Things didn't work out as planned ... and a big question
First off - I hope you are all well, and enjoying life to the fullest.
I don't post often but check in on everyone from time to time. I last posted in July some good news about my husband Brian. It always helps me to read good news - gives me hope and I wanted to pay it forward. It looked like he was going to have a shot at NED. In Feb they took him to surgery and removed the tumors (through ablation and cutting) on the left lobe of his liver. Following that, they did a portal vein embolization to prepare him for complete removal of the right lobe in September. Everyone - us, docs, nurses, etc. - was very excited about the possible outcome of this.
Unfortunately, when they took him to surgery in Sept. they had to abort the procedure because when they opened him up they found tumors back on the left lobe. Without the left side being clean and cancer free, they cannot take the right side. The plan was to get a PET scan, put him back on chemo, and possibly try again in another 6 months.
Yesterday we were given the results of the PET scan and it looks like the tumors are back full force on the left lobe. He has tumors throughout his liver, not just on the right where we were expecting them. Basically, without the chemo the tumors grow and they are dispersed throughout his liver.
Of course he is very disappointed, and I am struggling to convince him that this is not "the beginning of the end". He is a strong guy, a fighter, with a great sense of humor. He has worked fulltime for the last two years throughout weekly chemo, recovered quickly from surgeries and hardly ever complained about a thing. He's a family guy who was determined not to let cancer ruin another day with his family. But he is very concerned about one thing, and that leads to my question - does anyone have any idea how much more jeopardy he might be in because of the portal vein embolization? It is not a reversible procedure. His docs don't seem to think it is a big deal, even though they said they would be watching his liver closely (currently liver function is normal). But Brian is really concerned about the fact that one side of his liver has been essentially dying from lack of blood supply, and that he won't have enough to deal with the chemo, etc. He has chemo weekly - Folfiri and erbitux, and had a really excellent response last time he was on it - enough of a response to make him a candidate for surgery when we were previously told it was completely inoperable. It is the second regimen, he was on Folfox first and that stopped working. We were told yesterday that if this regimen stops working, there are only clinical trials left for him. He also has to give himself daily shots of Lovenox for blood clots around his port (3 - 1 in juglar, 1 in chest, 1 under his arm).
In addition, anyone have an ideas about what I/we could be doing to actively support liver function in terms of nutrition, nutrients, etc. He was juicing and stopped, but will be starting again.
Like I said, I love to read good news - it helps me so much. I'm sorry and really hate to post anything remotely negative. Just really need some info. Thanks for your help.
Donna
Comments
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A Blast From the Past...
Hi Donna
Nice to see you again, but I am sorry it is under these circumstances.
If he can still do Folfiri, I would ride that wave until it stopped. As far as I know, chemically speaking...Folfox, Folfiri, 5-fu or Xeloda, Avastin, Erbitux or Vectibix and then clinical trials.
It sounds like you've used most of these, but if there are a couple you have not, these are what I am aware of. For detox of the liver, having him take Milk Thistle is a good cleanser and should not do any harm. If you are resuming the juice, that sounds good as well.
I don't know about the embolization and will have to defer to my colleagues to answer this question, because I just cannot answer it intelligently enough.
Never worry about posting bad news. We're a colorectal board as you know. There is always bad news or there would not be a need for this place. Good news is always welcome and is so often a "nail that we can hang our hats on" to get us further down the road.
Sorry, I have not been of more help. I just wanted to say hi to you once more and say that I am still pulling for you both.
From the Heart of Texas
-Craig0 -
Hi Craig! So good to hearSundanceh said:A Blast From the Past...
Hi Donna
Nice to see you again, but I am sorry it is under these circumstances.
If he can still do Folfiri, I would ride that wave until it stopped. As far as I know, chemically speaking...Folfox, Folfiri, 5-fu or Xeloda, Avastin, Erbitux or Vectibix and then clinical trials.
It sounds like you've used most of these, but if there are a couple you have not, these are what I am aware of. For detox of the liver, having him take Milk Thistle is a good cleanser and should not do any harm. If you are resuming the juice, that sounds good as well.
I don't know about the embolization and will have to defer to my colleagues to answer this question, because I just cannot answer it intelligently enough.
Never worry about posting bad news. We're a colorectal board as you know. There is always bad news or there would not be a need for this place. Good news is always welcome and is so often a "nail that we can hang our hats on" to get us further down the road.
Sorry, I have not been of more help. I just wanted to say hi to you once more and say that I am still pulling for you both.
From the Heart of Texas
-Craig
Hi Craig! So good to hear from you old friend! Hope everything is great with you. Thanks for your reply!0 -
Wow, our stories have sodonnare said:Hi Craig! So good to hear
Hi Craig! So good to hear from you old friend! Hope everything is great with you. Thanks for your reply!
Wow, our stories have so mush in common as far as dx and plan. I will praying for Brian and hope that this is just a bump in the road for you. GOD's blessings to you Donna.
Brenda0 -
Thanks Brenda ... Right backBrenda Bricco said:Wow, our stories have so
Wow, our stories have so mush in common as far as dx and plan. I will praying for Brian and hope that this is just a bump in the road for you. GOD's blessings to you Donna.
Brenda
Thanks Brenda ... Right back at ya!0 -
adding an "alphabet soup"
We attack the alphabet soup of molecular targets with nutriceuticals including many of LEF's, Berkson's, and more. For anything concerning liver, including mets, we add Berkson's oral protocols. He also has an IV protocol with R-alpha lipoic acid and oral naltrexone for stronger liver action. Berkson emphasizes purest European R-lipoic acid for IV work because of its instability and need for careful QA and handling.
Liver support items include oral lipoic acid (+B vitamins esp biotin), milk thistle, selenium, vitamin C (IV and/or oral), lecithin, betaine (trimethylglycine, a beet extract) and maybe N-acetylcysteine (glutathione precursor might conflict with oxaliplatin or vitamin K2 based treatments). We have to mix our own B vitamins to avoid folic acid (or calcium folate) since my wife takes 5FU type chemo, had 5FU-folate toxicity buildup (leucovorin [folinic acid] or natural folates in natural foods are the more compatible B9 vitamins).
One guy assembled a lot of Berkson links.0 -
Hi Donna , hope the treatment makes wonders I will pray for thattanstaafl said:adding an "alphabet soup"
We attack the alphabet soup of molecular targets with nutriceuticals including many of LEF's, Berkson's, and more. For anything concerning liver, including mets, we add Berkson's oral protocols. He also has an IV protocol with R-alpha lipoic acid and oral naltrexone for stronger liver action. Berkson emphasizes purest European R-lipoic acid for IV work because of its instability and need for careful QA and handling.
Liver support items include oral lipoic acid (+B vitamins esp biotin), milk thistle, selenium, vitamin C (IV and/or oral), lecithin, betaine (trimethylglycine, a beet extract) and maybe N-acetylcysteine (glutathione precursor might conflict with oxaliplatin or vitamin K2 based treatments). We have to mix our own B vitamins to avoid folic acid (or calcium folate) since my wife takes 5FU type chemo, had 5FU-folate toxicity buildup (leucovorin [folinic acid] or natural folates in natural foods are the more compatible B9 vitamins).
One guy assembled a lot of Berkson links.
blessings, Pepe.0 -
Double posttanstaafl said:adding an "alphabet soup"
We attack the alphabet soup of molecular targets with nutriceuticals including many of LEF's, Berkson's, and more. For anything concerning liver, including mets, we add Berkson's oral protocols. He also has an IV protocol with R-alpha lipoic acid and oral naltrexone for stronger liver action. Berkson emphasizes purest European R-lipoic acid for IV work because of its instability and need for careful QA and handling.
Liver support items include oral lipoic acid (+B vitamins esp biotin), milk thistle, selenium, vitamin C (IV and/or oral), lecithin, betaine (trimethylglycine, a beet extract) and maybe N-acetylcysteine (glutathione precursor might conflict with oxaliplatin or vitamin K2 based treatments). We have to mix our own B vitamins to avoid folic acid (or calcium folate) since my wife takes 5FU type chemo, had 5FU-folate toxicity buildup (leucovorin [folinic acid] or natural folates in natural foods are the more compatible B9 vitamins).
One guy assembled a lot of Berkson links.
sorry!0 -
Thanks tanstaafltanstaafl said:adding an "alphabet soup"
We attack the alphabet soup of molecular targets with nutriceuticals including many of LEF's, Berkson's, and more. For anything concerning liver, including mets, we add Berkson's oral protocols. He also has an IV protocol with R-alpha lipoic acid and oral naltrexone for stronger liver action. Berkson emphasizes purest European R-lipoic acid for IV work because of its instability and need for careful QA and handling.
Liver support items include oral lipoic acid (+B vitamins esp biotin), milk thistle, selenium, vitamin C (IV and/or oral), lecithin, betaine (trimethylglycine, a beet extract) and maybe N-acetylcysteine (glutathione precursor might conflict with oxaliplatin or vitamin K2 based treatments). We have to mix our own B vitamins to avoid folic acid (or calcium folate) since my wife takes 5FU type chemo, had 5FU-folate toxicity buildup (leucovorin [folinic acid] or natural folates in natural foods are the more compatible B9 vitamins).
One guy assembled a lot of Berkson links.
Thanks for the info .. appreciate it!0
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