A lot of things have been going on, so I'm going to organize these updates according to time scale.
Immediate: The blockage has resolved
Penny did well on a liquid diet yesterday, was upgraded to "full liquids" this afternoon, and was just upgraded to "post surgical softs" for a late supper. So far everything is going well with the diet progression. She has had no nausea the last 48 hours and very little pain.
It isn't clear which symptoms from the last two weeks are related to what. We've heard all sorts of possibilities ranging from the study drug causing nausea, leading to dehydration, which triggered the obstruction to a partial obstruction first presenting as nausea to the obstruction being entirely coincidental to the previous period of nausea.
The one thing that seems clear however, is the the blockage is not due to some new growth of the cancer constricting the intestines.
Intermediate: Some unresolved issues
The blockage is not, however, the only thing we are dealing with. There are several other things being investigated.
The first is persistent low blood pressure. Yesterday Penny received some extra boluses of fluids and some meds to help boost the blood pressure.
That has now resulted in a second thing: fluid retention in her legs and feet. The usual treatments for this generally cause a decrease in blood pressure, so we are avoiding those in favor of "leg squeezers" (there is probably a technical name for these) and ambulation (the fancy term for taking walks).
The fluid retention may also be related to low protein levels (likely caused by poor nutrition the last couple weeks), so she has been getting supplemental albumen to help with that. Progressing the diet should also help. But it will take some time to get the protein levels back to normal.
Finally, Penny's white blood cell count has been high, and there is a small amount fluid in the abdomen, so she had a paracentesis to remove some of the fluid for testing. Initial results indicate a bacterial infection of some sort. We should get more details from a culture in 24-48 hours. I think the infection was a little bit surprising since there haven't been any other symptoms of infection (like a fever) and the initial thought was to check, just to be sure there is no infection. Penny is on IV antibiotics for the infection.
Later this evening Penny will have an ultrasound on her legs to make sure the fluid retention is not being caused by a clot. If she's cleared, then she will get to wear fancy compression socks.
Longer term: Unclear what's next
Because they needed to do a scan to check for issues related to the bowel obstruction and a regular study scan was scheduled for August 21, they did a full chest, abdomen, pelvis scan, basically accelerating the scan previously planned for August 21. As with the last scan, most of the nodules they are measuring remained the same or grew slightly. New this time is a small amount of fluid in the lung. The most likely cause for this is that the cancer in the peritoneum (lining of the abdomen) has spread to the pleura (lining of the lung). This is a common site for metastasis with this kind of cancer.
So the effects of the study drug appear to be "underwhelming", and not just for Penny, but generally across the study. Dr. Lakhani seemed to indicate that Penny may have been on the drug as long as anyone as been to date. (We gather than nausea has been a problem, some patients may have been sicker to begin with, and the general expectation was to see some improvement within a month or two.)
So going forward, "there are no good options here". Dr. Lakhani's team is investigating to see if there might be another clinical trial and also checking to see if the current study is recommending any modifications to the protocol. We can continue with the study drug once Penny's out of the hospital, but it is unclear that it is doing anything to help. We can return to one of the previous chemotherapies, and after a time away, sometimes they regain some effectiveness, but there is no guarantee of that either.
We don't have to make any decisions about treatment until the immediate and intermediate things resolve, so for now we are focused on those and on some fact finding about longer term treatment options.
Comments
Paige Munson: I'll be praying that she can be discharged soon and that next steps will be clear. Wishing I could be closer to to give you a hug, so I'm sending love from Rochester instead.
Terri A Boer: Thanks for the update. Continued prayers for you all.
Talon Rindels : Oh Aunt Penny, you are so so strong! Sending prayers from Ireland. โค๏ธ
Teri Warners: My heart is aching for you and Penny right now. Sharing in your disappointment but holding you and the doctors up in prayer. Thank you for the update Randy.
George Monsma, Jr.: Thanks for the detailed post. Thankful that the blockage has resolved; praying for a resolution of the fluid/low blood pressure problems, and for a good longer term treatment plan that keeps the cancer in check. May God give you all peace through this.
Marie VanderLinde : Thank you , Randy, for such a helpful update. We are praying for wisdom for all and a way forward, and so grateful for resolution of the obstruction and nausea.
Scott Vander Linde: Continuing thoughts and prayers for strength and wisdom.
Herm De Vries: Thank you for this update. Holding you all in prayer as you process this news and seek the right next steps.
Laura DeHaan: Today, all of us at the Provost's office got together and prayed for Penny.
Glen Boer: Keeping you in my prayers
Thomas Geelhoed: I'm not sure that fervency makes a difference, but I still have no more fervent prayer than for your healing.
Kimberley Carlos Belez: Thanks for taking time to post. Thankful that the blockage has resolved, but disappointed with you in the underwhelming drug results. Keeping you lifted up as you journey through the knowns and unknowns.
Mary Hulst: That is heavy news, and I pray with you for resolution to the immediate and intermediate issues, and much wisdom and clarity about longer term plans. May God give you gentle and lovely gifts of grace every day.
Jane Warners: Praying for wisdom and reolution of the symptoms. Thanks for your detailed report! Hugs for you both!
Patricia Boer Fischer : Thank-U 4KEEPIN Us All Posted ๐ซ & Updated on Penny..We'll Continue 2 Pray ๐.. May Our Lord Jesus Help & Strengthen Penny!! Hugg's Love โค๏ธ & Prayers ๐ from Tennessee ๐งก Patricia Boer Fischer ๐
Laura DeHaan: Sending much love and prayers. Praying Isaiah 43:2&4 for Penny and her family. "You will pass through deep waters, but I will be with you. You will pass through the rivers, but their waters will not sweep over you. You will walk through fire, but you will not be burned...You are priceless to me. I love and honor you."
Andrea Turner: This is not the news i was hoping to hear about Penny's clinical trial! I am glad you have access to thoughts about the trial at large to give perspective on Penny's experiences. I am hoping the next days show improved comfort so that you both are in a better place from which to look ahead...you are both TRULY an inspiration for attitude and perseverence. It is evident that you both demonstrate fruits of the spirit.
Jim Ludema: We continue to hold you in our prayers Penny and Randy. Much love.