CSN Login
Members Online: 4

You are here

New Votrient Clinical Trial!

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

Hi Everyone

I'm back! Four weeks post op tomorrrow. Had liver lesion removed with success and a tumor on my right back muscle where former kidney lay.  Technically right now I'm cancer.

Because my oncologist said I have a very aggressive cancer I was selected to be part of a clinical trial just approved by the FDA for patients who's metastatic cancers have been surgically removed to see if Votrient will keep recurrence away.  There will be only 128 of us participating in this trial Nation wide. Of course, there is a chance I will get the placebo, but I thought if this gives me an opportunity to help myself and others why not.  Otherwise, I do not qualify as my tumors were surgically removed.  

Reading some of your posts regarding side effects of Votrient, I can't imagine that I won't know if I'm getting the placebo or the real thing.  I feel sorry for those of you so sick with this drug but hope you see lasting healing.

Happy and Health New Year to you all!

-Bonnie

mrou50
Posts: 389
Joined: Mar 2013

I Have been on Votrient for a year, you will definitly know if you are on Votrient compared to a placebo, especially if they start you out at 800 mgs.  As Footstomper says get baby wipes that are very soft you will need them.  Keep us posted and I hope it goes well.

 

Mark

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

Thsnk you for the good advice!

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Bonnie, I was reading your profile.  When you had the second recurrence, can you describe your symptoms in more detail?  Was the pain constant?  Sharp?  Specific location?  Were you getting scanned after the first surgery?Is it rare to have recurrence on the SAME kidney?

 

I had a partial nephrectomy in July 2014, and my 6 month scans have been clean.  My next scans are due in mid-January 2016.  I have been having lower right back pain (same side as surgery) for the last several weeks, and also some slight intermittent pain near my incision in the right abdomen. I am going to call my doctor and alert them in case they want to do any additional scans, and I am hoping I am just being paranoid.   Thanks, and I hope your trial goes well.

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

Do NOT believe the oncologists when they say there is no pain associated with kidney cancer.  I have had pain all three times.

The first diagnosis was in Dec, 2011. I had upper right quadrant pain (belly) that would come and go. Thinking it was gallbladder issues, my doctor ordered an ultrasound which showed a 5 cm mass growing on the bottom of right kidney.   Partial nepure tony in Jan 2012 was done like you in open fashion in order to salvage as much of kidney as possible due to my "young" age :) and low gfr.  I only had scans done every other year according to guidelines (another subject Imhave opinions about). Oh and low and behold pain disappears!

A year ago I started not feeling well again and having pain. Some of it was right front belly pain again but most of it was right flank pain. It seemed to be more dull and nagging. I knew I was due for my scan and having just moved to Iowa from NH I had to find a new oncologist.  In March after getting all the testing done it was confirmed I had a 3 cm mass in the kidney right near the vein which was essentially the bottom of the kidney having lost the bottom third of the kidney in the first surgery. Of course oncologist tells me the pain is not from the cancer. Kidney tumors grow about a cm per year which means this one just continued growing after partial  nephrectomy.  April, 2015, open radical nephrectomy. Pain disappears!  Now because of tumor being near blood supply testing would now be every three months. 

July, 2015, again started having terrible back pain just below the flank area. This time extremely painful and sharp. Knowing I was due for MRI end of July! I waited out the few weeks.  Once again, the MRI showed a possible recurrent tumor on the quadratus lumborum muscle which is essentially the muscle behind the right kidney. I told the doctor about the back pain, and of course he said it was not related and that the MRI was most likely showing surgical changes and not a tumor. 

October, 2015, back for three month tests. MRI showed that the spot on back muscle was enhanced and had grown. It was indeed a tumor. MRI also now showed a lesion in my liver that had also grown. On Nov. 30 I had two surgeries to removed both tumors. Both were metastatic RCC.  Guess what?  Severe pain in my back was suddenly gone, I could lift my leg and walk normally!

I know this is kind of long, but I am on a mission to change the minds of all these doctors' claims that RCC does not cause pain. My current urology oncologist in Iowa is now a believer. I'm telling all of you here do NOT dismiss any pain if you have had RCC in the past. Funny thing is I never had the "normal" symptoms like blood in urine. 

I'm glad you have new scans coming up in a couple of weeks. Please let me know how they turn out. Wishing you all the best for a Happy and Healthy New Year.

~Bonnie

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Bonnie-that is quite a lot of interesting information.  Interesting that your scans all seem to be MRI.  I don't think my doctor likes to use MRI's, and my scans have been by ultrasound only.  I am going to contact my doctor and ask if another type of scanning can be done.  The pain in my lower right lumbar area of my back has not been constant, and it seems to be doing away.  As I said above, the pain in the same area of my incision has been mild, and it comes and goes.  But from reading your story, the saying an ounce of prevention comes to mind.  As far as kidney cancer and pain, doctors can be funny.  Wonder if there have been any studies corelating pain and kidney tumors?  I don't like how some doctors sometimes categorically rule some things out. Hope your 2016 and beyond is healthy and wonderful.

Allochka's picture
Allochka
Posts: 911
Joined: Nov 2014

Bonnie, good luck with Votrient!

Positive Mental Thinking, any persistent pain better be checked out. But most probably your pain is nothing to worry about. Lower back pain is SO common, everybody gets it once in a while, and it can be very persistent. Remember that Forough had ongoing chest pain some time ago and was worried too? It appeared to be nothing. We are humans, we hurt from time to time, especially in such vulnerable place as lower back.

Check it, but do not assume at once that this is cancer. BTW, most people here didn't have any pain...

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

If there is a question of pain in the skeletal system, ie, low back, hip, spine, then a full body scan is appropriate. Any tumors will light up. But that is all you will know. Then suspecious areas can have an mri to show the details. Since early mets tend to grow closer to the mother ship, a 3 month ct scan of chest, abdomen and pelvis is performed. That is within normal protocol. Insurance may vary. Stage 1 or 2 may be different.

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

Early on when I was considered Stage I, I had CT Scans every other year without contrast because of CKD. Unfortunately, without the contrast my recurrence was not found earlier. Now that I have to be checked every three months, I have MRIs because, as long as my gfr remains above 35 (it's 43 lately), I can have MRI contrast which allows much more to be seen. In January I have to have a Lung CT Scan, and MRIs of  Chest/Abdomen, Pelvis, and Brain.

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

we will have used enough scan energy to light up the ball on New Years eve. Or pop the fuse.

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

Ha ha that's a good one Fox!

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Foxy, Bonngo, and anyone else who wants to chime in--my doc at MSKCC has been doing ultrasound for my 6 month scans.  I was stage 1, clean margins, and so far, so good. But the strange pains in the area of my incision/scar and flank pain that comes and goes has me concerned.  And I am not a worry wart. My MO is typically to ignore pain and hope it goes away.  I am going to call my doctor's office tomorrow to see if he will order a CT scan, but was wondering what your thoughts were on the ability of ultrasound to pick up problems in the early stage.

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

the important part of pain that comes and goes is that it is not cancer related. Tumors are consistant or growing. So pain should at best stay the same or get worse. Also an ultrasound doesn't reveal small tumors easily. They have to be of a size that will reflect the sound waves creating a picture. This means a more solid mass. The US also will only show the exact spot it is aimed. So missing a tumor can be easy. If a tumor regrows where it was removed, they will catch it. But not likely a met that has grown in another area. A ct scan would be more appropriate if mets are suspected. Your stage 1 with clear margins is as good as it gets. A growth is not likely. But your pain can be from increased activity, scarring, or adhesions. Your body may still have inflammation and pain may be only reflexive in nature.

An ultrasound is created by generating a frequency of about 1 million pulse per second. It sends out the signal which easily passes through soft tissue. It is slowed down and reflected by tissue interfaces which have varying densities and h2o concentrations.. ie: skin is different from fat, is different from tendons, is different from kidney tissue etc. The US creates the sound pulse and "listens" for the reflected echo. It listens 99% of the time, sending impulses only 1% of the time. It is perfect for finding kidney stones. Not so much for small tumors. But, insurance dictates the procedure until backed into a corner and it has evidence of a worsening condition. Keep complaining about pain and contact your insurance directly. Push for the ct scan and you should get it. Be the squeeky wheel. If you cannot convince the person you are talking with, hang up, recall, and speak with someone else.

Ah, the art of negotiating the health care system.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

yep, it comes down to being a squeaky wheel to get the "better" scans and treatment.  I remember it well when I had to fight my insurance company to have my partial nephrectomy done at MSKCC.  The odd thing about my flank pain is it hits me when I am sitting in my car or at my desk at work.  The pain is not limiting me in any way.  Still riding my mountain bike and working out.  I called my doctor's office today at MSKCC to let them know what was up, since I am going for my US on January 18, and follow up visit on January 21.  I did a bunch of reading last night on US vs. CT vs. MRI.  Foxy, the information in your post above is more technically detailed than the articles!  I am an engineer by training, and I do patents now, a lot with medical devices and pharmaceuticals-and I am pretty good with reading and understanding technical information.  My doctor's office said they would call back if they thought I needed different or additional scans.  I'll remain vigilant, but not paranoid, and hope it's just a normal ache/pain.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Contacted my doctor's office at MSKCC.  Nurse called back and asked several questions about the nature, location and severity of the pain.  The nurse checked with my urologist-oncologlist, and they called back and said not to worry, and they would do the initial scan on the 18th of January by US, and if necessary they would order a CT scan.  I have to put my faith and confidence in my medical professionals-the fine folks at MSKCC and Dr. Foxy!   I did not mean to hijack Bonnie's thread with my issue, but I saw her symptoms and saw some similarity.  I sometimes feel silly posting here with my trivial problems and pain.  Anyway, will check in on the 21st with my results, which I hope to be NED. 

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

I've been through this. Sometimes I forget things as I move forward. I was dx'd in march 2011 with a 7.5 cm tumor. It must have been growing there for a couple, few years at least.

2 years earlier I had abdominal pain issues. Ultrasounds were done and I had my gall bladder removed. That means the ultrasound did not detect my tumor, nor did the surgeon who removed my gall bladder. I have believed that if the tumor had been found then, I would have been a healthy stage 1 survivor. No such luck. A ct scan at that time should have found the tumor easily. I was probably in a crappy HMO.

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

Your story is inspiring and your pic shows your beauty inside and out!  Sending happy thoughts your way for Votrient to work for you :) 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I was offered this trial when I had my adrenal tumor (first and only metastasis) removed last February. I chose not to do the trial.

I hope it's successful for you.

Best,

Todd

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

Thank you Todd and Lil.  

P_M_A I do not want to frighten you, but I had pain all three times! After each surgery, pain was gone. The second recurrence, I had the intermittent flank pain when it was found the tumor had regrown on the remaining kidney.  Four years ago, I too, was Stage I with clear margins and was told only a 5% chance of a recurrence.  This last occurrence the back pain was because the tumor was on a muscle where the right kidney lies. 

I do hope you get approval for either a CT Scan or MRI.  Keep us posted.

 

~Bonnie

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

Bonzo, I've had pain with my bone and spinal canal mets also. So yes they hurt. Recent complaints have led us to finding new mets in my humorous and femur. When does it all end? (I asked rhetorically)

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I had pain with my adrenal met. That pain caused them to move my scan up because I was about to leave the country for 2 months. I thought the pain was in my right lower ribs. However, they found the adrenal met when they did the CT scan and it was nearby.

I also had pain with my kidney tumor, but I'm pretty sure that pain was caused by blood clots passing through the urethra which caused pain very similar to a kidney stone (which I have first-hand experience with). A year earlier I had blood in my urine with no pain at all.

On the other hand, I had pain in the area after all my surgeries for several months and the doctors said they were probably adhesions. I think they were correct. Adhesions are internal scar tissue that causes internal organs to be sort of "stuck" together and it can take awhile for this to loosen up over time. I think it can even stay permanently sore when you move around as scar tissue can remain. You may be having pain from adhesions. Still, better to get some peace of mind and have it checked out.

I've been having terrible pain in my TMJ on my right side (the jaw joint). I won't feel at peace until it either goes away or they do the scan. Pain that comes and goes is probably not a met (probably is the key word...).

Todd

Pandabear1011
Posts: 123
Joined: Jun 2014

Happy New Year, Bonnie. Glad to read that you're cancer-free. Wishing you success on the Votrient trial. Not a lot of adjuvant trials out there. so, it should be interesting! I'm sure you will keep us posted. Hugs from Panda in Texas.

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

and Happy New Year to you!  Yes, I will keep you all posted!  First step will be passing all three MRIs and CT scan on Jan. 19th.  If they find any more mets I will be disqualified from the study. 

~Bonnie

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Fingers on both hands, toes, everything. Please let us know. Wishing you tumor freedom when you have your scans!

Todd

Subscribe to Comments for "New Votrient Clinical Trial!"