March 28, 2016 at 3:11 pm #91432
It’s been quite awhile since I posted and I apologize for that. we only got Tom’s first CT scans after baseline reviewed with the doctor on Wednesday of last week and since then there has been a flurry of activity with a family visit and Easter.
Okay. So the trial with ARQ 087 is still going well! We think this is positive news so I wanted to share (I promise I will share regardless because I know how important updates on this cancer are).
The disease in his liver is STABLE!
The disease in his lymph nodes is DECREASED (they do a side by side comparison of lesions from baseline CT scan and CT scan 6 weeks into the treatment).
The disease has spread from one bony lesion to now he has 3 bony lesions.
So overall it’s positive and we have options for the bone lesions, including radiation for just those spots (one lower left hip, one back rib, another in the back). We will be consulting with a radiation doctor soon to see if we can coordinate with someone in Charlotte as we are now only going to Atlanta (Emory Uni Hospital/Cancer Institute) every other week rather than every week.
In some patients on this same trial, there is a DRAMATIC decrease of disease and I have to admit I was really hoping that would be the case with Tom. However, he has another cycle of the drug to get through and more scans in May. We have high hopes and we were told that if this drug stops working then there are other options open to us now that we have gone through one trial.
As far as side effects – Tom’s hair is definitely thinning but it’s not falling out. And that is such a cosmetic side effect that it’s really not worrisome. Platelet levels were low last time we went and the dr. at Emory had to get permission from Arqule to let Tom stay on the drug (same thing per the bony lesions). They consented. Otherwise, the side effects of this drug are minimal to be honest. All his lab work looks good too. If it helps or if anyone would like, I can post actual numbers + lesion measurements at start and now. Just let me know! (reading up on other clinical trials and I see some members posting more specific information which is helpful to me so I thought I would ask).
I just want to say that we are incredibly grateful for another day as well as for modern medicine and we were told that the field is totally dynamic, meaning there are new options popping up all the time. This is a win not just for the community but for cancer overall.
In fact, they opened this particular trial up to other types of cancer now too, which we found really interesting. I have high hopes that maybe during this second cycle, the lesions will start to shrink as he can definitely feel something going on in his abdomen area and the doctors have confirmed stable disease.
This is really exciting for us and I’ve been meaning to share this news since last week.
Thank you everyone for your continued support.
-AshleyFebruary 18, 2016 at 8:41 am #91431lainyParticipant
Dear Ashley. this is such great news. Keep it coming! Trust yourself, the rest will follow! When first diagnosed one will start out walking slowly and before you know it you will be running with the pack! YEA!February 18, 2016 at 6:24 am #91430marionsModerator
I am excited for Tom and you. Keep the good news coming.
MarionFebruary 18, 2016 at 6:16 am #91429mbachiniModerator
That is so wonderful that Tom is in less pain and is able to be more active! Looking forward to updates after his scans…..sending prayers for great results! Hugs to you both!
MelindaFebruary 17, 2016 at 3:14 pm #91428
hello everyone, happy national cholangiocarcinoma awareness day and month!
Tom is still on the 300mg ARQ087 study drug and has been tolerating it very well. Only some slight nausea and vomiting but that seems to be decreasing really after one incident.
We go this Friday for Tom’s regular weekly check-in and then he will be getting scans Feb. 26th and we can’t wait!
His pain has lessened to some degree and per last week’s visit, his liver enzymes are NORMAL after just two weeks on the drug. Overall he is feeling pretty decent and I am over the moon happy. I don’t want to get too excited before we know anything for sure but it’s hard not to. One day my husband was limping due to anterior hip pain that radiated down his femur. But right now, since last week, he is not limping and has been more active.
Needless to say we are really looking forward to the scan results at the end of February! It would be such a blessing and a miracle if his tumors are shrinking.
Will post again once we know the status of the disease as I know some folks are interested in this drug trial and how it’s affecting patients.
Thank you to everyone as always!February 4, 2016 at 9:55 pm #91427gavinModerator
Looking forward to hearing how everything goes Ashley.
Now you are stuck with us all!!!
GavinFebruary 4, 2016 at 2:30 am #91426
Thank you both, Gavin and Catherine!
I was hoping for a sticky and will be sure to update as often as possible.February 3, 2016 at 11:55 pm #91425middlesister1Moderator
Thank you for sharing the information. There are so many who benefit from this information even if they never join in the discussion. When Mom was in chemo, it was heartbreaking to see young people getting treatments.
I hope to hear that Tom is one of our future success stories- best wishes to you both-
CatherineFebruary 3, 2016 at 7:23 pm #91424gavinModerator
Just to let you know that I have stuck this post now to this board specifically seeing as Tom is on this trial. Reason being is that is makes it easier for everyone to see all the postings about trials that either they or their loved ones are actually on. Sometimes it is too easy for postings to get lost in the traffic as it were with everything! Hope sticking this one is okay with you.
Please let us know how things go for Tom on the trial and know as well that I am keeping things crossed for him.
My best to you both,
GavinFebruary 3, 2016 at 5:56 pm #12154
I thought I would start a topic about this clinical trial that my husband is participating in – just so we can compare and contrast and if anyone else is in this trial, we would love to hear from you.
Here is the link to my original post
Here is the link to the trial itself
My husband, Tom, is participating thru Emory University Hospital / Winship Cancer Institute in Atlanta.
He is only on week 1 /cycle 1 300mg of ARQ-087 with no side effects thus far.
His bloodwork looks good but his CT scans pre-trial scared us a bit last week. As mentioned, innumerable lesions on his liver, enlarged lymph nodes through his stomach lining area and lower back, enlarged lymph node in his chest and a bone lesion on his lower left hip bone. That one is causing the most trouble as it is shooting pain down his femur. The biggest issue so far with this cancer has been Tom’s amount of pain. It hurts so much to see him in pain and I’m making him take his morphine as often as he needs to (you know how men can be …. they want to tough it out but by doing so, it just makes the pain harder to control).
Anyway, will continue to update all on this trial just because it’s so new to us and always interesting to hear what’s going on. I think, honestly, that this investigational drug by Arqule is in direct competition with the drug by Bayer and/or Novartis in the trial at MD Anderson. Seems like they are targeting the same genes and are probably competing to see who can get FDA approved first!
Either way, I think these drugs are totally the wave of the future and I am so encouraged by those who are having success.
Something that we learned last week just about broke my heart; the youngest person on the ARQ-087 trial in ATL is 19 years old. How does that even happen? It really, truly shows that cancer has no face, no age, no race, no gender, etc. My thoughts are with that family as well as I cannot imagine being 19 and having one of the more rare cancers (but seemingly becoming more and more prevalent in the US).
Thanks all and will continue to update as time allows!
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