Scared this time

DaBabysDaddy

In May 2012, as I was undergoing my retirement physical, after 22 years in the Army, the doctor found a large tumor on my right kidney by accident. I had no signs or symtoms of any major issues at all. About a week later, I was to undergo a partial nephrectomy on my right kidney. When they went in, they decided to remove the entire right kidney. It was tested and confirmed that I had Renal Cell Carcinoma. The doctor in Louisville, Ky told me I was “cured” (his word). I was told that in “rare cases”, it could reappear in a bone, if it appeared anywhere at all. He sounded confident, so I was confident! I was 46 years old, and feeling good. I underwent scans every 6 months, and each one was clear.

Fast forward 4 years, no symtoms, or signs of cancer anywhere. I went to open a car door with my left arm, and thought, that I may have pinched a nerve, or pulled a muscle. Found out later, I had broken my arm in 3 places. A large tumor, had completely eaten through my radial bone, in my left arm. About a week later they (the Durham VA Hospital), resected a 4” piece of bone from my left arm. Once again, feeling good. They found cancer... they removed cancer. The doctors still saw no need for medication, because the cancer was removed. They did step up the scans to every 3 montns.

in June (2017), my scans were completely clear, except for a tiny spot on my lung, too small to biopsy. October 2017 (just 3 months later), the doctors found a 1/2” tumor in my left tibia bone, 3-1/2” tumors in my pancreas, and a 3/4” tumor in my remaining left kidney. Devastated! It grew so aggressively, so fast! I am ate up with it! Still no pain or symtoms!

They‘ve decided that the surgery on my kidney is not a good idea. The pancreas surgery is too radical, the lung spot is still small, and to apply radiation to my leg, will only weaken my leg bone. If they remove the leg tumor, they will have to place a rod in, to support my leg. Today (almost 2 months post discovery), I have taken my 1st Sunitinb 50mg capsule. I have to admit, being a 51 year old, father of 5, with a wife and 4 beautiful grandbabies... I am scared to death!

My grandfather (father’s dad) died of cancer and diabetes, at the age of 52. My father died of lung cancer, liver, heart, and kidney disease, at the age of 47. My grandmother (father’s mom) woke up disoriented one day, age 67, and they found an inoperable brain tumor. 1 month later, she died.

im scared for me... and I am scared for my children. Cancer is coming to take me away!

Dutch1

Give the drugs a chance

You've been through plenty, that's for sure.  I have gone through only a part of what you have been forced to endure.  I am hardly an expert and you need to have some really good doctors to rely upon.  Your situation is complex and is deserving of the best kidney cancer specialists you can find.  Consider getting second opinions; you main doc shouldn't be bothered by that. 

It sounds to me like chemo is the best bet you have.  Newer drugs are now available which may be of great help to you.  You have to give them a chance to work.  You have a right to be scared, but there are reasons to have hope.  It's true, you need a break.  You may just find it.  According to my surgeon, I should have been dead 2 years ago.  So, by beating the surgeon's prognosis by two years (and running), I know first hand that some good things can come out of the cancer mess that you and I and others on this blog share.  

Also, you need close monitoring.  There are two reasons for that:  First, you need to know whether the cancer is progressing or if it's diminishing.  That will require perhaps quartlery scans.  Second, you have to be monitored as to how your body is handling the drugs.  That might be via weekly or bi-weekly blood work (less frequent once your body is stable as to its relationship with the drugs).  

It's easy to say, but you have to stick with it all .... the drug treatments, the appointments, keeping up a halfway positive mood at home, etc.  All of this with a happy face.  Or at least a bit of a happy face.  Tough to do, but try your best.  Keep yourself physically strong and maintain as healthy of a diet as you can.  It all helps.

Praying for you,

 

Dutch

 

AnnissaP

I am so very sorry to hear

I am so very sorry to hear this. I agree with Dutch1...2nd opinions can make all the difference. They did for me anyhow. I really hope you find comfort and peace during this time. I also hope you get the best care and plan possible!!!!

foxhd

perhaps surgery

may be indicated later on. Now you have to try and stop further progression. Therefore your oncologist needs to determine which drug will be most effective. The goal is to stabilize at this point. It will be an immunological therapy like nivolumab, by infusion, or an antiangiogenic drug like sutent, votrient or cabo. They work by inhibiting blood vessel growth making the tumors unable to grow and hopefully shrink. This is a daily oral medication.

It's more involved than that but I suggest that you ask your doctors to explain your options. Mostly you need to get another opinion because many of us have been living with many tumors for many years. I'm approaching 7 years. And a lot of it has to do with finding the right facility and doctor. I had 4 cancer centers tell me I was probably out of luck. The 5th opinion was promising and has saved my life this far. You have some work to do but I'm sure your personality and training along with a wonderful family will give you all the motivation you need.

Work hard my friend. Believe that you will do this.

DMike

2nd Opinion

I agree with others that you should get a second opinion. There are very knowlegeable people here who can help you.

There is also another site, smartpatients.com with a lot of good information too. You may want to visit the kidney cancer community there and ask if anyone is being treated in Louisville. They may be able to help you find a local renal cell carcinoma expert for a second opinion.

I've been fighting RCC for 6 years myself. I'm still here. I wish you the best.

David

Wehavenotimeatall

I am so so sorry

Cant begin to understand how are you feeling... the fear is just unimaginable..

Cant understand how after you had your first recurrence you did not receive further treatment from Oncology

I hope you now have a good team who can give you options on the new treatments that available

How are you coping now with the treatment

 

Your current tumours are all on the smallish side so there is plenty of hope that you will respond to the right treatment

For now you need to fight with everything you have

Ask Ask and demand you get the best treatments they have

I hope  you strength will support you ...you are a strong guy so I know you will be ready to keep kick some.......

Please keep us posted

 

DaBabysDaddy

Thanks

I saw the kidney specialist today. They mentioned a procedure, where they can stick a needle through my back, to inject something directly into the 4cm lesion that is on the “top” of my remaining kidney. They want to see how I respond to these pills (Sutent) first.

I am going to the VA. They are not opposed to me getting a second opinion, but I cannot receive any treatment, contrary to their treatment plan... or they can discontinue my treatment. Which I do understand why. But, the VA in Durham NC is directly across the street from Duke Medical Center. All of the doctors are from Duke. I do have confidence in the care I am receiving, as well as the doctors. I feel like a child, that his mother said “no cookies”... so I go ask my dad, to get an answer I am looking for. The VA has kind of an “unlimited” government budget. I don’t believe there is a test, or scan, that they have not run. I have no horror stories about it taking forever to get appointments either. It seems all timely, and quick. Although, I do understand the VA does have protocols and a bureaucracy. Believe me... the minute I feel under attended to... I will play out a scene from the movie John Q! lol joke

Another victory of sorts is that my care is 100% free. The military did give me 100% disability, so financially I’m good. I’d hate to have to be dealing with money issues along with this disease.

i am also receiving a bit of one on one counseling to assist me in dealing with it all. I was giveN a 50/50 chance that this will be successful, and live for quite a while. I have already outlasted my father. That’s a twisted sort of victory, but a victory none the less.

Just day 2 of Sutent, but woke up this morning with a swollen face... if you can call what I got last night sleep. I was up all night itching my feet and hands. Unbearable itching! Very fatigued yesterday and today. Does anyone know if these side affects will subside, or do they last for the entire dosage cycle?

thanks again for the words of encouragement!

Dutch1

See your docs at the VA about

See your docs at the VA about your side effects.  I've seen stories on this blog and have experience myself with folks being unable to tolerate the full dose of chemo (Sutent or whatever) with the result that the doseage was brought down.  There is no "right" doseage amount which fits every person.  The VA should be monitoring you as to start out on this stuff.  Maybe others on the blog will disagree, but I think it's SOP to haul the patient in quite regularly in those first days/weeks of drug treatment (whether it's initial chemo or a change in drug).  In my case, my liver doesn't get along with Votrient.  If I had been left to go on my own without any monitoring, some serious damage could have been done.  So, for me, close monitoring of my reaction to the drug was very important.

Second opinions are important if at least to help you think through your choices.  Often, it helps to hear another perspective on the situation.  The second doctor could give you some good questions to take back to the VA guys.  If you don't have insurance which will cover the cost of the second opinion, you have to consider that.

DaBabysDaddy

Side effects getting worse

After about 10 days now... i am starting to feel increasingly more crappy. Is this the way it goes on Sutent? I know the dosages can be adjusted, but I’m not sure that I feel crappy enough to adjust down. I want to maximize dosage, in the hopes that it works better, so I am willing to feel a lot more crappy. Do the effects keep getting worse and worse?

AnnissaP

Hi. Sorry I cannot help with

Hi. Sorry I cannot help with advice, but I hope you feel better soon. Only thing I have read is that people had some relief of side effects after lowering the dosage.

CRashster

two things.

There are two things that we probably all have in common. We all have cancer and we've all been scared. Scared is not fun, but it kinda goes with this territory. Live every day.

Abunai

Never Taken Sutent

Sorry, can't help with the sutent side effects. I had some pretty miserable side effects with votrient. Like you, I toughed them out as long as I could to make sure the cancer was being hit as hard as they could hit it. I did, eventually, have to go with a lower dose, but soon after, they decided it wasn't working for me.

I can empathise with you for the most part: stage 4 with bone mets all over the place. They just, this week, discovered more in my lungs. The tunor on your second kidney has got to be frightening.

I salute you for your service. You made it to retirement. I only managed 4 years in the Army. Being realistic, when the cancer takes me, my wife and three kids will no longer receive my company provided insurance, or my paycheck. I have a small pension from a previous employer that, I believe, will just go away when I pass, since I'm only 51 and will likely pass before I begin collecting. I have a 401k that will, hopefully, provide them with abou 10k per year, and they should get something from social security.

I'm happy for you that you made a career out of service to our country. If, God forbid, you lose your battle, you will be leaving your family with a pension and with medical/dental care.

I'm sorry to be so blunt, and to sound so negative, but I understand the fear and wanted to point out some "silver linings".