Robbie has been on the chemo drug Voltrient for a month now. The medicine has caused him to be very tired and have little appetite. Yesterday he had a great day…energy and looking more like himself. I Googled it of course to learn more about it. This brought me to the page below. Lawyers advertising to take your Votrient case due to the adverse side effects. Sometimes it is better not to know. The only side effect we want is to kill the cancer.
Lynn and Robbie went to the same tea place as yesterday and used their computers along with having tea. Next they had lunch at Pho Saigon. Best part of lunch was finding the soursop fruit drink like they had in Costa Rica. The siblings have had a fun week together.
Today after Robbie had a bloodwork appointment, Lynn took him to Torchys Tacos. Robbie really likes spicy food since he has gone through chemo.
He is up to three chemo pills a day and so far minimal side effects. Pazopanib (Votrient) is currently in clinical trials for osteosarcoma, but he isn’t in one of the clinical trials. This is a targeted chemo drug that can affect a tumor’s ability to make new blood vessels. You can Google it along with osteosarcoma to find out more information.
First….a sweet child singing about Peace in Christ. Keep praying for a miracle for Robbie.
Sadly, we learned today that his cancer has continued to grow in his lungs and new tumors have started in both lungs. The immunotherapy that has helped so many people, had no impact on his cancer. The news is devastating to all of us, especially for Robbie.
They stopped the clinical trial and for now he will start taking a chemo drug that for some people has slowed the growth of new cancer, but rarely kills osteosarcoma. The drug is called Pazopanib and it is in pill form. It will take time to get insurance approval since the estimated cost is $10,000 per month.
They will do scans again in 6-8 weeks. At that point, he will either continue the new chemo drug or jump to something more toxic. The fear of jumping to another harsh chemo is that if it doesn’t work, it could destroy the rest of his bone marrow, taking most of the other options with it. This could be next in line or another clinical trial. Unfortunately the current clinical trials for osteosarcoma are mostly at stage 1, so they don’t have enough data to know if you are going down the right track or wasting time.
He has a wonderful doctor and nurses at the sarcoma center and they are also sad with the latest news. We spent over an hour together today as we talked about the latest tests results and what possible steps ahead.
Matthew 19:26 New King James Version (NKJV)
But Jesus looked at them and said to them, “With men this is impossible, but with God all things are possible.”
We are finally home from MD Anderson. Robbie is on an antibiotic. He continues to feel terrible. He shakes from chills, fever, cough, rash…. They feel most are side effects of the drugs plus he has a sinus infection. Makes us nervous to see him so sick. All his regular nurses were worried about him and busy giving him blankets, checking on him, and making sure that we were okay to leave.
We need to continue to monitor his fever and symptoms and if he gets worse, bring him back to the ER. They can put him in the hospital and give him IV steroids, but it would reduce the effectiveness of his treatment, so they hope he will get better on his own along with the antibiotics.
Pray that he can calm down from his day and rest. He is very uncomfortable and restless. Pray also for healing and for his side effects to go away.
Robbie starts the clinic trial with immunotherapy on Monday. We will meet with his main doctor again Monday morning and then Robbie will be hooked up to one drug at a time. There are two different drugs. They shouldn’t cause hair loss like the other drugs, instead there is a whole list of different side effects. Praying the side effects are minimal.
We haven’t gotten the heart test results yet, but chemo dates have been put into Robbie’s medical calendar through July, so I’m guessing what ever concerns they had ended up not being significant enough to knock him out of the study.
Thank you so much to everyone that has sent a card! He loves getting mail and you have really helped him! It is a very rough road right now. The clinic trials are being done, knowing the statistics so far aren’t favorable, but it is the best option they have right now. We will even cheer if it halts the growth of new tumors.
In this picture the nurse practitioner is pointing to the area of his lung that has fluid. They will watch his lung and said it is not unusual after lung surgery.
First the Good news... Robbie is cleared to travel next week to Costa Rica with few limitations. This is something we worried we wouldn’t be able to pull off and we are very grateful to everyone that helped with his Bucket List.
The lung doctor was able to get clear margins around the tumors he removed…meaning he removed all the cancer in the lung that he found. All great news! His doctor also told Robbie that he thinks of him every time he sees or hears about sloths. So sweet!
Bad news: Unlike his leg tumor that was 98% necrosis (dead), his left lung tumors were only 5% necrosis or 95% viability (living).
What I interpret from this report (which is like reading Greek) is the chemo had limited impact on the cancer. They are holding off surgery on the right lung for now. The dr said it is because the tumors are smaller and he doesn’t want to miss any when he does surgery.
We will see Dr Ratan after the trip. He will do additional testing and he is great at explaining everything. As my friend would say…”Just keep swimming”…