Discussion Board Forums Introductions! Newly Diagnosed

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  • #75817
    kris00j
    Participant

    Judy, sorry Ron is having such issues.
    The surgery was pretty big when I had it done, but I had gallbladder out and lymph nodes, too. The treatment is easy… Empty out the pump and refill… It takes 5-10 min. If he gets Gemzar in addition, that will be the longest part. The steroids cause sleep and weight issues, but that’s minor compared to other effects.
    I hope he gets the surgery, it is successful, and he can have lots of FUDR treatments, as I believe it kicks tumor butt!
    Please keep us informed. You may want to start a new thread in the General Discussion area.

    #75816
    willow
    Participant

    Judy,
    Thinking of you and hoping the targeted chemo/HAI pump is gentler on Ron. It is frustrating to have side effects preventing the chemo. My sister had problems w gem Cis, tolerated Xeloda and now is having trouble keeping counts high enough to have Taxol. Glad to hear there’s another option for getting the meds where they need to go. Best wishes to Ron in the new year!
    Willow

    #75815
    marions
    Moderator

    Judy….so good to hear that another game plan is in place for Ron and that you can enjoy the New Year chemo-free. Looking forward to hearing about the upcoming Oncology appointment.
    Hugs,
    Marion

    #75814
    lainy
    Participant

    Dear Judy, so sorry about everything going on. I am relieved though that you will be going to MSK and wishing you the best outcome! Also wishing you a much healthier New Year!

    #75813
    snowbird
    Member

    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!
    Judy

    #75812
    snowbird
    Member

    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!

    #75811
    sharimay
    Member

    Judy,

    I’m glad that Arizona is agreeing with you! My PET scans are continuing to improve. Weather here in ND has been cold. I ended up with influenza A a week ago or so, and man did that throw me. I’m feeling much better now. I have been keeping you in my thoughts and prayers. Merry Christmas!

    Shari

    #75810
    jscott
    Member

    Judy,

    I think they do y90 for pretty large tumors, but it might depend a bit on where it is situated. At diagnosis, my wife had a number of tumors, the largest of which was 9cm. The plan at the time was to use y90 if chemo did not work. I don’t think size would necessarily prevent the procedure in Ron’s case.

    As far as combining gem and capecitabine (xeloda), there has been some research on the combinations. This chart has references to lots of the chemo trial research:

    http://www.discoverymedicine.com/Daniel-M-Geynisman/files/2012/08/discovery_medicine_no_74_daniel_v_t_catenacci_table_1.png.jhtml?id=2

    GemCape and Gem/5FU are the ones relevant for your question. It looks to me like the combination does have a reasonably good response profile.

    Hope that helps,

    Jason

    #75809
    lainy
    Participant

    Judy, on Cyberknife, the tumor must be under 7cm. T’s was 7cm so he had to have 5 weeks of radiation to get it right under 6cm. The radiation was not bad he just got very tired at the end for about 2 weeks. Then he was fine. Then they waited another month to let the radiation work and then he had the Cyber Knife. The C.K. only took 4 sessions and was done in one week. The only side effect he had was tiredness. They would give him something for nausea but fortunately he never got sick. It is a miracle if it can be done. Marion posted quite an article on C.K. today that made me feel so good as it validated for me once again that we did all we could. If you can Google Cyber Knife and it will tell you a lot about it. It is a newer treatment and quite interesting. I got so excited when I saw all the fabulous things they said about Dr. Kresl. He is honest and upfront. I used to laugh a little as he is a tall man and T was 5’5″ and he would pull his little stool right up to T and I called them Mutt and Jeff. Oh I almost forgot I believe there cannot be a mass of tumors or they cannot do it. Guess it works best on 1 tumor. At least I think that was it. It actually started out for brain cancer. Good luck and please let me know.

    #75808
    snowbird
    Member

    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

    #75807
    lainy
    Participant

    Sorry, it took a little time to research. I GOT HIM! THE BEST

    His name is Jon Kresl and he did Teddy’s radiation and CYber Knife.

    Google Phoenix Cyber Knife & Radiation ONC Center

    There are few on there but he is the absolute best!!!!

    Y-90 is done at 3 hospitals all in the Banner Network (mine)

    602.441-3845 If you get in please mention Ted Sardina who had Cyber Knife with him. He is not only a great ONC Rad he has a kind bedside manner. I believe he is at Banner Good Samaritan downtown. Actually he is head of the department.
    Good luck and please let me know.
    Have a wonderful Christmas with the family and if you ever want to meet let me know.

    #75806
    snowbird
    Member

    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!

    #75805
    snowbird
    Member

    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.
    Judy

    #75804
    holly22a
    Member

    Hi Judy!

    I was diagnosed Oct 2012 and did 4 rounds gem/cis and had great shrinkage. But the truth is that once there are mets to the liver they will always be waiting. I did y-90 and resection surgery last February and blasted every tumor out of there. But about 7 months later I have a whole new “crop” of little tumors. That’s what the problem is with this disease. I don’t think I have ever heard of it going ‘INTO REMISSION’ but maybe someone out there knows more about that. The main thing to do is try to keep your general health up, the tumor burden down, and keep the cc from going anywhere else. But sadly, mets to the liver mean it is microscopically all through the liver already. Chemo regimens can work from months to years depending on the person and there are different kinds, radiation can kill and shrink tumors, and surgery can de-bulk the liver of tumors. The newest things and no doubt the wave of the future are the targeted therapies that try to get in the tumor’s way of growing and building its blood supply, or just growing in size,……or things that actually work with the body’s immune system. There are lots of clinical trials, but we are just not quite there with a cure yet, though ever-hopeful for a miracle……. Holly

    #75803
    snowbird
    Member

    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!

    Judy

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