Hubby has PPC
Comments
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Your husband's PPC
Hi: I responded on another thread but I'll provide some info here. If the cancer originated in the appendix it is not primary peritoneum cancer but rather secondary like mine (mine came from seeding from gallbladder cancer). There is a woman on here who has been through the peritoneum stripping and HIPEC I think as a result of appendix cancer. Ovarian cancer and appendix cancer are two sources of cancer to the peritoneum that seem to respond well to the stripping and HIPEC. Gallbladder cancer hasn't responded well but I'll give it a try hopefully. There is a man on this and the colon cancer discussion board, Ray - da Beach Bum - who got peritoneum cancer from his colon cancer. So he would be a good one to talk to.
I had 12 treatments of cisplatin/gemcitibine but that didn't do much for the 6 nodules I have on the peritoneum. I have just finished 12 treatments of oxaliplatin + irenotecan + 5FU pump and that did stabilize things and shrunk some of the nodules so they are now saying I may be eligible for the stripping and HIPEC treatments (only done in Calgary here in Canada).
Keep me posted on your husband's treatments.
Cheryl0 -
Thank you for replying!!westie66 said:Your husband's PPC
Hi: I responded on another thread but I'll provide some info here. If the cancer originated in the appendix it is not primary peritoneum cancer but rather secondary like mine (mine came from seeding from gallbladder cancer). There is a woman on here who has been through the peritoneum stripping and HIPEC I think as a result of appendix cancer. Ovarian cancer and appendix cancer are two sources of cancer to the peritoneum that seem to respond well to the stripping and HIPEC. Gallbladder cancer hasn't responded well but I'll give it a try hopefully. There is a man on this and the colon cancer discussion board, Ray - da Beach Bum - who got peritoneum cancer from his colon cancer. So he would be a good one to talk to.
I had 12 treatments of cisplatin/gemcitibine but that didn't do much for the 6 nodules I have on the peritoneum. I have just finished 12 treatments of oxaliplatin + irenotecan + 5FU pump and that did stabilize things and shrunk some of the nodules so they are now saying I may be eligible for the stripping and HIPEC treatments (only done in Calgary here in Canada).
Keep me posted on your husband's treatments.
Cheryl
We will definitely keep you in prayer! They are calling his cancer colon cancer because they say its so rare, no one understands it, but it's through out the peritoneal cavity, some bowel, intestine & a bit on the stomach. So far his gall bladder, pancreas, spleen liver and lungs are clear, so we have hope! He is having pain in his abdomen which they say are the tumors shrinking or so they think. Everyone is so evasive about this...his doctor hasn't given us any path to follow or definite plan so we just live day by day..never knew it was that hard to do, but it is. He is very sure he wants to have the surgery, he fears his appendix may cause more problems...but the doctor seems to want the chemo to do as much as it can before any surgery. Our 14 year old daughter is our rock! She just will not stand any negative talk, she keeps us looking for a bright side and enjoy the good days over the bad. The 3rd chemo treatment really took his strength..is that normal? I see you had 12..oh my...bless your heart...you just keep working toward the stripping and know we're all here for you! I'll look around for the beach bum too. Kathy0 -
There is an Appendix Cancer PMP support group on FB
which has lots of men who are dealing with this. I assume your husband is getting Folfox or Folfiri?
PLEASE have him seen by an appendix cancer specialist. Too many colo-rectal oncologists just treat it as another colon cancer, while it is quite different. An appendix cancer specialist can make all the difference.
I go to Dr. Paty at Memorial Sloan Kettering for my Stage 4 appendix cancer. I've now been in full remission for 4 years.
Alice0 -
will check into Appendix Specialistabrub said:There is an Appendix Cancer PMP support group on FB
which has lots of men who are dealing with this. I assume your husband is getting Folfox or Folfiri?
PLEASE have him seen by an appendix cancer specialist. Too many colo-rectal oncologists just treat it as another colon cancer, while it is quite different. An appendix cancer specialist can make all the difference.
I go to Dr. Paty at Memorial Sloan Kettering for my Stage 4 appendix cancer. I've now been in full remission for 4 years.
Alice
We are n NC...but will check into that. I can't even remember what he is taking...I know that is awful, but it all feels like such a whirlwind. I will check what he is on. BUT I will write down those two names and ask the Oncologist about them Wednesday! Thank you..and I pray you remain in remission!!!! What a wonderful word!!! I hope we get to use that someday too!! Thank you, Alice!!!0 -
I've heard about a Dr.Anxious Kathy said:will check into Appendix Specialist
We are n NC...but will check into that. I can't even remember what he is taking...I know that is awful, but it all feels like such a whirlwind. I will check what he is on. BUT I will write down those two names and ask the Oncologist about them Wednesday! Thank you..and I pray you remain in remission!!!! What a wonderful word!!! I hope we get to use that someday too!! Thank you, Alice!!!
I've heard about a Dr. Edward Levine at Wake Forest who specializes in Appendix Cancer.
In South Carolina, Spartansburg, Dr. Ki-Young Chung is a colorectal oncologist who is an appendix cancer expert (he was my onc at Memorial Sloan Kettering until he moved to SC last year.)0 -
Sorry for slow return...chemo round was a bit muchabrub said:I've heard about a Dr.
I've heard about a Dr. Edward Levine at Wake Forest who specializes in Appendix Cancer.
In South Carolina, Spartansburg, Dr. Ki-Young Chung is a colorectal oncologist who is an appendix cancer expert (he was my onc at Memorial Sloan Kettering until he moved to SC last year.)
I will write the names down....I do believe Wake Forest is where our Oncologist is going to refer us to!! I was so excited to see your post! I do believe he must be pretty good because I keep hearing his name! They are doing a CT scan today to see if the chemo (carbo/taxol) is working. The swelling in his abdomen seems to be softer and down but the scan will finally tell us if the 5 rounds have had any success. If they have, then they prefer to do more chemo before surgery. If not, they are talking trying a different chemo mix or we may just head on into surgery. Wow...you really have to just go with the flow on this stuff...no planning.0 -
Doctor you mentioned...abrub said:I've heard about a Dr.
I've heard about a Dr. Edward Levine at Wake Forest who specializes in Appendix Cancer.
In South Carolina, Spartansburg, Dr. Ki-Young Chung is a colorectal oncologist who is an appendix cancer expert (he was my onc at Memorial Sloan Kettering until he moved to SC last year.)
The 5 rounds of chem have not helped but then again, no change either..so stability I guess is good. We will be going to meet with the surgeons at Wake Forest within a week...then we will see what they recommend. We are praying for the surgery and a better prognosis after...thank you for noting him...it made us feel a little better knowing that they are known for specializing in Appendix Cancer! May you have a blessed day!!! Kathy0 -
Heading to surgerywestie66 said:Your husband's PPC
Hi: I responded on another thread but I'll provide some info here. If the cancer originated in the appendix it is not primary peritoneum cancer but rather secondary like mine (mine came from seeding from gallbladder cancer). There is a woman on here who has been through the peritoneum stripping and HIPEC I think as a result of appendix cancer. Ovarian cancer and appendix cancer are two sources of cancer to the peritoneum that seem to respond well to the stripping and HIPEC. Gallbladder cancer hasn't responded well but I'll give it a try hopefully. There is a man on this and the colon cancer discussion board, Ray - da Beach Bum - who got peritoneum cancer from his colon cancer. So he would be a good one to talk to.
I had 12 treatments of cisplatin/gemcitibine but that didn't do much for the 6 nodules I have on the peritoneum. I have just finished 12 treatments of oxaliplatin + irenotecan + 5FU pump and that did stabilize things and shrunk some of the nodules so they are now saying I may be eligible for the stripping and HIPEC treatments (only done in Calgary here in Canada).
Keep me posted on your husband's treatments.
Cheryl
My hubby's 5 rounds of taxol/carbo did not improve his situation but it has not worsened...so they are sending us to the surgeon. He is an appendix specialist and we're relieved to hear others on here recommend him and his staff at Wake Forest. David is only 46 and he really is in pretty good health...so we have a week to get him built up on proteins and maybe a few pounds back on after the chemo loss. We are anixous to meet with them and see what they think. But we are truly glad they are not trying other things and putting off the surgery...I think it is our best chance. I'll try to update as we go...thanks for your kind thoughts!0 -
Sounds like you have a good plan.Anxious Kathy said:Doctor you mentioned...
The 5 rounds of chem have not helped but then again, no change either..so stability I guess is good. We will be going to meet with the surgeons at Wake Forest within a week...then we will see what they recommend. We are praying for the surgery and a better prognosis after...thank you for noting him...it made us feel a little better knowing that they are known for specializing in Appendix Cancer! May you have a blessed day!!! Kathy
Sounds like you have a good plan and will get info. I also have PPC but it came from the ovary. I had chemo first and then surgery. But when I was diagnosed I had a neighbor approach me who had had PPC from the appendix. He had seen ( I believe the names were) Dr David Bartlett and Dr Steven Ahrendt and they performed the surgery with HIPEC treatment at the University of Pittsburgh. He has had a good recovery and has been cancer free for 2 years and has a good chance of it not returning. I believe these doctors learned the procedure for HIPEC from Dr Sugarbaker. You may want to look up this Dr as he was (I think) the founder of the HIPEC. He is the director of the program in peritoneal surface malignancy at Washington Hospital Center.
When I was diagnosed and chosen my doctors in Cleveland Clinic I did not want to jump ship and go to Pittsburgh but it was good info to know about. You may want to just read up on Dr Sugarbaker so you can ask questions when you see the Drs at Wake Forest.
I hope this is not all too overwhelming. I just know how well my neighbor had done and wanted to share his info with you. Wishing you all the best of luck!0 -
Dr Sugarbakerlulu1010 said:Sounds like you have a good plan.
Sounds like you have a good plan and will get info. I also have PPC but it came from the ovary. I had chemo first and then surgery. But when I was diagnosed I had a neighbor approach me who had had PPC from the appendix. He had seen ( I believe the names were) Dr David Bartlett and Dr Steven Ahrendt and they performed the surgery with HIPEC treatment at the University of Pittsburgh. He has had a good recovery and has been cancer free for 2 years and has a good chance of it not returning. I believe these doctors learned the procedure for HIPEC from Dr Sugarbaker. You may want to look up this Dr as he was (I think) the founder of the HIPEC. He is the director of the program in peritoneal surface malignancy at Washington Hospital Center.
When I was diagnosed and chosen my doctors in Cleveland Clinic I did not want to jump ship and go to Pittsburgh but it was good info to know about. You may want to just read up on Dr Sugarbaker so you can ask questions when you see the Drs at Wake Forest.
I hope this is not all too overwhelming. I just know how well my neighbor had done and wanted to share his info with you. Wishing you all the best of luck!
Hi: Yes, he was the one who "invented" it as far as I know - at The Hague, Netherlands I think.
Cheryl0 -
Not Overwhelming...whewlulu1010 said:Sounds like you have a good plan.
Sounds like you have a good plan and will get info. I also have PPC but it came from the ovary. I had chemo first and then surgery. But when I was diagnosed I had a neighbor approach me who had had PPC from the appendix. He had seen ( I believe the names were) Dr David Bartlett and Dr Steven Ahrendt and they performed the surgery with HIPEC treatment at the University of Pittsburgh. He has had a good recovery and has been cancer free for 2 years and has a good chance of it not returning. I believe these doctors learned the procedure for HIPEC from Dr Sugarbaker. You may want to look up this Dr as he was (I think) the founder of the HIPEC. He is the director of the program in peritoneal surface malignancy at Washington Hospital Center.
When I was diagnosed and chosen my doctors in Cleveland Clinic I did not want to jump ship and go to Pittsburgh but it was good info to know about. You may want to just read up on Dr Sugarbaker so you can ask questions when you see the Drs at Wake Forest.
I hope this is not all too overwhelming. I just know how well my neighbor had done and wanted to share his info with you. Wishing you all the best of luck!
Thank you for your comments!!! We will find out Tuesday more information! We're getting a little anxious but the hospital just called and asked all the admitting information, so I think he's going toward surgery pretty quickly! They never give us alot of details, so we just hang on!!!! BUT, the doctors at Wake helped with some of the first developments in the US with Dr. Sugarbaker from what I've read, so they seem to be up on things! It is so nice to hear good things about your neighbor. It's amazing how much more common this rare cancer is than we thought! We are hoping the hernia was an early sign and that we might have success too! I hope you are doing well and things are under control! How long ago did you have surgery? Was if pretty major? We've heard everything from they take it out everything to they only take a few things. Either way, it's a major surgery, we know. How was your recovery? We're trying to think of all the things we need to have done for the next few months while he's down. so many things to think about and handle. But we'll get there with support and lots of prayers.
Thanks!
Kathy0 -
helloAnxious Kathy said:Not Overwhelming...whew
Thank you for your comments!!! We will find out Tuesday more information! We're getting a little anxious but the hospital just called and asked all the admitting information, so I think he's going toward surgery pretty quickly! They never give us alot of details, so we just hang on!!!! BUT, the doctors at Wake helped with some of the first developments in the US with Dr. Sugarbaker from what I've read, so they seem to be up on things! It is so nice to hear good things about your neighbor. It's amazing how much more common this rare cancer is than we thought! We are hoping the hernia was an early sign and that we might have success too! I hope you are doing well and things are under control! How long ago did you have surgery? Was if pretty major? We've heard everything from they take it out everything to they only take a few things. Either way, it's a major surgery, we know. How was your recovery? We're trying to think of all the things we need to have done for the next few months while he's down. so many things to think about and handle. But we'll get there with support and lots of prayers.
Thanks!
Kathy
This cancer is relentless. My mom is i suppose in remission. but it took forever to find. She had her surgery and she has the worst hernia now.I guess cuz of all the open space and shifting of organs. It is always changng. Hold on to the hope. At times i did not do very well, but now i see her living her life. Even if she has a year or so or more, i am glad to see that she made it through the supposive 9 month death sentence, to be back on the ball with her grandkids, working, etc. she is happy again. always scared it will be back soon, but everyday is a gift.0 -
Incisional HerniaBest Friend said:hello
This cancer is relentless. My mom is i suppose in remission. but it took forever to find. She had her surgery and she has the worst hernia now.I guess cuz of all the open space and shifting of organs. It is always changng. Hold on to the hope. At times i did not do very well, but now i see her living her life. Even if she has a year or so or more, i am glad to see that she made it through the supposive 9 month death sentence, to be back on the ball with her grandkids, working, etc. she is happy again. always scared it will be back soon, but everyday is a gift.
Hi: She likely has an incisional hernia like I have. Mine looks like I'm 7 months pregnant. It can be painful so she should wear one of those wide elastic bands around her abdomen to "hold it in". I think a lot of people get this when they have an open incision that cuts through the muscles. We use those muscles a lot, even just getting up and down. I made the mistake of picking up my little dog - big big mistake. They won't operate on it to fix it while you're on chemo.
I'm so glad your mom is doing well!
Cheryl0 -
Surgery end of MarchBest Friend said:hello
This cancer is relentless. My mom is i suppose in remission. but it took forever to find. She had her surgery and she has the worst hernia now.I guess cuz of all the open space and shifting of organs. It is always changng. Hold on to the hope. At times i did not do very well, but now i see her living her life. Even if she has a year or so or more, i am glad to see that she made it through the supposive 9 month death sentence, to be back on the ball with her grandkids, working, etc. she is happy again. always scared it will be back soon, but everyday is a gift.
Yes, it is relentless..but so glad to hear about your mom and the word "remission"!! Amazing. We are dealing with the doctors at Wake Forest Baptist...they are amazing. And they talk of hope. They measure time in years not months and no one has said anything like that. My David's goal is to see his daughter graduate high school in a few years and they said barring complications, he'll be there. They truly have inspired him to fight. The amount of tumors is between moderate and high so the surgery will be intense, but we have hope. So much to prepare for over the next few weeks, tests, etc. But we're taking on this fight. I really would like any advise for the recovery period. It sounds absolutely unimaginable! Things like what he will be able to eat, how to get him up and down, will he need a wheel chair or just a walker, anything would be appreciated!I'm thinking of buying a big foam wedge for the bed to help him get up and down, would that be a good idea?
But everyday we prepare for this is a gift. And everyday after will be a tremendous gift. Thank you and I hoping your mom continues to do well!0 -
Elastic Bandwestie66 said:Incisional Hernia
Hi: She likely has an incisional hernia like I have. Mine looks like I'm 7 months pregnant. It can be painful so she should wear one of those wide elastic bands around her abdomen to "hold it in". I think a lot of people get this when they have an open incision that cuts through the muscles. We use those muscles a lot, even just getting up and down. I made the mistake of picking up my little dog - big big mistake. They won't operate on it to fix it while you're on chemo.
I'm so glad your mom is doing well!
Cheryl
Sounds like a great idea!!! We'll get one and he will lift nothing but a feather after surgery!!!!
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Incisional HerniasAnxious Kathy said:Surgery end of March
Yes, it is relentless..but so glad to hear about your mom and the word "remission"!! Amazing. We are dealing with the doctors at Wake Forest Baptist...they are amazing. And they talk of hope. They measure time in years not months and no one has said anything like that. My David's goal is to see his daughter graduate high school in a few years and they said barring complications, he'll be there. They truly have inspired him to fight. The amount of tumors is between moderate and high so the surgery will be intense, but we have hope. So much to prepare for over the next few weeks, tests, etc. But we're taking on this fight. I really would like any advise for the recovery period. It sounds absolutely unimaginable! Things like what he will be able to eat, how to get him up and down, will he need a wheel chair or just a walker, anything would be appreciated!I'm thinking of buying a big foam wedge for the bed to help him get up and down, would that be a good idea?
But everyday we prepare for this is a gift. And everyday after will be a tremendous gift. Thank you and I hoping your mom continues to do well!
Hi: A good idea to have one on hand. I got mine at a medical distributor attached to our pharmacy. They have ones for men and ones for women (the men's are wider). He won't be able to put one on right away though as he will likely have a large incision that must heal. I'm not sure if it is a good idea to put one on if he doesn't get a hernia. Please ask the surgeon. But you can make sure he doesn't lift anything heavier than a pound of butter! He is having a bigger surgery than I had (I had both laparoscopic and then open incision) with I assume a bigger incision (his might also go side to side). I did have a hard time getting out of bed. The daily nurses I had at home to clean my incision and to change bandages taught me how to roll on to my side and get my legs down to ease the pressure on the incision. Same thing for getting into and out of a car (he won't be able to drive for awhile - for me it was 6 weeks). Make sure he asks you for help! I'm sure lots of people on this website will have great ideas.
I'm so glad he has found sensitive and caring surgeons who have given him a good prognosis. Wish all doctors could be so conscientious! Good luck with the surgery - both of you.
Cheryl0 -
Thank you for advicewestie66 said:Incisional Hernias
Hi: A good idea to have one on hand. I got mine at a medical distributor attached to our pharmacy. They have ones for men and ones for women (the men's are wider). He won't be able to put one on right away though as he will likely have a large incision that must heal. I'm not sure if it is a good idea to put one on if he doesn't get a hernia. Please ask the surgeon. But you can make sure he doesn't lift anything heavier than a pound of butter! He is having a bigger surgery than I had (I had both laparoscopic and then open incision) with I assume a bigger incision (his might also go side to side). I did have a hard time getting out of bed. The daily nurses I had at home to clean my incision and to change bandages taught me how to roll on to my side and get my legs down to ease the pressure on the incision. Same thing for getting into and out of a car (he won't be able to drive for awhile - for me it was 6 weeks). Make sure he asks you for help! I'm sure lots of people on this website will have great ideas.
I'm so glad he has found sensitive and caring surgeons who have given him a good prognosis. Wish all doctors could be so conscientious! Good luck with the surgery - both of you.
Cheryl
Thank you so much for the insight. Yes, his incision will be huge. They said no side to side unless they had to...we are learning so much daily about what we're doing! I know that getting up and down after I had back surgery was miserable, I can't imagine abdominal! I never thought of the car...that will be miserable too. I'm beginning to think we're just in for a miserable time for awhile, but we'll get through it with lots of prayer and just sheer endurance!!!
Would you think a walker would be good? Just seems like a little easier way to help hold yourself up.0
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