Gone, gone, gone..

Options
SuzJ
SuzJ Member Posts: 427 Member

I was telling my brothers, "I still have my hair" next day.... all fall down.

Still have my taste buds, now, what's a taste bud?

Still, have an appetite... except it's gone...

 

I'm just over halfway, but this round of chemo has been really rough. I can't say "not sure how much more I can take" cos I have to go all the way.

 

Question for Cisplatin, if you switch from 1 every 3, to 1 a week, is it harder or easier?

Comments

  • MMDowns
    MMDowns Member Posts: 318
    Options
    The chemo is rough.  It's not

    The chemo is rough.  It's not like the radiation that accumulates over time. It's immediate and the side effects are tough.  I would talk to your oncologist, or oncology nurse, infusion nurses to get the ball rolling to maybe lower the dosage.   From what I am told the dosage is lower for patients that have the cisplat every week but that too will accumulate.   We were adamant that the dosage be lowered because it hit my husband hard and fast.  Other issues arose that made our case for a lower dosage possible but it helped.  He got through the second round much better than the first.   On Monday we go in for the last dose and we are again going to insist on a even lowered dosage.  The oncologist already had an idea that we were going to ask so she was prepared.  I would ask and ask again... you still need to have some quality of life while going through this.  You can do it! Halfway through!!!

  • Chicklette
    Chicklette Member Posts: 225
    edited April 2017 #3
    Options
    MMDowns said:

    The chemo is rough.  It's not

    The chemo is rough.  It's not like the radiation that accumulates over time. It's immediate and the side effects are tough.  I would talk to your oncologist, or oncology nurse, infusion nurses to get the ball rolling to maybe lower the dosage.   From what I am told the dosage is lower for patients that have the cisplat every week but that too will accumulate.   We were adamant that the dosage be lowered because it hit my husband hard and fast.  Other issues arose that made our case for a lower dosage possible but it helped.  He got through the second round much better than the first.   On Monday we go in for the last dose and we are again going to insist on a even lowered dosage.  The oncologist already had an idea that we were going to ask so she was prepared.  I would ask and ask again... you still need to have some quality of life while going through this.  You can do it! Halfway through!!!

    Cisplatin

    My husband will be having low dose every week.  I am scared of the side effects of the chemo more than the radiation ... :-/ 

  • corleone
    corleone Member Posts: 312 Member
    edited April 2017 #4
    Options

    Cisplatin

    My husband will be having low dose every week.  I am scared of the side effects of the chemo more than the radiation ... :-/ 

    Cisplatin

    I had the higher dose every 3 weeks. In his case might be much better tolerated.

     

    The worst was nausea. But this can be kept under control with proper medication (don’t forget to ask about Emend, it’s very effective). Hydration is very important (kidney toxicity), I had glucose 2L 5% iv perfusion done before actual treatment. Hearing loss – also to watch for (audiogram should to be done before and after infusions, to see if there are any issues). And of course, fatigue.

  • SuzJ
    SuzJ Member Posts: 427 Member
    Options
    I am .. exhausted. so so

    I am .. exhausted. so so tired

    All I have done this week, is sleep, nap, sleep, nap more... in between those I've been at the hospital getting radiation and infusions

     

    After todays visit, they decided instead of 2 x a week infusions to up me to 3...

  • sherylcv13
    sherylcv13 Member Posts: 23
    Options
    Cisplatin Dosage and Exhaustion

    My husband had his chemo/rads in Oct/Nov 2016.  His first medical oncologist (and I say first because he saw 5 different docs due to staffing issues at the clinic he went to) was fresh out of school and touted the lower dose once a week for the whole 7 week radiation course.  The doc said that the latest studies showed that that course worked better, particularly for older patients.  My husband, who was 69 at the time, tolerated it very well for the most part.  He received his infusions along with the saline, some steriods and anti-nausea ivs prior to the cisplatin on Mondays.  Radiation was Mon thru Fri.  On Thursdays he was totally wiped.  Fridays were better as were Saturdays and then on Sundays he was feeling his 'new normal' only to start the process again.  Anyway, all of his blood work was really good until after the 6th treatment.  His White Cells dropped so low that they had to give him Neupogen injections 3 of the days that last week in order for him to be able to get the last chemo infusion.  He has since had to have surgery as the chemo/rads only did a partial job.  That treatment got rid of the tumor on the base of the tongue but only shrunk the tumor in the anterior tongue. 

     

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited April 2017 #7
    Options
    halfway

    SuzJ,

    You can take halfway more and done. You don’t have to worry about hair, taste or appetite, just nutrition and hydration.  And maybe a small number of other things, but they shouldn’t surprise you, just take them as they come and heed what the others have said.

    Matt

  • SuzJ
    SuzJ Member Posts: 427 Member
    Options
    I can add..

    a positive gone to the list.

    Before I could cup my hand from my jaw to the back of my neck, and snugly cup the offending swelling. (Lymphs)

    well the lil b******* have shrunk down a hell of a lot, and I actually have a jaw line again...

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    Options
    And a sense of humor

    And a sense of humor.

    How's your weight doing?  About mid-way was when my melt-off started.

  • SuzJ
    SuzJ Member Posts: 427 Member
    Options
    weight

    about 20  so far, I was overweight so its not a big boo boo..

    But without weighing myself, I can tell I've lost weight, things are looser, rings are looser...

    They've changed me up next week, instead of 2x, I get ti see them 3 x... (Might have something to do with the sucky bloodwork results)

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    Options
    I lost 40, and much of it

    I lost 40, and much of it came towards the end.   When you say 3x, I am assuming hydrations (?).  Hydrations are a good thing, and weight-wise don't count much.  If you can work it into your schedule, daily hydrations can stabilize a lot of things.  I continued daily for 6 weeks post.    I'm now 14 weeks post, eat regularly, haven't gained an ounce.