What can I expect this time?

Some of you know my story. I am really worried about second round rads with chemo. Especially when I will be alone in a hotel for a number of weeks. I had rads over the summer without chemo and it was pretty debilitating.

Can I do this alone? I know the answer is subjective but I want to know what to expect. 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited October 2016 #2
    back in the saddle

    Steven,

    This time you know ahead about the critical importance in hydration, nutrition, being proactive on side effects and medications.  It will take discipline on your part, but don’t you have a connection by phone to loved ones?  Maybe, there is a service available if you need someone to check in on you?  I think you can do it, at least the treatment part. I would be concerned about not having the energy to do the necessary things.  Are you within walking distance, where do you eat, how about a pharmacy?

    Make up a thorough list and when you satisfy all your questions, then go for it.

    Is the plan all set?

    Best of luck.

    Matt

  • stevenpepe
    stevenpepe Member Posts: 234
    CivilMatt said:

    back in the saddle

    Steven,

    This time you know ahead about the critical importance in hydration, nutrition, being proactive on side effects and medications.  It will take discipline on your part, but don’t you have a connection by phone to loved ones?  Maybe, there is a service available if you need someone to check in on you?  I think you can do it, at least the treatment part. I would be concerned about not having the energy to do the necessary things.  Are you within walking distance, where do you eat, how about a pharmacy?

    Make up a thorough list and when you satisfy all your questions, then go for it.

    Is the plan all set?

    Best of luck.

    Matt

    Hi Matt, I do have phone

    Hi Matt, I do have phone support to loved ones. I'm most worried about how the chemo will affect me. My room is within a mile from treatment so I will most likely drive. All food prep will fall on my shoulders so I'm my own best caregiver moving forward. Sometimes, that can seem a little frightening given issues with nausea and energy levels.

  • swopoe
    swopoe Member Posts: 492
    Steven,

    Steven,

    Our cancer center had social workers that would put us in touch with drivers, helpers, people to talk to, anyone like that. Does your center have someone similar in case you need on site help with the day to day stuff? My other suggestion would be to do as much as you can prep/shopping wise in the beginning while you still feel good so you don't have to do as much later. Also, make sure your nurses/docs know you will be by yourself so they can help. And all of us are only a computer away to chat. Best of luck to you.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited October 2016 #5
    good luck Steven

    good luck Steven

  • RottiesMom
    RottiesMom Member Posts: 167
    edited October 2016 #6
    What kind?

    What kind of Chemo are you getting?  I think the biggest thing is to stay on top of the nausea!  I was on Cisplatin.  I took 2 different nausea meds - Phenergan every 4 hours and zofran every 6.  Take them round the clock...set an alarm to wake up during the night.  The nausea and fatigue were the biggest things with chemo.

    Joanne

  • stevenpepe
    stevenpepe Member Posts: 234

    What kind?

    What kind of Chemo are you getting?  I think the biggest thing is to stay on top of the nausea!  I was on Cisplatin.  I took 2 different nausea meds - Phenergan every 4 hours and zofran every 6.  Take them round the clock...set an alarm to wake up during the night.  The nausea and fatigue were the biggest things with chemo.

    Joanne

    Cisplatin for me, too. I will

    Cisplatin for me, too. I will keep your advice in mind. Thank you.

  • LiseA
    LiseA Member Posts: 266
    edited November 2016 #8
    Hi Steven.  Been thinking

    Hi Steven.  Been thinking about you, and this really sucks, but I know you're going to kick cancer to the curb this rounds.

    Thats tough going it alone, but I see you got some good tips.  Why did they decide on chemo this time around?  Sometimes I worry that I should have had chemo too,  it they did zap the heck out of me, and there were the 16 boosters for clear margins.  Take care of yourself, and know we are all rooting for you.

  • stevenpepe
    stevenpepe Member Posts: 234
    edited November 2016 #9
    LiseA said:

    Hi Steven.  Been thinking

    Hi Steven.  Been thinking about you, and this really sucks, but I know you're going to kick cancer to the curb this rounds.

    Thats tough going it alone, but I see you got some good tips.  Why did they decide on chemo this time around?  Sometimes I worry that I should have had chemo too,  it they did zap the heck out of me, and there were the 16 boosters for clear margins.  Take care of yourself, and know we are all rooting for you.

    Chemo was ordered because

    Chemo was ordered because tongue cancer that jumps to the opposite side of the tumor is rare. Makes it aggressive which really scares me.

  • Sandraw
    Sandraw Member Posts: 40
    Hi Steven

    I had a weekly dose of cisplatin during my 7 weeks of daily radiation. Seemed the nausea was a problem and the last 2 weeks I was zapped of all energy, I just slept, did tube feedings, dosed up on zofran and did treatment, I had to have a blood transfusion cause my Hemoglobin got low and my rad oncologist recommended I get I.V. fluids aside from the ones I got with chemo.  I felt good a couple days after chemo but then the steroids would run their course and I would be pretty tired.

    I also had 2, 96 hour rounds of cisplatin/5fu in a fanny pack I wore at home starting 1-2 months after rad/chemo, now that stuff was just awful, got mucositis, toxic and couldn't finish the 3rd recommended dose. I would be aware of your white blood counts especially during flu season, (my labs were checked before every chemo to make sure I could tolerate it) wear a mask if you need to. Especially being out in public like you will be. I wish you the best, I think I did pretty good those 7 weeks considering the regimen. I'll be around here, let me know if I can help in any way. 

  • joannaw81
    joannaw81 Member Posts: 185 Member
    edited November 2016 #11
    Hi Steve

    Did you read my previous post under your other thread? I am sure it will be hard to be alone however remember you have all of us for the empotional support.

    You will beat this this time around, I am sure of it, just stay positive.

  • swopoe
    swopoe Member Posts: 492
    edited November 2016 #12
    My husband's cisplatin, 6

    My husband's cisplatin, 6 weeks- one dose a week, didn't give him many side effects. Just some ringing in the ears, which went away shortly after treatment ended. No nausea, no off blood counts, nothing else. I am praying that you are as lucky, Steven. You and my husband were/are both otherwise healthy young guys. Stay hydrated as you know. Will you be getting hydration along with chemo? That is really helpful. My husband got 2 liters twice a week- once on chemo day and then 2 days later. Have nausea meds on standby just in case. My husband had several kinds of nausea meds on hand, but never really used them. Get some by prescription before you even start treatment. The chemo nurses can even give you zofran via IV with the chemo. You can do this. We are all in your corner.

  • wmc
    wmc Member Posts: 1,804
    Sorry to read this Steve.

    Even tho I don't get on here as often as I did. You are still in my thoughts and prayers.

    Bill

  • Tonita
    Tonita Member Posts: 197 Member
    I would go with some of the

    I would go with some of the other advice about services available to you in your area like visiting nurses.  Also, if you have a religious affiliation (or even if you don't) many churches are quite helpful with outreach.

    I can't give advice on chemo or radiation, but I was wondering about medical marijuana for the nausea?  Is it legal where you are?  I don't think you have to smoke it necessarily either.

    By the way, where are you located?