snowbird
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Wow! That’s awesome that your husband was able to have surgery! It is the only way to cure CC so he is very fortunate! Was Dr. Fong one of the surgeons? I understand that he went to COH from Memorial Sloan Kettering in NY. He has a lot of experience with CC. At any rate, I pray for a speedy recovery and only good news in the future for your husband.
Lyrica has been working well for my husband. He initially developed neuropathy after only 3 rounds of Gem/Cis, so they stopped the Cisplatin. The neuropathy did eventually get better but did not disappear. The Gemzar was discontinued later on for other reasons. A few months later, his onc decided to start up the Gemzar again and after 1 round the neuropathy returned with a vengeance, plus he developed pneumonitis, both of which were attributed to the Gemzar. Until he tried Lyrica, he was taking 10 mg of oxycodone every 4 hours, which only helped slightly. I strongly recommend trying Lyrica.
Thanks for the info, Matt. Ron was given Lyrica while he was in the hospital and it worked wonderfully for him. His dosage was 75mg every 8 hours. He said the pain went from 7 down to 2. However, now we’re fighting with insurance to get him a script! Ron was on Gem/Cis at the start and after 3 months the neuropathy started so they discontinued the chemo. The neuropathy improved quite a bit but since they started Gem again last month, the neuropathy returned with a vengeance. Hopefully it will go away again and hopefully he can get the Lyrica soon. It sounds like you guys have tried most everything available. Ron has been only using oxycodone because he was worried about having more side effects from yet another drug. I recently heard about the electro-stimulation and wondered if it helped. Praying that Lisa soon have relief!
JudyHello, Olympic.
First of all, I’ve found out more information on Ron’s diagnosis since this last post. His actual diagnosis was “pneumonitis”, which presented as “ground glass opacity” on the CT scan. The pulmonologist told us that this is how it looks on the scan. They did every imaginable test their was to rule out infection and nothing was positive so they’re pretty sure that it was caused by the Gemzar. So…. no more Gemzar.
Okay, on the pump. It is so irritating to me why they don’t want to allow patients from out-of-state have this pump as an option! The only reason we even knew about it was because our oncologist here in AZ had worked with it some in the past. That’s a long story! So…. he sent us to MSK in NY and they agreed that Ron would be a good candidate since his cc hadn’t spread beyond the liver and 1 lymph node. He also could not tolerate any of the systemic chemo. However…. Dr. Kemeny told us that we were going to have to make a commitment to travel to NY every 2 weeks. We told her that we couldn’t do that and why couldn’t our AZ onc work with it? She finally agreed that we could come every 2 mos. I’m sure you read my previous posts on how that all turned out. I STRONGLY recommend that you try to have this pump put in. As in Ron’s case…. he had no other option. I have found out that the drug they use in the pump is not easy to get by physicians (through a distributor), but they CAN get it. The whole problem with living out of state is this…… Dr. Kemeny at MSK is the only one who works with it. She decides the chemo formula according to your blood tests and scans. The actual procedure of emptying and filling the pump is simple. I could do it myself. As our onc says, “It’s not rocket science”. But the formula apparently is rocket science. Dr. Kemeny told us that she doesn’t want to be “bothered” by getting phone calls from all these out-of-area doctors calling her every 2 weeks. I can understand her reasoning, but gosh…. can’t they get more doctors on board with this? Ron hasn’t had any scans since the pump was put in so we don’t know how well it is shrinking the tumors, but we think it is working very well…. because, he no longer has to take pain meds constantly for abdominal pain, he has his appetite back, he’s not nauseous anymore, etc. Even though Ron had all kinds of ill effects from the Gem/Cis chemo and they discontinued the Cis a long time ago, Dr. Kemeny insisted that Ron continue to get Gem in his port, along with the FUDR in his pump. His neuropathy got worse and now he has pneumonitis from the Gemzar. I think getting the Gemzar was a bad choice of her to make but she’s the doctor and who am I? Here’s my advice to you…. If you can’t move to NY, then talk to someone at MSK and find out if there is any other ONCOLOGIST besides Dr. Kemeny who works with the HAI pump. DO NOT SEE DR. KEMENY IF YOU CAN AVOID IT! If there is, see if they are willing to work with your local oncologist. Your local oncologist would need to agree to work with it also. Our onc told us all he had to do was watch a 20 min video for instructions. Then he sends Dr. Kemeny recent blood test results and she sends him back the formula to use. Every 2 months we are expected to go to MSK for new scans, which didn’t happen now because Ron isn’t cleared to travel. Now, we are moving back to ND for the summer and our onc in Bismarck is all ready to work with the pump. He’s ordered the refill kits, FUDR and watched the video. The onc here in AZ has had me watch him fill and empty the pump so that I can help the ND onc if necessary!!! So you know how easy it must be now, right? If all else fails, Dr. Kemeny would probably relent to seeing you every month and have someone local empty the pump in between. This way she would have all your blood tests and scans done at MSK. Would it be too difficult to travel to MSK once/month? The surgery is tough. Ron flew from NY to AZ on a 5 hr. flight the day he was discharged from the hospital and then back to NY again a week later. This was a grueling experience, but he got it done. There was a recent trial on this pump too, so why oh why is it so difficult for other oncologists to get on board figure out how much chemo to use in the pump? I hope and pray that you can get help! Some patients have been living for 6+ years with this pump when there were no other options! Godspeed!
JudyOh, wow! That is awesome news! My husband had the HAI pump put in at MSK the end of Feb. We will be returning to NY on May 6th for his first scan since the pump was put in. Ron has been getting only Gem in his port because of past problems (neuropathy) with the Cis, but now the neuropathy has returned with a vengeance so I suspect his Onc will discontinue the Gem also. We are praying that Ron’s results will be similar to yours!
Julie – I am curious…. did you have any other satellite tumors and if yes, how did these present on the latest scan?
Praying for continued awesome results for you!
JudyMy husband who has cc, has been told by his oncologist that anytime his temp. is over 100.5 he needs to be on antibiotics, but I’m sure this can be different for each patient. I suspect that you have an infection. Can you call the surgeon on call and have them give you a prescription for an antibiotic without them seeing you again. If not, can you go to an Urgent Care Center or would your only choice be to go to an ER? If I were your Caregiver, I would be a little concerned and if your temp goes up any higher, definitely get you to a Dr. Good luck!
Olga – your story could almost be identical to mine. My husband, Ron, was diagnosed in August of 2013, when he was 59 yrs old. He was told the same as Norbert – palliative chemo was all the doctors had to offer him, or 6 months without it. I was shocked when Ron decided to have chemo because all his life he said that if he ever had cancer he would never take chemo and he would never “go under the knife”. I’m glad that he changed his mind, and I too wondered if it was only for me. After overhearing him talk with some of his friends, I found out that it wasn’t just for me. He wanted to live longer than 6 months. Ron was so worried that the chemo would make him sicker than he already was, but he was pleasantly surprised after his 1st treatment made him feel better! The chemo started shrinking the large tumor and took pressure off his other organs from the very start. Since then there have been many ups and downs and sometimes we both wonder if going through all the bad times is worth it, but then there are the good days…… I have told Ron that he doesn’t have to go through any of this for me, that it is his decision to go forward with whatever treatments come next (they’ve had to change his chemo regimen several times due to complications). I think this is something you need to do too…. have that talk with Norbert and let him know how you feel. That way you’ll never wonder. I’m praying that everything goes well for both of you.
JudyUpdate: 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!
JudyUpon 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
JudyThanks 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!
JudyYour 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!
JudyThank 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!
