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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.
Hello again,
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 & Tom
Thank you both – Gavin and Marion!
We are positive and hopeful but don’t want to get our hopes up too much. His counts aren’t necessarily high enough to restart the trial but if by some miracle they are tomorrow then Tom will restart and I think we will both release a deep sigh of relief. The last week has been so stressful. We are ready for some good news!
We really appreciate all the support – as always! This is such a fantastic community of friends with so much knowledge amongst us, I love it!
Eager to hear how things are going for Kris too, so follow-up when you can! My fingers are crossed that this drug works for you too. It’s a lot of taking the pills and waiting, I know. Makes you feel like you don’t have much of an update!
Take care everyone and I will update this weekend.
Ash
Hi Kris,
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.
hugs,
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 Tom
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.
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.
Love,
Ash & Tom.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.
-Ashley
Hello!
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.
-Ashley
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!
This is so inspiring to hear of these milestones. I hope to have one to share for Tom soon! I tell him almost daily about all of you who are in the midst of surviving and those with NED. it makes both of us so happy. nip this deadly sucker in the bud!
Congratulations on Keytruda working for your mom – I think that is amazing. I really hope they approve this drug ASAP for people with different cancers and that it’s not $10k/month. We have a little ways to go in getting drug companies and insurance companies to cooperate with one another. Everyone’s survival seems to depend on that. Again, though, I’m happy to hear this drug is working so well for your mom, Colleen.
Thank you both, Gavin and Catherine!
I was hoping for a sticky and will be sure to update as often as possible.For Julie, Porter, Marion, Catherine and Melinda –
I appreciate all your well wishes and I’m sorry I didn’t see these posts sooner! It’s been a crazy hectic couple of weeks, but Julie, you are totally right: we are doing something now instead of waiting/feeling useless and even instead of constantly researching. We’ve handed the reigns over to God, to fate, to the potential of this drug to become FDA approved and to work for many people with ICC!It was a very personal decision to go with a trial first instead of chemotherapy, but the fact that they accepted Tom (and within a day’s time!) makes me believe that they believe the drug will work and that it was the right decision.
We continue to be amazed and encouraged by this site, by the doctors and nurses at Emory and all the survivors out there as well as the trial participants (none of whom we have met).
Porter, that is so wonderful that you are NED! Like I said in another post, I sincerely think the BGJ-398 is similar in chemical makeup to the ARQ-087 – just 2 different drug companies (Bayer [or is it Novartis?] vs. Arqule). If it’s actually all 3 drug companies, you know they are on to something good.
Same side effects for both drugs (from what I’ve read on here and on Tom’s consent form) and the big worry, of course, is kidney function, but they almost take better care of you and see you more often whilst on a trial because they want to make sure the drug is not doing any harm. I am surprised that they wait 5 weeks before doing the follow up CT scan to see where the disease is. I wish we could know exactly when the drug starts to work! It’s a little risky but at this point we are okay with the risk. Whether you choose the trial sponsored by Bayer, Arqule or Novartis, I think they are all 3 comparable due to the targeting of a mutated gene.
I’ve created a post under Clinical Trials and will keep it up to date, I promise.
Hugs and love to you all!
Great News! I’ve been so busy that I haven’t had a chance to post the outcome of Tom’s screening for this clinical trial, but he has been accepted and we are over the moon happy!
Tom has to go to ATL every Friday for 5 weeks straight and then the visits will level off from there if all goes well. He starts this Friday and we are way too pumped about a long car ride to and from in one day. Haha.
I think this will be such a good experience and something so radical and different from standard line treatment! He starts at 300mg daily. Will be very interesting to see how things go and if the drug helps shrink his tumors. Still waiting on results from the scan he had last week – it’ll be good to see just what we’re dealing with this late in the game without any treatment thus far.
Regardless, the staff at Emory have been wonderful to us and I think they are just as excited as we are – basically they were clamoring for Tom to be in this trial because I don’t know if they had enough volunteers to warrant it effective. I think they said there were 20 participants overall.
I should probably start posting in the clinical trials section now so I can get some input on side effects with this type of drug and see how everyone involved in trials is fairing.
Here is to possible longer life extension!
It hits me sometimes that my husband of only two years may not be around very long, but I’m trying to think positively and all the stories on this site have been so inspirational to both Tom and I. I’m kind of the go-between because he has a very demanding full-time job and I’ve assigned all research and work to myself so he can relax and rest during his down time and so he can enjoy the things he likes the best.
Either way, he’s in great spirits and we are counting the days until Friday!
Thank you to everyone who has responded to my initial post and look forward to speaking with all again soon!
Ashley
