My fight begins on Monday

JohnnyW
JohnnyW Member Posts: 23
edited March 2014 in Esophageal Cancer #1
After almost 3 months my treatment plan begins on the 3rd,I hope I'm ready for it..After waiting over 3 weeks to get into UCSF for a second opinion everything is a go..Just got marked for radiation and will go to the infusion center Monday morning for Cisplatin and then home with a pump for a 96 hour dose of F5U..Radiation will be 30 days and the Chemo will be on the first and last week of treatment..As per my last Pet/CT scan on the 9th no nodes are lighting up so I am re-staged to 2B from 3A..It took a lot of time from being diagnosed to start of treatment but I feel confident in the doctors at UCSF..I just got home from the pharmacy after filling 7 prescriptions including Emend,mouthwash and other Nausea meds.Also I stocked the kitchen with VHC,ensure plus and Benecalorie so I can try and keep my weight up..I'm going to be in this fight pretty much by myself and Hoping I'm ready for it...I will try and update as the time goes on.

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • JohnnyW
    JohnnyW Member Posts: 23
    #3
    unknown said:

    This comment has been removed by the Moderator

    Thanks for your support
    Thanks for your support William,you do yeoman work on this forum..I'm not sure what the next part of my life journey will be but with all the caring people here I know I have all the support I will need.


    John
  • cjmac49
    cjmac49 Member Posts: 100
    #4
    If I can ... You can.
    Johnny,

    I am 2 years post diagnosis and 20 months post surgery. Chemo and Rad weren't easy BUT If I can do it... You can too.

    You've already heard from William and there are many more of us to help.

    Good luck.

    Jim
  • Jim Pilot
    Jim Pilot Member Posts: 6
    #5
    treatment
    Johnny ,plan for everything to go easy,think positive. I was diagnosed dec 09 after ultrasound endosco. stage 3 confirmed. I started 8 chemo treatments 2nd week in Jan and 28 days of radiation starting approx mar.1st. To be honest I was tired after the chemo for about 1 day, by the 2nd day it wasn't as bad. the radiation IMRT didn't effect me much. after 2 chemos I had pet scan and the tumor shrunk 30-35%. I ate mostly the same food as before and in fact after it shrinking swallowing got easier.I'm not saying it's easy but think positive. After about my 25th radiation swallowing got very hard because I was very inflamed from the radiation. I existed on soup and milkshakes for about 1 week. My doctor gave me a script for a lydercaine maalox mixture that numbs your throat and esoph.to make swallowing easier. I more or less worked through the treatment so far except for those chemo days.I am now in my 5 week wait with no treatment as you have to wait for the inflamation to go down completly. Next fri I get my Pet and Cat scan then another ultra endoscophy. best case is 100% gone ,after that surgery probably the end of may. I am 58 and am getting my treatment at Sloan Ketering NYC. Hang in there buddy and think positive!!!!!
  • Donna70
    Donna70 Member Posts: 852 Member
    #6
    Jim Pilot said:

    treatment
    Johnny ,plan for everything to go easy,think positive. I was diagnosed dec 09 after ultrasound endosco. stage 3 confirmed. I started 8 chemo treatments 2nd week in Jan and 28 days of radiation starting approx mar.1st. To be honest I was tired after the chemo for about 1 day, by the 2nd day it wasn't as bad. the radiation IMRT didn't effect me much. after 2 chemos I had pet scan and the tumor shrunk 30-35%. I ate mostly the same food as before and in fact after it shrinking swallowing got easier.I'm not saying it's easy but think positive. After about my 25th radiation swallowing got very hard because I was very inflamed from the radiation. I existed on soup and milkshakes for about 1 week. My doctor gave me a script for a lydercaine maalox mixture that numbs your throat and esoph.to make swallowing easier. I more or less worked through the treatment so far except for those chemo days.I am now in my 5 week wait with no treatment as you have to wait for the inflamation to go down completly. Next fri I get my Pet and Cat scan then another ultra endoscophy. best case is 100% gone ,after that surgery probably the end of may. I am 58 and am getting my treatment at Sloan Ketering NYC. Hang in there buddy and think positive!!!!!

    John for mouth sores
    John,
    I was on the same regimen before surgery and got terrible mouth sores, blisters etc, then they prescribed liquid Acylovir? and it cleared them up and I took it for my other chemo treatments with no sores whatsoever. so ask the dr about it because the sores are serious trouble if they get bad. You sound in a good frame of mind and if you feel dehydrated or real dizzy go in for infusions. My chemo was done in the hospital with constant Iv infusion going on. good luck!!
    Donna70
  • JohnnyW
    JohnnyW Member Posts: 23
    #7
    Donna70 said:

    John for mouth sores
    John,
    I was on the same regimen before surgery and got terrible mouth sores, blisters etc, then they prescribed liquid Acylovir? and it cleared them up and I took it for my other chemo treatments with no sores whatsoever. so ask the dr about it because the sores are serious trouble if they get bad. You sound in a good frame of mind and if you feel dehydrated or real dizzy go in for infusions. My chemo was done in the hospital with constant Iv infusion going on. good luck!!
    Donna70

    Thanks for the tip on the
    Thanks for the tip on the mouth sores Donna..When I picked up my prescriptions for nausea I also filled one for Chlorhexidine Gluconate 0.12 Oral Rinse,hopefully that will help if I develop the sores..

    John
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #8
    JohnnyW said:

    Thanks for the tip on the
    Thanks for the tip on the mouth sores Donna..When I picked up my prescriptions for nausea I also filled one for Chlorhexidine Gluconate 0.12 Oral Rinse,hopefully that will help if I develop the sores..

    John

    Welcome and know we are here for you
    Hi Johnny,
    I was a caregiver for my dad who recently passed away on 3/9/10. He had ec, which he beat, but in December he got mets to his liver. You do sound like you are in the right frame of mind. You are in a wonderful place for treatment. My dad's experience with radiation was good. The only minor side effect he had at the end of the week was being tired. He took an oral chemo, Xeloda. He did well with this too. The problem started with the mets to the liver. Long story. But.....you are at an early stage. That is a plus. Take this one hour at a time. Stay postitive, have a strong faith. Keep us posted.
    Tina
  • unclaw2002
    unclaw2002 Member Posts: 599
    #9
    Johnny,
    I read that you are
    Johnny,

    I read that you are doing this pretty much on your own. I hope you have set up some special services, perhaps with the hospital social worker, or your church or a group you belong to, or if all else fails see if you can get some home care workers or even have someone on retainer. If you face a bump in the road and are too sick to drive yourself, or you can't get out of bed, or anything like that having a contingency plan in place that you can activate is essential, consider it a disaster plan. If something goes wrong and you need to get to the hospital. or even need a little pampering one week it would be good to be able to call on a friend. My engineer daughter wanted to do an excel spreadsheet (LOL) we didn't do that but did make a plan, and even with the plan we ran into issues.

    Anyway you are brave and my thoughts and prayers and best wishes are with you. Good luck and keep pushing fluids, keep active and stay positive.

    Best,
    Cindy
  • JohnnyW
    JohnnyW Member Posts: 23
    #10
    unclaw2002 said:

    Johnny,
    I read that you are
    Johnny,

    I read that you are doing this pretty much on your own. I hope you have set up some special services, perhaps with the hospital social worker, or your church or a group you belong to, or if all else fails see if you can get some home care workers or even have someone on retainer. If you face a bump in the road and are too sick to drive yourself, or you can't get out of bed, or anything like that having a contingency plan in place that you can activate is essential, consider it a disaster plan. If something goes wrong and you need to get to the hospital. or even need a little pampering one week it would be good to be able to call on a friend. My engineer daughter wanted to do an excel spreadsheet (LOL) we didn't do that but did make a plan, and even with the plan we ran into issues.

    Anyway you are brave and my thoughts and prayers and best wishes are with you. Good luck and keep pushing fluids, keep active and stay positive.

    Best,
    Cindy

    Thanks Cindy...
    I actually
    Thanks Cindy...

    I actually have put together a sort of support group,not as good as most people but it should get me out of any jams.Also the hospital social worker has set me up for rides to treatment when and if they are needed.Thanks again and God bless you..


    John
  • jessicalla
    jessicalla Member Posts: 29
    #11
    thinking of you
    Thinking of you Johnny...hold on and know we are all rooting for you!!
    Jessica
  • cjmac49
    cjmac49 Member Posts: 100
    #12
    JohnnyW said:

    Thanks for the tip on the
    Thanks for the tip on the mouth sores Donna..When I picked up my prescriptions for nausea I also filled one for Chlorhexidine Gluconate 0.12 Oral Rinse,hopefully that will help if I develop the sores..

    John

    More on mouth sores
    John,

    My dentist sent home a care package that had all kinds of useful things for mouth care. Might be worth a call to your dentist. It sure helped during the latter days of chemo.

    Best of luck. Think positive.

    Jim
  • paul61
    paul61 Member Posts: 1,391 Member
    #13
    Chemo suggestions
    Johnny

    I am going through chemo with similar drugs, (Cisplatin, Epirubisin, and 5 FU) The first time I got infusions with Epirubisin and 5 FU I got a very sore mouth. After that my oncologist suggested I suck on crushed ice during the IV infusion. (He says Epirubisin and 5 FU tend to concentrate in the mouth tissues). Since I have started doing that no more mouth sores.

    My dentist gave me a care package with Biotene toothpaste and mouthwash. These are non abrasive products and will make your mouth feel much better than standard products.

    Also if you start to notice you are dizzy and very fatigued two to three days after your chemo treatment watch your hydration and don't be afraid to go in and get fluids. It will make you feel much better.

    I will be praying your treatment goes quickly and with minimum side effects.

    Best Regards,

    Paul Adams
    AKA paul61

    McCormick, South Carolina
  • Ellie_E
    Ellie_E Member Posts: 50
    #14
    Good luck
    Good luck tomorrow as you start your treatment. We will all be thinking and praying for you.

    Ellie

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