CA19-9 cut in HALF!

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CA19-9 cut in HALF!

by DavesGirl70 on Thu Dec 06, 2018 04:14 PM

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My partner has stage 4 PDAC - a 3cm mass on the tail of the pancreas - with numerous liver mets. Diagnosis confirmed Oct 10 after liver biopsy. Primary symptom leading up to diagnosis was right upper quadrant pain that initially was intermittent and reduced with OTC pain meds, but became persistent and severe. The mets on the liver are/were numerous and invading the capsule, which the oncologist said was likely the source of pain. We tried to get into a clinical trial with molecular profiling, but after the preliminary testing revealed PE and aggressive progression we had to forgo the clinical trial and get on folfirinox right away. Right after the first round he experienced marked improvement in liver function and was able to cut his pain meds in half (I'm hoping that this is because the liver mets invading the liver capsule have shrunk)! We received results of CA19-9 today - baseline was 360,000 and after first chemo session has been cut in half to 120,000. Not sure of the units they're using though as these numbers seem extremely high for what I've read. I'm just so thrilled to have more good news and had to share. I know there are no guarantees and no predictability with this beast, but I am cautiously optimistic. The next scan will be in January. There is a family history of breast cancer and autoimmune disorders which I have read may be related to actionable genetic mutations in pan can (particularly with platinum sensitivity), so I am hoping that perhaps this may explain such a dramatic response to folfirinox. We are already lining up second line options depending on how things go, "many irons in the fire" as PhilipJax would say.

Thankful for this community of support <3 

RE: CA19-9 cut in HALF!

by Baloo on Sat Dec 08, 2018 03:07 PM

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Sounds like the cancer is indeed responding to the folfirinox. It killed off my 2 metastases but not the main tumor. The cancer stopped responding to the folfirinox after 23 rounds, and it's metastasized again, but I got 2 years extra time out of it.

Hopefully the folfirinox will kill off all those liver metastases and maybe even the main tumor.

RE: CA19-9 cut in HALF!

by DavesGirl70 on Sun Dec 09, 2018 02:05 AM

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On Dec 08, 2018 3:07 PM Baloo wrote:

Sounds like the cancer is indeed responding to the folfirinox. It killed off my 2 metastases but not the main tumor. The cancer stopped responding to the folfirinox after 23 rounds, and it's metastasized again, but I got 2 years extra time out of it.

Hopefully the folfirinox will kill off all those liver metastases and maybe even the main tumor.

Thank you so much Baloo, I have seen your posts and read your story and I am so hopeful that, like you, Dave gets at least a couple more good years. The preliminary results are promising, but I do know that it can stop working at any time.

I do hope that you find another creative solution. I remember you saying that you are in Ontario too. Princess Margaret seems to be starting new trials all the time, particularly immunotherapies (which I know have not been largely successful yet, but there are some that do sound promising as "plan c/d/etc" options). We are keeping this particular trial in mind as one of the next options if/when folfirinox stops working. We already have a foot in the door there.

Please do continue to post updates <3 I am thinking of you

RE: CA19-9 cut in HALF!

by Baloo on Thu Dec 13, 2018 02:31 PM

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There are two trials of interest (to me)  at PMH that do not involve more chemo, one is the nanoknife trial and the other is a stereotactic trial for solid tumors including the pancreas. If Dave is eligible, you might be able to get them done at the same time as the chemo.

My advice is to check up on these trials to see if any are worth pursuing right now.  It may not be in your best interest to wait until the folfirinox stops working. As soon as the disease is metastatic, it limits the numer of trials available to you; the other issue is that having a tumor resistant to folfirinox may limit trial eligilbility as well. It's a tough decision, because as I understand it you won't be able to go back on folfirinox after a trail, as it's currently funded by cancer care.

If Dave's tumor is responding to the folfirinox, that's good, it may even do the job on its own. But don't be afraid to lower the rate if the concentration of folfirinox isn't tolerable. It seems to be a better strategy to hit the cancer with as many folfirinoxes in a row as possible rather than using  a higher dose with holidays. I took as many holidays as I could. No way I would have tolerated those 23 folfirinoxes any other way.

I have two new lumps, they did not show up on the last ct  scan unless they are enlarged lymph nodes, which were mentioned but the location not given- another not very useful CT report- but they are bothering me - one's over the top of my stomach and the other is by the spleen and pushing up a rib.   I'm not sure exactly what they are but I can guess. :-(  The doc gave me some 4% Ketamine cream to try, it seems to have some effect, but it's not perfect. I may have to try a more concentrated cream. 

So my guts are hurting, but I have a lot more energy back, I think I'm recovering from the chemo. I prefer the pain in the belly to the chemo. At least I can function with it, for now.

RE: CA19-9 cut in HALF!

by TeamSammy on Thu Dec 13, 2018 04:44 PM

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Hello, DavesGirl-

I want to offer encouragement and hope! My Dad was diagnosed with PDAC with liver mets and just completed round 10 of 12 planned Folfirinox infusions. So far, we've scanned for progress twice: once after Round 4 and again after Round 8. Our first scan showed the mass in the pancreas had shrunk significantly and the liver spots were stable (no growth). The second scan after Round 8 was even more promising: we saw significant shrinkage to EVERYTHING - the main mass on the pancreas and the liver lesions. He is pushing on to Round 12 at which time we will scan again and decide with our Oncologist how to move forward. He is 61 and has tolerated F extremely well to everyone's relief. Although he did have issues with his platelets being low after a cumulative buildup of the F and they lowered the percentage of dosage down to 75% so he could keep going. Even after doing that, we saw those great results in the second scan. Our Oncologist lives by, "If we're winning, we aren't quitting" so I imagine we will stick to either Folfirinox or some kind of 5FU chemo for as long as it continues working or until he reaches NED status. But as you mentioned, we have also talked about backup options so we are prepared if it comes to that. Options we're considering: radiation, oral maintenance chemo, clinical trials that introduce new drugs in combo with radiation or oral chemo, etc. Please keep in touch as you and your partner continue the fight. I find that the sharing of information (especially treatments that yield promising results for people) is tremendously helpful. I will do the same. Praying for you!

RE: CA19-9 cut in HALF!

by Jcancom on Sat Jan 05, 2019 04:22 PM

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Dear All,

A metabolic approach is one treatment option to consider.

Pancreatic cancer patient series from a Turkish clinic.

https://www.youtube.com/watch?v=tL8rQ3aNvhs

Patient below started a modified version of the above metabolic protocol in August, 2018 CA 19-9 went from ~115,000 to 989 in December. Interestingly, the October reading was 2,804. So even in the latest interval there has been an ongoing large relative decline.

If patient is still responsive to chemo, then a metabolic add-on might turbo-charge its effectiveness as appears to have happened to the patient below. Using stratight chemo might result in a cancer that was resistant to further treatment. Concern about TLS would need to be discussed with your onocologist.

https://www.cancertreatmentsresearch.com/case-report-stage-i

RE: CA19-9 cut in HALF!

by DavesGirl70 on Fri Jan 11, 2019 03:34 PM

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I do super appreciate the sharing of info too!

An update on our end: Dave had to postpone his late December chemo by 1 week because his white count was too low. It bounced back on its own with the extra week and he did a round at end of December. But then this week he also had to postpone again despite lowering 5FU dose and neupogen shots his count was 1.3 - the oncologist also didn't have previous CT scans to compare to the one taken this week so I think he needed to buy some time to compare scans directly before continuing. We are waiting anxiously to see what effect it has had but the preliminary results seem promising - doesn't look like anything has grown like crazy but need to directly compare to be sure. Chemo next week will also omit the 5FU bolus (but he'll still get the bottle to take home) to see if this will help with preventing his white cell count from dropping so much. Otherwise, physically he is doing GREAT! Rarely ever needs pain meds, his appetite is back and he's gained back 7lbs after losing about 40-50, hasn't even needed to use much of the cannabis oil that we have, other bloodwork is looking great (liver function, etc.), blood clots have cleared, and he's feeling pretty well normal (other than the few days following chemo when he feels very fatigured). The doctor even remarked on the fact that his liver feels like a normal size now where previously it had been grossly enlarged due to all of the tumors (he had a couple of larger ones and numerous smaller mets). He's tolerating Folfirinox quite well - major symptom is fatigue for about a week, and a bit of cold sensitivity in the few days following chemo but it does not last, and dry skin (but thankfully no ulcers or sores - we're working on getting on top of moisturizing). No issues with numbness, vomiting and nausea have been well controlled, a bit of diarrhea but we're working on introducing enzymes to try to help with that as it persists even into the second week after chemo (the narcs he was on were probably also balancing this out quite a lot).

We are feeling super super hopeful and optimistic. Keep your fingers crossed that the comparison of CT scans lends to good news! Otherwise our next option will be a clinical trial.

RE: CA19-9 cut in HALF!

by Baloo on Fri Jan 11, 2019 11:37 PM

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I'm hoping for good news, but the evidence points to  the folfirinox being effective :-) if Dave's gaining weight and feeling better.

I liked kaopectate for diarrhea. Works well and the clay mops up some toxins too. I didn't see any effect from probiotics, myself but they may help Dave. 

Good luck!!!!!

RE: CA19-9 cut in HALF!

by DavesGirl70 on Sat Jan 12, 2019 02:55 PM

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On Jan 11, 2019 11:37 PM Baloo wrote:

I'm hoping for good news, but the evidence points to  the folfirinox being effective :-) if Dave's gaining weight and feeling better.

I liked kaopectate for diarrhea. Works well and the clay mops up some toxins too. I didn't see any effect from probiotics, myself but they may help Dave. 

Good luck!!!!!

Thanks Baloo!! Yes, that's what we're thinking too - everything points to it being effective, we're just hoping that the CT scan confirms that too. 

Thanks for the tip! Will definitely try the kaopectate! 

Hope you are also doing okay?

RE: CA19-9 cut in HALF!

by Baloo on Sun Jan 13, 2019 08:36 PM

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Hi Dave'sgirl, thanks, I'm still here but I'm watching with morbid fascination as I see lymph nodes rapidly growing and sticking out of my abdomen- who knew a lymph node could hurt so much??. There's a line of four of them ranging in size from  quail egg to  hen's egg. Who knows what's going on where I can't see them? Strangely they are the only source of pain at this point and so far three of them hurt.  The original tumor was brutal when this first started but I do not feel it now even though it's growing according to the last ct scan.  Perhaps the resection of the tail of the pancreas is giving it space so it's not squishing nerves- ??  Go figure.

Thinking of you two! Hang in! Hoping for good news.

My stomach is still a bit fussy- I'm not sure which foods do it, sometimes it violently disagrees and I have to throw it all up-  but the intestines have greatly improved, they are not bothering me. I do not miss the bloating and diarrhea.

I signed up for that sandfly virus trial at Princess Margaret. Apparently some information was missing, and I'm not impressed that it took my mother (she's almost 86 and amazing) to find out that they were missing submitting information stuff but had not bothered to contact my doctor for it. Who knows how long it would have sat there. Pancreatic cancer patients do not have the luxury of time.... anyhow I hope I hear from them soon. I'm keeping going with the help of the occasional tylenol, cannabis oil and CBD oil and cucurmin. These all help with the pain.

One thing I should mention, apparently it's better if there's a chance the folfirinox will kill the cancer, and that was my doctor's advice too (in hindsight) that it's better to be able to go every 2 weeks with a lower dose of folfirinox than to use a high dose and then have to take holidays. That is worth researching further. Are they giving Dave Neulasta? Worked for me keeping my bloodwork good, although there can be nasty side effects with this stuff too.

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