help please.....

gregslovey

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

rhominator

Pain in the arm

Sorry to hear about your husband.  I've been on Votrient for over 2 1/2 years.  I have pain in my pain in my left shoulder and my right elbow since I've been on Votrient. Both are aggravated by physical activity (e.g., carrying something heavy).  The pain slowly subsides after a month of inactivity.  CT scans are clear in these areas.  I should note that the left shoulder was where there was a pretty bad bone met, which is clear now.

Allochka

Sorry that your husband is

Sorry that your husband is having such a hard time.

Maybe doctors can change his dosage a bit to reduce side effects? 

I'm not a cancer patient myself, and can't judge about side effects of this kind of medicine. But the fact that others do not mention some side effects doesn't mean they do not exist. I once had a side effect caused by fertility related drug, which was listed as very rare ( like happening to 1 person out of 100 000).

Also once I complained to my doc about a side effect caused by other medicine. This effect was listed as a very common one. So I thought it would be a usual thing for him to hear. To my surprise, doc said that no one among his patients  ever had it.

At the same time, please make sure any persistent pain is reported to husband's doc, just to be on the safe side.

gregslovey

thank you

I appreciate the insight rhominator.....he has had pain in his right hip where there is a mets lesion, but has increased pain in his general back/body aches, and it is bad pain.  I was wondering if anyone else had the pain and if it was related to the votrient. He runs a business that is very physical and I don't think he takes it as easy as he should.....and no amount of harping will change that believe me : )  He is on extended release pain meds and breakthrough in between.  That is huge for him...he hates medication.  Having been on Votrient for more than two years, do you have any advice??  Foods? how are you eating?  He says everything tastes like metal and no appetite.  And the fatigue?  What dose are you on?  He is on 600mg daily now.  Any words of wisdom will be helpful as we navigate this. I don't have a problem navigating the system or docs as I am a nurse....but knowing how this is for patients themselves will help me help him...thank you

His physician is aware Allochka..thanks to you too.....I am a nurse and keep a very good eye on things...I keep a journal daily for the doc in case I forget something.  His doc already reduced the dose to 600 from 800, and will do so again if it becomes unmanageable.

 

 

todd121

Scalp?

Hi. I'm sorry to hear about your husband's pain. I haven't taken votrient and haven't seen any posts about general pain due to votrient.

You didn't mention your husband's detailed diagnosis. If you filled in your profile, it might help you being asked the same questions over and over again. Usually we like to know what type RCC he has (clear cell, etc.) and maybe something about the history.

I've never heard of RCC spreading to the skin and have never read any posts here about this either. Would you mind describing what it looked like and how they verified it was RCC? Did they biopsy?

Wishing you both the best.

Todd

gregslovey

Sorry Todd

New to the site as a member....and have been trying to figure out how to get my information on there today....

Anyway, he has clear cell Renal cell cancer, diagnosed five years ago.  Had a lap assisted nephrectomy....got the all clear.  Five year appt, "something" on his chest xray....biopsied and of course it was clear cell RCC.  We did notice the scalp lesion prior to that, thougt it was a cyst.  But then he developed three more.  Our oncologist said that cutaneous metastasis for renal cell  is rare but does occur in about 7% of patients, she is sure that was what it was.  We were going to get them taken off, but the Votrient got rid of them before we got to the surgery.  She tells us that since it is working on the outside, it should be working on the inside.

His scalp lesion looked like a purple cyst, it was in his hair and about as big as a quarter around and probably a half to three quarters of an inch poking out.  the others did not get that far before the votrient....probably the size of a nickel.  they are soft and do not move.

Footstomper

Getting your info up

Just click the button at top left and answer the questions which pop up. It makes it a lot easier to talk to you.

todd121

gregslovey said:

Sorry Todd

New to the site as a member....and have been trying to figure out how to get my information on there today....

Anyway, he has clear cell Renal cell cancer, diagnosed five years ago.  Had a lap assisted nephrectomy....got the all clear.  Five year appt, "something" on his chest xray....biopsied and of course it was clear cell RCC.  We did notice the scalp lesion prior to that, thougt it was a cyst.  But then he developed three more.  Our oncologist said that cutaneous metastasis for renal cell  is rare but does occur in about 7% of patients, she is sure that was what it was.  We were going to get them taken off, but the Votrient got rid of them before we got to the surgery.  She tells us that since it is working on the outside, it should be working on the inside.

His scalp lesion looked like a purple cyst, it was in his hair and about as big as a quarter around and probably a half to three quarters of an inch poking out.  the others did not get that far before the votrient....probably the size of a nickel.  they are soft and do not move.

Scalp Lesions

7% doesn't sound rare at all! I've never heard anyone post about mets on the skin. I had heard that brain lesions is 5% of patients. Is it possible she said 0.7%?

I'm so glad it's working.

At the top of the page is a link that says "Click here to create or update your 'About Me' page". If you click that link, there should be some place where it will ask you questions you can fill in. Honestly, I always have trouble finding it too when I want to update mine. You might have to poke around.

I'm just so sorry to hear about the pain your husband is experiencing. Chronic pain is so draining. I hope that they can find a medication that helps without these side effects. I know some of the new medications don't have as many side effects but they aren't approved as first line treatments I guess?

Best wishes,

Todd

rhominator

gregslovey said:

thank you

I appreciate the insight rhominator.....he has had pain in his right hip where there is a mets lesion, but has increased pain in his general back/body aches, and it is bad pain.  I was wondering if anyone else had the pain and if it was related to the votrient. He runs a business that is very physical and I don't think he takes it as easy as he should.....and no amount of harping will change that believe me : )  He is on extended release pain meds and breakthrough in between.  That is huge for him...he hates medication.  Having been on Votrient for more than two years, do you have any advice??  Foods? how are you eating?  He says everything tastes like metal and no appetite.  And the fatigue?  What dose are you on?  He is on 600mg daily now.  Any words of wisdom will be helpful as we navigate this. I don't have a problem navigating the system or docs as I am a nurse....but knowing how this is for patients themselves will help me help him...thank you

His physician is aware Allochka..thanks to you too.....I am a nurse and keep a very good eye on things...I keep a journal daily for the doc in case I forget something.  His doc already reduced the dose to 600 from 800, and will do so again if it becomes unmanageable.

 

 

My experience with Votrient

I'm on the 600mg dose. You can click on my profile to get the details. Regarding my experience with Votrient, I think I've had most of the side effect to one degree or another.  And they've varied over time.  Severe diarrhea, changes in appetite and taste require constant monitoring and adjustments to lifestyle.  My wife is always tweeking our meals to accomodate my current state of affairs.  But for me, the biggest adjustment has been handling fatique, weakness and cold. 

I feel like I've slowly attrophied away and I'm a shell of my former self.  Gone are the no-pain, no gain days!  If I overexert myself now, I pay for a week with no reward for my effort.  However, as I mentioned in another thread, I recently took a 2-day break from Votrient and I immediately felt like my old self.  :-D  When I resumed the side effects were not as severe.  A break will become a regular part of my treatment.  This recent experence has given me great hope that I can resume physical activities that I once enjoyed if and when I move off this drug.

Votrient has been a love/hate relationship with me.  Although I loath the side effects, they have been arguably tolerable and the drug has been working.  At stage IV, it's hard to complain as I spend quality time with my wife, work daily in my dream job, and contribute to God's glorious work at my church.

gregslovey

rhominator said:

My experience with Votrient

I'm on the 600mg dose. You can click on my profile to get the details. Regarding my experience with Votrient, I think I've had most of the side effect to one degree or another.  And they've varied over time.  Severe diarrhea, changes in appetite and taste require constant monitoring and adjustments to lifestyle.  My wife is always tweeking our meals to accomodate my current state of affairs.  But for me, the biggest adjustment has been handling fatique, weakness and cold. 

I feel like I've slowly attrophied away and I'm a shell of my former self.  Gone are the no-pain, no gain days!  If I overexert myself now, I pay for a week with no reward for my effort.  However, as I mentioned in another thread, I recently took a 2-day break from Votrient and I immediately felt like my old self.  :-D  When I resumed the side effects were not as severe.  A break will become a regular part of my treatment.  This recent experence has given me great hope that I can resume physical activities that I once enjoyed if and when I move off this drug.

Votrient has been a love/hate relationship with me.  Although I loath the side effects, they have been arguably tolerable and the drug has been working.  At stage IV, it's hard to complain as I spend quality time with my wife, work daily in my dream job, and contribute to God's glorious work at my church.

thank you

thank you!  I think he just has not had time to adjust to this "new normal".....he has only been on it for about 5-6 weeks now and it is hard for him to realize he has to slow down.  This for a man, like you, is always on the go....works long and hard and can't understand that he needs to change now.  And, he loves to cook...and eat. 

I appreciate the note for the fatigue and weakness...he is frustrated with that as well. 

We had a talk today...I told him he needs to be getting more nutrients, even if it means protein or green shakes.  I try to take care of all of the appointments and interpreting of the scans and "doctor speak", I bake because he can taste sweets right now,  I fill his med box and advise on how he can take steps to feel more like himself .. ie, rest more.  but I think ultimately, he needs to figure out how he is going to handle this.  Our next set of scans is two weeks, and I think if they show a shrinkage he will be more likely to accept the changes he has been feeling.

I really appreciate the input so much......

rhominator

gregslovey said:

thank you

thank you!  I think he just has not had time to adjust to this "new normal".....he has only been on it for about 5-6 weeks now and it is hard for him to realize he has to slow down.  This for a man, like you, is always on the go....works long and hard and can't understand that he needs to change now.  And, he loves to cook...and eat. 

I appreciate the note for the fatigue and weakness...he is frustrated with that as well. 

We had a talk today...I told him he needs to be getting more nutrients, even if it means protein or green shakes.  I try to take care of all of the appointments and interpreting of the scans and "doctor speak", I bake because he can taste sweets right now,  I fill his med box and advise on how he can take steps to feel more like himself .. ie, rest more.  but I think ultimately, he needs to figure out how he is going to handle this.  Our next set of scans is two weeks, and I think if they show a shrinkage he will be more likely to accept the changes he has been feeling.

I really appreciate the input so much......

Your husband is fortunate

I can appreciate what you're doing for your husband. My wife is--and has been--an excellent caregiver and patient advocate. I've capitulated to the "green shakes", probiotics and whatever else she sends my way, and it's made things better.  Keep it up!

gregslovey

rhominator said:

Your husband is fortunate

I can appreciate what you're doing for your husband. My wife is--and has been--an excellent caregiver and patient advocate. I've capitulated to the "green shakes", probiotics and whatever else she sends my way, and it's made things better.  Keep it up!

break

we actually had a call in to the doc this week to see if "taking a break" would be ok....we are heading to Vegas for a long weekend the beginning of Novemeber and he really wants to try to enjoy it.  Did your taste come back immediately?  you said you felt like superman....that's so awesome.  We are hoping for the same for our short trip....we have so much fun when we go away, I thinnk it would do him a world of good to feel normal for a few days..

 

thanks again for the information, you've been a great help

rhominator

gregslovey said:

break

we actually had a call in to the doc this week to see if "taking a break" would be ok....we are heading to Vegas for a long weekend the beginning of Novemeber and he really wants to try to enjoy it.  Did your taste come back immediately?  you said you felt like superman....that's so awesome.  We are hoping for the same for our short trip....we have so much fun when we go away, I thinnk it would do him a world of good to feel normal for a few days..

 

thanks again for the information, you've been a great help

Enjoy Vegas

It seems it took 24-48 hours before I really felt the change.  And yes, one time, awhile back, I did experience a restored palette.  So I guess results can vary, or perhaps it's related to where your focus is.

BTW: We intend to strategically schedule our "breaks" for the same reasons.

Jan4you

I cannot help you with any

I cannot help you with any specifics that you are asking, BUT, I want you to know how much I respect your love and care for your hubby. It must be difficult to have him refuse your suggestions of more nutrients and rest. Sometimes, when that same advice comes from someone else, a CNS peer or MD, maybe he'll listen?

So I want to send YOU my understanding, my support and my continued care!

Hugs to you both~

Jan

hardo718

Have a wonderful trip

Please try to take care of you too.  Having been on both ends of this cancer thing, I can tell you firsthand it's harder to be on the caregiver side.  Your dedication is admirable.  Unfortunately, we can only do so much as caregivers and the rest is generally up to the patient.  Hard as it is....cause sometimes their decision is not in lockstep.

I'll keep both of you in my prayers.  Such a tough journey for all involved.

Donna~

gregslovey

thanks all

I appreciate all the support and good vibes.....I have been reading the posts on here for awhile but only actually joined yesterday.

thank you all

Teashea

Hello

God bless you and your husband. What a scary time it is for both of you. My best advise and I say it over and over. One day at a time. Sounds a bit like my story. Right kidney removed, no chemo or radiation they were sure they got it all. Nine year's later came back mets to my lungs and right adrenal gland. Adrenal gland was removed April 2014. After surgery three new mets, stomach tumor right next to my liver, left adrenal, and left femur. December 2014 found on Friday surgery on Monday. Cryotherapy and IM fixation (titanic rod). After healing for quite some time came my experience with 4 days at a time x 4 times intensive care for IL2. Zero results from the IL2 but left me a bit crippled up. Then came the votrient it was like having a bad case of the flu everyday. However it did shrink my tumors quite a bit. It shrunk the stomach tumor away and it has not returned. Votrient caused my blood pressure to be uncontrolable. It caused high protein in my left kidney for those reasons I was taken off of it. Tried one imtraveous dose of nivolabab. It crippled me up more. Now 40 day's on cabometyx. Liver enzimes went to a very high level but are coming down so all is good. My first cat and bone scan's will be Nov 1st and I am expecting good results. Best wishes.

 

Teashea

PS

He will have less side effects if he takes his votrient at bed time. I set my alarm for 11:30 pm wake up take it and go back to sleep.

gregslovey

thank you

Thanks Teashea, he usually takes it around 3pm, and this time works for him and his schedule, but I will let him know it is an option.  We are excited for Las Vegas the beginning of November.....doc ok'd a four day break so he can enjoy it more.  And I am going to start giving him a "green" drink for nutrients...whether he likes it or not.....   : )

JerzyGrrl

gregslovey said:

thank you

Thanks Teashea, he usually takes it around 3pm, and this time works for him and his schedule, but I will let him know it is an option.  We are excited for Las Vegas the beginning of November.....doc ok'd a four day break so he can enjoy it more.  And I am going to start giving him a "green" drink for nutrients...whether he likes it or not.....   : )

Vegas sounds great

Las Vegas sounds great. There are options there for getting healthy food choices, also for delighting your tastebuds with all sorts of yummy things. 

One of the places I always try to visit when I'm in Vegas is the Red Rocks natural area, on the west side of town. It's a gorgeous area, broad vistas, super for just sitting (even if just in the car if it's a blustery day), and contemplating how amazing this life and this planet are. 

Jerzy