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Hello, from the UK, advice& positivity needed

kelbert
Posts: 5
Joined: Apr 2013

Hi Everyone,

I've been lurking on this site since October last year when we found out my Dad had Kidney Cancer and have found everyones stories very inspirational when at times I have really needed to be positive about the future.

Long story short, dad diagnosed at the time with stage 3 grade 4 but were warned very high risk of recurrence so they would scan my Dad again in 3 months...fast forward to Jan and we were dealt devastating blow that it had spread...with a lesion on his liver and lymph nodes surrounding where Kidney was removed.

However the oncologist was very positive, claiming on the treatments available he could still be around for years.

For the last 5 weeks my Dad has been taking Votrientt often making him feel pretty lousy, dizziness, nausea, headaches, fatigue etc...

What i'm becoming increasingly concerned at, is that I have read on here that having high blood pressure was a positive sign that the votrient is doing it's job, so as my dad does not yet have that side affect, does it mean that Votrient not working.

I just thought you guys may be able to offer me your words, advise and experiences. Thanking you all in advance.

Kelly x 

NanoSecond's picture
NanoSecond
Posts: 527
Joined: Oct 2012

Kelly,

Everyone reacts differently to these drugs.  A rise in blood pressure is common side effect - but it is not universal.  Plus BP readings will vary throughout the day and on which arm they are taken etc., etc.  Tex can probably offer more detailed information about all that.

Since clearly the drug is causing some other effects with your dad I would not jump to any conclusions.  So hang in there and wait for the results from the next CT scan.

And your oncologist was also correct.  There are numerous other drugs to choose from if/when it becomes necessary.

Just my 2 cents,

 

-Neil

kelbert
Posts: 5
Joined: Apr 2013

Hi Neil

Thankyou for your reply. Yes I think today is just one of those days when I can't seem to think positively and I'm jumping to conclusions! Won't know anything for sure till they scan him again in June.

My Dad has found the last few days a struggle, spending most of it in bed, he says he just feels permantley hungover, Its hard seeing him like that, wish I could do something to help him. 

Thanks again for reply, really appreciate it.

Kelly x

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Kelly, it is generally true that those who have no increase in BP on Votrient tend to be those for whom it doesn't do much.  How much do you know about your Dad's BP?  Do you have a reliable record of your Dad's previous BP?

Don't jump to conclusions too soon, as Neil has said.  BP measurements are very variable and can be very misleading.  Also, some side-effects come on at different times from others.  What dose level is he on?

kelbert
Posts: 5
Joined: Apr 2013

Hi, 

I don't have any of my dad's readings, I'm assuming I guess that as his nurse has not said anything about bp bern high then it must be ok.

He is taking the full 800. I just want votrient to work for him. 

Kelly x

kiwibloke
Posts: 1
Joined: Apr 2013

Hi Guys

i have been reading the information and support many of you provide to each other over the last six weeks, thank you for just being there and taking the time to write.  The amount of knowledge some of you have on your diagnosise is amazing, I have memory issues now after a couple of operations so my wife is my solid back up advising me of some information that slips through the cracks.

My experience is right Kidney removed Dec 2011 then a couple of glands in my neck swelled up last Sept 2012with final diagnosis mid Jan 2013 stage 4 renal cancer with scans being clear everywhere else. Surgeons did more scans and tests thinking surgery may be an option but difficulty of nerve injury to high so decded drugs the best option.  Started 800mg Votrient early March with blood pressure being my main issue, fatigue, nausea etc there but under control.  My tumours wih in the first fhree weeks reduced by 50% and they are still reducing in size, I had to come off the drug in week four to try controlling the blood pressur, in thie eight days off the drug the tumours grew about 20%.  i then started up again on 600mg Votrient to see in the last ten days the tumours reducing in size again and blood pressure looking a bit better.

i know at this point my quality of life is OK, I had no symptoms, pain or anything going into this so the drug has made a slight difference but if it is helping I can put up with the issue of side effects.

I say thanks for your support, reading this before taking the plunge to write something myself has helped to see there are many of us working on the same battle.

Eims's picture
Eims
Posts: 420
Joined: Feb 2013

Hi Kelly,

I'm only across the water from you in Ireland!!  Welcome to the board and listen to the lads on here....they know what they are talking about ;-)

Eims x

kelbert
Posts: 5
Joined: Apr 2013

Hi, yes I noticed a while back whilst reading one of your posts you were in Ireland.

Thanx for your reply, have been wanting to start up a discussion on here for some time now but had never been quite brave enough! Haha.

Trying hard to be more positive today. Dad been very unwell last few days so his nurse has suggested he take a break from the votrient for a few days...hopefully that will recharge his batteries, and perhaps they may want to adjust the dosage? Keep trying to tell my dad the reason he feels so rotten is because the votrient is doing its job...hope that turns out to be the case.

Hope your doing ok also, I think it helps to talk to others who are dealing with this horrid vile disease.

Kelly x

GSRon's picture
GSRon
Posts: 1223
Joined: Jan 2013

As others stated... Blood Pressure can vary...   mine goes up ad down at times... and that was with drugs to control the BP... after about two weeks, it all got stabile.   Then I was off the Votrient for about 12 days... during the restart, same thing... BP goes high then back to normal...  not much of a concern.   I check my BP at least twice a day... my electronic device records the results, so I can go back and see... usually high in the morning for me...

Hope it works for your Dad..!

Ron

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