An update & some changes

On Thursday night, I was able to get on my Advent Health portal and see some of the lab results requested by the liver dr. . The liver fibrosis came back as being a 3 (out of 4 stages/not really sure what to call it. ).  Then on  Friday, I saw my oncologist again.  Shr had not seen the any of the test results b/c the wasn't the ordering dr, & had not heard from Dr. the liver Dr yet.    She thankfully could go in and download the results from the AdventHealth site & is going to call the liver dr for me to find out what he is thinking/planning in regards to further testing, etc.  The liver fibrosis test appears toindicate that there is some liver disease beyond the cancer in the liver.  We don't know if he'll still want to do a liver biopsy to get more information or not.  On the liver disease, my oncologist  said the liver can regenerate some especially if caused by a drug when you get off the drug though it may take a while..   She said it is hard to know what caused it as I've heavily treated with chemo, it was full of cancer back in 2012, and there has also been radiation on it twice.  All of that decreased the cancer and has given me time so I think the best decisions were made that we could make.  There may be a med that could help slow it, but the only treatment that would stop it completely would be a liver transplant which they would never do on me b/c of the cancer

I am still having major swelling both as edema under the skin & in my abdomen.  When you are carrying 20-30 lbs of extra fluid, it is crazy how much that can make your back, etc. hurt as well.  My oncologist  has upped both of my diuretics.  This new dose does seem to be working better. She  is also putting a standing paracentesis order in  so that I can just call and schedule it when things get really bad.  She did tell me to wait until I’m super uncomfortable b/c it probably is just going to come back until the liver situation gets better. Unfortunately, the paracentesis only gets rid of the fluid in the abdominal cavity but not the fluid under the skin.

 My oncologist thinks the gemzar is what really did this, but since the halaven took counts so low, etc. and b/c of the liver damage, she thinks switching to Abraxane is a better option.  There are apparently different dosing levels for people with liver disease.  I started the Abraxane on Friday  at a low dose, and she said we could always go up if needed. 

Abraxane is in the taxol family (Haleven was as well).  Hair loss is a defiinite on this drug; so, I will be continuing to wear my hats.  This chemo is infused 2 weeks on  then off 1 week.   My oncologist doesn’t expect the counts to go as low on this chemo.  It can cause nausea, stomach stuff, neuropathy & all the typical chemo side effects, but she said typically it is tolerated pretty well.   So far, the only side effects I've had are related to the fluid not the chemo.  

Sorry this was a bit long, but I wanted to ask for specific prayers related to what is going on.   I"m hoping that everyone has a wonderful weekend and a Happy Mother's Day!

An update

Things have been interesting & busy the last 2 weeks or so.   After the paracentesis in mid-April, I was put on 2 types of diuretics to hopefully remove the edema that I was dealing wit in legs, etc. Meanwhile the prednisone that I'd previously been given caused my blood sugar to go crazy high.    So, those were stopped, and thankfully, my blood sugar is just about back to normal. We've had to up the dose of diuretics several times but any changes in the swelling have been very slow going.  

The liver specialist that my oncologist wanted me to see was not seeing any patients until August or September.   Thankfully, my oncologist decided to call herself and work some magic getting me at least a telehealth appointment.   She also had me get several tests to check out possible causes of the ascites/ swelling so that the liver dr would have those by the appointment.  To check out the heart, I had  an  ECG which came back good & actually the same as prior to first chemo back in 2012.  That was a relief since that original chemo can cause damage.   I also had an MRI of the abdomen.  It showed that the lungs were good which is always nice to hear especially with COVID going around.  The MRI showed that there was no additional cancer outside of what we knew about in the liver.  There also weren't any blockages or things of that nature.  That is good as I don't want to have to deal with that or have a surgery, etc. at this time, but it leaves us with more questions than answers.

I had the telehealth appt with the liver dr this past Tuesday. He was incredibly nice and caring, but  so far there is not an "easy" answer for whats going on.  My spleen is slightly enlarged which he says does point to a liver issue. I was also getting very uncomfortable with swelling in the abdomen again.  So, I had another paracentesis this past Friday.  They removed 4300 ml ( or about 9.5 lbs) from my abdomen again with this procedure.  No wonder I was feeling so uncomfortable especially with still having the edema as well.   Some of the lab tests will take about a week to get back.  I'll then do an appt with the liver dr again, and he will decide if he wants to do a biopsy of the non-cancerous parts of the liver.  He seems to be leaning towards some form of liver disease, but will know a bit more after this set of tests.   With all the chemos and radiation I've been on,, he stated that it wouldn't be that unusual  the liver was damaged or lead to liver disease.

Saw my oncologist on Friday before the paracentesis.  I haven't been on chemo in several weeks.  There is a feeling of wanting to get this figured out before having more chemo but also you don't want to wait too long.   Depending on some of these results & what the liver dr is planning, she may have me restart the Halaven on the  lowest dose possible  this coming Friday.  

Not sure how I feel about this.  So, I'd appreciate thoughts and prayers that we do whatever is best for me in relation to all of this, and that things will straighten out with the current issues.    Hope everyone has had a good weekend, and that you are staying safe and well!