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Tolerating treatment

ImNotDeadYet's picture
ImNotDeadYet
Posts: 239
Joined: Apr 2017

I hate to be a downer today, but I'm having a rough go of things right now. Started Votrient 10 days ago and have been reduced from 800 to 600. SEs are really starting to kick in. GI issues, BP, chills, fatigue, bad headaches, and just feeling generally "yucky." For those of you who are, or have been on it, how long did it take for your SEs to stabilize? I'm worried it's going to start affecting my ability to do my job. I'm already in a tight spot becuase of all the health issues I've had around this recently. I'm taking Gax-X and have immidium AD. Taking tylenol and flexeril for the tension headaches, but that makes me rather sleepy. On two BP meds now, which seems to be helping with that. Overall, I'm just feeling like crud. Would love to hear how others' SEs have resolved and how long it took. As prepared as I thought I was, I wasn't prepared for what I'm feeling right now, and so soon.

Thanks!

Gary

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

I'm not any of your meds but read your posts. Just wanted to tell you your in my thoughts and sending some positive thoughts your way. I hope you have a good night and a better day tomorrow.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 239
Joined: Apr 2017

Doc let me skip a dose last night, and I feel much better today than I have in a few days. Not better, but better than I was, if that makes sense. I see my oncologist later today, so hopefully we'll come up with some kind of plan for dealing with this. Fox wrote about taking lower doses and skipping every third day; I'm going to ask her about the possibility of doing that, among other things.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

praying things start to get better soon

Annie

rhominator's picture
rhominator
Posts: 230
Joined: Nov 2015

"Would love to hear how others' SEs have resolved and how long it took."

I was never able to beat the fatigue. It plagued me. Fortunately, those around me picked up the slack and would carry things for me, get me a chair, etc. I pushed myself a couple of times harder than I should have and I paid dearly. It was real, not just in my head.

For digestive issues, I just got used to the routine. Quite a nuicance, but managable.

I was cold all the time. Electric blankets/throws, winter clothes during summer, etc. Another nuicance.

Leg cramps. Ouch! What a pain (ha! a pun). Find something that works, whatever it is.  I think I found a supplement.

"Yucky" feeling. Yeah, that sucks. Wish I could tell you it'll go away, but I think it will be better when you no longer compare how feel to how you think you should feel.  I don't remember it getting any worse than when I started at 800mg for a year.

White hair. Embrace it. I stopped taking Votrient about 14 months ago, and I only got half of my dark hair back!  I guess I went gray while I was on Votrient and didn't even know it.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 239
Joined: Apr 2017

Thanks! Do you recall, were you able to tolerate the occassional glass of a caffeinated beverage, like a soft drink?

rhominator's picture
rhominator
Posts: 230
Joined: Nov 2015

No problems with beer, wine and coffee. (Not at the same time!) Nor an occasional soda.

rjhillcbytwp
Posts: 11
Joined: Oct 2015

Hi Gary,

Having been on Sutent for one year, and lasting almost two with varying dosages of Votrient, I can tell you that many of the SE's were similar, but presented differently.  For instance, Sutent made me sick from the navel up, e.g reflux, vomiting, taste changes, sores in the nasal passages, and elevated blood pressure requiring treatment with Norvasc and Labetalol- which made my legs swell.   The Votrient made me sick from the navel down.  This presented as cramping in the stomach, Diarrhea, some pretty painful pancreatitis on occasion, and the fatigue, constant state of feeling cold, and again with the sores in my nose.  I found that a diet that would make a dietitian cry was best, low fiber, low fat, low dairy, pretty much the opposite of what you've learned to be healthy eating.  Towards the end of the second year, I was eating bland sandwiches on the best sourdough bread I could find.  Bakery versions were best. Home made bread worked well too. I think the lack of additives was the key.  PB&J, grilled chicken, baked potatoes... you get it, those were all good.  Dairy Queen Soft serve ice cream never failed.  It never made me sick, and I could pretty much have it any time of the day or evening. Tomatoes, fresh greens, spaghetti sauce, greasy fried chicken, all lead to to trouble later. I called the powder room "the Penalty Box," cause bad food choices led to serving time there. 

I think once you work out what foods cause you trouble, and stick to the foods that work, you'll find that your SE's stabilize somewhat.  The trouble for me was the amount of time it took to recover after getting it wrong.  Once I had the stomach issues, it was really hard to get out of the cycle of eat, cramp, grumple, and run to the Penalty Box.  I'd be fibbing if I said that I could keep up with the rest of the work team while I was on those TKI drugs.  I found that immodim is what caused the majority of the cramping.  Sometimes it's best to just let things run their course.  Gas-x didn't help me either.  Gaviscon tablets helped with any reflux that I had.  Sadly there is no hard and fast formula, because we all have similar but not exact experiences.  You'll get better at managing the SE's, the experimentation just takes a while.  Hang in there!

ImNotDeadYet's picture
ImNotDeadYet
Posts: 239
Joined: Apr 2017

Thank you for the thoughtful reply. Yeah, I'm still at the stage where I am figuring out which foods I tolerate and which ones I don't. The bland chicken and breads, so far have been good. White rice too. The work thing is getting pretty stressful, so much so that I may consider a leave or going on disability. As much as I hate to do that, I don't see an alternative. My focus needs to be my health. Last night I lowered my dose so I could meet a couple of deadlines today, one of which popped up last  night. I have to put my health first. I know it should stabalize, but don't know if it will be days, weeks, or months. This gets disheartening at times. I am glad to know there are others here who understand, though I'm sorry any of us have to be here.

Cdmvirginia
Posts: 4
Joined: Mar 2018

My husband has no experience yet with these drigs, but wanted to just respond with encouragement. Hoping the SEs settle down for ou soon.  Keep us posted.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 239
Joined: Apr 2017

Thank you to you and your husband for the support. I hope his treatment goes well.

amandac2018's picture
amandac2018
Posts: 26
Joined: Feb 2018

Gary, I start Sutent this week sometime. I must admit I am almost more worried about side effects than I am the cancer. My oncologist is hitting me hard to begin with but is someone who completely believes in adjusting the time on/off to make the SE bareable(such as 3 days on 1 off, or 5 days on 2 off...you get the idea). I hope you find the schedule that works for you, and that you learn to manage your new normal. Thinking of you as we seem to be almost on the same schedule!. 

ImNotDeadYet's picture
ImNotDeadYet
Posts: 239
Joined: Apr 2017

I guess it's that we can feel the side effects, but if it weren't for doctors and scans, I'd have no clue the cancer is there. I hope Sutent does the trick for you and that your SEs are minimal.

rhominator's picture
rhominator
Posts: 230
Joined: Nov 2015

I was an independent contractor/consultant when the cancer diagnosis came. I had the luxury of being able to back off on my commitments while on Votrient. But, after two years into the treatment, NASA called an offered me a job!

Of course I took it, bringing along all my cancer and treatment baggage. And with God's good grace, I've been able to make a fulltime job (with travel) work.

There's still a lot of unknowns out there for you, but you'll figure it out. Over time, the new routine will become routine.

I pray your employer is gracious and understanding.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 239
Joined: Apr 2017

...At least to this point, which is a lot, and more than most would have likely seen from places of work. They've been incredibly supportive and understanding, and been flexible with me. After over a year of support and flexibility since my neph, I think it's starting to wear a bit thin. I can't say I fault them; most other companies would have likely found a way to get rid of me by now. They are truly good, caring people, with an organizational ethos that supports people in tough times. That said, they need to see some things from me that have been difficult for me lately, and I'm not sure how much more difficult (or easy?) those things will get over the next weeks/months. There's upcoming travel that I'm not sure I'll be able to do, among other things. I'm not at my 100% best right now, and they need 100%. I have no idea when, or if, that will come back anytime soon. It saddens me. I dig the job and love the people, and I don't want to let them down any more than I don't want to sabotage my own care by overdoing it with work. I hope and pray it becomes clear what the right choice is. This is a tough one, for sure. 

rhominator's picture
rhominator
Posts: 230
Joined: Nov 2015

I feel your pain.

kiwibloke
Posts: 5
Joined: Apr 2013

i have been reading comments on this forum for five years gaining information from people like yourself without commenting or replying.  I had a radical nephrectomy in Dec 2011 and had secondary tumors in submadular glands diagnosed after three months of testing.  Surgery was ruled out as to dangerous so I started Votrient in Feb 2013 and am now wondering how much time I have got left on the drug. Diarrhoea is now my main issue, I have not played with my diet very much and found drugs do not help a lot, it was interesting reading some of your comments around diet.  I might try a few of your tips, thanks for your advice rhominator.

Deanie0916
Posts: 234
Joined: Nov 2016

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. 

ImNotDeadYet's picture
ImNotDeadYet
Posts: 239
Joined: Apr 2017

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

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 239
Joined: Apr 2017

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?

amandac2018's picture
amandac2018
Posts: 26
Joined: Feb 2018

and wondering if you have been able to manage your side effects with the lower dose of votrient. So far I have been incredibly lucky, I just finished my first 2 weeks of Sutent, and besides a sore tongue I have had no side effects yet. 

ImNotDeadYet's picture
ImNotDeadYet
Posts: 239
Joined: Apr 2017

It's been a lot better the last week or so. Still having some GI issues, but not nearly as bad. And since I've gone out on disability, I'm  getting more sleep, which seems to help. It's not perfect, but it's definitely better than it was. First scans since starting Votrient are next week, and I have the follow-up with my oncologist on the 10th. So, we'll see if there is any progress soon. 

I hope you do well on the Sutent. Glad your SEs have been minimal so far

jomoore60
Posts: 6
Joined: Mar 2018

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.

 

canadiancruiser's picture
canadiancruiser
Posts: 14
Joined: Apr 2013

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's picture
rhominator
Posts: 230
Joined: Nov 2015

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

ImNotDeadYet's picture
ImNotDeadYet
Posts: 239
Joined: Apr 2017

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's picture
canadiancruiser
Posts: 14
Joined: Apr 2013

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

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