kris00j
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The embolization was mostly a success. There is still a slight “fluttery” leak but my onc thinks I should start using the pump with the FUDR. We are going to start Monday with a lesser amount of FUDR to see how my body handles the chemo and whether the leak is too much for me to handle. I’m a little nervous about it: I had really wanted the leaks to be gone. But I trust my onc knows what she’s doing. So we move on to the next phase of fighting!
Yesterday 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!My main oncologist (Dr. Kemeny at Sloane Kettering) seems to think the lesion is not important. She has scheduled another CT scan for Sept. 19. After thinking about it, I feel that this is probably caused by the chemo attacking a weak area of the liver. Since the chemo did such a good job in shrinking the tumor, I can’t imagine another tumor growing at this time. Dr. Kemeny says if it is still there on the 19th of Sept. we will look further to figure out what the problem is. I trust her judgement, since she is one of the best oncologists in the area when it comes to cholangioicarcinoma and other GI cancers. So I am trying not to worry about the lesion and just keep envisioning the tumor shrinking.
I have the embolization scheduled for this Thursday and am SURE it will work this time! Then a pump study and then we will start me on the FUDR thru the pump. That will help with all the side effects since I will hopefully be getting a lesser dose of the oxaliplatin during this phase of treatment.
KrisHi Julie:
I am on Gemzar/Oxaliplatin and have read that chemo brings on peri-menopause and menopause (I am 48). I have started with what I call “warm flashes”. They aren’t really hot yet, but I wake up about 2x a night being warm and have to kick off the sheets. And I get them during the day, too.
I don’t know what chemo regimen your mom is getting, but the oxaliplatin causes neuropathy. It is a tingling/numbness in the hands and feet. I get chemo every 2 weeks, and the neuropathy lasts for almost the entire time.
I don’t know if this helped or not.
Kris4 GemOx treatments and the neuropathy is getting worse. My onc is getting concerned. But on a GREAT note, my tumor has strunk from 5.4cm x 4.3cm to 4.4cm x 3.3cm!!! We are discussing my options for surgery or another embolization to try to get my body to cooperate so we can use the liver infusion pump.
I read the CT scan report after meeting with her and have a call in to find out what the “indeterminate lesion of 1.8cm x 1.1cm” on the report could be. Is this a result of the chemo? Do you get lesions from the chemo killing good cells?Well, the third chemo treatment brought a new side effect. Not only was I nauseous and actually vomited for the first time from chemo, but the anti-nausea pills didn’t control it (It wasn’t too bad, but still: it makes me realize things are going to progress). The new side effect was a little more disarming. I am left handed. Shortly after chemo, I had spasming in my hands and calves. My calves re still spasming, and it’s been since Wed. But that isn’t what concerns me. My left hand went “dead” intermittently. It would fold in on itself and I couldn’t do anything with it except open it with my right hand. But I couldn’t feel it. It would last for a few minutes then be okay for a while. This happened 3-4 times on Thurs. and twice on Friday. The Dr. seems to think it might be related to the chemo. After all, neuropathy is a side effect of the Oxilaplatin. Although this isn’t exactly neuropathy from how I understand it, I guess it’s related. But it’s kind of scary since this is only 3 treatments. If it gets much worse, I’m afraid I won’t be able to drive.
My only hope is that the CT scan on the 27th shows some progress so we can do surgery to repair my veins or remove the tumor (which would be a reach) but I sure hope we cn get my body to cooperate so I can get the pump working so I can stop with the GemOx treatment.Susan:
I count my blessings every day also. I am so lucky that my side effects so far have been minimal. I would say that 3 days of exhaustion and 1 week of not being able to eat, touch or drink anything cold is not a bad tradeoff to fighting cancer and hopefully winning.
I have a CT Scan on the 27th to see how the treatments are doing. It will be after 4 treatments, so not expecting a huge improvement, but hopefully there’s no spread of the tumor cells.
I still have some energy 10 days out of 14. Not enough to do my gardening (said gardens are starting to look like forests! UGH!) but I do still go out 2 nights a week and visit with all my dancing friends. I stay for about an hour before I’m too tired and figure I better not push it too much or I’ll be back in the hospital with something stupid. So I still have my fun, but it is very limited. I’ve decided that cancer has taken enough from me, and I’m not giving anything else up without a fight.
I figure there will come a day (hoping not, but being realistic) that I won’t have the energy to go out and try to have fun, but I’m holding onto part of my routines as long as I can.Kris
Update 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.
After 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…Maria:
Thanks for the info. And since the only thing I’ve ever really been vain about is my hair, I really don’t want to lose it! So hearing that YOU didn’t lose yours gives me hope, even tho the doc says I will.
After reading from Karen in my other posts, I really want to get things under control so we can operate again and get my infusion pump working so I don’t have to deal with the Gemox. Then hopefully I don’t have hair loss or neuropathy. I will actually be getting a light dose of chemo during the pump use, but I’m not sure if it would stay as Gemox or not. And it will supposedly be light. I know the neuropathy comes as a warning that the body can’t take any more of the oxaliplatin, so hopefully we can get me off of it before that happens.
I’m happy to hear your neuropathy is getting better. I was not looking forward to those side effects, either, as I know that can be quite painful. I hope since the neuropathy is down to 25% that it’s only annoying now and not too painful. And I really hope it continues to improve daily.
I will look into Astragalus and Ashwaganda with my onc. She wants to know before I do any “alternative” meds so I will clear it with her. But since it’s on SK’s website, she should be okay with it, I would think…
KrisKaren:
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!
KrisMarion:
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
Thanks Marions:
I will definitely talk to my onc about this. I had heard a little whisper about this, but wasn’t sure if it was “real” or a scam. I do have to worry about getting the scalp back to normal temps before the cold sensitivity sets in, but that took 1 day with my first treatment so hopefully I can discuss trying this. That seems SO COLD, tho!
I see my onc again on the 22nd for my next treatment and will post decisions afterwards. I do have a lot of hair, so if I lose a LITTLE, I would have a normal head of hair. But although I am willing to have fun with wigs, I really don’t want to lose my hair. I have decided it’s a small price to pay to live, so it would be worth it, but if the cold cap is an option, I’ll be willing to try it.Kris
After a number of weeks of trying to get the body to cooperate so I can use the liver infusion pump, we decided to start systemic chemo. Because the cancer had spread to the surrounding lymph nodes, and another surgery would mean postponing the fight another 2 or 3 weeks, I totally agreed with my oncologist. So we started me on Gemzar and Oxaliplatin. After 1 chemo treatment, I am getting a port. Veins weren’t built for that kind of abuse.
Side effects were minimal compared to what could happen. So I am very happy to have started fighting. Maybe eventually we will feel able to stop the chemo for a few weeks so I can have the surgery to try to get the pump working. It’s still frustrating that I have this weight in my left abdominal cavity that isn’t doing a darned thing, but at least treatment has begun.
I have 2 oncologists: the one at Sloane Kettering (Dr. Kemeny) and another closer one in Princeton, NJ named Dr. Lee. I’ve seen Dr. Lee the past 2 weeks, and he is hopeful that since my side effects were not too bad they shouldn’t get too much worse. There are 2 side effects I will eventually have to deal with: hair loss and neuropathy. I have LOTS of hair so am hoping I only lose some, but if need be, I’m preparing myself to have some fun with wigs. The neuropathy will occur when the Oxaliplatin is becoming too much for my system.
White blood and platelet counts already dropped considerably after 1 treatment. That makes me a little nervous for future treatments. But I keep thinking I’m young and they will bounce back before my next treatment.Friday didn’t work again. Suggestion from the radiologist is that the original surgeon has to go back in to block off a couple of arteries or veins that are too large for her. But the artery they are using to feed the catheter into the liver seems to be narrow. Don’t know if he picked a bad choice for this? I don’t like not knowing I don’t know when this next surgery will be, I don’t know if it will work, I don’t know if this pump will EVER work, and I don’t know if I will EVER get chemo started. I wonder how large the tumor is now.
I just really need some answers and for thie breatment to begin. I am getting so frustrated.
