Liver Infusion Pump?
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September 1, 2011 at 8:16 pm #49442kris00jSpectator
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!.August 27, 2011 at 3:49 am #49472kris00jSpectatorYesterday I went for another try at the embolization to get the arteries closed off and the pump working. Then had another pump study to see how things worked out.
Today I heard from my oncologist. There’s still a small “fluttery” leak but she thinks I should try using the pump. We are going to start Monday with a lesser amount of the FUDR into the pump and see how I react to it. I’m hoping I don’t have systemic chemo so we can get a good reading on how it affects me. I’m a little concerned, since there is still a slight leak, but trust my oncologist knows what she’s doing. And I really want to start using the pump after reading how well it works when it works!
Monday I have another CT scan so we have a baseline to start with in regards to the pump. I can’t believe we are finally going to start using it!July 10, 2011 at 9:33 pm #49471marionsModeratorKris….everything crossed for a fantastic CT results. I will be thinking of you on the 27th and can’t wait to hear the great report.
All my best wishes,
MarionJuly 10, 2011 at 9:29 pm #49470jim-wildeMemberKris, I’m hoping for a good CT for you later this month. I know you’ve been through a lot this year and you really deserve a break. I’ll be thinking of you on the 27th.
Oh, and keep asking questions. Doctors are especially interested if they think you’re bright enough to understand the answers, particularly those in teaching hospitals. I have learned a lot that way about my cardiac condition, and more recently about cc. When I was hospitalized for observation several years ago in a cardiac unit, I told my cardiologist that I was visited by a group of med students for about 45 minutes. When I told my cardiologist about the visit, she said “only 45 minutes?” I think cc is a bit more challenging.
Good luck!
July 3, 2011 at 5:07 pm #49469kris00jSpectatorUpdate for me: I have 2 more systemic GemOx treatments and then having another CT Scan. I just hope and pray that the CT Scan shows some progress so I can have the surgery to close off the tumor again. I want the kind of success Karen had! My CT Scan is the 27th and I meet with the onc on Aug. 3. Then I find out what’s next on the agenda.
June 14, 2011 at 2:56 pm #49468lainySpectatorYou go girl! Ask away, that is your right and don’t feel ‘weird’ about it. It’s the domino effect you know. When you ask we ALL learn! Did you ever in your life see a Site where people would just about give anything to have surgery? Something wrong with this picture.
June 14, 2011 at 2:12 pm #49467kris00jSpectatorAfter hearing from Karen, I really want to get this pump working. When I go for chemo again on the 22nd, I will be speaking to my main onc about her timetable. I LIKE the 50% shrinkage in 10 months! That’s better than I hoped! And if I can hope for 50% shrinkage, that would make my tumor 3×3 by next spring. That might just make it operable. It gives me better hope than the gemox I’m on, as I don’t even know if the tumor is getting the gemox. Since making it a closed circuit for the pump to kill it, I don’t know if the tumor is actually getting any of the chemo thru systemic chemo. I need to ask about that, too…
My poor onc is going to be busy answering all kinds of questions next Wed.! I have a long list…June 13, 2011 at 9:20 am #49463mariaSpectatorThey found small nodules in my lungs as well on this scan a month ago. (3-4 mm) There is no proof this is cancer. It MIGHT be, but nodules like theese are often found when scanning peoples lungs. And then gone. Like said, it might be inflammation or other not dangerous things.
June 12, 2011 at 7:47 pm #49466marionsModeratorKaren, we have a few similar postings re: the adverse affects of the Gem/Cis combo. I am so sorry that you had to experience it also.
And thank you for explaining the disappearing nodule act. I am leaning toward the positive on this one and am crossing, fingers and toes for your brother-in law to be right with his opinion. Now, may the hep. pump promote a permanent disappearing act on your liver tumor.
All my best wishes,
MarionJune 12, 2011 at 5:12 pm #49465kris00jSpectatorKaren:
Thanks for explaining the pump better. As of right now my surgeon wants to reopen my incision and close off the vein leading out of my tumor. They did not see this earlier so I don’t know what happened, but having a tumor that is not a “closed circuit” does not help when dealing with the pump. That will let the chemo out into my system which would not be good. I am happy to hear someone that has good news about the pump: it gives me hope that eventually I can get it working and shrink this tumor. My tumor is only about 6cmx6cm but is also inoperable as it surrounds the vena cava. Hopefully with chemo and maybe eventually the pump we can shrink it enough that it will be operable.
I’m sorry to hear about your trials with the lungs. Unfortunately, from what I’ve read, they really don’t know what cc will do. And at least they were being careful. I know that’s not much of a comfort, but at least they aren’t ignoring potential problems. Unfortunately, that means you had to go on systemic treatment. And I’m sorry you had such problems with the systemic treatment. But at least you are back on the pump, which seems to be doing wonders! I hope to hear back from you and hear even more good news!
KrisJune 12, 2011 at 1:23 pm #49464lainySpectatorHello Karen and welcome to our wonderful family. You have certainly had an interesting journey so far but so glad for the outcome. I also want to thank you for the defining post on the infusion pump and now our members have someone to ask about the procedure and etc. You have a great fighting attitude and I wish you the very best!
June 12, 2011 at 4:01 am #49462cobbmkcSpectatorHi Marion,
It was actually fairly complicated, but essentially, they just disappeared. every scan I have something show up in my lungs, but the next scan it is gone and there is something new. the scan that caused the doctors to have me go off the pump said
Numerous enhancing pleural nodules throughout the right
hemithorax consistent with metastatic disease.Enlargement of a now moderate sized right pleural effusion,
presumably malignant. This was in August 2010 and the fluid in the pleural effusion did not show cancer.This last scan they found
” Two new ill-defined peripheral left upper lobe pulmonary nodules,
both seen on series 5, image 64, whose appearance is suggestive
of atelectasis or mild inflammation”
which everyone agrees is not cancer. These were not present 3 months ago on a scan , two other small nodules were, but they were gone on this latest scan. It just isn’t acting like cancer typically acts, tho I know that you can never tell what cancer will do.After my first cisplatin/genzar treatment, my system shut down and I ended up in ICU for 4 days. White blood cell count was so low they isolated me and gave me lots of antibiotics, and the nodules in the first scan just dissapeared, we are talking a few weeks. My brotheer in law is a pulmonary specialist and he said it was very unlikely that the nodules in my lung were cancer. But cancer doctors seemed sure it was cancer. So I can’t prove it and I do wish I had insisted on a pet scan. when I went back on the pump last week, the nurse practioner who I have always worked with agreed it probably wasn’t cancer after all. So I am speculating but I have kicked myself for not following up on it better.
Thank you for your response.
Karen
.June 12, 2011 at 3:15 am #49461marionsModeratorHi Karen….wanted to chime in and welcome you to our site. We have not had anyone explain this treatment to us before therefore, thank you for taking the time to offer such detailed description. Karen, if you don’t mind me asking how was it determined that the lung nodules are not cancerous?
Most of all though, I am happy to know that you are feeling pretty good and the side effects you are experiencing are fairly minimal.
I am wishing for continued success and am sending my warmest wishes your way,
MarionJune 12, 2011 at 1:07 am #49460cobbmkcSpectatorKris,
I am glad to see your post because I had planned to post on this treatment. My tumor was found in July of 2009. After many tests to determine what we were dealing with my surgeon determined that it was inoperable (seems like most are). At that time it was the size of a baseball (doctor’s description) about 8cm X 5cm – I couldn’t find my exact measurements. I had surgery at UCSF Helen Diller Cancer Center to implant the infusion pump and run the line to the liver in December 2009. It is tough surgery, they create a pocket for the pump and run the line thru an artery. In my case the line actually went not just into the liver, but directly into my tumor. The pump is a Medtronic SynchroMed 11 8637-40. The chemo drug is FUDR.I had the infusion pump from Dec 2009 thru August 2010. In that time my tumor shrunk to 3.9cm X2.6cm. In August 2010 my scan showed some nodules in my lungs that the doctors thought were probably cancer. I should have insisted on a pet scan, because it now appears that I have not had any cancer in my lungs, but I went on the usual cisplatin/gemzer chemo treatment until this month – my tumor did not grow on the systemic treatment, but it also did not shrink. So as of this month, I am back on the infusion, 2 weeks on the FUDR and two weeks on saline/heperin.
I did not have a lot of side effects with the FUDR, certainly not like the systemic chemo. There is some fatigue, but that is probably true with all cancer, and it is minimal. I have some sleep problems when I am on the FUDR, I tend to sleep for a few hours, up for a couple and back to sleep for couple. I did not lose any hair, but it got a funny texture – pretty minor compared with what most people go thru.
When we did this, my surgeon said this is old therapy – they hadn’t used it in years – but it has worked for me. Right now I am feeling good. I will be happy to answer any questions that I can help you with. I don’t look at this website a lot, so feel free to email me at cobbmkc@mchsi.com I am back on the pump because I felt it was a better option to shrink the tumor. Hope this helps.
I just realized that you had several other posts where you can’t use the pump, so I am sorry I didn’t notice them. But maybe this will help someone else.
Karen CaseyJune 11, 2011 at 2:55 pm #49459kris00jSpectatorMarion:
If I can try this, I’ll be the first to try something else on this site.
Hopefully this works better than the infusion pump does. Or my body, for that matter… actually I can’t say that since I got thru the first chemo treatment a lot easier than expected!
I will discuss this with my onc and get back to you. It seems like that will be SO COLD!! But going to Sloan Kettering, I would think they might have heard about the cold cap before. So we will see…Kris
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