Got both good news and scary news (HAI pump)

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VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Got both good news and scary news (HAI pump)

Postby VeggieLvr » Tue Jun 12, 2018 12:23 pm

I recently had my first scan and went to MSK yesterday for the results. My mets have shrunk so the chemo is working (thank goodness!). My CEA levels have dropped significantly (still very high, but nothing like it was). I was meant to have my fifth treatment yesterday but Dr. Kemeny wanted me to meet with the surgeon about getting a pump installed.

I asked her specifically about the fact that the pumps are no longer being manufactured, and she explained they still have a different pump they are using. So fortunately it's still an option for patients, I had been worried about that.

It was explained to me by Dr. Kemeny and the surgeon that I would be skipping my fifth treatment and instead having the pump installed early next week! Now I'm feeling anxious and scared - they are also going to do liver resection, and he said he will try to get it all but depending on what he sees it may need to be done in two surgeries.

I didn't really research the pump much, only read about how it's helped many people get to NED, and I was hopeful to be a candidate for it myself. I'm thankful that I am, but I am concerned about some things. I didn't realize I needed to have my gall bladder removed, which freaks me out - I don't want more parts cut out of me than needed! And that's an entire organ, not just a piece/pieces of it. Plus the fact that the pump is something I will be able to see and feel in my belly, just like my port - I'm super squeamish so that thought is so alarming to me. I still get creeped out by my port and don't even like to touch it, the thought of having another, larger port in my belly makes me feel super anxious. What makes it even worse is that the pump stays in place for years, because they can't remove it and then replace it if it's ever needed again. The RN told me about a man who just got his out after 10 years!

I'm just freaking out and scared. I hate getting needles at all, I hate it every time they access my port - now I will have two ports, and one will be much bigger! Don't get me wrong, I am thankful that the pump is still an option, but I wonder if it's not the best route for me with all my concerns and squeamishness. But I know the MSK team and Dr. Kemeny are doing what they feel is best for me and gives me the greatest chances for survival and hopefully NED. I'm just scared about getting through it all.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

twinzma
Posts: 2
Joined: Tue May 29, 2018 12:39 pm

Re: Got both good news and scary news (HAI pump)

Postby twinzma » Tue Jun 12, 2018 1:07 pm

Thank you so much for the news on the pump! My husband though is stubborn and thick headed and won't go to MSK. He loves his oncologist (so do I) but she is in the dark and said HAI pump is used for primary liver cancer and not mets....grrrrr. At his initial diagnosis they found 30 liver mets, way too many for resection. I pray they systemic chemo gets him there.

As far as your fear of needles and tests, it should subside. You could also try asking for a sedative. You don't want your fear to overcome your health and stress certainly is not going to help you any. My husband uses Lidocane on his port before injection and it has helped a lot, ask for a prescription. I use it for botox treatments and don't feel the needle as long as they let the alcohol dry before sticking you.

As far as the gallbladder, I have had mine out for other reasons. The only setback is that fried or fatty foods have a tendency of upsetting my stomach now. It really is a blessing in disguise though, I now avoid those unhealthy foods most of the time, I still can't give up the occasional fresh fish fry.

Best wishes and prayers your way. Hope that you find Nedsville soon.

radnyc
Posts: 296
Joined: Tue Apr 06, 2010 6:32 pm

Re: Got both good news and scary news (HAI pump)

Postby radnyc » Tue Jun 12, 2018 2:19 pm

I only have one suggestion for you: GET THE PUMP! It has saved the lives of a lot of people. Kemeny and her team will take great care of you! Gallbladders are practically a useless appendage, like your appendix. Believe me I don’t miss it one day.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

User avatar
juliej
Posts: 2852
Joined: Thu Aug 05, 2010 12:59 pm

Re: Got both good news and scary news (HAI pump)

Postby juliej » Tue Jun 12, 2018 4:30 pm

I agree with radnyc: a gall bladder is an organ you can easily live without. I have the HAI pump so my gall bladder was removed too and I don't miss it at all.

About your squeamishness about needles, ports, etc. -- it's time to pull back - WAY BACK - and look at the BIGGER picture! The HAI pump has been proven to prolong the lives of Stage IV patients and in many cases leads to a cure. "Cure" is a very powerful word so let it circle around in your mind for awhile. What would you be willing to do for the chance to spend more time with your husband, your mom, your family, experience the exhilaration of just rising out of bed each morning to another sunrise?

There were a lot of things I didn't like about my treatment and my surgeries, but I always knew it was the best chance I had of surviving. So I put on my "big girl" pants and did what I had to do. I'm not saying it's easy, but you need to dig down and find the strength to get through this. That might involve taking Ativan (ask Trish or Sandy for a prescription) or talking to a counselor about your fears. They are normal fears to be sure, but if you give into them, I think you will deeply regret it in the long run.

About the HAI pump - it's about the size of a hockey puck and made out of titanium so it's very lightweight. If you're slender like me, it makes a small lump in your abdomen, but it's not visible except in my running tights. Accessing it is simple and for some reason I don't feel the "pinch" of the needle as much as I do with the PowerPort in my chest. I can see the port in my chest all the time, but the HAI pump is pretty invisible so it's easy to forget it's there.

I don't claim to be an expert on cancer treatment, but I know this one thing for sure. I was so incredibly lucky to have had the chance to get an HAI pump and to have Dr. Kemeny bring her exceptionally brilliant mind to bear on my case. I would not be alive now if it wasn't for her. I am due to have my pump removed sometime this year because I am now a survivor - something no one would have remotely believed about me back when I was diagnosed.

I understand your fears, but take this advice from one who has walked this path ahead of you. You won't regret it one single second when they say the magic words, "you are free of cancer!" There is the stone-hard reality of what you have to go through (I had 8 surgeries in all), but the sweet joy of surviving has a way of erasing all the fear and pain. Take the leap. It's worth overcoming all your anxiety about ports, needles, etc. to beat this and the HAI pump is your best shot.

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Got both good news and scary news (HAI pump)

Postby VeggieLvr » Tue Jun 12, 2018 5:40 pm

radnyc wrote:I only have one suggestion for you: GET THE PUMP! It has saved the lives of a lot of people. Kemeny and her team will take great care of you! Gallbladders are practically a useless appendage, like your appendix. Believe me I don’t miss it one day.


Thank you radnyc, I have to say your directness in your first sentence made me laugh! Thank you for that :) And thank you for your words of encouragement, definitely makes me feel better going down this route!
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Got both good news and scary news (HAI pump)

Postby VeggieLvr » Tue Jun 12, 2018 6:42 pm

juliej wrote:I agree with radnyc: a gall bladder is an organ you can easily live without. I have the HAI pump so my gall bladder was removed too and I don't miss it at all.

About your squeamishness about needles, ports, etc. -- it's time to pull back - WAY BACK - and look at the BIGGER picture! The HAI pump has been proven to prolong the lives of Stage IV patients and in many cases leads to a cure. "Cure" is a very powerful word so let it circle around in your mind for awhile. What would you be willing to do for the chance to spend more time with your husband, your mom, your family, experience the exhilaration of just rising out of bed each morning to another sunrise?

There were a lot of things I didn't like about my treatment and my surgeries, but I always knew it was the best chance I had of surviving. So I put on my "big girl" pants and did what I had to do. I'm not saying it's easy, but you need to dig down and find the strength to get through this. That might involve taking Ativan (ask Trish or Sandy for a prescription) or talking to a counselor about your fears. They are normal fears to be sure, but if you give into them, I think you will deeply regret it in the long run.


juliej - very true, all excellent points. I have a history of anxiety so it's easy for me to get worked up about my fears - but since my diagnosis I've tried to actively work on that with meditation, mindfulness and deep breathing exercises. It's definitely helped, but it's still tough - you're right about looking at the big picture, and focusing on the word "cure". I'll be sure to keep that in mind in my tough moments.

juliej wrote:About the HAI pump - it's about the size of a hockey puck and made out of titanium so it's very lightweight. If you're slender like me, it makes a small lump in your abdomen, but it's not visible except in my running tights. Accessing it is simple and for some reason I don't feel the "pinch" of the needle as much as I do with the PowerPort in my chest. I can see the port in my chest all the time, but the HAI pump is pretty invisible so it's easy to forget it's there.


This is so reassuring! I am slender as well, which the nurses told me is why my port is so irritating. I'm really glad to hear you don't feel the needle pinch as much and that it's easier to forget the pump is there. I'm the same with seeing the port in my chest - it looks like a big cyst or something and despite having it for just over 2 months now it's still very uncomfortable.

juliej wrote:I don't claim to be an expert on cancer treatment, but I know this one thing for sure. I was so incredibly lucky to have had the chance to get an HAI pump and to have Dr. Kemeny bring her exceptionally brilliant mind to bear on my case. I would not be alive now if it wasn't for her. I am due to have my pump removed sometime this year because I am now a survivor - something no one would have remotely believed about me back when I was diagnosed.

I understand your fears, but take this advice from one who has walked this path ahead of you. You won't regret it one single second when they say the magic words, "you are free of cancer!" There is the stone-hard reality of what you have to go through (I had 8 surgeries in all), but the sweet joy of surviving has a way of erasing all the fear and pain. Take the leap. It's worth overcoming all your anxiety about ports, needles, etc. to beat this and the HAI pump is your best shot.

Juliej


Thank you so much for your words of encouragement. It helps so much and really makes me feel like I'm doing the right thing, plus you've alleviated my nervousness quite a lot! I am lucky to have Dr. Kemeny as my doctor and I know I need to trust her and everyone at MSK and not let my fears get the best of me. Your words and your story have helped me so much. :)
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Got both good news and scary news (HAI pump)

Postby VeggieLvr » Tue Jun 12, 2018 9:13 pm

twinzma wrote:Thank you so much for the news on the pump! My husband though is stubborn and thick headed and won't go to MSK. He loves his oncologist (so do I) but she is in the dark and said HAI pump is used for primary liver cancer and not mets....grrrrr. At his initial diagnosis they found 30 liver mets, way too many for resection. I pray they systemic chemo gets him there.


twinzma, you're quite welcome! And thank you for your reply. I totally get loving your oncologist, that is important, and I hope as well that the systemic chemo gets him to Ned. If he changes his mind, Dr. Kemeny has been wonderful, I can't recommend her enough.

twinzma wrote:As far as your fear of needles and tests, it should subside. You could also try asking for a sedative. You don't want your fear to overcome your health and stress certainly is not going to help you any. My husband uses Lidocane on his port before injection and it has helped a lot, ask for a prescription. I use it for botox treatments and don't feel the needle as long as they let the alcohol dry before sticking you.


They gave me Ativan during my last treatment, which did help - I haven't used it before my appointments so I will try that next time. Lidocane does help quite a bit (though I still usually feel it - I think sometimes if we are waiting too long it wears off).

twinzma wrote:As far as the gallbladder, I have had mine out for other reasons. The only setback is that fried or fatty foods have a tendency of upsetting my stomach now. It really is a blessing in disguise though, I now avoid those unhealthy foods most of the time, I still can't give up the occasional fresh fish fry.

Best wishes and prayers your way. Hope that you find Nedsville soon.


Thank you for sharing your experience, that is very reassuring. I don't blame you for treating yourself to the occasional fried food! I try to avoid fried things since I was diagnosed, but sometimes I simply can't resist. And as long as I can still eat avocados I'll be happy :D

I really appreciate your insight and kind words. I hope your husband gets to Nedville soon as well.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

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O Stoma Mia
Posts: 1363
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Re: Got both good news and scary news (HAI pump)

Postby O Stoma Mia » Tue Jun 12, 2018 9:42 pm


VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Got both good news and scary news (HAI pump)

Postby VeggieLvr » Tue Jun 12, 2018 9:54 pm



O Stoma Mia, thank you so much for this link! Much appreciated.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

zx10guy
Posts: 162
Joined: Mon Jan 07, 2013 12:54 pm

Re: Got both good news and scary news (HAI pump)

Postby zx10guy » Wed Jun 13, 2018 8:10 am

Something minor to add here. The gall bladder is not an organ. It's just a storage sack for bile that is produced by the liver. Bile aids in digestion of lipids/fats as it helps dissolve lipids/fats into solution. People do have a pretty normal life after having their gall bladder removed. But you may have to make dietary changes especially around consumption of fatty foods.

VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Got both good news and scary news (HAI pump)

Postby VeggieLvr » Wed Jun 13, 2018 2:35 pm

zx10guy wrote:Something minor to add here. The gall bladder is not an organ. It's just a storage sack for bile that is produced by the liver. Bile aids in digestion of lipids/fats as it helps dissolve lipids/fats into solution. People do have a pretty normal life after having their gall bladder removed. But you may have to make dietary changes especially around consumption of fatty foods.


Thank you for your insight zx10guy. I've been reading a bit about it and I see others mention fatty foods as well. I wonder if taking digestive enzymes prior may help with that. I know I mentioned this in another response, but I really hope I can still eat avocados!
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

radnyc
Posts: 296
Joined: Tue Apr 06, 2010 6:32 pm

Re: Got both good news and scary news (HAI pump)

Postby radnyc » Wed Jun 13, 2018 2:51 pm

zx10guy wrote:Something minor to add here. The gall bladder is not an organ. It's just a storage sack for bile that is produced by the liver. Bile aids in digestion of lipids/fats as it helps dissolve lipids/fats into solution. People do have a pretty normal life after having their gall bladder removed. But you may have to make dietary changes especially around consumption of fatty foods.

Never had any issue with this, I eat the same as before. I never ate too fatty foods though. It could just be me.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Got both good news and scary news (HAI pump)

Postby VeggieLvr » Thu Jun 14, 2018 5:29 pm

radnyc wrote:Never had any issue with this, I eat the same as before. I never ate too fatty foods though. It could just be me.


That's good to hear radnyc. I do eat fatty foods like avocado and peanut butter, but I try to avoid fried foods since my diagnosis. Although I still enjoy the occasional spring roll or vegetable tempura, so hopefully I can still eat those post-surgery every now and then!
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

mariane
Posts: 620
Joined: Sun Sep 13, 2015 6:16 pm

Re: Got both good news and scary news (HAI pump)

Postby mariane » Fri Jun 15, 2018 7:19 pm

Sorry for the late answer. I have been living with the pump for almost 3 years. Last 2 years were happy, healthy years. I was able to run with my kids and friends, I did yoga and pilates. With time I felt the pump less and less. I feel it during harder pilates exwrcises or yoga poses but it is painless. Initially I had a little bit of pain during exercises. I did even forbidden things like skiing. I don't encourage you to do it. I just want to tell that my life is almost completely back to normal. If I have usually more BMs after LAR but I gradually learnt my new normalcy and can control it fairly well with diet. My oncologist is not a supplements' fun. I take barely any. I have 2 young kids. I try to feed them relatively healthy but the food although cooked at home is sometimes too greasy... I like strawberries with whipped cream and just eat them without remorse. Kids love pizza and it is hard to avoid a slice... My liver tests look good. I try to enjoy life and just live my life without planning too much or thinking about the future as it stresses me. I got so much chemo, all the scans...I am grateful for good 3 years. I think gut flora is very important. Taking probiotics helps me a lot and hopefully strengthens immunity. Good luck!
mom of now 9 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

VeggieLvr
Posts: 53
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Got both good news and scary news (HAI pump)

Postby VeggieLvr » Sun Jun 17, 2018 12:15 pm

mariane wrote:Sorry for the late answer. I have been living with the pump for almost 3 years. Last 2 years were happy, healthy years. I was able to run with my kids and friends, I did yoga and pilates. With time I felt the pump less and less. I feel it during harder pilates exwrcises or yoga poses but it is painless. Initially I had a little bit of pain during exercises. I did even forbidden things like skiing. I don't encourage you to do it. I just want to tell that my life is almost completely back to normal. If I have usually more BMs after LAR but I gradually learnt my new normalcy and can control it fairly well with diet.


mariane, thank you for much for your reply! I'm glad to hear your last two years with the pump have been good ones. That's so encouraging that you have been able to do yoga, pilates and run - all the things I want to do! I also want to start horseback riding again at some point, but that is probably pushing it and too risky (and not something I can do anyway while I'm still getting systemic chemo).

mariane wrote:My oncologist is not a supplements' fun. I take barely any. I have 2 young kids. I try to feed them relatively healthy but the food although cooked at home is sometimes too greasy... I like strawberries with whipped cream and just eat them without remorse. Kids love pizza and it is hard to avoid a slice... My liver tests look good. I try to enjoy life and just live my life without planning too much or thinking about the future as it stresses me. I got so much chemo, all the scans...I am grateful for good 3 years. I think gut flora is very important. Taking probiotics helps me a lot and hopefully strengthens immunity. Good luck!


My oncologist is not a supplements fan either - I had started taking some before chemo started but stopped when she said she didn't really want me to. I'm glad the probiotics help you, I was always a big fan of those and may start taking them again myself as well.

I love pizza too! I'm nervous about dietary restrictions/issues after surgery and after having my gall bladder out - I try to eat healthy and have been vegan for almost 6 years now, but I do love junk food at times (especially when I get my appetite back after chemo, for some reason I always crave things like chips).

I hear you about just living your life - it's what I've been trying to do, just taking things one day at a time, but it's hard. I'm a worrier and a planner too so it's difficult for me not to stress, but I'm trying!
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)


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