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Stage 2 to stage 4 in less than 10 months

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

Hello all.  I have been away for a while and have come back to share information I had hoped not to share.  A recent needle biopsy confirmed that my RCC has metasticized to my mediastinal lymph node.  I have a couple of nodes on the lungs - 4 mm and 9 mm - that are "indeterminate", however, are most likely mets.  This is a surprise to me, to my Urologist, and my Oncologist.  My kidney was removed with clean margins and no lymph node involvement in December, 2014.  My brain scan was negative and no sign of mets to the bones.  So, it is currently confined to the chest/lungs.

What now?  I will be consulting with California Pacific Medical Center's HDIL-2 Oncologists to determine if I am a good candidate for treatment.  After that, it will most likely be Votrient, per my Oncologist.  

Please say a prayer for me.  I have come to terms with this diagnosis and know that my life, whatever is left, will revolve around stabilizing the tumors and hoping to contain it.  My husband on the other hand is still working through his grief at the diagnosis and blaming the Urologist and other doctors involved.  

Thank you for helping me with this journey.  Reading your stories gives me hope.

Happy holidays my friends.

 

Debbie

 

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Debbie, I'm so sorry . i'm also stage two and very hopeful to never hear about it againq so I  feel how frustrating it could be if  scan result proves I'm wrong!. Some other stage four will chime in and tell you their success stories, we have some, dhs is stage four but NED for two years if I'm right. Fox spend hard time fighting and came back to us as a winner, we have footstomper and some other stage four member who are receiving treatment. You are in my thoughts and prayers . the new treatment s are coming for example just few days ago fda approved nivolumb for kidney cancer treatment.  Hope is here we just need to stick to it.

Hugs, Forough

 

 

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

I was lucky, in that I had a solitary met.

APny's picture
APny
Posts: 1998
Joined: Mar 2014

I am so sorry, Debbie. I can't even imagine how you must feel. This is a horrible, sneaky disease which is why I take nothing for granted and just hope for the best from scan to scan. My prayers and thought are with you. Since they caught it early I'm sure the Votrient, if going that route, will help. Lung nodules could be cysts or scar tissue so keeping fingers crossed.

Bellweather
Posts: 102
Joined: Jun 2013

Debbie,

I will be praying for you.   I am also stage 4 with bilateral nodes in the lungs.  I have been on Sutent for well over 2 years and I am 5 yrs post nephrectomy and did do a brief stint of HDIL2.  My lung mets are smaller than ever and I continue to work, play and live.  While there are side effects,  they are manageable. 

Keep your head up and keep living your life, there are many members here that continue to have success vs their ailments.   As mentioned,  new meds continue to be approved by the FDA that enhance our lives.   

Wishing you a positive and loving Thanksgiving during this difficult time,

Bellweather

 

mrou50
Posts: 389
Joined: Mar 2013

Debbie sorry that this happened, my thoughts and prayers are with you.  The Votrient can be a pain but it does work.  As for your husband my wife sympathizes with him, but as you know blame doesn't help, it is just a damn dreadful disease, and the best thing he can do (and I am sure he is) is just support and love you and be there through of all of this.

 

Mark

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Debbie my heart is breaking for you and your hubby. But I am glad you thought enough to come back and share your awful news. We're here for you and will walk this journey along side  you if you like us to. Know that hon.

Your hubby is trying to process bad news, in his way. You are busy I bet just figuring out what is next, huh?

If you have been on this board, you'll be surprised at how many are having good results in many kinds of treatment. It won't be a cakewalk, but again, we're going to gather all OUR strength and send it to you!

You are not alone !

Hugs to you and yours,
Jan

jason.2835
Posts: 337
Joined: Nov 2014

Debbie,

Sorry to hear about your metastases.  Sounds like it will be a fun ride.  Just remember those on here who had success with Stage 4 treatment and lean on those who know more about the advanced disease then I do.   

My 2 cents will go to what you said about your husband... Even though I was the one who went through the fun last year, I can totally put myself into his shoes.  I have certainly bashed docs who deserved it on here in the past, but it sounds like in your case they really have been doing all that they can.  Your tumor wasn't "crazy" big so I think they wanted to spare you the more aggressive treatment until they saw a need for it.  I can kind of understand that.  It's just the way it goes with RCC.  Most docs will hope that surgery will be the cure... But we all get scans, right?  Obviously if there was "zero" chance of it returning we wouldn't need to get scanned.  

So while it is easy to blame the doctors, sometimes the case is a tough one in that it's not really anyone's fault.  I would be happier that they found them early and while they are still containable so you can start treatment.  Shrinking mets that are in the millimeters is a heck of a lot easier than shrinking them in the centimeters.  

Good luck and have a great holiday,

- Jay 

Allochka's picture
Allochka
Posts: 952
Joined: Nov 2014

Dear Debbie,

sorry to hear... But you sound like a positive, determined person, and it will definitely help you in your future journey. You have a long life ahead, and not necesseraly it will be plagued by terrible side effects of treatments. Some people manage it very-very well. 

Stage 4 sucks, but it is not the end.

Hugs to you, I wish I could help more than just with words...

angec's picture
angec
Posts: 924
Joined: Mar 2012

Debbie, sorry to hear.  How big was the lung met that they biopsied,? The other two are small and really it doesn't necessarily have to mean that it is cancer.  Vortient works wonders. My 83 year old mom is on 200 mgs.  She had over 7 different areas with cancer at stage four, including multiple in the lungs that were 3 cm. The Votrient did wonders for her and she has been NED for the last two scans. There is one small spot that they say is stable but the doc is not even sure it is cancer.  One thing about Votrient. You don't always have to take the full dose of 800 mgs to have results. My mom has been on 200 since 2012.  She could not tolerate the higher dose.  So, if you can go small on dose it would be better as it will most likely will cause high blood pressure, loose bowels, bad taste in mouth and stomach pains. But not all symptoms are had by all, everyone is an individual. Also they will keep close watch on your liver enzymes.  I would suggest a full body ct/petscan, that should be done every 3-6 months. Take xrays or scans just of the lungs doesn't work.  So, hopefully everyone who reads this will  know to get those when scan time is up.  Praying it goes well.  You can have the cancer handled and managed.  And they are making new drugs quite often. Also, you can try out nivolumab/opdiva, they have now approved it and it works more on the immune system and has less side affects.  All the best to you!

nancybuck's picture
nancybuck
Posts: 117
Joined: Sep 2015

My heart is broken for you and your husband for what you are having to deal with now. You both remain in my thoughts and prayers during your new fight.  I have read so many wonderful success stories on this forum, your success will join them. Love and hugs dear Debbie.

 

nancy

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I know how it feels and it's unpleasant. The anticipation of bad things seems to often be worse than the actual thing. Take care of business, but don't let your fear get the best of you. You're alive and healthy today. Enjoy your life. Nobody knows how long they have left or what the end will be like when it comes.

We've had plenty of members with mets who got relief or stayed stable for a very long time.

Best to you. Please keep us updated.

Hugs,

Todd

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

It was three years ago, December 19, 2012,  I was exactly six months out from my nephrectomy,  My tumor was T1B, but grade 4 with sarcomitoid features.  The scans were a CT of the pelvis, abdomen, and chest.  Prior to the nephrectomy, they had not done a CT of the chest.  

On the CT, they found a 1.5 cm mass in the upper left lobe of my lung.  I was devistated. I was given a 3 year disease free survival of 20%.  Followup testing showed that the neoplasm was cancerious, but because of the way it was presented, they could not be sure if it was primary lung or a metastisis.    The biopsy was inconclusive.  The medical oncologists did not know how to proceed because of the uncertainty.  However, the thoracis surgeron figured, lets take it out and see what it is.  Te question was, though, do we assume lung which means the whole lobe, or a kidney met which means a wedge resection.

We went for the wedge, with the caveat that if the Dr opens me up and decides it probably is lung, we change up the surgery.

It was a Metastisis,  So, I was Grade 4, Stage 4.  Seemed pretty bleak.  But, there were no active tumors in my body.  Expectations were one would pop up.  So far, it has not.  Three years.  I should be dead, but I am not.  And I remain NED.

Now, if I look at the statistics, I still have a better than even chance of the cancer recurring in the next 20 years, but what the f***..., I have had the last three years.  

In that time, I saw my daughter read from the Torah or her Bat Mitzhvah;  I got to buy, drive, and get stranded multiple times in my sports car; I have been to spring training...and I picked up 4 cardiac stents (and a pacemaker),

On the latter, I have family history and cholesterol; I was not surprised.

But the big picture takeaway is we are ALIVE.  Each day is a bonus day...Enjoy it.

Richgels1's picture
Richgels1
Posts: 26
Joined: Oct 2015

Hi Debbie,

Seems that we have a number of things in common. Sorry to hear about your situation. I also have met in a chest lymph node and some watch areas in my lungs after kidney removal and lymph node removel in the kidney area. 6 months ago it was 1cm tumor on my right bronchial tube. After 3 months on Votrient it was stable with no growth. At 6 months I am NED and will be going in for my 9 month scan next week. The side affects are a bit difficult to deal with but I have learned a few things that may help you. I started at the 800mg level and am still at that level. I'm guessing they will start you at that dose level also since reseach shows this to be the most affective level. Probably the first thing you will notice will be the loose bowels. I was getting fairly sudden urges to go and still get those urges sometimes usually about 2 hours after taking my daily dose. My doctors didn't immediately suggest this but I am now also taking 2 immodium pills per day and it helps considerably to reduce the loose stools and sudden urges to go. I take one around 11am and another with my pills at around 3pm daily. If you don't go one day than skip the immodium pill until after you go the next day. You will also likely feel somewhat weak and tired with the medication. I also take tylonol daily which helps reduce the fatigue feeling. Another thing not so pleasent is that your hair will begin to grow white from the roots. You may be able to die it but I haven't tried that. Hey atleast you will still have hair. You will likely also experience some lose of appitite and nausea at times. It seams backwards but putting some food in your stamach when you feel nausea may help. The one hour after you take your pills will likely be the least comfortable. Your diet will likely change some because certain foods just won't taste the same anymore. I seem to eat less meat and cheese. Good luck to you. I know it may feel pretty scary right now but you will learn to manage. Make the best of each day. One last parting thought. You are now eligible for social security disability if you have enough work credits and can look up what your monthly payment would be at the SS.gov site. You would have to stop working before you apply and it takes six months to kick in once you apply. Let me know if there is any other advise I might be able to give since it seems that I am slightly ahead of you on this journey.

Take care, Scott  

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