ARQ-087 Clinical Trial : FGFR2 Tyrosine Kinase Inhibitor

Thank you again, Marion! Your support helps me so much. You are very wise and so eloquent in your description of the situation. It really brings me to the here and now and how we need to focus on today, just today, and take each day one at a time and do the best things we can by making the right decisions that we believe in. These have been really trying times but I’m starting to see the light and I’m not giving up hope – EVER.

And, Kris, the 6.5 is only average. After everything, I’m sure you will stay on it longer barring any side effects that are bothersome or toxic. You’ve been through a lot and there is still so much ahead of you. Bless your strength.

Well, it turns out that Tom needs surgery ASAP to insert a rod through his hip down his left leg to give him support because the bone lesion he has on his left hip is like a circle – one half is strong but the other half is fraying – literally hanging by a string. And so he could break his leg simply by walking! They should be scheduling him today for a possible Thursday surgery. Post surgery recovery, he needs to restart radiation to his hips and legs and he needs to start chemo.

Yep, we are biting the bullet and taking Dr. Javle’s advice. He suggested the standard of care gem/cis chemo for a bit to shrink everything. He also said that because of Tom’s BRCA2 gene, he should respond doubly well to the platinum therapy. Additionally, there is a drug that matches up to that gene that is already FDA approved but not for cholangiocarcinoma. Our new oncologist would have to get approval from our insurance company and possibly the FDA to prescribe it, but post-chemo it should keep the cancer at bay for awhile.

I am so grateful for all the support here and for my conversation with Dr. Javle yesterday. I finally feel as though things are moving in the right direction and that we have a clear path. I am ready to hit that path running! So obviously I’m hoping things will go smoothly with surgery and then we can start eradicating the cancer the best we can.

I feel like a weight has been lifted now that we know exactly what we have to do. And it makes sense to me now why chemo might have been best to try first rather than the trial. Neither of us regrets doing the trial, but we are at a place now where the bone lesions are everywhere so I feel like we should have stopped the trial sooner and gone to chemo. But I’m not wasting time on what we could have done; I’m looking forward to what we will be doing.

And I’m looking so forward once treatment is started and is starting to work so that I can see Tom relax, knowing things are being taken care of, and so I can hear his beautiful laugh again. Things have been stressful and we haven’t laughed much. Definitely looking forward to that part.

–Ash

thank you very much, Marion. I’ll certainly be back to discuss anything of relevance once I talk to Dr. Javle this afternoon. Tom is at his radiation oncology check in appointment and that has turned into something major. He has bone lesions on each hip, causing his gait to be uneven and causing pain when he walks. They are talking about more radiation for the hips and for the one spot on his back and then possibly surgery to put a rod in his left leg where he’s having trouble walking. ARGH! I’m sorry for language, but damn this cancer!!!! it has taken over our whole lives enough and now we’re at a place where they are telling Tom to eat red meat for his low hemoglobin levels, telling him more radiation is coming and possibly surgery too. my question in all of this is where does treating the cancer itself lie as far as priority?

I would love to hear from anyone who has had to go between radiation then treating the cancer or doing both at the same time and how you priortized everything! I know Tom’s doctor will help us with this, but just wow. Not what either of us expected today for this appointment.

My concern is that the cancer will overrun his body before he can heal from surgery and get ready to fight back with whatever method we decide on! It’s just so hard to know how fast the cancer is spreading but it’s clearly spreading very fast in his bones at least. So that has me pretty worried.

Thank you everyone and hope to hear some of your similar stories.