Wait a day (or an hour), treatment will change!

Discussion Board Forums General Discussion Wait a day (or an hour), treatment will change!

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  • #45353
    kentuckyjack
    Member

    Stacey:

    Two days ago my chemo oncologist (at the same institution where you are receiving treatment) and I parted ways. His communication style is rooted in another culture than my own, and I felt that his communications reflected a possible personality conflict and a “giving up” on me as having the potential to recover from IHCC. He expected me do die, and he’d done all he could to extend my life, he needed to withdraw from his previously closer involvement with my case. At least thats how he seemed to be coming across to me more recently. Please understand that this perception is highly-emotional and possibly not a rational or reasonable reaction to either his intent or his actual treatment of me.

    That being said, I believe that both the radiation and the chemotherapy I received was the best, most effective, scientific-research-based treatment that is presently available in the St. Louis area. Nevertheless, I am proceeding to go back to St. John’s Mercy to consult with one of their oncs about further treatments. I know that even if the odds are against me, there are people there who will at least be praying for me, and at this stage that means much. I’m going to St. John’s knowing that their standing with the National Cancer Institute is not as strong as Washington University.

    You have many fine researchers in oncology at Barnes and the ground shifts in research every day. If they are changing their plans, that may mean that they are staying on top of breaking new research, or that they are consulting with more and more specialists about the challenges of your dad’s case. Dr. Meyerson in radiation oncology has been a patient and clear communicator with me, so if the picture on chemo and radiation continues to blur, you might ask for an appointment with him.

    I sincerely wish you all the very best in treatment and in your communications with the oncologists. God bless you.

    -Tom

    #45352
    jathy1125
    Spectator

    Stacie-sorry that your dad has to deal with so many “plans”, but I am proof they do know what they are doing. I had all of the drugs they are deciding on with your dad, I took Xeloda for 5 months while waiting on transplant. If I hadn’t witnessed first hand there knowledge, I would probably be considering new doctors. Trust me you are with the best!! Anytime you need reassurance of there knowledge think about me, I shouldn’t be here, not once but twice!! Feel free to call anytime (618-567-3247) or just ask them about there “miracle” Cathy Dunnagan!! Lots of prayers-Cathy

    #45351
    marions
    Moderator

    Stacey….as they say in oncology: kill the cancer and preserve the host (patient.) It sounds as if your physicians are carefully considering the options, and you appear to be working with a great team. That in itself is something so very valuable. Good luck. I hope for things to move forward now in a more expeditiously manner.
    Best wishes,
    Marion

    #45350
    highsmith
    Member

    Thanks Marion!

    I know some of it is the protocol is not set in stone and they are trying to be extremely sensitive to my dad’s anemia and blood infections. I have faith and trust in all of our team! I just wish they would pull the trigger and decide!!!

    I think we have covered three different chemo combos and four radiation combinations, so I am not sure there are many choices left!

    #45349
    marions
    Moderator

    Stacie….don’t feel sorry for getting it off your chest. This is the place to do so. We have no silver bullet for this disease therefore; you will receive varying responses from experts. Although, the Gem/Cis study, in the U K, had been the largest study ever conducted on CC patients, to this date a standard of protocol has not been established. From what we are seeing though, it appears that the majority of patients are being treated with this combination. Responses to treatments vary greatly from person to person therefore, you will continue to see other drugs (or, drug combinations) also widely used. To make things more confusing, you might want to ask the physician as to why he/she prefers one treatment over the other. Also, what type of radiation has been discussed? Hang in there. You are nearing the decision making point.
    Best wishes,
    Marion

    #4447
    highsmith
    Member

    We have been planning chemo and radiation to start next week. After two consults and seven months of back and forth, Tuesday the oncologist told us 5-FU and radiation,for five weeks, starting next Monday. Yesterday is was Xeloda, for six of seven weeks, starting Tuesday. Today it is Gem alone, for two weeks, starting Monday, to see how he reacts and then maybe at Cis for a week, then a week break, then three weeks on and then radiation. Also, due to several blood infections and MRSA, they are going to do IV infusion instead of a port, which may change by the time I finish typing, but that is the call at the moment.

    I am not holding my breathe that this will be the treatment, but these are well respected Oncologists and Onc. Radiologists and they can’t seem to make a definitive decision. I am at my wit’s end. Luckily, my dad is the very laid back, so he rolls with all this.

    I am losing confidence with every phone call. A definitive answer that sticks! would be a nice change!!

    Sorry, just had to get that off my chest!!

    Stacey

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