Tolerating treatment

Retcenturion said:

Listening to you

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.

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.

Cdmvirginia said:

My husband has no experience

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.

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

rjhillcbytwp said:

Votrient SE's

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!

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.

rhominator said:

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.

...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. 

amandac2018 said:

Hi Gary was just thinking of you

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. 

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