violarob

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  • in reply to: MD Anderson Cancer Center patients? #28442
    violarob
    Member
    srs74 wrote:
    My mom was diagnosed with cc in last month and two surgeons at her local hospital agreed to resect. We went to MD Anderson for a second opinion and were a disappointed to find that a decision was made that resection was not an option at this time and her case was assigned to a medical oncologist rather than one of the surgical oncologists or one of the oncologists at MDA that specializes in cc. At the end of the day, my parents were not comfortable at all with the experience at MDA and we’ve ended up back with her local oncologist. I think I probably do believe that the decision to not resect at this time was the right one, but I too was disappointed that we didn’t get to see someone who truly specializes in cc.

    Any thoughts on this given your positive experience with MDA?

    Thanks.

    Dear Srs: Hard for me to comment, since I don’t know who you consulted with. There are many reasons to defer or delay a resection of the liver. If you have a diagnosis of cc, I can’t imagine why they would not refer you to one of the GI medical oncologists like Dr. Javle or Dr. Kaseb. The GI department at MD Anderson works as a team, so if they referred you to a medical oncologist, then the surgeons felt that was the best course for your treatment.

    Again, without details it is hard to comment. Can you tell the group what course of action the medical oncologist at MD Anderson recommended for you? Many members of this group have probably been through it and can tell you their experience with the therapy prescribed for you.

    I any case, you have to do what feels right for you. If you trust your local oncologist then that is worth a lot. Best of luck to you!

    Violarob in Houston, Texas

    in reply to: Experiences with Gemzar as solo agent #31101
    violarob
    Member

    Dear Irenea:

    Last spring I went on Gemzar alone as “maintenance” therapy, after very successful combo treatment of Gemzar+ cisplatin with Tarceva pill on the side. In my case, the Gemzar alone did me no good at all. I had tumor recurrence within 3 months.

    If you are ready to take the plunge into chemo, I would recommend the full Gemzar + cisplatin regimen. They are discovering that has the best result for shrinkage and stabilization of disease.

    Whatever you decide, best of luck to you!

    Violarob in Texas

    in reply to: Introduction – Sharing my Journey #31155
    violarob
    Member

    Dear Houston Mom:

    I was prescribed exactly the same regimen last year (gemcitabine + cisplatin) with Tarceva pill on the side. I got very good results from that combination, with several months of shrinkage and stabilization. My side-effects from Tarceva were minimal. The tumors were then killed with RF ablation. I would say give the Tarceva a try. You can always stop taking it if the side-effects get too hairy.

    You mention that your new tumor is 2 cm in diameter. Have your docs mentioned radiofrequency ablation as an option? That is the perfect size tumor for RF ablation. However, they do get nervous if the tumor is too close to a major blood vessel or other sensitive structure.

    I also live in Houston, and receive my care at MD Anderson. I wish you the best of luck!

    Violarob in Texas

    in reply to: Dr. Kennedy’s SIRT #30024
    violarob
    Member

    How long have you been on the Tarceva? I had some side effects in the beginning, but they lessened over a period of 3 months. If you are in the first month or so, you might want to stick with it and see if the side effects get better.

    Violarob in Texas

    in reply to: Issels Treatment Center #30296
    violarob
    Member

    Dear Rook:

    Please be careful! There are a lot of quacks out there who will prey on the confused and desperate. When I was first diagnosed, my strategy was: Investigate EVERYTHING, but decide cautiously. This web site is a GREAT place for bouncing ideas around. I think you are doing the very best thing, bringing your research here to the discussion boards to check out big claims against the personal experience of everyone here.

    Good luck to you!

    Violarob in Texas

    in reply to: review records at M D Anderson #30187
    violarob
    Member

    Hi, Gary:

    MD Anderson is very particular about the way they do things. If you want to get a second opinion from them, you must become a patient, even if it is only for one visit. However, if you do become a patient, they will bring the full resources of the entire institution to bear on your case to give you the very best answer. Commonly, people will come to MD Anderson, referred by their home oncologist for an evaluation/second opinion. MD Anderson will then give their diagnosis and craft a plan for treatment. The patient will then take that information back home and have their primary oncologist where they live implement the treatment plan. That is the system that allows patients to have their case evaluated by MD Anderson, while still having the convenience and comfort of being treated in their home town.

    Best of luck to you!

    Violarob in Texas (a current patient at MD Anderson)

    violarob
    Member

    Devoncat:

    Xeloda and oxilaplatin are also highly regarded therapeutic drugs for CC. Treatment choice has a lot to do with number of lesions, metastases, rate of growth, placement of primary lesions, etc. These treatment protocols are all new and emerging. At this point no one can say for sure that gemzar + cisplatin is superior to Xeloda + oxilaplatin, especially in your particular circumstance. It sounds like your doctor is trying to make the best choice for you personally. Good luck to you!

    Violarob in Texas (NOT a doctor, just a heavy reader! :-)

    in reply to: gemzar and cisplatin together #29052
    violarob
    Member

    Gemzar (gemcitabine) + cisplatin: I was on this combination for several months last year and had a good response; shrinkage and stabilization of all lesions (7 of them!), enough to perform radiofrequency ablation. Read Marion’s post about this elsewhere on this site. They are discovering that gemzar + cisplatin works far more effectively in combination than either drug given alone. It is also becoming common to add a third drug to this combo, like Avastin (bevacizumab) or Tarceva (erlotinib).

    Anyone out there who is on Gemzar alone, ask your onco about combining it with cisplatin!

    Violarob in Texas

    in reply to: Neulasta concerns Please Help! #29636
    violarob
    Member

    Neulasta: I had my first injection of Neulasta last week, one day after chemo (Avastin + gemcitabine + cisplatin). My choice was either accept the Neulasta injection, or skip chemo for 2 weeks. I wanted to stay on schedule, so I took the Neulasta.

    I had a low-grade fever and mild body aches for 2 days following the injection. Not bad at all, just took it easy for a couple of days. White count rebounded into the normal range and stayed there. (My platelets were not as cooperative…)

    I would say to anyone who could benefit from it, to give it a try at least once to see how you tolerate it. I think that if it allows you to stay on your chemo regimen and keep fighting, it is worth it as long as the side-effects are tolerable.

    Violarob in Texas

    violarob
    Member

    I have personal experience with this, too. I had gemcitabine + cisplatin last year, with very good result. A few months after my RF ablation procedure, they put me on gemcitabine alone as “maintenance” therapy to try to keep from having a relapse. Well, the gemcitabine alone did not do the trick; the cancer came back.

    You are right; gem + cisplatin seems to be emerging as the standard of care, (with some oncologists adding Tarceva, or Avastin or Xeloda, depending on the individual patient situation.)

    Love your posts!

    Violarob in Texas

    in reply to: Concerns about tumor markers #30113
    violarob
    Member

    About tumor markers: My onco says that the CA19-9 tests are useful to indicate trends over time. A single test doesn’t tell you enough. I have mine done every 3 weeks, and they maintain a flow chart going back over the last 18 months.

    Violarob in Texas

    violarob
    Member

    Thanks for posting this, Marion. The study was authored by Dr. Kaseb, one of the GI oncologists at MD Anderson. They are discovering that gemcitabine + cisplatin is much more effective than gemcitabine alone.

    Violarob in Texas

    in reply to: Violarob in Texas: one-year update #25006
    violarob
    Member

    Newest update:

    Not the greatest news. I had CT scans done in May, 2009. Scans showed 2-3 new lesions, but rather small, about 1.5 cm each. TUMOR MARKERS: AFP went from 0 up to 111; CA19-9 went from 26 up to 65. My onco at MD Anderson, Dr. Javle, said not to panic. Easy for him to say! I was really getting comfortable in my remission, and it was a shock to get back into “fighting mode”. Last month I started a new chemo regimen of gemcitabine + cisplatin + Avastin (bevacizumab) IV infusion every 3 weeks, with Tarceva (erlotinib) 150 mg pill every day.

    When I went through chemo last year, I was very lucky; no side effects at all. This time around is a bit rougher. A little fatigue and low-grade fever the week of infusion, but not too bad. It is getting better as time goes on. Fourth of July weekend I went swimming and kayaking, with normal energy and appetite. Yay!

    Dr. Javle thinks he can get control of the lesions since he caught them very early and very small. There are still no metastases outside the liver. We won’t know for sure until August, when I have my next scans done. He is concerned that maybe I am getting too much chemo and suggested cutting one or even two of the drugs. I told him “no way!”, that I want to continue hitting the cancer as hard as possible while I am strong. We will discuss it again next week

    If we can get control of the lesions (i.e. no growth over a 3-month period) then he is talking about some kind of targeted therapy: Chemoembolization, or radiospheres, or maybe RF ablation again. He is making no promises or definite plans for targeted therapy. He says first things first, get control of the lesions.

    Well, that’s about it for my long-winded update. Not good news, but not terrible either. I am feeling good, doing all my normal activities. Lesions are small, and no mets outside the liver. I am now 19 months after my initial diagnosis. Everyone keep your fingers crossed for me!

    Violarob in Texas

    in reply to: MD Anderson Cancer Center patients? #28439
    violarob
    Member

    Hello all: I have been absent for quite a while from the group. I will post my news in another section of the discussion board. (Unfortunately, my cancer has returned after a five-month remission.)

    To Hector (“Hecace”): You are in great hands with Dr. Curley. Since your post was dated in May of 2009, I am assuming you have already had a consultation with Dr. Javle. He is a brilliant guy, and has all the up-to-date information regarding treatment options. He is an honest guy, and is willing to share as much information as you care to handle. If you have specific questions, please e-mail me privately and I will answer as best I can.

    To “JamieD”: My chemo regimen last year was gemcitabine + cisplatin IV infusion every 3 weeks, with Tarceva (erlotinib) 150 mg pill every day. I was on this regimen for 5 months, then had radiofrequency ablation. I was off therapy for 5 months. Recent scan showed growth of new tumors, about 1.5 cm each, very small. (The old tumors, treated with RF ablation are still “dead”). My new regimen is gemcitabine + cisplatin + Avastin IV infusion every 3 weeks, with Tarceva 150 mg pill every day. However, Dr. Javle is worried this might be too much, and may delete one of the drugs. I will discuss this next Monday with him. Every patient has a different regimen because of their unique circumstances, so I would caution you not to regard someone else’s regimen as the “magic bullet”. It is good to compare, but not necessarily good to copy! If you have other specific questions, please e-mail me privately and I will answer as best I can.

    Violarob in Texas

    in reply to: Chemoemoblization cocktail #28116
    violarob
    Member

    Dear Walk:

    You are right: a tumor 10X16 is too big for RFA. If your dad is at peace with his decisions, then I hope you can find comfort in that. Many blessings to you as you continue to love and support him.

    Violarob

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