re: Amyloidosis and multiple myeloma

by parkerj on Fri May 23, 2014 10:05 am

Hi Joni,

I'm new to this site, my mom was diagnosed with multiple myeloma in January of this year and I'm looking for therapies in addition to the chemotherapy regimen to help her along the way.

My mom is also struggling with kidney function, and I found your post to be very helpful and encouraging, and hoped you wouldn't mind sharing some of the links to the holistic sites you use for your kidney friendly diet. I've checked out a few already, but want to make sure I'm not missing an especially good site.

Thanks again for sharing your progress, it gives me a little hope that we might beat this thing yet.

[Joni B]

Re: Amyloidosis and multiple myeloma

by Joni B on Mon Jun 30, 2014 11:07 pm

Parkerj: Sorry I've been off this thread for so long. I don't really have any one site I use. More just a compilation of things that made sense for me based on what my kidneys were having trouble clearing. Phosphorous was a biggee so I researched which foods were high in it and stayed away. Like I said before, lots of berry smoothies with almond milk, nettle tea & artichokes and avoid heavy proteins like beef, dairy and acidic food like oranges, tomatoes coffee etc. with the one exception being lemons & cider vinegar. Those two actually balance your ph.

My last blood test my creatinine dropped from 1.8 to 1.5, so I think the healing is continuing. Hang in there and just keep grabbing snippets of info where you can. And like Socrates said " let food be your medicine and medicine be your food". With a dash of Velcade for good measure ... For me at least!

PS: The kidney association website is the worst! They have you drinking Coffeemate instead of dairy! Really!

[Lsellers]

Re: Amyloidosis and multiple myeloma

by Lsellers on Tue Jul 01, 2014 4:41 pm

I too was blessed with both in 2012. My amyloidosis affected my tongue. I was on a feeding tube for 7 months and dialysis for about a month.

I'm still not completely back to normal, Still having issues swallowing, but at least I'm off the tube. Wondering if anyone else out there is having the same issue.

[parkerj]

Re: Amyloidosis and multiple myeloma

by parkerj on Wed Jul 16, 2014 3:26 pm

Joni, I appreciate the reply, regardless. My mom just started dialysis last week as there was a very quick increase in her creatinine levels over the last month. They just did a kidney biopsy and, while she hasn't been diagnosed with amyloidosis yet, I suspect the results will reveal it … they have suspected it from the beginning.

I think I may have gotten the wheatgrass suggestion from a previous post of yours. With the need to be cautious of potassium, how do you incorporate that into your routine -- how much / how often?

I've also been looking at diet suggestions from DaVita (Helen Dorrough). Does that site mean anything to you?

Again, thank you for the information, this has all been very overwhelming.

[stann]

Re: Amyloidosis and multiple myeloma

by stann on Thu Jul 17, 2014 10:09 am

I was also diagnosed as having primary amyloidosis and multiple myeloma. Went to the internet and freaked out. One doctor confirmed that life expectancy was very short. multiple myeloma specialist said to just ignore the amyloidosis and treat the multiple myeloma. I was sure he was downplaying the significance of the amyloidosis for my benefit.

The only difference when treating me was they did extra tests to make sure I had no damaged organs from the amyloidosis. I had no involvement, yet I'd never know the difference if I had it or not.

All is good here. Actually, the doctors don't even mention the amyloidosis anymore. I 'only" have multiple myeloma.

If I understand it correctly, the amyloidosis that occurs without multiple myeloma is a much different and more aggressive beast.

[SamM]

Re: Amyloidosis and multiple myeloma

by SamM on Tue Aug 19, 2014 9:57 am

I was diagnosed with multiple myeloma & amyloidosis at age 47 in 2009 with kidney and heart involvement. I have had the Thalomid / dex / cyclophosphamide treatment, which stabilized the disease for almost 2 years. We tried another round of Thalomid to no avail, we then tried Velcade, which also failed to stop the progression of the multiple myeloma.

In late November 2013 I had an autologous stem cell transplant. Unfortunately the last blood test result has shown that the light chain reading has gone up significantly. I will now start chemotherapy treatment (melphlan & dexamethasone).

I am not ready to throw in the towel just yet, so I am definitely planning to put up a fight.

Reading the posts in this discussion thread has given me strength and hope.

[SamM]

Re: Amyloidosis and multiple myeloma

by SamM on Sat Aug 23, 2014 4:45 am

Has anyone had a relapse after a transplant?

If so, how / what treatment was given? What was the outcome/results?

My doctor has suggested lenalidomide [Revlimid] / dexamethasone treatment..

Thanks

[Ian]

Re: Amyloidosis and multiple myeloma

by Ian on Sat Aug 23, 2014 5:45 am

Hi Sam,

Sorry to hear about your relapse.

You may want to start a new discussion topic specifically for your question. If you do, it would be helpful to include include in it information such as when you were diagnosed, what you were diagnosed with, and what sort treatments you've received. You also may want to mention where you are (what country), since that can affect treatment options.

Cheers