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pain on Votrient

gregslovey
Posts: 33
Joined: Oct 2016

Hi everyone.  My husband has stage IV kidney cancer...had his left kidney removed 5 years ago and was "cured" ....then it popped up in his lungs and on his scalp by his five year check.  We did high dose IL II....horrible treatment and didn't do a thing.  In fact, he now has three lesions on his liver, one on his thyroid, one on his pancreas and two on bone.  We started Votrient 5 weeks ago and the scalp lesions have disappeared.  That's good, but he is having a hard time with the Votrient......of course the nausea (managed with meds), no appetite, terrible fatigue, and lots of pain.  my question is this....did any of you have pain caused by Votrient?  Musculoskeletal pain is listed as a side effect, but I've never noticed any reports on her about it.....

This concerns me since I'm worrying about the bone mets.....

 

thanks

 

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

beat me down also. But I had no pain as you describe.

gregslovey
Posts: 33
Joined: Oct 2016

thank you....I started another thread titled "help please"......  for the same reason, sorry.  New to this  In any case, rhominator has had some pain, but I am not sure it is the same type.  it is a tough medication.  follow on the other thread please :) 

I'll get this sooner or later.....

sw.bwgroup
Posts: 3
Joined: Oct 2016

My husband also has stage IV renal cell carcinoma. He had his left kidney removed in July of this year. We were told at that time that he had clear margins. However, we were due to follow with a back doctor due to a previous back injury. He told us that he felt the cancer had spread to his spine, and did a biopsy. This biopsy showed the kidney cancer had indeed spread to his spine and a rib. He started Votrient about 6 weeks ago. My husband hasn't experienced nausea but has most definitely experienced the musculoskeletal pain. We had read that taking it at night might help with side effects. So he first took it on a Friday night, and by the next morning when he woke up he said he could actually feel where the cancer was in his bones. Over the next week the pain and fatigue increased to the point that he could hardly get out of bed despite pain medicatio. After the two week mark the pain seems to have lessened to a more manageable level. It is still there but not so bad that he has to live on pain meds round the clock, just takes it a night. We haven't had the first scan yet but we are hopeful. It's definitely a scary way to live though. So much uncertainty. 

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

I haven't heard the term "clear margins" from any of my health care providers.

Can you explain the term for my education, please?

Thanks.

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

When they remove the tumor and do the pathology, clear margins means that there was non-cancerous tissue all around the tumor, or a margin of cancer-free tissue surrounding the tumor. It means they (probably) didn't leave any of that tumor in your body. If you have a radical nephrectomy, usually there's always clean margins as long as the tumor was encapsulated fully by the kidney. Partials are a different story.

Sometimes they just say "we got it all". As you stick around here awhile, you realize that while that's good news, it really doesn't tell you much about the future.

gregslovey
Posts: 33
Joined: Oct 2016

thank you! so glad he isn't the only one....he has the next bone scan on Wednesday, so we will see if it spread, I am suspicious that it has though.  His dose has been decreased to 400mg now, and the pain is a bit more manageable at this point.

Good luck to you both

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Talk to your oncologist. If the pain is seriously effecting your husbands quality of life (it certainly sounds like it is) then the Dr will take him off Votrient and try a different treatment: there are many. No one need suffer unmanagable pain.

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

If this is not the correct thread to discuss Votrient side effects, let me know.

I'm four days into my Votrient treatment. Last night was a bit rough.

I *almost* welcome the diarrhea after two and a half months of the constipation that comes with narcotic pain relievers. Several trips to the bathroom per night, however, will get old very soon with the lack of mobility from my spine met.

I don't have nausea yet, but had to stop taking the protonics that I was perscribed because protonics and Votrient don't mix. The indegestion is pretty bad.

Someone said, in an earlier post, that their husband could feel his tumors. Yeah, I feel that too. I hope it means the Votrient is kicking the tumors' asses.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

"I *almost* welcome the diarrhea after two and a half months of the constipation that comes with narcotic pain relievers."

I suspect you may come to rue that sentence. Hang on in there, but tell your doc. That seems a bit rough.

Buy flushable moist soothing towelettes. You WILL thank me.

 

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Thanks for the advice, Footstomper.

LauraM3's picture
LauraM3
Posts: 27
Joined: Apr 2016

I am on Votrient and I have skeletal pain. i learned that it's due to the drug.  

Time2luv
Posts: 49
Joined: Dec 2009

I've been on Votrient for approximately 1 1/2 years now. Started at 600 mg but quickly reduced to 400 mg due to high blood pressure. Just reduced to 200mg this October due to no new growths and no growth on current nodules. I, also had diarrhea very bad! The bad diarrhea didn't start until probably last 3 months. Nausea and diarrhea was tolerable until then. On maintenance for now. New scan in January. No pain with Votrient. Actually very tolerable until recently. Appetite is back and putting on few lbs now instead of loosing weigh. 

gregslovey
Posts: 33
Joined: Oct 2016

all for your input.  He has recently had to go down to 400mg and is doing much better....the pain has lessened and we were able to enjoy Vegas : )

and, we had scans a week ago that showed a marked decrease in his tumors....we are down to two very small active cancer tumors in his lungs at this point.  I am inspired by all of you and your strength.  We are feeling like we are out of the woods for a moment at least.  as long as he responds to the votrient, he will stay on it.  Next set of scans in three months to see if we can hope for a visit from uncle NED......wouldn't that be wonderful???

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

I started at 800mg per day, and I'm still there.

One of the listed side effects of the drug, for which I'm supposed to contact my physician, is severe joint pain. I'm having pain in my knees in the morning that is getting worse, daily, and makes it very, very difficult to move around until my morning dose of pain killers takes effect. My bone scan didn't show any mets in my knees, so I'm fairly certain the pain is from the Votrient.

My doc tells me that, in his experience, he's never had anyone spend much time at 800mg per day; he always backs their dosage down to 600mg, 400mg, or even 200mg. I don't want to back down my dosage if I don't have to. My assumption is that the 800mg per day is going to attack the mets more powerfully than lower dosages. If I can muscle through the pain, with the help of my meds, the higher dose of Votrient will be doing more to kill off my mets.

At least, that's my theory.

Thoughts?

gregslovey
Posts: 33
Joined: Oct 2016

Hi Abunai..my husband is now on 400mg a day...(he did tolerate the 800 for about a month....)and his tumors have shrunk considerably, so don't be afraid of lowering the dose.  You have to be able to tolerate it for it to work.

My hubs is still having that pain, and he takes 10mg of oxycodone three times a day which holds it pretty much at a level 2.  However, I was talking to an aquaintance of mine who had chemo for ovarian cancer and her onc told her to take CLARITIN.  Plain old Claritin....and it helped her bone pain.  So, today we saw our oncologist, asked if she had ever heard of it and...of course she had and it's certainly worth a try.  SO, he is picking up claritin now and we are going to give it a go...something about chemo being an intruder in your body, so your bones react.  the antihistamines reverse that reaction. 

I also looked up "claritin and bone pain" on the net and it seems it actually does work for some folks....

 

take care

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Thanks, gregslovey.

Yeah, the fatigue and pain started getting the best of me a few days ago, so I called my oncologist and asked to scale my dosage back to 600mg per day. Unfortunately, I just had a Zometa treatment yesterday, which is also kicking my butt, so I can't tell yet if lowering the dosage helped or not.

I will definitely look into the Claritin for bone pain.

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

Sort of like, "if you keep your hand in water for 10 seconds, does it get more wet than if you put it in for 5 seconds." Ok nothing of the sort.

I was very sick when I started 800mg. Now I forget but I think I had to drop to 400 and it was tolerable for maybe 9 months. But eventually I got too sick from it. Just like I did this time with cabo.

rhominator's picture
rhominator
Posts: 232
Joined: Nov 2015

Hi Abunai.  I can relate to your thoughts about reducing the dosage. I was on 800mg for 9 months before reducing to 400mg. My doctor encouraged the reduction to improve quality of life.  I was ready to tough it out with the MAX dosage, but the reduction was worth it.  I've been holding steady at 600mg for the last six months.

Dr. Shameem's picture
Dr. Shameem
Posts: 1
Joined: Aug 2018

I have started pazopanib for 18 days only. 800 mg per day. No other problem but getting low back pain. I have only skull bone mets. but on scan no spine or pelvic bone mets. Can anybody comment on this? 

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