Tolerating treatment

jomoore60

Scared of outcome

Going for MRI tomorrow mourning. ultrasound says it's a 8 cm solid mass on left kidney, and 3 small cysts on the right one. I have read so much stuff that's out there don't know what to think. would love to hear from others.

 

ImNotDeadYet

foxhd said:

I hated votrient the most

but cabo should have been worse. I wish I had tried reducing dosage back then. Maybe it wouldn't have been so bad and still have been effective.

I guess it's different for everyone

I hear from some that they tolerate Votrient better; for others it's Sutent; and for others, Cabo. I hope the Votrient works. I'm not looking forward to another set of initial side effects  Though I know it's likely inevitable at some point. How were the  Nivo  SEs? Were they as bad as Votrient?

ImNotDeadYet

Deanie0916 said:

Hey

Gary hope your side effects will lessen and you will find a diet and routine that helps you out. I am thinking of you and praying too. I haven't had any mets up to this point so don't have advice just well wishes to you. 

Thank you, Deanie!

I appreciate your kind words and checking in. I hope you stay met-free! That's definitely a better way to go  

canadiancruiser

Starting Voltrient

Hello.. I am worried about starting Voltrient on Tuesday the 25th Sept..Not sure but I was thinking of starting it at night as it would give me an extra day of feeling normal..LOL everyday counts..I want to thank you all for the input as I have been reading to see what I will need to make my life a little easier..I was wondering how long does it take for S.E to start...  Good luck to all

rhominator

canadiancruiser said:

Starting Voltrient

Hello.. I am worried about starting Voltrient on Tuesday the 25th Sept..Not sure but I was thinking of starting it at night as it would give me an extra day of feeling normal..LOL everyday counts..I want to thank you all for the input as I have been reading to see what I will need to make my life a little easier..I was wondering how long does it take for S.E to start...  Good luck to all

If memory serves....

It's been awhile, so my memory is a little hazy, but I think it was within two weeks...

ImNotDeadYet

canadiancruiser said:

Starting Voltrient

Hello.. I am worried about starting Voltrient on Tuesday the 25th Sept..Not sure but I was thinking of starting it at night as it would give me an extra day of feeling normal..LOL everyday counts..I want to thank you all for the input as I have been reading to see what I will need to make my life a little easier..I was wondering how long does it take for S.E to start...  Good luck to all

SE onset can vary

Before I started the Votrient, the oncologist told me it usually takes a week or two before side effects start. I began at 800 mg, which is the full/recommended dose. By day three, I had intense GI side effects: major gas, diahrrea, gas, GI pain, and did I mention gas? I was also feeling fatigued easily. They quickly lowered my dose to 600 mg, which has been more tolerable. I  have tried a couple of things for the GI that didn't really help (Famotidine and another similar reflux med). About two weeks ago I started taking pantoprazole. While it's for reflux, it has had other benefits. I still have gas and diahrrea, but not as bad as before. And some days are better than others. I was having nausea pretty regularly, but now it's not happening as much with the pantoprazole. 

As far as other stuff, my hair started gradually turning white after the first month or so. I've been on it seven months now, and my hair is almost completely white; the brown streaks are barely visible. I did get a mouth sore after a month or two, but that eventually went away; I'm not sure how, but it's gone now. The fatigue can vary from day to day. I may have a couple of days in a row when I'm doing stuff and being somewhat productive. That is usually followed by a day where I need to sleep for more than half the day. Sometimes those tired days happen in succession - sometimes they I go a few days without too much fatigue. I do get worn out more quickly than I used to, so I've been making adjustments along the way.

I hope some of this was helpful, canadiancruiser. Feel free to PM me if there's anything you want to ask, or if there's anything I can do. You can do this. Just keep reminding yourself that it's better than the alternative. Best of success with your treatment!

Gary

canadiancruiser

ImNotDeadYet said:

SE onset can vary

Before I started the Votrient, the oncologist told me it usually takes a week or two before side effects start. I began at 800 mg, which is the full/recommended dose. By day three, I had intense GI side effects: major gas, diahrrea, gas, GI pain, and did I mention gas? I was also feeling fatigued easily. They quickly lowered my dose to 600 mg, which has been more tolerable. I  have tried a couple of things for the GI that didn't really help (Famotidine and another similar reflux med). About two weeks ago I started taking pantoprazole. While it's for reflux, it has had other benefits. I still have gas and diahrrea, but not as bad as before. And some days are better than others. I was having nausea pretty regularly, but now it's not happening as much with the pantoprazole. 

As far as other stuff, my hair started gradually turning white after the first month or so. I've been on it seven months now, and my hair is almost completely white; the brown streaks are barely visible. I did get a mouth sore after a month or two, but that eventually went away; I'm not sure how, but it's gone now. The fatigue can vary from day to day. I may have a couple of days in a row when I'm doing stuff and being somewhat productive. That is usually followed by a day where I need to sleep for more than half the day. Sometimes those tired days happen in succession - sometimes they I go a few days without too much fatigue. I do get worn out more quickly than I used to, so I've been making adjustments along the way.

I hope some of this was helpful, canadiancruiser. Feel free to PM me if there's anything you want to ask, or if there's anything I can do. You can do this. Just keep reminding yourself that it's better than the alternative. Best of success with your treatment!

Gary

Thank you

Thank you so much for the info.. Started it this morning so I will see what happens next...