My husband started Votrient Saturday to treat Stage IV Clear Cell RCC and I wanted to see if anyone else has taken it. If so what side effects have you seen? Thanks
Hi. My name is Brad, and I am a 48 year old male from Illinois who has stage 4 renal cell carcinoma that was first diagnosed as kidney cancer in November of 2006, with removal of my left kidney the treatment at the time. My left adrenal gland and 17 lymph nodes were also removed at that time, and I was diagnosed with the recurrence in March of 2012. I began my Votrient tretment on April 19th of 2012, and have been on it for almost 11 months now continuously. There are some definite side effects that I have had to deal with, but I am glad to report that there has been no growth in any existing tumors, and no new growths of any kind. I am on the full 800 mg daily dose. I have had to go on blood pressure meds (Lisinopril and water pill), thyroid medicine, and was treated for an ulcer in the months since. I am currently also on carafate and prescription Prilosec for the stomach situation, and still have loose bowels from time to time, but the meds help a lot.
My hair did turn totally white all over my body within a few months. One of my biggest issues has been some recurrent foot problems, such as possible calcium deposits and some aggrivation of pre-existing arthritis in my ankle and foot area, but overall the benefits of stopping the tumors (I have 6 of them in my right chest wall) have been a blessing. I go to Barnes in St. Louis for my treatment, and the folks at Siteman Cancer Center there are top-notch in my book. I am pleased with how thorough they have been while taking care of me. If I can be of assistance, get hold of me here or on Facebook by adding me...Brad McVey
Welcome here Brad and thanks for that detailed and interesting posting. It is very encouraging for those of us following in your footsteps, or about to do so.
Votrient does seem to be an excellent treatment for most of us, doesn't it? It seems to have dealt very well with the mets you have and we'll all hope that it continues to do so and that you continue to manage the side-effects as well as you are doing - as you say, they're a small price to pay for the Votrient getting on with the job!
Hi Texas_wedge, my US was good and gated heart also good, just trying to get BP right. My recent blood test were good as well.
Good to hear. What BP meds are you on now and how are your BP figures looking?
This was the day when all the big threads got to the top - 'Recovering from radical nephrectomy', 'Sarcomatoid' and 'Votrient Side Effects'. Being (I hope) a patient Recovering from radical nephrectomy, with Sarcomatoid pathology, on Votrient, I was spoilt for choice about which thread to post this on but decided this was the best place to pose this question.
For those on Votrient who have, like me, taken on the 'chemo-albino look', does it only affect your eyebrows and the hair on your head? For me, those parts are now snow-white but certain other haireas are still sporting my original red-head's colour, though a little paler than when I was younger.
Do you have the same experience, or do I have to expect that those hairs not on display are destined to turn a whiter shade of pale in due course?
I have been accused of sometimes giving too much infomation so I decided to keep this posting short (and curly)!
What fun we could have!!
If it weren't for the censors you'd be leaving yourself grossly exposed.
I for one am happy you chose not to include pictures of the areas in question, that would be too much information.
How could I have guessed you'd pick up on this in a 'flash' Gary? Had to be you! After your al lewding to my radiologist's last scan report and her reference to my "usual bony appearances" I noticed you referring to me yesterday as a "prominent member" here and I've been dreading to think where you might go next.
Tex, Thanks for taking me back to my college years with your Procol Harum reference. As you know ,I have been on Votrient 800mg/day for over 10 months without skipping or reducing a dose. It wasn't until Feb. 6th that my research nurse commented on the fact that my hair had held out longer than most and was finally beginning to "lighten up".As concerns your other query,I will quote a phrase my grandmother used to let someone know that their slip was showing. It's snowing down south!
Did you know that those cool cats are touring soon in Scandinavia and Germany?! Has there ever been a group whose name has generated so much speculation as to its origin and such variants on the story - in their case, the pedigree cat origin? It was probably a Burmese but one might have wished it to have been a white cat!
Here's hoping our drugs restore us to the form of those college days! I'm doing OK, I think, on Votrient and Fox unbelievably well on nivolumab. Having both strings to your bow you can't fail to keep doing fine.
GOOD NEWS!! GOOD NEWS! GOOD NEWS! I dont' know how long this news will hold but i am going to live in the moment! As you know mom 80, has stage 4 rcc. She has some nodes, lungs and duoden wall. She started Votrient 400 mgs (had to decrease due to bp and headaches) on December 21, 2012. She has had to come off of it several times since then. She is off for two weeks now also. Here is the good news! Everything is shrinking.. .only one node in the stomach is more prominent and one note is slightly enlarged or stable in the lung area. But since the last scan she didn't start the meds for two months so it could have been from that period on. I cannot tell you what a sigh of releif this is. My sister had the report last night and told me it was worse because she didn't understand it. I was up crying and crying all night because i didn't know how to tell mom, she endured like a trooper with the side affects for 6 weeks. But today she reread it and things are going the way we hope. Let's pray they continue in that direction. I am about to pass out with relief! I am so glad to add to the string of good news that has been happening on these boards. I pray for those others that they get some relief as well.
I AM GOING TO HAVE A BEER! I HATE BEER!
Me too Ange. It wasn't such a bad choice after all, was it? Please pass on congratulations to your Mom for being such a trooper and geting such rewards. It's also good news that she's got such results on such a low dose and with breaks too. It augurs well for the future.
Thank you TW, I sure will tell mom! Her doctor i hope, will be pleased. He wanted her on Sutent. It is a big thanks to you also that Votrient was picked. Due to your research on the subject and when you made your final decision against Sutent for the time being, i knew it was the way to go!! A little relief for now, i will take it.
Hope you are feeling well and hoping your weight picks up. Mom has gained back about 6 pouns or so. All my best to everyone on these boards. I pray for all of us daily!
I am so happy for you and your mom!!!!!!! YES! I wish you were closer, and I'd happily buy you something stornger than beer or make you one of my frozen Margarita sensations in the Vitamix! What a super marathon we have going!
More of the same!!!!
P.S. John too is gaining weight. He registered 185 yesterday. His research nurse said "It's obvious the cancer isn't feasting on food consumption as it once was." (She was referring to his weight of 148 a year ago.) She advised he may have to begin to watch his caloric intake like any other normal male. Music to the ears!
Alice, thank you! I should would love that drink! Fox recommends it as well! a maybe some day we will all meet up!!
That is great news about John. That is quite a bit if weight to put back on, how exciting! Need I ask if he has been dipping in the Marinol lately? ;) you can just call him your little fatty from now on, happily! Keep up the good work John!! Alice, praying for the good news to continue.
anyone near from Paula?
I've been wondering about Paula as well...I sent her a PM a couple weeks ago with no responce...hope and pray all is well
Fox, Tex and I also have noted Paula's absence and tried to reach her via private email with no success. I hope and pray she's just taking a vacation from the Board.
Gary, I saw that joke and thought you had brazenly posted it where you did in recognition Ange's mention of her mom's age. I was anxiously waiting for the Ange's mom smackdown. She's a tough lady not an old lady!
Alice, mom sure is one tough cookie.... I wish i was more like her!! The therapist (physical) recently told her she is a strong woman and she is. She had a rough two months on Votrient but I know she feels it is worth it. Hopefully going forward her pressure will be better once she resumes treatment next week.
I too have email Paula, am very concerned. Don't even remember if she tried Votrient herself, i know she was a few. I am so praying that she is ok :( She is also a trooper and I know she will find the treatment that is going to work.
Gary, i shared that joke with mom and she laughed so hard i thought she needed oxygen! By the way, i read the report and it seems that two spots have totally resolved as well, i didn't mention that on the other posts. I had a good nights sleep last night! :)
Love to all and have a great weekend! Alice, still no answer on that Marinol.. I still vision John in that tutu holding a golf club.. but don't tell him! ;)
It was actually in reply to tex's "flash" comment, but somehow slipped farther down the thread. At 80 years young with that fighting attitude Ang's mom doesn't qualify as "old" in my book, but any smackdown on her part would be cheerfully accepted. BTW my mom was flashed once, she just laughed at the guy and asked if he had anything in an adult size.
Three old ladies are sitting on a park bench when a flasher comes by and opens his trench coat right in front of them.
The first old lady has a stroke, the second old lady has a stroke, but the third old lady couldn't reach him.
That joke is hysterical...took me a few up uses to get it! Lol
OK, I will fess up... almost a month on Votrient.. well about 3 weeks now... and the first sign of "whiteness" of hair is well.. below my incision... how is that..? Only some white streaks on the side of my head.. and my beard was headed in that direction a long time ago...
Whew..!! I feel better now.. heh..
Be Well All..
Hi Texas_wedge, Everything going okay BP still high just double the dose of prazosim to 2 MG still BP high, started off on the lowest dose so just tweaking it until we get it right.
See my oncologist next week, I see her every month. Being playing lot of golf, sad thing is day light saving finishes next week so back to a once a week golfer.
Glad to hear it's going well. I'm also seiing my Onc next week and I too see her monthly.
Sad about the golf - of course - our clocks go forward this weekend, so for us it means more golf! However, unlike you, we have snow coming and going constantly at present. In the last 24 hours we've oscillated between completely white and completely green. It snowed last night and this morning. Totally white acouple of hours ago, the fairway my bedroom looks out on is now mostly green again.
UK weather - nearly as unpredictable as RCC!
hi everybody :) i m so happy for finding this site i m frm turkey and i couldnt find any site about votrient users in turkey . my dad began votrient about 10 days ago and his kidney was removed by surgery 10 years ago (2003 ) now he has 2 spots in liver and 1 spot another place .he feels little tired sometimes and his blood values re normal , just his hemoglobin little high so doctor suggested us transfuse and we re so worry coz we dont know how to behave him :/ thankssssssssss :)
There are some important studies coming from Turkish universities about cancer, but you are the only Turk I can think of who has come to join us here. What part are you from? [I have travelled from Istanbul to Trabzon and Erzurum, Ankara, Bodrum, Kas, Antalya, Alanya, Perge, Side, Aspendos, Konya ... and loved it all. Good memories of magical places like Manavgat and Pamukkale.]
Tell us more about your Dad and we will try to give you all the help we can.
thankss for ur good wishes texas_wedge ;) i live in kayseri it s near to ankara , last 3 -4 hours betwen ankara and kayseri . my dad is 63 and i said his kidney removed by surgery 10 years ago ( 2003 ) and he has some spots in liver but one of them is bigger than others and he has 2 spot in paraaortic area ( i dunno exactly where is of body ) these spots re metastas of kidney parankim cancer as pathology results. and our doctor started 800 mg votrient treatment . he uses 2 capsule once a day . he gets it at 8 a.m but i m not sure it s right time or not whic one is better , he must get it night or morning ? ? i know that he must get it at the same time during treatment duration but .... he feels tired after starting votrient some times he feels cold , some times his face turns pale and bruising but it last little , he s getting be normal he cant go out for work so much . today is 10th day of votrient . and if you explain your experience about votrient , i ll be glad coz we dunno many thing and i belive that he ll recover it at the eariest .... thankssss so much for now :)
Six months of Votrient, managable side effects, GI, hypertension (controlled with meds) and, alas white hair. Thankfully a friend who is a beautician has been keeping it colored for now. Next scan in April, praying fo good results.
The general pattern with Votrient, it seems - a good drug with few troubling side-effects and manageable with meds for the important side-effects.
I hope that soon the researchers wil be able to isolate the unlucky few for whom it doesn't work so well and determine whether they have anything in common that might explain everything more for everyone's benefit.
I've just noticed I've at last been struck amidships on the hair front - soon I won't be able to prove that I once had very red hair! (Don't think I'll approach a beautician about that though.)
Saddens me, but I guess in the grand scheme of things it shouldn't rank too highly - have to focus on the important matters - might get to play golf on Friday
Have others had weight loss on Votrient? I'm running nine or ten pounds down on where I've been for a very long time (and I've never carried any surplus). I'm trying to ascertain whether that's due to stress, lack of exercise and not eating enough recently or to one of the drugs I'm on. Of course, it could be due to BP meds which most of us need to control the elevated blood pressure if V. is working.
TW, mom had lost 11 pounds in two weeks due to the Votrient and also some by meds they out her on. It seems some Bp meds make the mouth dry like cotton and eating is not fun! Also remember thatvyou had that sore in your mouth for a while and that made you eat less. IncidentalLY mom met with her onc today and he liked the pet scan rEdits and said Votrient seems to be helping. She has been off for three weeks and gained back six of these 11 pounds lost. He wants her to start back tomorrow but he only wants her to take 200 mgs and see if her pressure is still high. I it suing sure I feel comfortable with that dose at all. We shall see.
You mentioned you were having pain. Sorry to hear it. What area seems to be the cause? Any explanations for it! Golfing too much?
So glad she's doing so well - next thing she'll be copying BDS's gym workouts! Isn't it great that even with being on and off the Votrient and with reduced doses she's still benefiting anyway. I think re-starting her on 200 mg makes some sense and if it goes OK he may want to get her back to 400 mg in due course. The fact that she's regained six pounds is good too!
Your analysis of my situation is, I believe, spot on. Sore mouth and temporary loss of taste caused me to eat less and probably drink less too. Occasional slight diarrhoea won't have helped either. I put the same question out on KIDNEY_ONC and got a rash - of replies! It seems that it's a general experience to lose a noticeable amount of body mass on Votrient and also on the other TKIs. I reckon it's usually due not to the drug itself but to the sort of side-effects we've discussed leading to a spell of under-nutrition which is welcome to some who are over-weight and come out the better for it but not so much to those of us who are lean and lose only muscle mass.
The pain I'm having is from the ab wall tumour and I'm back to not being able to lie on my right side but I think I'm improving again. CT at end of April will tell whether the Votrient is continuing to beat the tumour back.
Certainly not golfing too much. I'm off to our annual Winter League Dinner at one of my inland golf clubs tonight, where the course continues under snow (see my Expressions page for pics). However, I was out on the links at Carnoustie this morning for one of the rare outings so far this year. Had to scrape ice off cars. Bitter wind and we managed 6 holes before the snow came on too heavy to continue. We trudged in from the furthest corner of the Championship Course and as we did so the snow stopped and the sun came out! Reached cars and opened trunks to stash clubs and the snow re-started, the wind blowing the snow into the trunk while loading. Closed the trunk (with bags etc covered with snow) and the snow promptly stopped!!. [Do you think Somebody is trying to tell me something?]Went into the Carnoustie Club for refreshments and came out into blazing sunshine. Now it's a pleasant spring day, though very cold still and I don't trust it.
Best wishes to you, Mom, Jaden and Henry.
OK, I am now one month on Votrient... I have been real lucky as far as side effects go... But the Diarrhea was starting to become a real pain... literally.. Plus the last couple of nights, I had issues right after taking my daily pills... I was concerned that I would no longer be getting the full strength... So, I took out the Imodium... took two pills, two hours later had a nice big dinner... two hours after dinner took my Votrient and went to sleep... Zero Diarrhea..! Imodium is my new friend..! So far, life is a lot better..!! (as always, check with your Doc.. yadda yadda..).
Today—for the first time in 326 days—John (one putt) will not take his Votrient pillls. Dr. Hammers made the decision to pull him off the medication (Votrient) temporarily (3-7 days) to allow his mouth time to heal. He’s been experiencing gum bleeds and has a nasty mouth sore that has been giving him trouble over the past week+. He also has a dentist appointment on Wednesday to see if the sore is actually an absess and to rule out osteonecrosis (ONJ).
He’s a little disappointed to interrupt his *record as he takes great pride in his continuous dosage. (*According to his research nurse he’s the only trial participant that hasn’t taken a break from Votrient/Pazopanib.) But he/we know how fortunate he has been up to this point. We’ll keep our fingers crossed that it is just a blip on the radar.
Since there are a lot of newbies on the board, I've copied his history to date below.
John’s History at Johns Hopkins since diagnosis:
10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.
Symptoms: weight loss followed by cough11/1/11 – Surgery for removal of right kidney (nephrectomy)
Treatments to date:January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;(discontinued after February 2012 as scan did not merit continuation)April 2012 – began monthly shots of Xgeva
May 10, 2012 – began Nivolumab*/Votrient (800 mg) trial (*BMS936558/MDX 1106)
6 week scan results
6/20/2012–CT scan showed 31% reduction in tumor burden;8/1/2012–CT scan showed 42% reduction in tumor burdern (11% additional):9/12/2012 – CT showed 46% reduction in tumor burden (4% additional);10/24/2012 - CT scan reflected stabilization;
**scans from this point will be at 12 week intervals
12 week scan results
1/16/2013 – CT reflected 51% reduction in tumor burden (5% additional);
Thanks TW! It is amazing that you remember names so well! Have you taken a course in memory school? How is the wife feeling? I hope she is doing better now and back too her old self.
Sorry the snow ruined your day, but six rounds is good, especially for a brutal, cold and windy day! Mother Nature can be cruel at times, she could have at least let you finish!
I wonder why you started to feel pain again. Could it be that you are doing too much and your muscles are sore? In any case it is good you are improving again. Any trials being done in your area for bms? I hope you continue to feel better.
I am not comfortable with mom on 200 mgs, I have not heard of anyone on that low a dose and she doesn't see her onc again until the end of may. Her pressure went up slightly. We shall se how it goes.
You take care and sending big hugs to you!
Hi, being on Votrient for about 2 months having a week break due low white cell neutropenic. Still adjusting BP medication. I feel fine, will do blood test thursday if results okay will start tablets again. My oncologist think that i may have to go down to 600mg of Votrient.
Do you have your actual figures for WBC and maybe also neutrophils and platelets that you could share with us for purposes of comparison? (I try to put some useful figures for myself into my blog, which is a convenient place to log them for future reference, both for others and for myself.)
Glad to hear the BP agents are doing their job. Votrient doesn't seem to be as dose-dependent as Votrient seems to be, so 600 mg may be all that's necessary for you - others seem to keep doing fine on still lower doses and with breaks.
Anyway, can now say that I posted here to keep these posts (all on the same topic) together in one place.
Hi my blood results were good, my white blood cell count was 145 up from the last 2 which 95 and 115.
Unless our respective countries use very different units, that's probably your platelet count? If so, that's fine (and certainly better than mine) and I hope you're feeling correspondingly good.
Hi All..!! Time for an update on my Votrient experience. After almost 5 weeks (800 mg), I am now (temporarily I hope) off the drug.. My Liver Enzymes went up and so the Onc said take a one week break and re-check the blood work... I hope to get back on Votrient tomorrow.... fingers crossed... Onc said would reduce to 600 mg if my Liver tests come back improved...
So, the sum of my side effects are... erratic - high blood pressure.. I was on Metorprolol prior to Viotrient, and my heart doc increased the dosage in anticipation of what the Votrient would do (smart heart doc.!). My blood pressure stabilized during week 2... not an issue... I did have some slight headaches when my BP went up..
White hair.. ho hum.. no big deal..
Gout like pain in my left foot.. not sure if it made any difference, but I eliminated lemons in my water, and cut way back on any orange juice... the pain went away and never came back...
Diarrhea - yes.. as stated earlier Imodium took care of that..!
Tiredness.. I slept a lot... Keep in mind I was / am working full time.. would sleep most of the weekends...
Overall, not bad..! nothing to worry about, except the Liver part...
I did follow others suggestions here, and took my pills (800 mg) just before going to sleep.. never had any nausea that way.. Thanks to those that suggested that..!
I hope you can get back on your Votrient tomorrow.
Just a thought about your "Gout-like" pain.
I think you already are aware that fructose consumption can lead to excess uric acid being excreted from your liver. That, of course, can lead to Gout.
Fructose gets metabolized very differently than glucose by the liver (and the rest of the body).
Fructose occurs naturally in many fruits. But that usually is not a problem if the whole fruit is eaten because they also contain lots and lots of fiber. The fiber inside of the fruit mitigates many of the ill effects on the liver from consuming the fructose.
However, if that fiber is removed, as it is in most fruit juices, then it can become a real problem. That is why eating whole fruit is good for you but drinking fruit juice is not. In fact many fruit juices contain more sugar(s) than many soft drinks.
So consuming sufficient fiber with fructose (as it is naturally packaged in with the whole fruit) usually mitigates the problem for the liver. However, since you are also reporting elevated liver enzymes, it sounds like your liver just could not deal with it.
Bottom line: try not to consume any excess sugar(s), especially fructose. But if you do, make sure you take it with a healthy dose of extra fiber and/or protein.
Keep in mind that ordinary table sugar is made up of 50% fructose and 50% glucose. High Fructose Corn Syrup (HFCS) is usually made up of 52% fructose - but in some formulations it can contain far more.
Hi All..! OK, I decided to add to my last post, because I think some discussion may be useful for others... I hope. So, my blood test from 3 days ago revealed that indeed my Liver Enzymes are headed in the right direction, but my Onc wants me to wait a few more days and have another blood test to be sure...
Here is the discussion points... all comments welcome for sure..
So, I was initially told to get blood tests every two weeks. However I balked a bit, and the Onc relented and said that it was likely OK to go four weeks. We could all easily say that was MY mistake to wait to four (plus) weeks. However we can also say that getting four full weeks on the Votrient may be more beneficial than possibly only getting two weeks at the full 800 mg dose. The plan most likely is for me to go on to a 600 mg dose, starting the end of this week (after my next blood test). I am still about 3 plus weeks away from my first scan after starting Votrient...
My thinking, is that it was better to get the four weeks at full 800 mg strength than having to stop at 2 weeks and start on a reduced 600 mg dose... Yes i have read that some (many..?) people respond well at 600 mg, but...??
Feel free to make comments... plus I hope this somehow helps others in some way...
Useful feedback Ron.
As I've noted elsewhere (you will want to keep up to speed there, too) practice in the expert centre where I'm treated is to check liver enzymes after a week and, assuming no signs of scary levels (meaning, e.g. screaming up into the hundreds for ALT) again in another 3 weeks, then monthly thereafter, with intervention only if necessary. I'm nearing 6 months on 800 mg with levels normalising. A fortnight ago my bilirubins level was in normal range and ALT 83 (normal range 5-55) and my Onc is comfortable with that. (Of course I'm 70 so criteria are a little different re whether more likely to die with cancer than from it and I'm generally very fit and strong with the only annoying chronic side-effects being GI discomfort.)
Votrient seems to be dramatically more dose-independent than, say, Sutent and there are folks doing fine on 200mg/day and even on 100 mg. I think you shouldn't worry too much about being on a lower dose level, or taking breaks. I would be happy to reduce my dose if my Onc felt it sensible, to make for greater abdominal comfort. However, I doubt that she will. With my extremely rare pathology and ultra-dismal prognosis I reckon she'll feel that if my next scan (Thursday next week) shows good results the philosophy should be 'Why rock the boat? Let's stay with the max dose and hope to keep on winning', if I'm prepared to endure the s-e's.
What are your liver enzyme readings just now? I'll update my blog here, on my CSN personal pages, after my next scan and then again, probably, after my following Onc review appointment. It's useful to compare notes isn't it?
Wedgie... thanks for the feed back.. but of course that leads me to yet more questions.. I wonder that "IF" people respond on a smaller dosage, might that extend the time that the drug works..?? Or perhaps the dosage has no effect on how long the drug works..?? I do see (like you) that some do fine on 100 mg a day... some on 200, etc... And the big unknown is that by starting up with the 800 mg a day, perhaps that may help prevent more Mets from showing up.. or slowing them down as well...
Yes questions with no good answers, I suspect.. but thanks for your info... I do not have my test results in hand... but I am going to have more tests done the end of this week... I will ask to see the numbers then...
Hi All..!! OK, so about 17 days ago, I was told to stop taking the Votrient 800 MG.. my Liver Enzymes were very high... but have gone down near normal overall... So, 2 days ago I am back on the Votrient at 600 MG. We will see how I do... Keep in mind I have yet to have any scans (just blood work) since starting the Votrient... and my Onc wants to put off the scans until the Votrient has a chance to work for me... just another feww weeks is my guess...
So, what did I learn..? First, some suppliments are NOT good for use with any drug that can elevate Liver Enzymes...! No, I was not on any suppliments, but I know some folks are... And I must give the caveat, we are all differnt... check with your Onc..
Also, within about 2 days of being off the drug, I was pretty much back to being a normal person... more energy, the diarrhea stopped, etc... Felt great to be off the drug, however we all know... that the Cancer inside is the real enemy... I got a LOT done in the last two weeks... got my race bike almost ready to be raced next week..! Yes..!!
Now I am back on Votrient.. I was surprized that the side effects started to show back up literally over night..! My blood pressure elevted, the headaches started, some nausea, and of course diarrhea and fatigue. With the initial start up of the Votrient, it took about a week or so for all of these side effects to show up... yet this time within hours... and in addition to listed above, my skin tingles / itches which it did not do before... interesting... My take is that the drug never totally left my body in the time off... and that may mean it was still working to some degree... I hope..!
I am on B.P. meds, so that should be OK in a few days... but I thought there may be some value in my experience, for others...
I was diagnosed with stage 4 RCC almost 3 years ago. I had my fight Kidney removed at Mass General on 11/7/10. I had 2 treatments of IL2. 2nd treatment was pretty rough. The scans after showed that the treatment wasn’t a home run but more of a double. For over a year there was less than 1mm of growth on any tumor each scan. Then last month one in my right lung grew 1cm. That was enough for the Doctor to say that I will be starting Votrient.
I have been on Votrient for just about a month. First week was rough. The nausea really got to me. The Doctor gave me some medication for that and the acid reflux that I was experiencing. It felt like chest tightness and felt better when I drank water. Since the addition of the 2 meds I have been fine for the most part. Occasional diarrhea nothing that Imodium can’t stop. But the taste change is the worst. Nothing tastes right. I have a metal taste in my mouth.
I have been doing everything that I was doing before I was diagnosed with Cancer. Working full time. I bowl 25-30 games a week. Fish bass tournaments when the weather allows. So far so good. Losing a bit of weight 8 pounds this month. Mainly because nothing tastes right.
I will have my first scan in 8 weeks. Can’t wait. Hopefully they are going to shrink
Good stuff Ed - you found this thread and it seems as if you're going very well on Votrient. One thing that can help with the taste is to avoid metal cutlery and even metal utensils as far as possible until your taste starts to return to normal.
Good luck with the scan results - I had my second scan on Votrient a few hours ago, coming up to 6 months on it. I'm playing golf tomorrow morning and may play two rounds.
Your experience--on and off Votrient--is interesting. John went off the Votrient a couple of weeks ago due to mouth sores and his research nurse told us the Votrient vacation would make him feel like a new person. But it didn't. There really was no discernible difference for him during his week off Votrient. Of course, John has'nt experienced high blood pressure from the Votrient which make many believe he is not benefitting from that part of the trial (Nivolumab/Votrient), and they may be right. It could be the Nivolumab that's doing the work on his tumors, but then again it could be the combo.
Here's another tidbit for being your own health advocate no matter how many doctors are looking out for you. Just a week ago, John realized a mistake he was making. He has been taking prevacid/priolosec on a rotating basis after it was prescribed by his gastroenterologist years ago. He just learned Prilosec was a no-no so he's discopntinued its usage. Could taking it have compromised the Votrient? We don't know, but we'll see.
Anyway, hope your return to Votrient is the magic bullet to get rid of the tumors. It does sound like the Votrient never left your system.
I was just wondering if anyone on this thread has had a good response on Votrient without any known problems with high blood pressure?
What would the symptoms of high blood pressure be? My Dad has been feeling really terrible over the last few days, describing feeling really really dizzy, which can come on all of a sudden, he says it feels like the worst hangover ever except without the enjoyment of having a drink! Thankyou.
Kelly, hypertension is known as "the silent killer" because you don't get symptoms that warn you of high blood pressure. Why don't you ask his nurse/doc what his BP looks like in the recent readings. You can check BP yourself very easily - digital blood pressure monitors for use at home don't cost much and that way you could keep a close eye on your Dad's BP any time you want (I take my own BP on a daily basis, at home).
Is your Dad on any BP meds? If he's not, please find out what his BP is at the moment. If it's unaffected by the Votrient, it's likely that the Votrient isn't working for him (it's a very good drug for a lot of people but not for everyone). If it's not working then he'll want to get off it to save himself feeling rotten for no good reason and the sooner he switches to another drug the better.
However, it may be that his BP is higher and the Votrient is working, so the sooner you can find out what his BP is the better.