Some questions and update

Discussion Board Forums General Discussion Some questions and update

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  • #50009
    lourdesalicia
    Spectator

    Thanks for your your husband’s experience Peony. We are expecting both meds on the same day as well, but we were not told of going in the following day. The schedule for my dad is expected to be 2 weeks on, one week off ~ and now the plan is also to do chemo embolization (were informed this past Friday of another treatment option) after the first round of systemic chemo.

    My thoughts and prayers are with you and your husband during your journey,

    Lourdes

    #50008
    peony
    Member

    Lourdes, my husband is on gem/cis. Although I believe everyone responds differently I’ll be happy to share his experience with you. He receives both chemos the same day which usually lasts from 8:00 am – 6:00 PM. He is usually very tired the first day because he gets large doses of benydryl. The following 2 days he goes in for several hours a day for fluids. He is usually under the weather for the enitre week.
    Experiencing nauseu, constipation and body aches.
    Luckily he is off chem for 2 weeks after that and has an opportunity to regain his strength and enjoy life.

    Good luck to your dad. Prayers coming your way.

    Peony

    #50007
    lourdesalicia
    Spectator

    Thank you everyone…I will keep you posted on chemo stuff and I’m sure I will be back with more questions.

    #50006
    lainy
    Spectator

    Gavin, thanks at least it tells me what has to be done.

    #50005
    gavin
    Moderator

    Lainy,

    Mark’s webinar about seting up a support group is here –

    http://vimeo.com/20153240

    Love ya,

    Gavin

    #50004
    marions
    Moderator

    Lainy…..I will call you.
    Hugs
    Marion

    #50003
    lainy
    Spectator

    I would love to start a group here. This site got me through the last 5 years, was by my side through Teddy’s passing and I get such gratification here, I feel compelled to pay it forward. How do I listen to the recording? Marion, been kind of out of it lately, had a PET yesterday, ONC moved it up to now instead of June.
    Waiting now for word from his office. Some symtoms I had before.

    #50002
    marions
    Moderator

    Lainy….this is long overdue and has been a goal of the foundation from the day of existence. Would you like to become in involved with this? Had you listened to Mark Stephens recording? He has been our pioneer. We can use the guidelines set by him and move on from there.

    #50001
    lainy
    Spectator

    Marion, Lourdes brings up a great subject. Could you or a member of the Board tell us how to go about setting up a local support group. Also how we would go about finding local CC patients and Caregivers. Thanks

    #50000
    marions
    Moderator

    Lourdes….additionally you might want to use the Google search function on our site. (Top, right.) Simply enter Gemzar Cisplatin and many postings will appear. Gemzar has a tendency to cause hiccups. Tom had mentioned to use an old remedy: a spoonful of sugar. This helped Ben. It may very well be for your Dad to be sailing right through his treatments however, please reach out to us if things don

    #49998
    jennifers
    Member

    Hi Lourdes,
    That is the combination Dad was on. I believe (and if my Mom reads this she may be able to add more), that the first few days he felt okay (I think because of the meds that gave to counteract the chemo, possibly including a steroid), and then a few bad days when the meds wore off. He was definitely tired after the first couple of days, and spent a fair bit of time sleeping. He did not lose his hair, and I don’t remember him being sick at all, although, again, he was on anti-nausea medication that would have helped with that.

    Good luck to your Dad with his chemo – I hope it goes well, and the side effects are minimal!!

    Jen

    #49999
    jim-wilde
    Member

    Lourdes, I had six months of Gemzar (2 wks on/ 1 off) and I had one tired, not too great day/night, then OK until the next infusion. Not sure what Cis adds to the mix. Maybe Marion can add about the support group question, but my guess is there’s probably not enough of us CC people locally to form a group. I’ve exchanged emails and had phone calls with a few people that were sort of local, but none really nearby.

    I’m sure others with more similar chemo experience will chime in. Good luck.

    #5073
    lourdesalicia
    Spectator

    Hello everyone ~

    I wanted to thank everyone for their information on my last post. Haven’t been on in a while trying to get things going. We got a second opinion at UCLA, which I was disappointed in ~ but what can you do. Sticking to current doctors, who haven’t seen a lot of CC patients, but she seems to be up to date on her information which gives us a vote of confidence.

    My dad is supposed to start chemo next week (combination of Gemcitabine and Cisplatin) and we were told it will take about 4-5 hours. Does anyone have any suggestions on what to expect on this drug combination? We’ve read side effects and were told that Gemcitabine causes a lot of fatigue so trying to be prepared for that…

    My other question is if anyone knows of support groups for CC specifically. We are in Southern California and I don’t seem to find much. If anyone knows of anyone in the same vicinity or of groups that would be great. I am the one that generally stops by this site to soak up information, which is wonderful by way!

    ~Lourdes

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