June 12, 2016 at 3:14 pm #91447
This will be my last post underneath the sticky for the ARQ-087 topic. Tom is no longer enrolled in this study due to being off the drug for 21 days and no consistent improvement in his white blood cell counts.
Although his white blood cell count was up to 2.0 on Tuesday, it had dropped back down to 1.7 on Friday. Due to his counts being so low, the doctors decided it was time to end the trial. Since this is a study drug, they can’t be 100% sure that this isn’t a side effect presenting itself (even though no one else on the trial is experiencing this issue).
Tom’s bone marrow biopsy report is in and the only thing remarkable about his bone marrow is that there is a small cluster of cancer cells in it.
We have an appointment set up with an oncologist in Charlotte next Friday the 17th to get situated with the doctor here, have him review all clinical notes, scans, reports, etc and then to decide on next best steps.
Additionally, I reached out to Dr. Milind Javle at MD Anderson’s cancer center Friday night after returning from Atlanta and feeling helpless. He replied this morning and is willing to discuss options/alternatives with me on the phone next week. I eagerly agreed to talk whenever he is available and have sent him all Tom’s latest information (scans, labwork, clinical reports).
As everyone knows, ARQ-087 worked on Tom’s soft tissues but the cancer continued to grow in his bones. The sponsors of the trial are not sure why this would happen and did not seem to be happening with others patients that we know of in the trial. The average amount of time a patient stays in this particular trial is 6.5 months, meaning barring any toxic side effects or just dropping out the drug works and does its job for about 6.5 months before there is no response to the drug any longer. That is on average – we do know of at least one patient who has been on this drug for over a year.
So, yes, it’s disappointing that Tom doesn’t get the opportunity to continue on this study. What we have to do now is focus on the future and next steps. I’ve been researching since last night and I found 7 clinical trials that we’re going to look into with the assistance of Tom’s new oncologist. And I have a whole list of questions to ask as well I will have Dr. Javle’s advice by the time of the appointment so I’m pleased about that.
Until Friday, Tom is going to get as much rest as possible and we’re just going to focus on him feeling better all over. Then, with any luck, his counts will go back up and there will be treatment options available.
Have a happy weekend, everyone, and please keep Tom in your thoughts and prayers.
Kris, I will continue to check in and see how things are going in your study and will update somewhere else on the board when we have a plan in place!
Thank you and many hugs,
— Ash & TomJune 7, 2016 at 10:15 pm #91446marionsModerator
Ashley and Tom…..attached find link to my recent posting of our ASCO attendance:
MarionJune 7, 2016 at 2:31 pm #91445
yes, if Tom’s blood counts have improved today, then he’ll be back on the trial but on a lower dose of the ARQ-087, which is totally fine with him.
you know, I didn’t even think about the newest biopsy showing a marker that might be compatible with an immunotherapy drug. I like that thought!
Thank you, Kris, for saying that and for giving me my hope for today. You’re right – it’s so important to keep up the hope and faith that we can beat this and this will not take the best from us.
I won’t say it’s been easy but focusing on hope might be the only thing I can do, the only thing I can control right now.
hope + faith + love is just the perspective I need right now.
I’m very curious to know how the national cancer conference went this past weekend and if there are new therapies and options that might soon become available.
Ashley and Tom.
REPOST (realized I posted this in the wrong section, argh)
We have another update for everyone. There’s been a change for the better since last Thursday. Tom got his bloodwork done this week and his white blood cell count has raised to 2.0, his red blood cell count is up to 2.97 and his platelets are 115. This is superb compared to what it was last week.
Due to this change, we are traveling to Atlanta tomorrow so Tom can be poked and prodded yet again to see if his counts are stable or if they have increased even since just Tuesday. He will be fully re-evaluated to see if he is eligible to re-enter the clinical trial. If so, it might be at a lower dosage, it might not, but we’ll be back to our every other week trip to Atlanta and the drug will start working again to squash the cancer in his soft tissues. The bones and bone marrow are still of concern but we won’t know anything until the biopsy results are back. Hopefully with a nudge, we can at least get the doctor to speak with the pathologist to see how things look. Since Tom’s counts went up dramatically this week, I (who am not a dr but certainly feel like I have the knowledge!) think the radiation messed with his counts as well as weakened Tom’s body severely.
We’ll let everyone know how things went as soon as we can.
A huge thanks to everyone for your support during this time. Please continue to keep us in your thoughts or in your prayers (if you’re so inclined). We need all the help we can get but I have to say that we’re both feeling a lot more hopeful today than one week ago when it felt like things were quite dire. We’re back in line to take another ride on this rollercoaster!
Thank you Marion for the link. I was definitely eager to see what you had learned (and I figured you’d be there!) but hadn’t had time to look for the info on the boards this week. Looks like there was a fantastic turnout from the mods here and I think that is so important. Cancer research is getting there, isn’t it? I just hope it’s in time to save each and every patient who needs an alternative treatment to the standard. Thank you, M, for all that you do.
Ash and TomJune 7, 2016 at 2:20 am #91444
Ashley, many mutations cross cancer lines, especially in the gastric area. And cc is basically colon cancers brother or sister. They are very close, according to my surgeon they are more closely related than cc and liver cancers. In my original biopsies, I had a breast cancer mutation. Unfortunately, that is not the case anymore.
I hope Tom improves enough to get back on the trial. Have you discussed lowering the dosage? My onc says it’s a possibility if this stupid stuff keeps up. I hope the biopsy shows a mutation compatible with Keytruda or Obtivo so Tom can get on that if he has to leave the trial.
Try to stay positive. It works!June 3, 2016 at 7:05 pm #91443
Thank you, Darla, I really appreciate that. I’ve read so many stories on this site and it seems many people experience this complete rollercoaster after a cancer diagnosis and throughout all the treatment. It feels like, if it’s not one thing, it’s something else; and that is quite unfair to everyone who has gone through/is going through this. it can really be maddening. Tom did quite well for awhile until radiation. it was harder on him than we anticipated. then again, he had his entire torso front and back radiated. it took a lot out of him!
does anyone have any knowledge or experience with the MSI / MSS stuff? I’ve been trying to research it but I’m getting a lot of hits about colon cancer, which, obviously, Tom doesn’t have. that just came up yesterday at Emory with the doctor and it seemed really foreign to us as it had not been discussed before with us, at least. I’m assuming it’s just as I said, part of a genetic makeup that makes you a candidate for immunotherapy to work and possibly work really welll – or it doesn’t, per your genes. I’d love to hear from anyone who has any knowledge on this aspect. We were in such a state of shock yesterday that I wrote it down when the doctor said it, but it didn’t quite process until after we left.June 3, 2016 at 6:25 pm #91442darlaParticipant
Thanks for the update, but sorry it isn’t a better one. Not what we wanted to hear and I’m sure not what you and Tom had in mind either. Hoping for a quick turn around so he can stay on the trial or if not that something else will be available. Will definitely be thinking of you both and hoping for the best. Let us know how things are going when you can.
DarlaJune 3, 2016 at 3:57 pm #91441
Hello again, Happy Friday to everyone.
We wanted to send out a quick update to let everyone know that the clinical trial is on hold for Tom, possibly terminated, but we will know for sure next week. Tom and I traveled to Atlanta yesterday and he had his usual bloodwork done and his white blood cells, red blood cells and platelets are too low to take the study drug.
Tom is also anemic and the doctors want him to get healthy again before refocusing on treating the cancer. He will get bloodwork checked next week locally and that will tell us if it has gotten better enough to restart the trial, but if it has not, then he is out of the trial. They have a protocol that anyone on the trial who has to stop the drug – for any reason – must only stop the drug for 21 days. Tom has been off the study drug for 15 days. There is a small potential that he might restart it next week, but at this time, that isn’t looking to be the case due to the low levels in his blood and how high they have to come up in order to restart the drug.
As everyone knows, the drug worked on the soft tissues in Tom’s body, reducing the cancer. But it didn’t work on the bones. He has multiple bone lesions that are still giving him trouble so yesterday he got xrays, a bone marrow biopsy and an injection of XGeva to help strengthen his bones.
Right now we are focused on keeping Tom comfortable and making sure he gets enough rest and good nutrition. We are awaiting the results of the biopsy which could take 1-2 weeks and which should tell us how to treat whatever is going on in his bones and blood. There is a chance it’s a second cancer, there is a chance it is aplastic anemia, there is a chance it’s something else. The doctors can’t treat what they don’t know, unfortunately.
We have been referred to an oncologist in Charlotte that we will hopefully see within the next two weeks who can instruct us further on our next course of action. There is a potential to have Tom hospitalized and to start/finish chemotherapy during the course of one week, but right now his health is too fragile for that. It could kill the cancer but it’s too harsh and dangerous for him to undergo at this time and would be a risk to his life. Our goal is to watch and wait and see what this new oncologist can offer as treatment + how to treat the low levels of his blood per the biopsy results. We did also find out that the genetic makeup Tom has is something called “MSS” and IF immunotherapy (ie Keytruda) were to be a treatment option, his genetic makeup would need to be “MSI.” That is pretty disappointing because I really thought immunotherapy would be the wave of the future for cancer treatment. I didn’t know that you needed to match certain genetic markers.
This is definitely a setback for now so please keep us in your thoughts. We are really hopeful that things will turn around and/or there are treatment options available to Tom that won’t be too risky to undergo.
Ash & Tom.May 22, 2016 at 5:23 pm #91440
What great news about Tom! Although I’m sorry about the bone lesion. I guess is was lucky with radiation… I just had a little nausea and tiredness, but it was manageable.
I’ve had a tough time since starting the drug, but I don’t believe any of it has to do with the trial. I had a blood infection and then horrible reactions to the antibiotics. 10 days total in the hospital, but I went to the one affiliated with my new oncs office so I could continue the trial while in the hospital. Finding approved drugs was unbelievably difficult.
So far, since I finished the antibiotics, I’m not having any bad effects. Of course, I’m only on week 4. I had a cat scan while in the hospital, and I believe I have another one in 4 weeks. I’m nervous, as only one of the 3 new areas was biopsied so I don’t know if all of them have this mutation. I sure hope so!
As far as the 300 mg daily… My onc said they have the option of lowering the dose if needed. Maybe you need to do that for a few weeks so he can build his levels back up? It should be an option, at least. And, yes, chemo drugs in our system continue to work for a while. So although I understand his concerns I hope he doesn’t worry too much.
KrisMay 22, 2016 at 10:50 am #91439middlesister1Moderator
Wonderful to hear the great scan results.
Best wishes to both of you,
CatherineMay 21, 2016 at 7:10 pm #91438iowagirlMember
Ashley Thank you for sharing the info on Tom’s response to the trial. It’s encouraging for al of us to hear that Tom is doing well. I’m sure he’d rather not have any bad effects from any of it, but if they are manageable, it seems to me to be worth it to stay here longer on this earth, as you say. Please keep sharing.
Julie T.May 21, 2016 at 5:57 pm #91437
Hi Kris, Welcome to the trial!
Tom and I have some very promising news to share and I really hope with time you will as well!
Tom had his 2nd set of scans (every 6 weeks) on May 6th and we discussed the results yesterday with the doctors at Emory (though I had peeked at the scans on the online portal and kind of knew what to expect).
The most exciting thing is that his liver lesions are DECREASING!!! This is a first for him during his time on the trial so we’re really excited about that. This means if you don’t see results immediately in your first scans, do not get discouraged!
The lymph nodes in his chest that had shrunk as of last scans are still small and stable.
The only thing that is new is a bone lesion on T5. Approval has been given yet again to get this bone radiated. It should be an easy radiation go-round because the spot is tiny and only in one place. He’s dreading radiation because of how fatigued it made him, but the side effects should be lesser since it’s such a small spot. It’s not causing any pain, but getting the radiation is to prevent any cancer cells from leaking into the spinal cord should the bone weaken more and fracture.
My understanding is that ARQ-087 treats the soft tissue lesions but bone lesions are more difficult to control so this is something that will be carefully monitored in Tom’s case.
Tom went through 2 weeks of radiation for 3 bone lesions on his back, lower hip bone and one rib in the back and that treatment was successful. Yucky side effects but nothing he can’t tolerate. The biggest one is that he’s exhausted a lot of the time. (He’s sleeping right now, in fact). But he needs his rest and sleeping allows the body to heal.
So Tom is still in the Arqule trial at Emory, BUT yesterday when we went for the routine lab work and to get more of the study drug, his white blood cell count was too low to continue the drug for at least 7-14 days. We are going to get his blood counts checked next week here in Charlotte and if they are back up, then we will travel again to Atlanta and he’ll start taking the 3 capsules every day again. If they are not back up, we will go to Atlanta in 2 weeks and by then they should be good to go and Tom can restart the drug.
He is pretty bummed about it, I must say, but I’ve tried to explain to him that it’s more detrimental for him to take the drug with a white blood cell count so low than it is to be off the drug for 7-14 days. Plus, drugs stay in our systems longer than when we are just taking them, right? I think it’s very natural (and I’ve read as much on this forum) for someone to fear the cancer will start to grow out of control if they are not taking the meds for a few days or weeks. I would be scared too.
So over the next week or so, Tom will be getting lots of sleep, eating nutritious meals and taking antioxidants – all things that should help his white blood cell count go back up.
The low white blood cell count is believed to be a side effect of the radiation, which he finished on May 2nd, and NOT a side effect of the study drug. One thing that can happen on this drug is that your platelets can get too low. Last time his were checked, they were in the 60s but this time they were back up in the 80s. So blood work seems to fluctuate on this drug a lot – something to keep in mind and something not to be discouraged by at all.
I’m so glad we can all share our experiences and in time I know the right drugs will be approved and this cancer will become manageable. We really took a risk by starting this study but I’m glad we did because it’s working.
Also, within the next few weeks, Tom has been approved by the Arqule sponsors to receive Xgeva/Denosumab injections to maintain bone strength and to prevent fractures.
All in all, this is great news and very inspiring that cancer research is making this type of progress. I won’t say this has been easy for us but I don’t mind that. Traveling to Atlanta all the time and getting poked and prodded is nothing as long as Tom is here on this earth because he is a kind human being who deserves a second chance, just like all of you.
Good luck to you, Kris, and definitely keep us posted! I know you’ll have good success with this drug – it’s been a godsend for a lot of people.
-AshleyMay 2, 2016 at 11:30 pm #91436mbachiniModerator
Go Kris Go!!
Cheering for you, and keeping you in my prayers!
MelindaApril 29, 2016 at 4:24 pm #91435
I started this trial yesterday. 3 pills every day, so another no infusion trial! I can get used to this! I just hope it works as well as the docs hope.
My bili is down to 1.4 so it’s getting better since the stent placement earlier this month.
Strange things I can’t have tho… I’ve been on omeprazole for 5 years because of the infusion pump. I can’t take it. I’m trying to switch to some other “–azole” drug. And no melatonin, so I can’t take the natural sleep aid. Of course I just stocked up on both of them for the next few months. Ugh! And I have to pay attention to oxycodone. It might have extra effects on me. All drugs I’ve taken for so long!
Also, no caffeine, brussel sprouts, cauliflower, cumin, grapefruit juice, and BROCCOLI! I LOVE broccoli! And it’s so good for you! I wish I had known… I would have had it for dinner on wed.
But if this trial works as well as we hope, it’s a small price to pay. And after a couple of months I might be able to have broccoli in small quantities.April 15, 2016 at 10:27 pm #91434
Hi Ashley. I’m trying to get into this trial, too, so hopefully there will be 2 of us posting about it. Unfortunately my bilirubin is too high this week. I’m hoping it drops more now that the stent has been in place for 10 days.
I’ll be getting new blood work Thursday and am hoping things are better by then.March 29, 2016 at 5:29 am #91433marionsModerator
Ashley…..you made some good choices and the results are awesome. Many others had radiation for bone metastases and reported back with great results. No reason to believe that Tom won’t be equally as fortunate. Given the fact that other treatment options continue to evolve, I am convinced that CCF can be considered a “chronic” disease. Wishing for continued success and please continue to keep us informed. We are in this together.
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