kris00j
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Devastated:
The Hepatic Infusion Pump is surgically implanted into the abdomen and a catheter is inserted into a vein/artery (I always mix them up) that leads directly to the tumor. After 3 embolizations we finally got my pump to work. It is used when the cancer is still contained to a single tumor, as far as I can tell, because it feeds the FUDR chemo directly into the tumor with very little side effects. I am still receiving systemic chemo, although it is only Gemzar now, as it was discovered that my lymph nodes were also affected. That, and the fact that it took 4 months to get the pump and my body to cooperate.
It is not widely used, nor is it often a good option, especially if the cancer has spread.
My oncologist is Dr. Nancy Kemeny, the oncologist who perfected the Codman Pump, the one that is implanted in me. There are 1 or 2 other brands that are used in various clinics, but they aren’t common.
I hope this answered your questions? I do have a thread called “Liver Infusion Pump?” if you want to read more.
KrisHi MaryJo:
I was also on oxaliplatin, but with Gemzar. My onc just took me off it until at least the end of the month when my surgeon, onc and I discuss my options.
For me, the neuropathy lasted a few days the first time. I learned to wear gloves to get stuff out of the fridge. I don’t mind room temperature drinks, so that didn’t bother me. The neuropathy builds up with each treatment. It differs with each person, so it’s hard to pin down how it will affect you. My suggestion is to go to the fridge and grab something well sealed. If your hand(s) tingle or burn you should refrain from drinking cold beverages.
My personal experience is over about 9 treatments. The first one lasted a few days. Then I was able to drink cool (not cold) beverages. Within about 5 days I was able to add ice if I wanted. I could grab things out of the fridge without my fingers tingling or burning. The second treatment was about the same, except the tingling went to more of a burning sensation. I was still able to give up the gloves within about 5 days. By the last treatment, it took longer. I wasn’t able to drink cold beverags for about 8 days. And my fingers and toes never really stopped tingling. That’s why my onc stopped oxaliplatin in my treatments.
I have a friend who knows someone on oxy, and he has the cold sensitivity but has had over 10 treatments, and his tingling goes away after less than a week. So like I said, it all depends on the person. Invest in gloves and thick socks!
I hope you can handle the oxy for as long as it takes, as I had wonderful results with gemzar/oxy treatments.Cindy: I hope you have good results with the pump, too. It was a long road to get mine working, and I have not had any scans since we got on track.
I will find out on the 26th how much more the tumor has shrunk.
I will be waiting to hear the good news from you! Maybe if we keep getting good news with the pump, it will start being used more frequently.
KrisJohanna: you are not alone with the “being out of control” feelings. I still cry every day, also. Even though my news is so hopeful.
A little about my story: My tumor is at the top of my liver. It has taken out 2 of the 3 hepatic arteries and was wrapped around my vena cava. So although it was only 5.4×4.4cm to start with, it was nonresectable. I started chemo in June. July 25 the tumor had shrunk to 4.4×3.3. By Aug. 25 it had shrunk to 4.0×2.4cm. So it is definitely going the right way and quickly. My surgeon and I are meeting on Oct. 31 (next scan Oct. 26) to discuss my options and whether they are something to think about immediately or if I still have some chemo to deal with. I hope it’s soon as the oxaliplatin is really hard on the body. And I hope to hear that the tumor has shrunk from around the vena cava. That’s the scariest part of this whole journey.
Anyway, I’ve been getting good news a lot lately, but it doesn’t stop me from crying and worrying.
I’m just hoping we can get something decided soon so I can get started on finding a job. Unemployment won’t last much longer and disability (which I have been approved for) won’t cover 1/2 the bills. So I need some schedule decided on so I can do SOMETHING!
KrisThanks for sharing Johanna. At least it is stabilized and if you don’t have any symptoms, be thankful for every “normal” day you get! I love to read the good news reports: they give me strength and hope. I will be praying that your November scan is as good as this last one!
I do not go to a cancer group, as the easiest ones for me to get to are all focused on breast cancer. While I realize that some breast cancer patients have it worse than cc patients (a good friend has had 2 breast surgeries, now it has moved to her liver and there’s little hope) it isn’t the same as going to a group off cc patients and survivors that have the same chemo stories, treatments, etc. I need to do a little more research and maybe find somewhere fairly close I can go to once in a while.
Anyway, thanks for posting the hopeful news. It is so great to hear when things are going better for people.
KrisThank you Heather for posting the good news. It gives me hope that I can beat this, too! Good luck to your dad, and I hope he sees many more birthdays!
KrisKathy: That is great news! I hope to one day be able to say this, too! Actually, my wish is that ALL of us get to say that.
Andy: I hope your procedure went well. I am waiting to hear how things are since then.
And Gavin, Marion and Lainy: I love that you respond and always try to have positive outlooks or at least sympathetic responses to everyone’s posts. It must be hard to read some of the posts. I know I read some of the subject headers and know I wouldn’t be able to get thru some of them.
KrisDr. Fong called me on Friday and wants to see me in about 4 weeks. I have to schedule a scan thru Dr. Kemeny and then he wants to discuss my options. Surgery, or freezing/burning the tumor. I just hope the news continues to be good and we can move forward.
The timeline when Dr. Fong first discussed the pump with me was about a year. I have only had 1 treatment thru the pump. And 4 months of systemic chemo. So my journey has been relatively short compared to many others. And I know that, but it’s still been a long, scary road.
Massiel: I am at Sloan Kettering right now. Maybe one of these weeks we will meet up. I will be back in 4 weeks. I “get” to go to another oncologist about an hour from my home on alternate weeks because we are now using the pump. And NYC takes me over 3 hours commute time to get here.
And carolynle: thank you for the hopeful news. So far, I think chemo has eliminated the cancer in the lymph nodes. I just hope the direct to the tumor makes it disappear completely!
I am getting occasional “twingy” pain at the tumor site, and my one oncologist says it’s probably scar tissue since the tumor has shrunk to 1/2 it’s mass. I sure hope that’s what the pain is from. And if so, I hope the pain continues until the tumor is gone.
KrisGood luck on Thursday Andy. I will pray that you have a wonderfully trouble free procedure.
And you’re right: that’s a small price to pay for being alive. So far most of what I’ve given up is my active lifestyle. I just don’t have the energy or stamina for my “old” life. But I’m learning to compensate. Just slowing down but it beats the alternative!
KrisAndy:
I am so glad you responded. I’ve only been on this site since March or April 2011 since being diagnosed myself, and hadn’t seen this. It is inspiring! My tumor is also shrinking at an amazing rate on Gem/Ox. I am not doing any “alternative” medicines, supplements or diet yet. I had surgery to prepare for my treatments but the tumor itself is not operable at present. After reading your story, I hope to not have to have surgery. I’m staying as positive and realistic as possible but your story gives me hope that I may not NEED surgery in the future.
My tumor has shrunk from 5.4×4.3cm to 4.0×2.4cm, with the lymph nodes no longer being noticeably affected. So I keep praying every day that I can have a positive outcome. After reading your story, I can hope that maybe I can get a positive outcome without another surgery! At least I know it’s possible. So I just wanted to thank you for sharing.
Krismn:
I am sorry that “my” cocktail didn’t work for your mom. I understand that it is not widely used per my oncologists. I was hoping to give you some good news and give you something to hold onto.
I pray the 5FU and irenotekin work for her. I know how hard it is when it gets so frustrating. I will keep you and your mom in my prayers. I hope you get some good news soon. I pray for a good CT scan in the near future.I posted on another topic the latest results, but for anyone who is interested in the pump aspect of my treatment, here’s the latest.
On Thurs., Aug. 25 I finally had a mostly successful embolization (3rd try). There is still a small “fluttery” leak but Dr. Kemeny waid it should be okay to try the FUDR. So on Monday the 29th we put FUDR into the pump. FINALLY! It is now Thursday and I have no side effects.
My treatment until now has consisted of systemic chemo. Gemzar/Oxaliplatin every 2 weeks. I almost didn’t want to try the pump because of how well the Gem/Ox is working. But since I’m carrying the darned thing around I figured why not try it? The tumor was 5.4×4.3cm in June when I finally started chemo. On July 25 I had a CT scan and the tumor had shrunk to 4.4×3.3cm. Unbelievable, considering it has such a good blood supply! (the tumor has taken out 2 hepatic arteries and is surrounding my vena cava, or at least it WAS). Because of the embolization I only had 1 more chemo during the month of August. I had another CT scan on the 29th and the tumor has shrunk to 4.0×2.4cm. And that’s with only 1 more chemo in the interim! And there was no mention of the Lymph node this time. Either it is now unremarkable or the radiologist forgot to mention it.
I am blown away by how much the tumor has shrunk, and not sure if I should have changed my treatment to use the pump, but since I have it implanted, I figured let’s try it. And this way I don’t have the side effects. Day 4 and I feel good. Even finally rode my motorcycle for the first time this year! I am enjoying not having the neuropathy and nausea that I get from the gemzar/oxaliplatin so hoping that switching to the pump is a good thing tumor-shrinking-wise, too!.Yes, Marion. We filled the pump yesterday and I feel great today! No side effects. Hoping that keeps up. The best part is no neuropathy or nausea!! This is great so far. I just hope the results are as good as with the oxaliplatin. I almost didn’t want to switch to the pump because the oxaliplatin is shrinking the tumor at such an amazing rate, but I figured it’s in me, why not use it?
Hi, mn. I am sitting in myy oncologist’s waiting room waiting for my pump to be filled for the first time. Finally! I have to say don’t ever give up hope. Keep fighting, and helping your Mom to want to fight.
I have to tell you about my cocktail. I am on gemzar/oxaliplatin. My tumor is in my liver, but located at the top of the liver and surrounding 2 of the 3 hepatic arteries. It also surrounds my vena cava so it has not been resectable as of yet. The Gemzar/Oxaliplatin has side effects, as do most chemo cocktails. But I have to share my results. It might help you to decide to ask your onc about these chemos.
My tumor was 5.4×4.3cm. Not very large in the scheme of things. But it had spread to my lymph nodes. I had surgery to implant a liver infusion pump on April 19, 2011. The surgery was not successful. The pump has not been able to be used yet. I have had 3 embolizations, the last one finally was successful enough to try using the pump. But the important part of my story is this:
June 10, 2011 I started systemic chemo with the Gem/Ox cocktail. I have it approx. every 2 weeks. It takes that long for some of the side effects to wear off. Since June 10, my tumor has shrunk from 5.4×4.3 cm to 4.0×2.4cm. So there is hope!
Please talk to your onc about this treatment. It might not be for your mom, but it can’t hurt to ask.Okay, people need to hear about this cocktail!!! I’ve only had 1 chemo treatment since my July 25th CT scan and the tumor has shrunk even more! It’s now 4.0×2.4cm (July 25 it was 4.4×3.3cm). I can’t believe it. My surgeon is out of the country so we can’t discuss resection yet, but it’s promising!
I think more people need to hear about this cocktail. It’s not the most pleasant: burns with regular i.v. and even with the port a little sometimes, but OMG what results.
Today we are going to try the FUDR thru the pump tho. Even tho oxaliplatin is working so well, I drove into NYC by myself so really don’t want the side effects of the gem/ox. I have too long a drive home. Hopefully FUDR works as well as the gem/ox from the INSIDE of the tumor! Keeping my fingers crossed and the prayers going.
