I have Cancer :/ -- still doing well

[jerryskids 5,206]

Update: got word yesterday that I'm doing the chemo/immuno cocktail, and we are starting tomorrow, so things are moving fast.  Watched an hour video this morning on the marvelous side effects, although it was general vs specific to my treatment, and different people react differently, so I guess we'll see.

Downloaded season 1 of Breaking Bad yesterday and watched some on the flight back from Michigan. Didn't realize he had lung cancer, which is what mine metastasized into.  Not sure if I can watch him deteriorate much longer.

[Strike 3,979]

1 minute ago, jerryskids said:

Update: got word yesterday that I'm doing the chemo/immuno cocktail, and we are starting tomorrow, so things are moving fast.  Watched an hour video this morning on the marvelous side effects, although it was general vs specific to my treatment, and different people react differently, so I guess we'll see.

Downloaded season 1 of Breaking Bad yesterday and watched some on the flight back from Michigan. Didn't realize he had lung cancer, which is what mine metastasized into.  Not sure if I can watch him deteriorate much longer.

Not to spoil anything, but that series is like 6 seasons long.......I think there's a hint in there somewhere......

[jerryskids 5,206]

2 minutes ago, Strike said:

Not to spoil anything, but that series is like 6 seasons long.......I think there's a hint in there somewhere......

Thanks.  I just saw the episode where he tells his family, and they talk about putting together an onc dream team.  I figure the drug money will pay for that, and that they'll have some success.  These days he is coughing and fainting a lot tho.

[Strike 3,979]

Just now, jerryskids said:

Thanks.  I just saw the episode where he tells his family, and they talk about putting together an onc dream team.  I figure the drug money will pay for that, and that they'll have some success.  These days he is coughing and fainting a lot tho.

I'll just say this.  If you're enjoying the show overall, the cancer stuff notwithstanding, work your way through it.  I don't remember exactly when, it may be even in to season 2 sometime, but the cancer becomes a footnote.  I binged watched that series over a couple of weeks a few years ago.  It's pretty engrossing and entertaining IMO. 

Hope you're feeling ok buddy.  Keep us updated as you work through this.  We're all here for you.

[vuduchile 1,941]

1 hour ago, jerryskids said:

Update: got word yesterday that I'm doing the chemo/immuno cocktail, and we are starting tomorrow, so things are moving fast.  Watched an hour video this morning on the marvelous side effects, although it was general vs specific to my treatment, and different people react differently, so I guess we'll see.

Downloaded season 1 of Breaking Bad yesterday and watched some on the flight back from Michigan. Didn't realize he had lung cancer, which is what mine metastasized into.  Not sure if I can watch him deteriorate much longer.

Kick some cancer ass tomorrow man!

[fandandy 3,311]

Good luck, Jerry.  

[Thornton Melon 544]

Best of luck, skids. And like Strike said, BB doesn't focus on the cancer. Watch and enjoy.

[wiffleball 4,645]

13 minutes ago, Thornton Melon said:

Best of luck, skids. And like Strike said, BB doesn't focus on the cancer. Watch and enjoy.

Bill Bellichik?

[Thornton Melon 544]

4 minutes ago, wiffleball said:

Bill Bellichik?

Black Betty (bam ba lam)

[dain11279 928]

Don’t give up on Breaking Bad JK, the cancer does become a footnote and it’s the GOAT of TV shows. Enjoy

[Mike Isles 583]

41 minutes ago, dain11279 said:

Don’t give up on Breaking Bad JK, the cancer does become a footnote and it’s the GOAT of TV shows. Enjoy

This

[jerryskids 5,206]

Update:  Treatment got delayed until tomorrow, of course it didn't happen until I was 5 minutes away from Mayo.  Delays in insurance approval, which still isn't in place but should be shortly.  To keep things moving I signed a waiver that I'd pay myself if the insurance doesn't, which being Blue Cross isn't expected to be a problem.  Let's just say that if it was and I had to pay the list price estimate they gave me for a single treatment, I would need to learn to cook meth pretty quickly to subsidize it...

Since I was almost there I kept my appointment with the oncologist.  Actually got a few pieces of good-ish news.  One was that my protein biomarker test was no 0% but 8%; at 20% or higher they default to immuno only.  The point being that immuno should help, and that is an option for ongoing maintenance (if needed) for a few years after this set of combined treatments.  The other was:  as he described the possibility of finger/toe numbness from chemo, he said that that usually happened with people who took it long term, whereas I have a set, finite plan of treatments.  

I'm confident that I'm reading good news where I want to see it to some extent, but my wife agreed that the vibe was not one of going though the motions.

Anyway, I'm scheduled for 6 hours tomorrow starting 11 AZ time/PDT (hopefully it won't be that long) so I'll check in here with an update if I get the chance between BB episodes.   

[Bill E. 666]

2 minutes ago, jerryskids said:

Update:  Treatment got delayed until tomorrow, of course it didn't happen until I was 5 minutes away from Mayo.  Delays in insurance approval, which still isn't in place but should be shortly.  To keep things moving I signed a waiver that I'd pay myself if the insurance doesn't, which being Blue Cross isn't expected to be a problem.  Let's just say that if it was and I had to pay the list price estimate they gave me for a single treatment, I would need to learn to cook meth pretty quickly to subsidize it...

Since I was almost there I kept my appointment with the oncologist.  Actually got a few pieces of good-ish news.  One was that my protein biomarker test was no 0% but 8%; at 20% or higher they default to immuno only.  The point being that immuno should help, and that is an option for ongoing maintenance (if needed) for a few years after this set of combined treatments.  The other was:  as he described the possibility of finger/toe numbness from chemo, he said that that usually happened with people who took it long term, whereas I have a set, finite plan of treatments.  

I'm confident that I'm reading good news where I want to see it to some extent, but my wife agreed that the vibe was not one of going though the motions.

Anyway, I'm scheduled for 6 hours tomorrow starting 11 AZ time/PDT (hopefully it won't be that long) so I'll check in here with an update if I get the chance between BB episodes.   

Goodish news!! 

[MTSkiBum 1,594]

6 minutes ago, jerryskids said:

Update:  Treatment got delayed until tomorrow, of course it didn't happen until I was 5 minutes away from Mayo.  Delays in insurance approval, which still isn't in place but should be shortly.  To keep things moving I signed a waiver that I'd pay myself if the insurance doesn't, which being Blue Cross isn't expected to be a problem.  Let's just say that if it was and I had to pay the list price estimate they gave me for a single treatment, I would need to learn to cook meth pretty quickly to subsidize it...

Since I was almost there I kept my appointment with the oncologist.  Actually got a few pieces of good-ish news.  One was that my protein biomarker test was no 0% but 8%; at 20% or higher they default to immuno only.  The point being that immuno should help, and that is an option for ongoing maintenance (if needed) for a few years after this set of combined treatments.  The other was:  as he described the possibility of finger/toe numbness from chemo, he said that that usually happened with people who took it long term, whereas I have a set, finite plan of treatments.  

I'm confident that I'm reading good news where I want to see it to some extent, but my wife agreed that the vibe was not one of going though the motions.

Anyway, I'm scheduled for 6 hours tomorrow starting 11 AZ time/PDT (hopefully it won't be that long) so I'll check in here with an update if I get the chance between BB episodes.   

 

Best of luck, sounds like they have a plan.

[Mike Isles 583]

Look at meeeee. 
 

Just kidding ‘Skids. Good luck and I look forward for update. 

[DonS 3,067]

1 hour ago, jerryskids said:

Update:  Treatment got delayed until tomorrow, of course it didn't happen until I was 5 minutes away from Mayo.  Delays in insurance approval, which still isn't in place but should be shortly.  To keep things moving I signed a waiver that I'd pay myself if the insurance doesn't, which being Blue Cross isn't expected to be a problem.  Let's just say that if it was and I had to pay the list price estimate they gave me for a single treatment, I would need to learn to cook meth pretty quickly to subsidize it...

Since I was almost there I kept my appointment with the oncologist.  Actually got a few pieces of good-ish news.  One was that my protein biomarker test was no 0% but 8%; at 20% or higher they default to immuno only.  The point being that immuno should help, and that is an option for ongoing maintenance (if needed) for a few years after this set of combined treatments.  The other was:  as he described the possibility of finger/toe numbness from chemo, he said that that usually happened with people who took it long term, whereas I have a set, finite plan of treatments.  

I'm confident that I'm reading good news where I want to see it to some extent, but my wife agreed that the vibe was not one of going though the motions.

Anyway, I'm scheduled for 6 hours tomorrow starting 11 AZ time/PDT (hopefully it won't be that long) so I'll check in here with an update if I get the chance between BB episodes.   

Did he name the potential chemo drug(s)? 

The cisplatin that I took had a risk for neuropathy - the numbness - but luckily I only experienced a little and it didn't end up being permanent.  Cisplatin *did* give me the lifelong gift of ringing in the ears, though.

 

[Alias Detective 1,179]

Hoping for the best.

[Mookz 1,287]

Nice Skids, hope your Newsday subscription lapses long before you do.  

[Voltaire 4,562]

Hopefully there's a cancer-free way out of this, Jerry.

[Cloaca du jour 2,064]

[jerryskids 5,206]

1 hour ago, DonS said:

Did he name the potential chemo drug(s)? 

The cisplatin that I took had a risk for neuropathy - the numbness - but luckily I only experienced a little and it didn't end up being permanent.  Cisplatin *did* give me the lifelong gift of ringing in the ears, though.

 

The chemo drugs are carboplatin and paclitaxel; the combo is sometimes called "Taxol/Carbo".  The immuno is pembrolizumab, brand name Keytruda which you may have seen in commercials during sports.

Paclitaxel is the main contributor for the peripheral neuropathy (numbness/tingling) and the hair loss.

[Voltaire 4,562]

2 minutes ago, jerryskids said:

The chemo drugs are carboplatin and paclitaxel; the combo is sometimes called "Taxol/Carbo".  The immuno is pembrolizumab, brand name Keytruda which you may have seen in commercials during sports.

Paclitaxel is the main contributor for the peripheral neuropathy (numbness/tingling) and the hair loss.

I recognize about half the words in this post, maybe 60%.

[Gladiators 1,904]

I like the update. I hope everything goes according to plan, other than the treatment being approved by insurance...I think you’d make a perfect real world Walter White.

[Artista 460]

Good luck on your journey. A tip on neuropathy that I did which helped tremendously. Get 4 flat ice packs. Your infusion center should have a pt fridge/freezer. Place your hands and bare feet on the ice packs. On for 15 off for 15 is what I did. I had 8 in their freezer to switch out. I had a little neuropathy still but hardly any now. I had Adriamycin of my 3 chemos and they call that the red devil for good reason. 

For bone pain I had, regular strength Claritin worked like a charm. 

To prevent mouth sores, biotene mouthwash.

For muscle pain, magnesium. 

There are things docs and staff don't know such as these. I shared my findings from researching and implementing tips from other fighters on the breastcancer.org board.

Hopefully they serve you lunch. My infusion center always has sandwiches, pop, juices, cookies, crackers, salads.. mine is in the hospital so I would order what I wanted. Otherwise take snacks.

This isn't a look at me. Just sharing what I can remember that helped with side effects so they won't hopefully be too bad. Stay ahead of it. If you start to feel it, pop the pill. If you wait until it's bad then getting it to dial down could be difficult. 

Oh and I had BC insurance too. My onc would call herself and get it approved so don't be quick to doll out cash. Hopefully your onc is an ass kicker like mine is if needed.

 

[DonS 3,067]

25 minutes ago, jerryskids said:

The chemo drugs are carboplatin and paclitaxel; the combo is sometimes called "Taxol/Carbo".  The immuno is pembrolizumab, brand name Keytruda which you may have seen in commercials during sports.

Paclitaxel is the main contributor for the peripheral neuropathy (numbness/tingling) and the hair loss.

My wife is getting Taxol for her chemo.

As Artista mentioned when I was getting my cisplatin I shoved my feet and hands in bowls of ice water which sucked but might've helped since I didnt have any major issues.   My wife's chemo nurse gave her a heads up that she could instead get ice pack gloves and socks from Amazon.  Looks like she's wearing oven mitts but helluva lot more convenient and comfortable than straight ice route. 

[jerryskids 5,206]

21 minutes ago, Gladiators said:

I like the update. I hope everything goes according to plan, other than the treatment being approved by insurance...I think you’d make a perfect real world Walter White.

I can be a bit of a sociopath, plus I understand that science stuff, so... 

 

[Artista 460]

5 hours ago, DonS said:

My wife is getting Taxol for her chemo.

As Artista mentioned when I was getting my cisplatin I shoved my feet and hands in bowls of ice water which sucked but might've helped since I didnt have any major issues.   My wife's chemo nurse gave her a heads up that she could instead get ice pack gloves and socks from Amazon.  Looks like she's wearing oven mitts but helluva lot more convenient and comfortable than straight ice route. 

Nice. I didn't think to look for gloves. I'm sure much more comfortable. 

I had taxotere instead of taxol. Both basically the same but made differently. That was a doozy too. I did Adriamycin and cytoxin combo first then taxotere at the end by itself.

Best wishes to your wife. X

[Voltaire 4,562]

Welcome back @Artista

[Mike Isles 583]

7 hours ago, Voltaire said:

Welcome back @Artista

Oh my. .......

[Artista 460]

3 hours ago, Mike Isles said:

Oh my. .......

What's up shotsup. Hope all's well!

[jerryskids 5,206]

42 minutes ago, Artista said:

Good luck on your journey. A tip on neuropathy that I did which helped tremendously. Get 4 flat ice packs. Your infusion center should have a pt fridge/freezer. Place your hands and bare feet on the ice packs. On for 15 off for 15 is what I did. I had 8 in their freezer to switch out. I had a little neuropathy still but hardly any now. I had Adriamycin of my 3 chemos and they call that the red devil for good reason. 

For bone pain I had, regular strength Claritin worked like a charm. 

To prevent mouth sores, biotene mouthwash.

There are things docs and staff don't know such as these. I shared my findings from researching and implementing tips from other fighters on the breastcancer.org board.

Hopefully they serve you lunch. My infusion center always has sandwiches, pop, juices, cookies, crackers, salads.. mine is in the hospital so I would order what I wanted.

This isn't a look at me. Just sharing what I can remember that helped with side effects so they won't hopefully be too bad.

Oh and I had BC insurance too. My onc would call herself and get it approved so don't be quick to doll out cash. Hopefully your onc is an ass kicker like mine is if needed.

 

 

30 minutes ago, DonS said:

My wife is getting Taxol for her chemo.

As Artista mentioned when I was getting my cisplatin I shoved my feet and hands in bowls of ice water which sucked but might've helped since I didnt have any major issues.   My wife's chemo nurse gave her a heads up that she could instead get ice pack gloves and socks from Amazon.  Looks like she's wearing oven mitts but helluva lot more convenient and comfortable than straight ice route. 

Thank you both very much, and good to see you Artista, I hope all is well.  I had not heard about this but last night based on these recommendations I ordered hands and feet from Amazon.  The feet came this morning and are in the freezer now.  I don't think the hands will make it.  Thanks again.   

[Bert 1,091]

32 minutes ago, jerryskids said:

 

I ordered hands and feet from Amazon.  The feet came this morning and are in the freezer now.  I don't think the hands will make it. 

 You really can get ANYTHING on Amazon.    Good luck my brother!

[Artista 460]

36 minutes ago, jerryskids said:

 

Thank you both very much, and good to see you Artista, I hope all is well.  I had not heard about this but last night based on these recommendations I ordered hands and feet from Amazon.  The feet came this morning and are in the freezer now.  I don't think the hands will make it.  Thanks again.   

No prob.

Chemo is cumulative. My first dose didn't do anything to me. Just try to stay ahead of the side effects. Take the nausea med as directed even if you feel fine. So many don't and it hits hard. If you wait until ses are bothersome, it'll be harder to dial them back. 

Another thing. My center would put anxiety meds and benedryl in my pre chemo cocktail. Made me loopy so I said no. Not everything in the pre chemo cocktail is mandatory. I wanted to be alert so thankfully they cut those out.

I'm coming up on 6 years out from diagnosis. So far so good! It's the med I'm taking now that kills the energy but small price to pay.

You have great support. That is half the battle. Take it one day at a time. You too will look back and say..I made it through!

[Mike Isles 583]

4 hours ago, Artista said:

What's up shotsup. Hope all's well!

[DonS 3,067]

Hope your chemo goes well, Jerry.  As a potential good omen the chemo nurse for my wife today is a cutie.  Just need to not get caught looking at her nice ass. 

Edit: @jerryskidsI sent you a message with pics of that ass.  Good vibes are very important when fighting cancer! 

[jerryskids 5,206]

Update:  Day 1 in the books and so far other than tiredness I feel fine so far, knock on wood.  Long day with about 5 hours total of drips, 7 hours total time.  I didn’t object to the Benadryl as they sold it primarily as being very effective against fairly common reactions to the taxol/paclitaxel, and in the end I had no problems so I’ll probably stick with it.

I took the frozen feet thingies but I never wore them.  Artists said the effects are cumulative which makes sense.  I’ll take them next time (hands were at home when I got here).

We’ve got a ton to do around the house prepping to sell it, but given my situation we are contracting as much out as possible and I need to be smart and not push things too hard.

Next treatment is in ~3 weeks.  They will do 3 total treatments (two more) then a scan to make sure it is reducing or at least stopping growth, in which case I’ll have 1-3 more treatments.  My sense was that that number is based on how well I tolerate things, and I certainly hope to not let a little intolerance get in the way of more treatments.   

[Mike Isles 583]

You da man Jerry. I’ve said it before but I don’t think I’d have the fight in me to do what you are doing - don’t get me wrong I love my kids and do not want to leave before seeing them get married and have kids but this sounds terrifying. Stay strong brother. 

[Artista 460]

15 hours ago, jerryskids said:

Update:  Day 1 in the books and so far other than tiredness I feel fine so far, knock on wood.  Long day with about 5 hours total of drips, 7 hours total time.  I didn’t object to the Benadryl as they sold it primarily as being very effective against fairly common reactions to the taxol/paclitaxel, and in the end I had no problems so I’ll probably stick with it.

I took the frozen feet thingies but I never wore them.  Artists said the effects are cumulative which makes sense.  I’ll take them next time (hands were at home when I got here).

We’ve got a ton to do around the house prepping to sell it, but given my situation we are contracting as much out as possible and I need to be smart and not push things too hard.

Next treatment is in ~3 weeks.  They will do 3 total treatments (two more) then a scan to make sure it is reducing or at least stopping growth, in which case I’ll have 1-3 more treatments.  My sense was that that number is based on how well I tolerate things, and I certainly hope to not let a little intolerance get in the way of more treatments.   

If for some reason you are unable to tolerate it further, there are other chemos on the table. That was my concern as well. 

I pulled out the planner from back then and saw I also noted to ask for ice chips. I think that was to help with the possibility of getting mouth sores. 

I didn't buy the mouthwash. Here's a cheaper alternative. 

1 spoon baking soda in 1 c warm water. Swoosh in your mouth every time after eating. I also brushed after each meal. I just made this my routine for the 5 months I had chemo. Would have been 4 months every 2 weeks had BC accidentally dropped me. Took a month of being passed around to get reinstated for the final dose.

On my shopping list was activia yogurt, ensure protein drinks and align probiotics. I believe that's why I didn't have as bad of nausea as others did. I had no appetite hence the ensure protein drink. Protein is key.

I was also told no grapefruit juice, which I love. Interferes with the chemo effectiveness. Not sure if it's for all or just what I had. So heads up if you like grapefruit. I still have it cut out. Other citruses are fine. I'm guessing the acidity is why. 

Most important is to eat. I was doing some junk food because the other stuff was making me too sick. During chemo, eat multiple meals, small quantities- whatever stays down. 

Definitely listen to your body. Good you are contracting out for your home upgrades. Best to conserve your energy.

Glad to hear day 1 went well.

[jerryskids 5,206]

4 hours ago, Artista said:

If for some reason you are unable to tolerate it further, there are other chemos on the table. That was my concern as well. 

I pulled out the planner from back then and saw I also noted to ask for ice chips. I think that was to help with the possibility of getting mouth sores. 

I didn't buy the mouthwash. Here's a cheaper alternative. 

1 spoon baking soda in 1 c warm water. Swoosh in your mouth every time after eating. I also brushed after each meal. I just made this my routine for the 5 months I had chemo. Would have been 4 months every 2 weeks had BC accidentally dropped me. Took a month of being passed around to get reinstated for the final dose.

On my shopping list was activia yogurt, ensure protein drinks and align probiotics. I believe that's why I didn't have as bad of nausea as others did. I had no appetite hence the ensure protein drink. Protein is key.

I was also told no grapefruit juice, which I love. Interferes with the chemo effectiveness. Not sure if it's for all or just what I had. So heads up if you like grapefruit. I still have it cut out. Other citruses are fine. I'm guessing the acidity is why. 

Most important is to eat. I was doing some junk food because the other stuff was making me too sick. During chemo, eat multiple meals, small quantities- whatever stays down. 

Definitely listen to your body. Good you are contracting out for your home upgrades. Best to conserve your energy.

Glad to hear day 1 went well.

Thanks for the advice.  My wife started making me overnight oatmeal with macadamia milk and Greek yogurt (with probiotics); I add berries, coconut, and crushed nuts the next day.  Quite yummy as a 4th or 5th meal.

Hadn’t heard about grapefruit, I presume it is the acidity?  I know I’m supposed to avoid antioxidant supplements, particularly vitamins C and E.  

I still have protein and high-cal shakes from radiation and have started drinking them as well prior to treatment, in anticipation of losing weight/appetite during it. 

[jerryskids 5,206]

On a more fun note:  The palitaxel (taxol) has a list of medicines which “may impact the way it works”.  One of them was sildenafil, aka Viagra.  So I googled it this morning and... the impact is beneficial$#@! 

Combination Chemotherapy With Sildenafil Plus Carboplatin and Paclitaxel in Patients With Advanced Non-small Cell Lung Cancer

https://clinicaltrials.gov/ct2/show/NCT00752115

That is exactly what I have, both treatment and current cancer.  Now I just need to find the results of the study!   

Since the study talks about PDE5 inhibitors in general I googled Tadalafil (Cialis), there is an ongoing study with Keytruda focused on my starting cancer:

Tadalafil and Pembrolizumab for the Treatment of Recurrent or Metastatic Head and Neck Squamous Cell Cancer

https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2020-03674&r=1

It so happens that I have a large supply of each drug, courtesy of a Chinese generic pharmacy.  

Of course I pointed this out to the wife and said I wanted to bounce this nugget off of the doctor; her reaction:  “you’re going to make me ask him, aren’t you.  “ (because of my voice challenges).  I said no, I’ll send it through the portal and make the young female nurse respond.   

@DonS, I’m not sure how but maybe you can use this knowledge with your wife somehow?  Perhaps they work on women as well?  I’ve always wondered...