Officially a trend now

Four straight weeks of dropping Alkaline Phosphatase and there is no denying it now:

April 25: 2015
May 02: 1414
May 11: 1126
May 17: 937
May 24: 709

It is still a ways to go to get to normal but there is no denying the improvement that we are seeing.  It should also be noted that this week's improvement was in spite of adding in one day of lipids.  Now I didn't expect the one day of lipids to cause a problem but it is also good to know that we can continue to increase the lipids, putting us on track for surgery.

Not all my labs are good.  My Hemoglobin has now dropped to 9 and we have been striving to keep that above 10.  I see my nephrologist in about two weeks but we may need to address the anemia a bit sooner.

Also, my prealbumin is just 16 this week.  This shows, to some extent, my level of nutrition.  That needs to be improved before surgery as well because it is something that relates to overall strength and ability to survive and recover from surgery.  I have been running in the low normal range for some time (20-24) but this dip to 16 is dramatic and demands some attention.

So, I am on the path but still have some work to do.

Surgery is at least 5-8 weeks out.

Spoke with Dr. Boudreaux and he is go for surgery but needs me to be more nutritionally solid.  To this end, I need to be on lipids for 3-6 weeks before scheduling a surgery date.  I don't know what we do if my numbers start to climb again and I don't know what we do if I don't tolerate the lipids.  I just know that we now have at least a limited plan on file for doing surgery sometime this summer.

Yea!  NOLA in July.  What could be better?  Of course, I would eventually get to eat but just think of poor Stephanie and 90 degree days with 90% humidity....

So we wait again but we are waiting with a plan for moving forward and that is better than before.

Does three weeks make a trend?

Liver markers continue to improve.  AST and ALT are now smack dab in the middle of normal (high normal last week) and Alk Phos as dropped again to 930.  Normal for Alk Phos tops out at 125 but this is a drop of about 200 in the last week.  I have left a text message with Dr. Boudreaux, passing on this information and asking to speak with him, hopefully to discuss a plan for surgery.

I am almost afraid to hope that this will happen.  I have been getting yanked back repeatedly over the last two months and I just don't want to start anticipating something that will get put off again.  I know my liver numbers are improving but, at the same time, I have lost some of my strength due to the lack of calories.  I need both before we have surgery and need to see them both improve.

As to the calories, we are going to start trying a bit more with the TPN.  It is very limited but we will be doing one day with lipids and see if my markers continue to improve next week.  I am taking in a small number of calories orally but it is probably less than 100 calories/day that stay down.

So, another week of waiting.  I do get to see my daughter graduate high school tomorrow which will be a highlight of my month.  All I can do otherwise is just to hang tight and hope for continued good results which will lead to a plan.

Tentative liver improvement

Over the last two weeks, I have seen improvement in my liver markers.  The alkaline phosphatase has improved from 2000 two weeks ago to 1400 last week and then 1100 this week.  The ALT and AST markers have also improved and are now sitting right in the normal range.  I also had a liver biopsy earlier this week to see if we could identify anything else amiss an it came back only showing that I have carcinoid cancer.

There is good and bad in these results.  The good is that I don't have autoimmune hepatitis and I don't have hereditary hemocromatosis so we don't need to worry about those anymore.  The bad is we still don't really understand why my liver numbers are misbehaving so badly.  The MRI I had three months ago showed just 20% liver involvement but there is always the possibility of tumors that just aren't showing up on that scan.

We also don't know why it has been coming down.  For the last two weeks (and next week as well), I have been running with TPN without lipids which is basically just glucose along with amino acids (protein).  At 1450 calories per day, this is a slow starvation and I obviously can't continue this way for terribly long.  They did find some high levels of trace elements in my system and have removed some of those from the TPN but we just don't know what change is making things better.  Are the TPN changes even affecting what is going on? 

I have been taking a new medicine called urodoil which is primarily given to help clean up gall stones or sludge but I don't have a gall bladder and my bile ducts are clear.  I have eliminated almost all the supplements I have been taking as well which cannot continue in the long run because of my kidney disease.  Is the new medicine helping or is the lack of supplements helping?  How do you know without starting or stopping as appropriate and risking the numbers going back up again?

So, what do we do now?  I wish I knew.  I haven't spoken with Dr. Boudreaux (biopsy results will be faxed down there tomorrow) and know he will want to see continued improvement.  He was also of the opinion that my cancer was not taking over the liver but what can you say at this point?  How do you really know without opening up and taking a peek?

So, onwards we go with a continuation of the uncertainty.  Cancer is waiting for the current results.  Waiting for the next time you get tests.  Waiting till you can start a new phase of treatment.  Waiting, Waiting, Waiting.  I just want to know what to expect and what to plan for but all this uncertainty is clouding the crystal ball.