New to the group

imnrn697

Hello all,

Im new to this group, I was diagnosed in July 2016 after removing a large tumor 17 cm and my right kidney.  My markers were T3N0M0. My furman was grade 4 and necrosis was 50%.   I am think about taking the drug Sutent (Sunitinib) but have read some disturbing things about it.  Anyone taking this drug? Can you give me some insight?  How are you feeling, what is your story?  Any help would be very appreciated.  Thank you.

Jojo61

Welcome to our forum imnrn697

Welcome to our forum imnrn697 - heck of an initiation to join our group! Wow, that was a whopper of a tumor! Mine was 13 cm and also T3N0M0....but grade 2. Do you have more details on your path report? Also, are you seeing an oncologist who specializes in RCC? That would definitely be the way to go. I was told that removal of the kidney and tumor were all that would be needed. And that was 3 years ago and am still going strong. However grade 4 may need to be treated differently. Did your doctor suggest Sutent? I am sure others with experience in these drugs will chime in soon. I would also suggest joining Smartpatients. There is a wealth of information there as well.

Take care and good luck with your decision!

Hugs

Jojo

Jan4you

Hello and glad you found this

Hello and glad you found this site! Just so you know, there also is PatientsLikeMe.com which also has a RCC forum.

I cannot help you about this drug, but keep posting others will come and help you. Hey, we're here for you!

Remember you are not alone and will walk this journey along side you all the way!

Sending you gentle, calming Hugs, Jan

 

imnrn697

Jojo61 said:

Welcome to our forum imnrn697

Welcome to our forum imnrn697 - heck of an initiation to join our group! Wow, that was a whopper of a tumor! Mine was 13 cm and also T3N0M0....but grade 2. Do you have more details on your path report? Also, are you seeing an oncologist who specializes in RCC? That would definitely be the way to go. I was told that removal of the kidney and tumor were all that would be needed. And that was 3 years ago and am still going strong. However grade 4 may need to be treated differently. Did your doctor suggest Sutent? I am sure others with experience in these drugs will chime in soon. I would also suggest joining Smartpatients. There is a wealth of information there as well.

Take care and good luck with your decision!

Hugs

Jojo

Margins clear

Thank you JoJo, yes I am seeing an oncologist my surgeon suggested I see, not sure if she deals with RCC only, but probably.  She was the one that says I should take the drug because I'm considered high risk due to grade 4.  I'm just so torn of what I should do.  I feel great, my 4 month CT scans of lungs, pelvis and abdomen were clear.  My labs have always been normal except for slight increased creatinine now with one kidney.  The only symptom I had prior was a vague intermittent pain on my right side, and I noticed a low grade fever daily.  Surgery was 7 hours but all my margins were clear with no lymph node involvement. I do have my path report it was clear cell.  Just not sure what to do now, read on ACS website that this drug does not really help if there are no metastasis cells. It seems this drug attacks angiogenesis cells and if you don't have any then it attacks other cells hence the side effects. 

imnrn697

Footstomper said:

'The only thing that is

'The only thing that is predicatable about RCC is its unpredictability', said my Dr.

So, with that in mind, I have been on Sutent. It helped to reduce the size of my mets quite considerably, but the side effects eventually became too much and I had to stop. Other people have had a different, successful, long term relationship with Sutent

Stopping the drug

My oncologist did say if I start to have side effects, she would reduce the dosage or take me off all together. But then she also told me if I didn't take it and it comes back, I could face my mortality.  Needless to say, I didn't want to hear that only being 55.  If you read what I wrote JoJo and what I read on the ACS website I'm torn.  I did read another article in the New England journal of medicine that maybe you posted, that states it is working with metastatic CA, but nothing about adjuvant treatment.

donna_lee

Is the Dr. a specialist in...

Renal Cancer?  Or "just" an Oncologist.  At Dx and path after surgery, mine was Stage 4, T2b, N1,M1 Furhman 3-4.  But no drugs.  A Renal Onc. specialist will not generally put you on any drug without confirmation there is a mets that can be monitored.  Mine had already mets to liver and nodes. And subsequent recurreces (2 times) that grew after the first surgery were found in nodes that were removed when discovered.  Still no drugs.

I don't know that the side effects of the drug have been ever measured against the ability to prevent a subsequent metastasis from becoming large enough to be discovered.  This is a topic that definitely needs to be discussed with who you are seeing; and possibly cause to be referred to a specialist in Renal Oncology.

That said...welcome aboard and good luck.

donna_lee

 

Dutch1

Sutent is a common treatment

Hi;

I was stage 4 four years ago.  The surgeon removed my right kidney, the adrenal gland and a hand full of lymph nodes.  After that, I was told that the usual treatment was to wait and monitor with scans.  I wanted to do something besides wait for the cancer to come back, so I went on a test trial with another drug for a year.  Six months thereafter, the cancer showed up in my chest.  At that time, I went to Sutent.  I was on it for a year and it worked fairly well.  Side effects vary a lot from person to person.  I understand that Sutent is the first drug that oncologists go to these days.  Or, one of the first ones.  I'm not familiar with any normal protocols which prescribe chemotheraphy immediately after surgery when no distant sites exist.

Best wishes.

Dutch

penitent

50% necrosis but any sarcomatoid features?

My Son in Law is Stage IV grade 4 with extensive necrosis and 60% sarcomatoid features.  He started on Votrient but the side effects were too tough for him so he was moved to Opdivo for six infusions.  As others have told you, different meds works so very different for folks, which is why when something doesn't work...you move on until you find something that is effective.

imnrn697

donna_lee said:

Is the Dr. a specialist in...

Renal Cancer?  Or "just" an Oncologist.  At Dx and path after surgery, mine was Stage 4, T2b, N1,M1 Furhman 3-4.  But no drugs.  A Renal Onc. specialist will not generally put you on any drug without confirmation there is a mets that can be monitored.  Mine had already mets to liver and nodes. And subsequent recurreces (2 times) that grew after the first surgery were found in nodes that were removed when discovered.  Still no drugs.

I don't know that the side effects of the drug have been ever measured against the ability to prevent a subsequent metastasis from becoming large enough to be discovered.  This is a topic that definitely needs to be discussed with who you are seeing; and possibly cause to be referred to a specialist in Renal Oncology.

That said...welcome aboard and good luck.

donna_lee

 

I'm not sure my oncologist specialises in renal but I will find out. I go to UCI in Orange,CA, my surgeon was from there also and he was a urology oncology surgeon, he referred me to her so I can only assume, but I will definitely fine out. Is there a renal oncologist at City of Hope, does anyone know?  I will pay out of pocket to see one there for a second opinion. Any names?

imnrn697

penitent said:

50% necrosis but any sarcomatoid features?

My Son in Law is Stage IV grade 4 with extensive necrosis and 60% sarcomatoid features.  He started on Votrient but the side effects were too tough for him so he was moved to Opdivo for six infusions.  As others have told you, different meds works so very different for folks, which is why when something doesn't work...you move on until you find something that is effective.

No sarcomatoid

His cancer had already spread I'm assuming since he was stage 4 And they started him on the drugs.  That's my dilemma, mine is stage 3 with no mets, so how is this drug going to help me?  What will this drug attack, there are no cancer cells to destroy at this point.  She is using it prophylactically or adjuvant to suppress secondary tumor formation.  But what I reading, Sutent is not useful adjuvant.

JerzyGrrl

imnrn697 said:

I'm not sure my oncologist specialises in renal but I will find out. I go to UCI in Orange,CA, my surgeon was from there also and he was a urology oncology surgeon, he referred me to her so I can only assume, but I will definitely fine out. Is there a renal oncologist at City of Hope, does anyone know?  I will pay out of pocket to see one there for a second opinion. Any names?

Your oncologist's specialties

If your oncologist is at UCI, you can go to their website and search the physician's name to see their background, specialties, etc. (Actually, you can do that for most big hospitals).  There are some good people there. 

I got my primary care physician to request a second opinion for me and didn't have to pay (except for the copay).  If I had done that on my own, I would've had to do it strictly self-pay (because the medical center was out of network for me), but my medical group contracts with them, so it was covered. Who knew?

There are definitely physicians at City of Hope who specialize in renal oncology, some of the folks here have been there [Give the forum folks a little time to respond :-) ].  Possibly your primary care physician can put in a request for a second opinion at CoH?  It's worth a try! 

All the best --

Jerzy

Footstomper

imnrn697 said:

Stopping the drug

My oncologist did say if I start to have side effects, she would reduce the dosage or take me off all together. But then she also told me if I didn't take it and it comes back, I could face my mortality.  Needless to say, I didn't want to hear that only being 55.  If you read what I wrote JoJo and what I read on the ACS website I'm torn.  I did read another article in the New England journal of medicine that maybe you posted, that states it is working with metastatic CA, but nothing about adjuvant treatment.

This is the new normal

There are a panoply of treatments out there. They work for some people but not for others as do different dosages. They give some people bad side effects, other people nothing.

You work your way through the menu until you find a drug that works for you. I do not regret taking Sutent (or any other treatment) for 1 minute. The good news is that the menu of possible treatments is expanding all the time. Trust your oncologist and be very careful about your own research (much out there is out of date, other stuff is just plain crazy). The NEJoM is a fine journal but I confess its way over my head, even though my wife publishes in it.

Footstomper

'The only thing that is

'The only thing that is predicatable about RCC is its unpredictability', said my Dr.

So, with that in mind, I have been on Sutent. It helped to reduce the size of my mets quite considerably, but the side effects eventually became too much and I had to stop. Other people have had a different, successful, long term relationship with Sutent