July 1, 2016 at 3:14 am #91462June 24, 2016 at 4:13 am #91461
ArQule (ARQL) Announces Presentation of ARQ 087 Phase 1/2 Data at ESMO CongressJune 24, 2016 at 4:12 am #91460
Kris…..shrinkage sounds great. Lesion may have been there, but due to 1 cm CT thickness of plate, it was undetectable until now. Wonder what the acities is all about, but we have seen this come and go with other patients as well. Have you left the hospital or are they holding you hostage for a bit longer yet?
MarionJune 23, 2016 at 10:10 pm #91459
I got the results from my first official trial ct scan and the results are really good! All areas have shrunk. Of course we are measuring in millimeters, but I’ll take it! One of them was 2.1×1.6 now 1.6×1.3. So pretty substantial shrinkage.
Also on the report are two new items. I now have ascitis. And there’s an undetermined lesion on my spine.June 22, 2016 at 2:11 am #91458
Kris….I like your unofficial results. Perhaps the measurements will reveal partial response – 30% decrease in the sum of the longest diameter of targeted lesions. That’s what I am hoping for.
If not so, then stable disease – small changes that do not equal a decrease of 30%.
In any case, I believe you would stay on the trial.
On another note: In your honor,I have given up cheese and pizza. No regrets on my end.
MarionJune 21, 2016 at 3:33 pm #91457
I had my first “official” ct scan yesterday. I get the results Thursday. I DO know that unofficially, one of the areas in the crowd of stuff is smaller. I also know the lesion on the right of my liver, remote from everything, is unchanged. Of course, this is from a scan while I was in the hospital, and nothing was measured.
So I wait until Thursday to find out the official news.
My phosphates have been out of whack. Not sure why. But I’m on a low phosphate diet. Anyone who knows me knows how hard this is… I LOVE my cheese and pizza!!June 17, 2016 at 7:42 pm #91456mbachiniModerator
You will rock this trial!!!!
MelindaJune 17, 2016 at 7:40 pm #91455mbachiniModerator
Dear Tom and Ash,
Sending good thoughts, lots of prayers and big hugs that all goes well with the surgery and that the chemo will shrink tumors drastically! I am so glad you were able to speak with Dr. Javle, and have set forth another plan. One day at a time. Thinking of you.
MelindaJune 17, 2016 at 3:20 pm #91454
I’m sorry about his bone lesion. Hope the rod is successful and comfortable. Good luck with the gem/Cis regiment.
I have my first trial ct scan on Monday. Then I have to wait until Thursday for the results. I do know from the last hospital stay that one area shows shrinkage. I also know that the lesion on the right bottom of my liver looks exactly the same. The doc in the hospital let me see the ct scans.
I sure hope I beat the average of 6.5 months. The last trial I blew the average out of the water! I believe the average for that trial was a year, and I did 2.5!June 14, 2016 at 3:37 pm #91453jacdollMember
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.
–AshJune 14, 2016 at 2:30 am #91452
Kris….this is overall general data and doesn’t account for the individuals in the top tier. Based on your history, we expect you to break the barriers.
MarionJune 14, 2016 at 1:59 am #91451
I’m sorry tom is off the trial. I hope the onc and Dr. Javli can come up with a great new game plan.
6.5 months? That’s all? So I have 5 months to go… I’m actually planning on being one of the longer lasting patients. My last trial I had everyone by about a year.June 13, 2016 at 11:24 pm #91450
Ash and Tom…….these are tough questions, dear Ash, and one that many of have faced or will face at one point of our lives. It comes down to Quality of life,” a catch-all term none of us can define and understand. It is subjective and multidimensional, encompassing positive and negative features pertaining to this moment in our lives. It also brings focus to what can be solved with interventional treatments by not curing this cancer, but allowing for living with this disease. In other words: looking at it in terms of a chronic disease. If indeed the pain can diminished with radiation and possible surgery, then the physician’s suggestions make perfect sense. Then of course comes the question of longevity and hindsight of choices made. Will the cancer progress and the interventions were useless? Again, try to find value in diminishing the pain and the possibility of systemic treatments offering “hope” for living with and outsmarting disease progression.
Ultimately, patients are confronted with choices offering “hope” with no guarantee for success.
Tough one, dear Ash, but I know that you and Tom will work through this maze of uncertainty.
MarionJune 13, 2016 at 5:49 pm #91449jacdollMember
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.June 12, 2016 at 6:33 pm #91448
Ash and Tom…….love, hugs and a tidal wave of good thoughts are heading your way. I am in awe of you both.
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