Please allow me to introduce myself

[retiredteacher]

OK. I have absolutely nothing of value to add to this conversation. But I truly appreciated and could identify with the Alice's Restaurant reference. Carry on ...

[MetastaticEquilibria]

Hi boxhill,

I just want to clarify that the drug under discussion, which goes by various brand names, stimulates WHITE blood cell production (hence neutrophils), not platelets.

Yes, good clarification. Actually, it looks like a possible side effect of Filgrastim is reduced platelets: https://www.neupogen.com/. Yikes.

And cheers, retiredteacher.

[Rock_Robster]

Hi boxhill,

I just want to clarify that the drug under discussion, which goes by various brand names, stimulates WHITE blood cell production (hence neutrophils), not platelets.

Yes, good clarification. Actually, it looks like a possible side effect of Filgrastim is reduced platelets: https://www.neupogen.com/. Yikes.

And cheers, retiredteacher.

Yep, good point - thanks.

[MetastaticEquilibria]

A quick update on my situation:

Folfiri+Cyramza ended up not working out. To keep my platelets and neutrophils above chemo threshold required lowering the dose so much that it stopped working on the tumors.

To pile on the good news, I ended up hospitalized again with jaundice due to bile duct blockage. Let the Good Times Roll.

A biliary stent brought the bilirubin levels down. The cause of the blockage is not entirely clear. Could be regrowth of the liver tumors, though this is hard to discern from CT scans. Could be hardening tissue from the proton radiation. Or... something else? In any case bilirubin is only mildly elevated now with the stent. CT shows lower 2/3 of liver draining well, upper 1/3 not. Good enough for now.

CT also shows increase in spleen size, likely due to the same tumor or dead tissue blockage in liver (? My guess).

Started Lonsurf+Avastin. After first week, platelets down to just below threshold, so doctor said let’s try again in a week. You can guess the punchline: platelets even lower the second week. Going in this Friday to see if third time’s the charm. I Can’t Stand Up for Falling Down.

Will also be getting CEA and CA19-9 measurements this Friday. No good reason to expect they have improved, though, since I have only had half a round of Lonsurf since last set of measurements.

Starting to look into Plans, what are they now, D, E and F? In any case, Clown Time is Over.

[claudine]

Oh man, I'm so sorry to read all this. What an effin' disease. Good playlist though... Maybe add "I won't back down" (but not "Free Falling")!

[MetastaticEquilibria]

Oh man, I'm so sorry to read all this. What an effin' disease. Good playlist though... Maybe add "I won't back down" (but not "Free Falling")!

Good suggestions, thanks. Definitely not ready to back down yet.

Tangent: I knew a kid in high school who was a huge Tom Petty fan. Was always raving about what a genius he was. Recently learned that that kid ended up becoming Tom Petty’s friend and official biographer! Nice to see someone’s dream come true like that.

[Siti]

I hate this disease! So sorry about your on-going issue with platelet count.

This is not chemo/cancer related but I contracted dengue fever many years ago and I was hospitalised for 5 days because my platelet count was depleting significantly. The best local remedy was to drink papaya leaf juice. Essentially cold pressed juice of papaya leaves — it worked for me almost immediately and it worked for numerous others, all friends, relatives or colleagues.

Before writing this post, I wanted to be sure that I wasn’t recommending something from an old wives tale but I am surprised to learned that there are clinical studies that worked. I’m not certain if the mechanism of action would work for chemo related side effects but no harm investigating further!

[MetastaticEquilibria]

I hate this disease! So sorry about your on-going issue with platelet count.

This is not chemo/cancer related but I contracted dengue fever many years ago and I was hospitalised for 5 days because my platelet count was depleting significantly. The best local remedy was to drink papaya leaf juice. Essentially cold pressed juice of papaya leaves — it worked for me almost immediately and it worked for numerous others, all friends, relatives or colleagues.

Before writing this post, I wanted to be sure that I wasn’t recommending something from an old wives tale but I am surprised to learned that there are clinical studies that worked. I’m not certain if the mechanism of action would work for chemo related side effects but no harm investigating further!

Yes, I have read papers on papaya leaf extract being effective for low platelets due to oxaliplatin. I have tried it before, and in fact am taking some now, though I have never had any clear results in my case. Still, doesn’t seem harmful, so worth a shot on the off chance. But glad to hear someone else has heard of those studies, too. Thanks.

[Siti]

How are you extracting the juice? My mom used fresh papaya leaves, then pound them with a mortar and squeezed the juice into a small shot. I drank it raw, fresh. I don’t know if there is a difference but in the west, people take them as tea or pills.

Sending positive vibes your way!

[MetastaticEquilibria]

How are you extracting the juice? My mom used fresh papaya leaves, then pound them with a mortar and squeezed the juice into a small shot. I drank it raw, fresh. I don’t know if there is a difference but in the west, people take them as tea or pills.

Sending positive vibes your way!

Thanks!

We don’t grow much papaya around here, so I have been using pills and drops. Don’t know if effectiveness is lost, but the paper on oxaliplatin and papaya extract seemed to be using something similar.

[claudine]

Neat story about Tom Petty!

[MetastaticEquilibria]

Update: against all reason and expectation, both CEA and CA19-9 went down. Liver function numbers still slowly improving. Does this Lonsurf stuff actually work, even just a half cycle’s worth?

Doctor cast a blind eye to rising-but-still-low platelets, and allowed me to have another half-cycle of Lonsurf, at 2/3 strength. No Avastin this time. Will find out in December what CT and tumor markers say.

So, as Dr. Alban would say, Sing Hallelujah!

Though I hardly feel like singing or even getting out of bed. This Lonsurf is almost as bad as Irinotecan. No diarrhea, but terrible fatigue. And I am in great daily pain in my abdomen, which makes It impossible to concentrate on anything else, or even eat.

We’ve tried all sorts of painkillers, and the most effective one seemed to be Loxoprofen. But Dr. is worried about damage to kidneys from long-term usage, so as a safer alternative he has prescribed copious amounts of Oxycodone. Which seems to work, more or less, but that whole addiction thing is a concern. (Had lots of fun weaning myself from Fentanyl after a previous hospitalization.) Hope I don’t have to fly internationally soon, because the paperwork and customs declaration seem unlikely to be fun.

[claudine]

That's fantastic news ME! Well, the decrease in CEA and improved liver functions, at least. Not so much the pain

[MetastaticEquilibria]

That's fantastic news ME! Well, the decrease in CEA and improved liver functions, at least. Not so much the pain

Thanks!

[MetastaticEquilibria]

Been a while, so a quick update.

Unfortunately, the Nov. CT scan showed a new tumor in the liver, high up on the left side, in an area that I think had not been irradiated before. CEA and CA19-9 both went up too. So, Lonsurf has been deemed a failure.

My doctor proposed trying a technique for which they happen to have a well-known expert available: hepatic arterial infusion via catheter. This is similar to HAI pump, but instead of having an implanted pump, the catheter line goes to a second chemo port on my chest, and the liver tumor is flooded directly with chemo via that port once a week. No guarantee of effectiveness, may only buy some time if it works at all, but seems worth a shot, so I agreed. So now I have two ports, one for systemic chemo and one for HAI. (I guess this makes me an upgraded cyborg.)

Just had my third HAI infusion yesterday, so too early to tell if it is working, but at least the side effects are much better than systemic chemo. Of course this leaves the lung tumors untreated for the time being, but they are not what will kill me first. More important to focus on trying to keep liver tumors under control, since those suckers grow really fast.

Well, always happy to try new things.

Note: the explanatory material from the hospital states that it is called ”TAI” in English, without explaining what the letters are supposed to stand for in English. Transcatheter Arterial Infusion? But I noticed that my doctor calls it HAI in his notes, and the Japanese term for it translates directly to to HAI, so that is how I am describing it here. Interestingly, the first experiments with HAI pumps back in the 1960s apparently used an external pump, delivering chemo via a subcutaneous port to an arterial catheter — so basically similar to what I have. My pump is the standard chemo balloon-bottle infusor used for systemic chemo, but set to empty out in 4 hours instead of the 2 days that systemic chemo usually requires. Anyway, interesting history lesson, I thought.