Sunday, December 2, 2012

Stent Or No Stent, That Is The Question

So it looks like things are moving ahead after a week of rest and time outside the hospital. A few days ago we had an appt. with a physical therapist, who helped access Phil's shape and what exercises he will need to be himself again. He will start very small as his energy is non-existent and he is quite weak. At this point he can take a 10 minute walk at the most, then he will come home and crash. So we keep it to 5 minutes at this point. He needs to lay down for most of the day, but we encourage him to get fresh air, even for a bit.

After that appt. we consulted with Dr. Vempati, our Oncologist Dr. about where we should go from here. I will try to explain her words as best as I can. I have had to do a lot of listening and reading to understand everything that has happened and will happen. So here we go:

Phil has a few malignant tumors as you know. At this point the lymphoma resides in his pancreas opening and bile duct, one large one above his heart and two in his lower back lymph nodes. The pet scan taken a few weeks ago lit up the spots on his 3D XRAY where we should be concerned. That is how we were surprised, along with the Drs, that it wasn't just in his GI tract. The best way to cure B-Cell non-Hodgkins Lymphoma is with a combination of radiation and Chemotherapy. His radiation is all finished up and it is what ultimately stopped the bleeding from continuing. We went every morning at 8:30, and he even received a diploma at the end of it with all of the Drs signatures :)

Dr. Vempati however, informed us that his Bilirubin levels have not dropped all that much from the beginning of radiation. But we can be thankful it took care of stopping the tumor from growing more, which was pushing against friable tissue in the pancreatic regions. Radiation basically decomposes or kills cells. The tumor in his GI is about the size of a golf ball, and though it has not shrunk a lot, it is kept in a reasonably good state right now. This will only last for so long though. We really have to start Chemo. Note the picture below. I have added circles to show you where the tumor is...

Problem: We cannot start Chemo until his Bilirubin levels are down to 3. He is at 5.3, and it has been that level for a while now. When Bilirubin levels are high, this means that the bile duct is obstructed an unable to filter toxins properly throughout digestive tract and liver. As you know, Chemotherapy is toxic soup that just about kills you but not quite. If we were to flood his body with it right now, that means that the toxins will not be able to flush and filter properly- that is life-threatening. Think of this: He has jaundice, which is a sign that his body is not filtering well NOW. He has to filter well before we add more toxins. So we have 2 choices, and neither of them come without risks. Here they are:

#1 Choice: Put a stent in the bile duct/pancreas area where the tumor is. This is a little thing that pushes the bile duct open, even though it's squished closed by the tumor. This enables the bile to flow freely, resulting is a cure for the jaundice, and then bringing the Bilirubin levels down. With stent in, the Drs get the R-Chop Chemotherapy started straight away. This is the best case scenario for nipping the spread of Lymphoma in the bud faster and more efficiently.

The downside: Putting a stent in this sensitive area could start the bleeding all over again. Remember that the kind of tumors Phil has are ultimately balls of teeny tiny blood vessels, all mixing together into a messy mass. If you try to touch or even cut into it, the tumor will bleed and it is very hard to stop. We were told time and time again that burning a tumor to stop bleeding doesn't usually last more then a few hours. But this was proven wrong a few times, because that is how they stopped Phil's hemorrhaging. It does work for the most part, and is there as an option.

The stent is put in place by means of Endoscopy. That's where they put you to sleep and stick a scope (camera) down your throat and do their work from there. It is very detailed work. But Phil has had at least 3 or four of them done now, and they are a breeze compared to anything else Phil has gone through. First they will look around with the camera and see what shape the tumor is in. They can tell if it has improved with the radiation or if it is still too risky to mess with. If it is too messy, they pull back out and go onto plan #2.

#2 Choice: This part is hard to explain but I will try my best. Basically, the Drs would have to come up with a custom mix of perfect levels, kinds and amounts of Chemo made just for Phil. They would get it through his body in a way that bypasses the liver altogether. I am not sure how they do this. I am pretty sure it is through infusion, but I will get back to you on it. In Dr. Vempati's words: "it's not fun". But I trust the Drs. They have saved Phil's life at least 4 times in the hospital, under the most intense moments you could imagine. They know his case very well and will work together to come up with the best help possible. Phil's case is big in the hospital at this point and the Drs realize what is at stake, esp because he is so young to get this kind of cancer. They want to win this thing as much as we do.

With the #2 Choice, they would start with very small doses, as the bilirubin is too high to mess with. Slowly but surely the tumors would shrink, and when the bilirubin is down to 3, they can go in with R-Chop full boar. I have asked many, many questions, even suggesting some reasonable things that amazingly, the Drs have agreed with and are taking action to get done. First and foremost another pet scan to see in detail how the body is looking as far as the spread or even the shrinkage of the lymphoma. Also the continuation of Rotuxin, one quarter of the R-Chop Chemo mix that does not cause any negative effects to Phil's body, but does a small part in keeping everything at bay.

Now that you know the options, here is the plan for next week:

The Plan-
Monday night Phil goes in as inpatient and sleeps over. I am hoping they will do a pet scan while he is there. Early Tuesday morning Phil goes in for Endoscopy with intent of putting in stent. If it looks good, they put it in. He would be on close watch as he came to, and went through the day. If he is fine, he is free to go home Tuesday night. I would like to stay overnight once again, just to be safe - mostly because I know how quickly that bleeding can get out of control.

Thankfully all of our bloodless alternatives for raising his hemoglobin have succeeded. When he was at his lowest, around 3 or 4 a few weeks ago, he is now up to 14! That is the average number for a healthy man! Everyone at the hospital is in shock, and so are we. It is pretty amazing. The hospital spared no expense so that he could get the special nutrition and EPO he needed to survive. So if he begins to bleed, and the Drs go in and stop it, we don't have to worry like we used to, as much. We are so thankful and impressed with Kaiser Permanente.

Wednesday he starts Rotuxin chemo, which takes about 5 hours. This can be done as outpatient via infusion, and last time Phil had it done, he had no side effects- he was simply tired afterward. He will also be getting his iron infusion, maybe at the same time. We always have JW House for meals and comforting time away from the hospital when we need it...easily one of the biggest blessings of this whole experience.

As far as the rest of the week goes, it all depends on how he reacts to the stent, or if they go for choice #2. I will keep you updated. Dad flies in Friday night for the weekend, and will be able to give mom some much needed cuddles and encouragement. She has been a huge help and I'm definitely unsure of how I would be surviving without her. All of you and your texts, prayers and concern are keeping us going as they have been for months now. Hopefully this week goes smoothly and we can get this whole nightmare overwith and get back to life as twenty-somethin lovers ;)

Note: Phil is loving his carbs right now. He finds that when he eats white food he doesn't experience pain while digesting. He enjoys subs, pizza, pasta, cereal and shakes. I would rather him eat more veggies, but he is getting SOME and fruit too. Most importantly he is gaining weight, and that is HUGE before Chemo starts. He needs strength and fat on him to battle through it. I have read that those undergoing Chemo have no appetite at all. Now is the time to get him ready. If you feel like dropping in to say hi and drop him off a treat, you can look here for his current food favs. Be sure to text me before dropping in, because sometimes we are out, in an extra bad mood, or sleeping LOL. We love you and would love company so don't give up trying to get in touch even if we are seemingly busy all the time. Phil does best when his friends are around him! It's pretty amazing!

Hugs and love to you all. Hope you are all hanging in there yourselves.


Jordy said...

Glad to hear the hospital and Doctors are very accommodating! My family is praying that all goes well for you both!

Sturge said...

Hollie, you are such a gifted communicator. Thanks for taking the time to so thoroughly answer all of our questions (Phil's family and friends).

With you by his side, Phil has the best care in the world :-)

He has made one recovery that was nothing short of miraculous. No matter what path he and his doctors decide to take next - count on Phil's courage, strength and determination to get him through treatment, and on to the road to full recovery, all in good time.

Be patient like you've been all along, and keep smiling and laughing between the tears. We're all here for you every step of the way :-)

Dad xo

Linda said...

Thanks so much , Hollie for the updates on Phil's condition are such a wonderful support for him . We want you to know you are in our thoughts and prayers .......may Jehovah continue to give you strength as you need it. Sending lots of love your way !!!
Wayne & Linda