[MrPotatohead]

Low alkaline phosphatase - should I worry?

by MrPotatohead on Thu Aug 04, 2016 12:18 pm

I am on maintenance with Kyprolis and dexa­metha­sone after com­pleting a success­ful treat­ment cycle with Kyprolis, Cytoxan (cyclo­phos­phamide), and dex (KCD), which brought me to com­plete response as measured by the serum free light chain assay (I have kappa light chain multiple myeloma).

All of my numbers have improved, except alkaline phosphatase. At diagnosis, over one year ago, it was at 88 U/L (normal range is 45-117). It has steadily decreased, and now is at 38 U/L, flagged as "Low."

My oncologist advised me not to worry about it; it is a problem only if it's high, according to him.

Any other opinions on this?

Thanks.

[JimNY]

Re: Low alkaline phosphatase - should I worry?

by JimNY on Thu Aug 04, 2016 1:28 pm

Hi MrP,

Sorry, but I don't have an answer to your question, although I would tend to go with what your doctor says.

However, I was wondering if your alkaline phosphatase has been dropping during all the treat­ment you've received for your multiple myeloma, or if it's been something more recent – say, since you started the Kyprolis, cyclophosphamide, and dex treatment?

Good luck,
Jim

[DaveNV]

Re: Low alkaline phosphatase - should I worry?

by DaveNV on Thu Aug 04, 2016 5:24 pm

My alkaline phosphatase (ALP) dropped to the 40-ish range during the approximately 5 months a solitary bone plasmacytoma was painfully rotting my femur. Of course, my M-protein was exceeding regression levels at this time as well. After radiation treatments and about a month after starting Kyprolis, Cytoxan, and dex, it snapped, requiring a titanium rod and two pins. At that time, my ALP began increasing up to about 110 after a full year. My PTH rocketed up even faster, to over 1300 pg/ml. I was on KCd for 10 months. A year after the break, my orthopedic surgeon said the bone hadn't fully healed and he doubted it ever would.

There are published reports on Kyprolis that show it increases ALP in responders and the PTH receptor mediates the anti-myeloma effect of proteasome inhibitors in mice,

Frankly, based on my personal experience, I disagree with your oncologist. If you have those decreased ALP levels for more than a few months, rising kappa light chains, and new localized bone pain, get that bone X-rayed, CAT scanned, and/or MRI'ed. Had I gotten the radiation treat­ments several months sooner, I might not be packing titanium now.

Good Luck,
Dave

[MrPotatohead]

Re: Low alkaline phosphatase - should I worry?

by MrPotatohead on Thu Aug 04, 2016 10:09 pm

Hi JimNy

My alkaline phosphatase level has been decreasing since my diagnosis in March, 2015. At that time, it was at 88; now it's down to 38. And this decline has occured steadily across all my treatments, including treatment with Revlimid and then subcutaneous Velcade, both of which failed, and my latest successful KCD regimen.

Hi DaveNV

I have had the decreased ALP level for over a year, including the last five months, during which I achieved a complete response on KCD. It has continued during the Kyprolis and dex maintenance protocol I am on now.

A recent PET/CT scan appeared to show decreased myeloma activity (although the radiologist's report was a bit ambiguous on this point, and I am getting a second opinion on the interpretation of the PET/CT). It also showed a large number of lytic lesions throughout my skeleton, but no increase in their number compared to earlier imaging. There were no plasmacytomas, my free kappa light chains have been dropping (my myeloma is being tracked with the free light chain serum assay because I have kappa light chain myeloma -- hence no M-spike as disclosed by serum protein electrophoresis). And although I still have bone pain, it has remained stable since my diagnosis, with no increase.

Thanks, JimNY and DaveNV for sharing.