snowbird
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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!
Judy
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.
JudyThought 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!
Judy
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!
JudyCeci – 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.
Best wishes,
JudyThanks 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!
Take care!
JudyIt’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.
JudyLadylinden, 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.
