Update on Asterix

[Asterix]

Well, it's amazing what a few weeks can do. I was talking to the prinicipal investigator about the immunotherapy trial in Melbourne, and then my back pain flared acutely out of control. Scans showed some spine mets, but nothing going crazy. Previous lymph node mets still present, and a few small lung and liver mets. I've had some acute back pain attacks over the last few months, requiring trips to emergency and pain control with IV morphine, but they settled in one night and I would be home the next day. I had an appointment with a pain specialist to see if we could control the pain better, onc wasn't overly concerned. Then BAM! 2 weeks ago I get a really bad back pain attack, it does settle, I see my onc the next morning (Friday) who ordered a spine MRI, but am back in the ER that night. Spend the weekend in hospital with IV morphine for breakthrough control. I see my onc on Monday, says although last scan looks about the same, cancer as gone crazy and I may only have days. Stop Mekinist (well, I already had run out, it did drop my CEA 2500 to 500 though), refer to palliative care team for pain control.

Well, this was the inner city hospital that I'm about an hour away from, family visiting every day, thinking the end was nigh. Palliative care team managed to get pain under control with patches and driver syringe. Managed yesterday after 10 days in the city to transfer to a hospital only 20 mins to home a with a palliative care doc here. Managed to go home on day pass today, and appears I can go home most days with break though pain control. So no treatment still, just fentanyl syringe driver and patches, and endone or subcut morphine for breakthrough occasionally. Plan at the moment is to get home with palliative care support, maybe without the syringe driver and only patches. If I can stablise the pain, then maybe we can consider further treatment. It's been a hell of a ride, but I'm glad I still here for now relatively pain free.

Justed wanted to update the board, as I know what it feels like when people stop posting. Oh, and the Monday I was given the grim news the trial doctor rung told me I was in if I wanted. But he could only hold a spot for 2 days, and now it's gone. Oh well.

[Bev G]

Paul, I am sickened with you to read this news. What an awful few weeks you've had, and so far from home on top of it. Thankful they were able to get you back close to your home and that you got a day pass. I hope your local people are simple excellent at pain management, and can get you promptly to a pain-free state. As far as the cause of that pain, i'll pray your local docs have some great idea for dealing with it.

My heart is with you, Paul.

Love,

Bev

[NWgirl]

I'm so saddened to hear this news. As I'm dealing with a lot of back pain myself right now I can completely sympathize. I hope the pain can be kept under control and that you are comfortable. Sending strong thoughts your way.

[Lee]

I agree with Bev and Belle. So sorry you are going through so much. I hope your Dr.(s) are able to keep your pain under control. That is the worst. I hope you have some good days a heads. You will be in my thoughts and prayers.

Lee

[nicoletta]

Hi Paul,
I'm so sorry for the bad news.
I really hope with all my heart you can menage your pain.
You are in my prayers.
A bug hug and kiss
Nicoletta

[Val*pal]

Thanks so much for letting us know how you are doing. I wish you the best for your pain control management.

(((hug)))

[skypup]

Thank you for checking in. I am very sorry to read about the pain -- been there, and pain changes everything. Wishing you good doctors, good meds, and some resolution.
Skypup

[Asterix]

Thanks for the thoughts everyone. I am now settled at a hospital about 20 minutes from home. I have a private room and a great palliative care doc here. Pain is well controlled with fentanyl patches and syringe driver with morphine sub-cut and and fentanyl lozenge for break through. They added methadone today to see if they can reduce the need for the syringe driver, as I would like to get rid of that if possible. I go home on day leave every day and even spent last night at home. I probably could go home now, there is a service that will come out and change the syringe driver at home. But I don't want to lose my nice bed and room here, which would happen if I went home. There would be a bed back here within a day if I needed it, but it might not be my nice air adjustable bed. I couldn't sleep in my home bed as the back pain increases lying flat, so I slept in a recliner chair, but the hospital bed is more comfortable.

I got some blood work today. My liver function is stable from about 2 weeks ago when I first went into hospital, but is worse than a few months ago when I was feeling better. My CEA, which went from 2500 at the start of treatment with Mekinist, to 500 when I had stopped Mekinist (ran out) for 7 days and went into hospital, is now 4000. This is after 2-3 weeks of no treatment so to be expected. What is interesting is when I graph my CEA, the doubling rate of the CEA reversed as soon as I started Mekinist (even though the CEA was still increasing), and of course actually went down bit later. Off treatment the doubling rate of the CEA has increased, as would be expected if the Mekinist was working in some way. So the plan now if to see the oncologist at this hospital next Monday (he actually also works with the same group as my other oncologists, so has all my information) and see what he thinks. I am keen to restart Mekinist, under supervision here at the hospital, as I felt I tolerated it reasonably well before. I felt a bit run down, but that may have just been the advanced disease. So while the cancer did spread while on the Mekinist, I think it was beginning turn the tide. I think it's worth a shot and the side effects are probably less than iriotcean, which I have never tried.

I hope everyone else is going ok. Thanks for listening.

[michelle c]

Thank you for the update. I'm sorry that things are not better for you. I hope that you are resting comfortably and are not in pain. What an ordeal you have been through. Sending you warm wishes from Perth. Thinking of you xx

[singingholly]

Is it immunotherapy still an open chance?

[Asterix]

Not that trial. It was in another city 2000 km away.

[singingholly]

Hang in. Folfiri can be very very effective.
Olivia

[Asterix]

Well, found out something interesting yesterday. My CEA of 500 odd when I stopped Mekinist was actually 5000, so it started at 2500 when starting Mekinist, went up to 5000 after 2 months of Mekinist. Not good eh? BUTT when tested a few days ago, which was 3 weeks after stopping Mekinist it was 4000. IT WENT DOWN after stopping Mekinist. So even though it was still going up initially on Mekinist, the rate of increase must have be slowing for it to turn around and then decrease. And it's durable, it didn't just turn around again off treatment. This to me is better news (and makes more clinial sense) than the dramatic drop to 500 and dramatic rise to 4000 in such a short time. So I see the local oncologist here on Monday about this. And my palliative care doc feels this is good news. My previous onc was also talking about a common drug that can be added to Mekinist to enhance it's effect, we were going on this path until the latest adventure landed me in hospital.

Now I did have radiotherapy on some spine mets about 1 month after starting Mekinist (back in August), so that may have had an effect on the CEA, but I don't think it explains the whole effect seen here.

Anyway, we'll see what happens.

[stu]

Hi Asterix,

That does sound better news and I hope they can firm up a new plan for you. I have been thinking about you and glad you posted your update
Regards
Stu

[Asterix]

Ok, saw the new oncologist yesterday and he says I should definitely be on treatment if I want to. He is going to review my scans and bloodwork in detail, but feels I should go on irinotecan and 5-FU since I have not had irinotecan before. He is suggesting 4, 1 hour long, weekly infusions followed by 2 weeks off. He sounds confident that I have months rather than weeks, and even more should the treatment work well. Pain is stable, still using fentanyl patches and syringe driver with morphine subcut for breakthrough pain as needed. I come home most days but still spend nights at the hospital, mainly to make life easier for my wife and some peace of mind if the pain gets out of control (which it hasn't). So things are looking quite a bit better than 2 weeks ago. If I tolerate treatment well I might look at coming home full time, but I do have a 7 and 11 year old to consider. I'm sure if I want them seeing my really sick all the time. CEA is still stable off treatment, so I guess that is also a good thing.