Update: Ron's Dr. in AZ emptied the HAI pump last week and all went well. 10 ml. of FUDR was removed, as expected, and 30 ml. of saline/heparin mix filled the pump again. Ron is now 4.5 weeks post-surgery and recovering well. He is slowly starting to gain back some of the 15 lbs. he lost after surgery and the nausea is under control, thanks to new meds. Next week Ron will start with systemic chemo (Gem) in addition to the FUDR. He still suffers from abdominal pain and neuropathy, but this is tolerable or helped with meds. The FUDR was hard on Ron but hopefully the side effects will lessen with each treatment. I know this is wishful thinking, but one must stay positive. I'm amazed when I see all of the reported numbers for the CA19-9 test. The lowest result Ron has ever had was 4500+. Last test was over 10,000! This was after 6 weeks of no chemo treatments and the last scan had showed the large tumor had grown all the way back to the original size of 10.8 cm. Previous scans indicated the chemo had knocked it down to 7.3 cm. Apparently this is a very fast growing cancer! It is so frustrating to look back and think that 4 months of chemo and suffering was all a waste and we're back to square one. We're marching on again and praying that the new chemo regimen is knocking the %^&@# out of this stuff! I think that I probably "talk" in circles.... hopefully some of you can understand what I'm trying to say. ;-)
Ron had the HAI pump "installed" by Dr. DeMatteo at MSKCC on Feb. 27th as well as having his gall bladder removed, a liver biopsy and 13 nodes removed. The surgery went well and they kept him in the hospital for 7 days, actually more like 6 days since they didn't start surgery until after 5pm. We were originally told that it would be a 4 or 5 day hospital stay, then come back 2 days later to have staples removed but that didn't happen. We already had plane reservations to fly back to AZ the evening of the 7th day. That was a mistake..... the 5 hour flight was terribly uncomfortable for my poor husband. Then we had to return a week later for a follow-up with the surgeon, staples removed and Ron's first pump injection of FUDR. One of the lymph nodes proved to be cancerous. Dr. DeM wasn't concerned at all about this.... it was the node closest to the liver and no other nodes were affected. However, Dr. Kemeny says that a recent trial indicates that in addition to the FUDR, systemic chemo is necessary. Since Ron cannot tolerate Cisplatin because of neuropathy, they will give him Gem on his off weeks from the FUDR. We finally witnessed what others have said on this site about Dr. Kemeny's attitude and behavior. Wow! Never in my life have I ever been treated so horribly by a professional! Dr. K's ended up apologizing to us, but it wasn't really sincere. Her nurse came in before we left and told us how bad she felt about how we had been treated! I seriously want to file a complaint with the hospital but I think I will have to wait until she is no longer Ron's oncologist. Sad! My sister suggested that at our next visit... have my recorder ready on my smartphone. I'm going to do this. Anyway.... back to Ron.... he continues to lose weight (45 lbs in 7.5 months) due to poor appetite and nausea. We really need to find something new to curb the nausea. I've read some suggestions on this site and we will discuss with our AZ oncologist next week. Ron went for 6 weeks without any treatment and Dr. K. says that the tumor grew in that time, which didn't surprise us. The pump was really the best option I believe and we so pray that his body can tolerate the FUDR. Today is the 4th day after FUDR. Day 1 and 2 were fine.... he was just a little fatigued, but then he is still recovering from a major surgery too. Day 3 wasn't so good... nausea and poor appetite again. Today he slept almost the entire day and was super-fatigued. No nausea, but poor appetite. I've read on this site that day 3-5 are the worst. Next week our oncologist in AZ will empty the pump. Dr. K. (against her wishes) will not see Ron again for 2 months but will consult with Dr. Choi here in AZ. It is just too hard on Ron to have to fly back and forth to NY every 4 weeks. We plan on heading back to ND in mid-May and not sure what will happen then.... we may be forced to go to NY every month during the summer. Does anyone know of any oncologists that have worked with the HAI pump in the ND or MN area? I've heard that they work with the pump at the U of MN, but it is a different brand of pump. If anyone has any suggestions, I'd love to hear from you. This website has been such a great source of information. I am so appreciative of all the people who post and especially the moderators! You are awesome!!! It must take a lot of your time, moderators, to keep up on everyone's posts. Please know that you are much appreciated! Thank you to all!
Upon recommendation from Ron's doctor, we flew to NY 2 weeks ago and were given great news from MSKCC. We met with at least 4 MD's and as many or more other professionals. New scans were done, along with blood work and it was determined that Ron would be an excellent candidate for the HAI pump. Surgeon Dr. DeMatteo will be performing the surgery on Feb. 27th, as well as removing the gall bladder, which apparently "gets smoked" from the FUDR anyway, so they remove it as a preventative measure. New scans revealed more shrinkage of the large tumor and all the small satellite spots have almost disappeared! This is all after only 4 rounds of Cis/Gem and 1 round of Gem/Ox. There has been no metastasis to other organs, which is a Godsend. Dr. DeMatteo even mentioned a strong possibility of future re-section!
This is a first! Ron is off chemo again for 4 weeks and then they will give him his first FUDR dose after the pump is up an running. Ron is feeling great and celebrated his 60th birthday yesterday (My Valentine!). Doctors initially told him he wouldn't live to see his 60th b'day if he didn't choose to undergo chemo treatments. We are so blessed that his body is responding so well to the chemo..... or is it the chemo? He has also been taking cannabis oil since the very beginning and we truly believe this is helping more than the chemo. I know there are a lot of skeptics on the oil, but it works for Ron. It also helps tremendously with his nausea and poor appetite. It doesn't seem possible that satellite tumors would just simply disappear off the scans with as little chemo as Ron has had. So.... we leave for NY in a couple of weeks. MSKCC did most of the pre-op work at our last visit, so we'll fly into NY, have surgery the next day, and then Ron will be hospitalized for 4-5 days, come back 2 days later to check incision, etc, then fly back to AZ to recuperate. 2 weeks later we'll return to NY for a checkup.... making sure the pump is operating correctly and then our AZ doctor will take it from there. Dr. Kemeny initially wanted us to commit to coming back to MSLCC every 2 weeks for pump filling. She had a hard time agreeing that our AZ doctor was capable of doing this, even though he has done this many times, has worked with a few of her other patients in the past, and says it's not difficult at all. Dr. Kemeny made a phone call to Dr. Choi to make sure! Hopefully it will be warmer in NY than the last visit 2 weeks ago! We nearly froze!!! $300/night hotel rooms for 9 nights, flight tickets, meals and other expenses will take a big bite out of our retirement funds, but it is all worth it!!!! Feeling blessed right now :-)
Thanks for your best wishes, everyone. Kris - Ron's Dr. here in AZ has been trained on how to use the pump, so hopefully, if and when he gets the pump, Dr. Choi will be able to continue all Ron's treatments while we're here in AZ. However, when we go back north for the summer... that's another story! Dr. Choi is hoping that he can convince Ron's summer onc to take the necessary training. According to Dr. Choi, all he had to do was watch a 20 minunte video! Hmmmmm. Take care everyone!
It's been a while since I've posted, even though I go in and read the new posts almost daily. It seems like I'm always too busy to post my own stories. Since my last post a lot has changed with my husband, Ron. He was diagnosed with ICC in August of 2013. After 4 cycles of Gem/Cis, his doctor stopped it due to extreme neuropathy in Ron's feet. New MRI and PET scans indicated that the cancer has not spread beyond the liver. Great news!
Ron had no treatments for about a month before he started on Xeloda. He was to take Xeloda twice daily, but only made it through 3 doses and had to stop due to extreme nausea and pain in his abdomen. At this time his Onc. decided he should see Dr. Kemeny at Memorial Sloan Kettering and sent a referral to her in hopes that Ron could get an HAI pump. It was taking too long to get an appt. with Dr. Kemeny so his Onc. started him on Cis/Ox a week ago. In the meantime, Ron was set up with an appt. to see Dr. Kemeny on Feb. 5th. (Initially they wanted him to come to NYC next week but with the Super Bowl festivities going on in that area, we opted to wait another week.) In between infusions Ron was getting hydration therapy weekly, which really perked him up.
Ron was feeling quite well for the 4 weeks that he had a break from chemo and before the last infusion of Cis/Ox. The day of the infusion he didn't feel real well, then the next two days were wonderful. He said he felt normal again. I was so elated. Then the pain and nausea set in on day 3. Ugh! He was having a hard time eating anything for the rest of the week.... just didn't have an appetite. Oxycodone 2x/day was taking care of the pain until last night. This morning he could hardly get out of bed. He had pain across his middle section, more in the intestinal region than in the liver/stomach area... but said his stomach and liver regions hurt also. I had to fight like heck to talk him into going to the dr (as usual!) and he finally relented but decided he needed a bath and shave first. It took everything he had to get into the tub and then the tears came. I have only seen Ron cry once before in all the 40 years we've known each other. It broke my heart into a million pieces. He took 2 oxycodone and within a half hour we were in the onc.'s office. He still had silent tears. The onc. wasn't sure what was going on inside and wanted Ron to go to the ER for a scope, since as an inpatient they would do it right away, vs. waiting a week to get an appt. and results. Onc said if Ron wanted to he could try hydration first and see if it helped, but if the pain comes back he must go to the ER this weekend. Ron opted to have hydration, which did indeed help.... tremendously. I believe he was dehydrated and just rundown from not being able to eat. He ate a pretty good meal after hydration but no appetite again now.
Another dose of Cis/Ox is scheduled for next Friday, then we travel to NY to see Dr. Kemeny for a consult only. We're praying that she will deem him worthy of an HAI pump and we'll be able to return to NY soon after for the surgery. He just can't seem to tolerate any of the systemic chemo and the Cis/Ox is no exception. The neuropathy is coming back and it's just too hard on his internal organs. The Oxaliplatin causes strange reactions to anything cold, which Ron must avoid at all costs. He drank some water that wasn't quite room temperature and said it felt like someone was sticking a thousand needles in his throat and neck. Anyone who puts up with all these nasty side-effects must have a strong will to live. I don't know that I could do it.
I had my only little scare a couple of weeks ago. My hematologist ordered an ultrasound of my abdominal area, thinking an enlarged spleen might be the cause of an extremely low WBC count (after all other tests were negative). What showed up shocked us both - 3 solid masses in/on my liver! An MRI showed that they were only hemangiomas and no follow up is necessary. I was scared to death, especially since one mass was 6.2 cm wide. It was a tough 3 weeks from start to finish and now I feel like I never want anymore tests done. I'm a wimp compared to what Ron is going through.
So... for anyone who tracks what's going on with ICC patients, this is our updated story. I'll write again to let you all know what Dr. Kemeny decides to do.
Re: Any tips on wearing infusion pump 24/7 (actually 24/5) (6 replies, posted in General Discussion)
What kind of pump will you be wearing? I love your bag humor, Lisa!
Your Facebook page is private. Is there any way you could post your Facebook video link here in the Forum? I'd love to see your video!
Xeloda only lasted a day and a half. Ugh! Ron was very ill from the new chemo drug... couldn't keep any food down. Doctor had Ron stop the Xeloda and come in for hydration and infusion of anti-nausea drugs. This helped tremendously but once again, Ron is not on any treatment regimen... now going on nearly 4 weeks. Plan now is to travel to Sloan-Kettering for an HAI pump to be "installed" in the abdominal area and have targeted therapy every 2 weeks since Ron has been unable to tolerate any of the systemic drugs. Ron has an appt. with his onc on Monday and hopefully the referral to MSK-NY will be expedited.
Blessings to you all for a happy and healthy new year!
Thank you, Jason for your input. I am going to ask Dr. Choi about doing a combo. Since I last posted, we were able to get a copy of Ron's PET scan report. It indicates that the tumor has shrunk by 2 cm since the beginning of August, so we are happy with that.... for now. Since they took Ron off the Gem/Cis, the neuropathy in his feet has improved greatly. This, we are extremely thankful for! Ron started Xeloda yesterday. Prior to then, it had been over 3 weeks since he had taken any kind of chemo drugs. We're praying that nothing grew by leaps and bounds in those 3 weeks. The radiologist says that there is still no activity anywhere else in the body besides the liver EXCEPT in the neck of the gall bladder. Dr. Choi told us that the cancer hadn't spread so we need to discuss this activity at Ron's next appt. on Dec. 30th. If the Xeloda continues to shrink the large tumor then Y90 is planned for March or April.
Good to hear from you, Shari. We've been thinking about you too and hoping that you not only continue to be cancer-free, but staying warm also! I'm sorry to hear that you had the flu. I have read on FB that many churches in that area cancelled services because so many were sick with the flu, but I don't think it was actually Influenza. That's the last thing you needed! Glad you're feeling better now. We sure are enjoying the beautiful weather here. Take care and enjoy the rest of your holiday. Merry Christmas!
Thanks, Lainy. I'm going to bring this up to Ron's doctor. The Banner hospitals are all covered through our insurance so I'm guessing the cyberknife procedure, if needed, would be covered. I will certainly mention Teddy if we end up with Dr. Kresl. I see that he is associated with several hospitals in the area, including Arrowhead, which is nearby.
Do you know.... is the cyberknife procedure used very often with CC? Ron's CC is only in the liver, but he has more than one area involved. It seems like a more viable treatment than chemo. Perhaps they want to keep shrinking the tumor before they use any type radiation?
Does anyone have any thoughts on 2nd line of chemo treatment being Xeloda only? I know we're limited because of the neuropathy :-(
Again, thank you Lainy for all the information you provide to everyone!!! You're a Godsend!
Here's an update on what's going on with Ron's CC. He finished his 5th round of Gem/Cis 3 weeks ago. The Dr. is stopping the Gem/Cis because Ron is experiencing moderate neuropathy in his feet. Ron has been feeling great for the last month or so (maybe because it's been 2.5 weeks since he had his last chemo) with the exception of the neuropathy. An MRI and PET scan were done last week. We have not seen the results yet, but were informed by a nurse that the cancer has not spread anywhere beyond the liver, so no change. We will find out on Monday if and how much the large tumor has shrunk since the last scan 2 months ago. Ron will be starting Xeloda next week. We are waiting for it to come in the mail. I asked the Dr. if Ron could still have the Gem, but he said he didn't think the combination would be of any advantage. Is this the norm? I have seen on this site where others receive a combination of Gemzar and Xeloda. Future plans are to try and get the tumor shrunk down more and then go with the Y90 procedure. Dr. says that Y90 is usually not recommended for a patient "with as much disease" as Ron has. The previous scan indicated the large tumor was about 9 cm wide. For now, Y90 is planned for the end of Feb. Lainy - do you know what doctors perform the Y90 procedure in the Phoenix area? Our kids will both be here for Christmas and we are thankful for that. Merry Christmas everyone!
Deborah, my husband was the same way when they first diagnosed him only 4 months ago. He went from no symptoms and healthy one day to unbearable pain and lethargy the next. I just couldn't believe how fast everything started happening. He could hardly eat anything without vomiting. Over the next 4 weeks, before his first chemo treatment, he lost 15 lbs and was sick all the time. He was NOT looking forward to chemo and all the horror stories he had heard about it. The day he had his first treatment he was just like his old self again! He was SO happy that he felt good and could eat again. I know that everyone reacts differently to the chemo, but don't be surprised if it makes Don feel better right away too. Godspeed!
Thanks for your input, Holly. I've never really heard of remission for this disease either, except from Ron's first Dr. I think he was just saying that it's possible the tumor could stop growing after enough therapy. But I know this is rare. This targeted chemo sounds more promising as far as all the bad side effects. I'll update this board when we find out more in 2 weeks.
Thought I'd give you an update on how Ron is doing. He just finished Round 4 of Gem/Cis since first being diagnosed. 2 of those rounds included 3 weeks/1 off. Last week his RBC count was super low so they gave him 2 pints of blood, which helped tremendously. All other counts have been staying pretty good. CA19-9 started out >6000 at diagnosis, climbed to >8000 and has been steadily dropping since then. Right now it's down to around 2000. His biggest complaint now is neuropathy in his feet. It has been getting worse and worse. Now his Dr. says he has to stop the Cisplatin after today's treatment. Last week he was sick for 3 days with vomiting and nausea.... couldn't even keep water down the 1st day, then on the 3rd evening it just disappeared and the next day (yesterday) he felt great. Strange! Dr. says it was probably an intestinal virus. Dr. says that the 2nd most favorable chemo regimen is also noted for causing neuropathy so he doesn't want to use that either (Oxy?). So.... next week Ron will have an MRI and PET scan to see how things look. Hopefully the cancer hasn't spread beyond the liver. Dr. wants to start targeted chemo to the liver. I'm assuming this is chemoembolization? Can anyone tell me .... is this type of treatment widely accepted as the most logical next step? From what I've read online, a Radiologist performs this procedure. How often do they do this... like once a month or something like that? I sure wish there was no neuropathy because the Gem/Cis has been working well and Ron has tolerated it well for the most part. Hope you all had a blessed Thanksgiving!
Marions, I've clicked on a couple of links that you've posted, but there is nothing there. Any ideas?
Can anyone tell me, in regards to a patient's platelet count, at what platelet level will the Dr. discontinue Chemo? Do they ever just give patients platelet transfusions so that the patient can continue with the Chemo? This is Ron's week off from Gem/Cis. (3 weeks on, 1 week off) A CBC was done yesterday and his Hgb is 7.6, RBC 2.5 and platelets 69. I thought they would give him a unit of blood since he is so very tired, but the Dr. chose not to. Any thoughts?
Keep your chin up, Mary. The Gem/Cis combo is powerful! Has anyone tried Lactolose for constipation? Ron's Dr. gave him a prescription for this and claims it works quite well. Ron has never had to use it, so I can't tell you if it works or not. Godspeed!
Thanks, Kris. We'll definitely check into this!
Ceci - I think it depends on the dose of Gem/Cis in re: to losing/thinning hair. Ron's dr. told him that his hair would fall out. The nurses that administered the chemo said that it wasn't a very strong dose so they suspected his hair would only thin out, and that's exactly what happened. Ron just finished round 3 of Gem/Cis and he still has a lot hair, but it definitely is somewhat thinner.
I have never heard of power port, so I'll have to see what info I can find on that. Ron had a port put in about 5 days before his first chemo. He has a very large bump. The last few weeks they have not been able to draw blood from his port so they have to go to his veins, which they always have a hard time with. Does anyone have any suggestions on what to do so they can resume getting blood from his port? It's very painful when they have to stick him 3 or 4 times to get blood each week. They can administer the chemo through the port and get a back flush, but no blood. The infusion lab that Ron goes to now uses a type of numbing solution that they spray from a can. It is white when they spray it on and then disappears. I'm not sure what it is.
Thanks for the replies. Yes, this is the pump Dr. Choi was talking about. He also mentioned Dr. Kemeny. While Dr. Choi has great respect for her intellect, he insinuated that she wasn't much of a people-person. Dr. Choi told us that Dr. Kemeny sees 50 patients a day and only spends 10 minutes with each one. There is a surgeon in Tucson that does this surgery also.... but he's quite new at it and says it sounds like one would want a very experienced surgeon for this.
Yes, we are definitely enjoying the AZ winter. We are so blessed to be able to spend our winters here!
It's been a while since I've updated Ron's status. Before we left ND in late October, Ron's ONC did a new CT scan. This was after only 5 chemo treatments of Gem/Cis. The scan indicates that the chemo is definitely shrinking the large tumor (now 8.2 cm), down from 10 cm from the original scan. The other small lesions have remained stable or shrunk some. This sure was great news. Although we have been happy with the treatment so far, this ONC gave us very, very little hope of Ron ever having surgery or any other treatment, other than palliative chemo. On Oct. 28th, Ron saw his new ONC in AZ for the first time, Dr. Choi at the AZ Center for Cancer Care. And wow, what a difference in attitudes! He specializes in hepatic cancer and stated that he's had 4 patients with CC in the past. He mentioned all kinds of treatments that he will offer Ron in the event that he will need them. Our heads were spinning when we left his office. Instead of being told that Ron might live another 5 years, we were told that NO ONE comes into this world with an expiration date and he will do anything he can to keep Ron alive and feeling good.
We were very impressed with Dr. Choi. He came highly recommended from my hematologist here in AZ and I can see why. The infusion lab is much different from what we were used to back in ND. Now I know that they spoiled us back home! Here there are no volunteers that bring you snacks, soda, water, ice cream, etc. At the AZCCC infusion lab, it is a community setting where all patients pretty much sit around the oval shape of the room. There is no privacy, no personal tv/headphones, and no way to dim the lights in your cubicle, which is what it was like in ND. Ron doesn't seem to mind and maybe he'll meet some new friends this way. Both places take good care of him so no complaints with this part.
Dr. Choi mentioned something that I've not heard of before..... perhaps some of you have??? He said something about a Dr. at Sloan/Ketterling in NY has invented some type of pump that they surgically place in the abdomen. He mentioned that there are only 3 doctors in the US that have been trained to do this surgery. One of those doctors is in Tucson, but Dr. Choi said that it is a very touchy surgery and he would recommend going to S/K if we would opt to have this surgery. He mentioned something about "finances" so I'm sure the procedure is not covered by insurance. I am going to have to ask more questions about this next time we meet. We were just so overwhelmed with everything he was telling us at that first consultation that neither of us could remember what it was called. He talked about emobilization, radiation, etc.
Ron has been doing quite well with the Gem/Cis treatments so far. Last week after we flew from ND to AZ he ended up having nausea for 3 days, before he had his next chemo treatment (last Friday) and he's been good ever since. He's been fighting a head cold for about 10 days now and is almost over that. This really threw him for a loop. It seems that he feels great on days 1-3 or 4 of chemo and then exhaustion sets in. So far he has never experienced any jaundice but he has some itching on his lower extremities. So overall, he's handling the cancer and chemo quite well. His liver enzymes are normal now, but the CA 19-9 is still quite high. Hgb has been staying steady around 9.0. He's had 2 shots to boost his WBC count and platelets haven't been affected so far.
Dr. Choi's plans are to continue the chemo treatments for 4 more weeks with one week off in between and then do all new scans, including a PET scan. Then we'll see what he has in mind. Could be a merrier Christmas than what we expected!
Mark - My husband, Ron, who was diagnosed with CC only 2 months ago, has been undergoing chemo treatments of Gem/Cis and it has been working very well for him. We have been told that the tumor IS shrinking, so don't be discouraged if you read that this treatment hasn't worked for someone else.
Ron will be having new scans done in 2 weeks and we are looking forward to seeing some positive results! Take care.
Ladylinden, my husband is stage 4. No other organ involvement besides the liver. You can read all the details under the new member section. Dr told Ron that his cancer cannot be cured and if he chose not to have chemo he would only live 6 months or so. CC is a very fast growing cancer! Ron started gem/cis and has been doing great..... much improved. Before chemo he was nauseated and had abdominal pain. Now that is gone and his tumor is shrinking. He has new scans in 2 weeks. I strongly recommend starting treatment.