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Periodic Update (And Associated Apology) from Vin (vdm13)

vdm13
Posts: 35
Joined: Jul 2012

Hello, friends. First, I'm sorry that I don't get here more often. I always worry that you all worry when you don't hear from one of us for a while. Be assured that if you don't hear from me, I am living my life to the fullest, readily forgetting that I have cancer, and doing generally well. I remind everyone on the board to feel free to contact me directly at my email, which i linked to my account. I've also asked my wife to let you all know if I am wrong and don't live all the years God has planned for me. Should keep me covered and feeling less guilty.

Anyway, I wanted to give you update. If you recall, my initial CT indicated Grade 4 Stage 4 mRCC / clear cell / sarcomatoid features with metastesis as follows: innumable nodules in the lungs, 4cm mass (ish?) in my right (remaning) kidney, a lesion in my right adrenal gland, and a 2cm mass at my T3 verterbra. 6 weeks following my radical neph + 16 lymph nodes and a slice of my spleen I started on Sutent 50mg 28 on / 14 off-day cycle. That was July, 2012. So if I do my math I'm on my 12 cycle about 17 months down the road. My CT Scan from ~8 months ago showed remarkable progress: No local recurrences, Lungs classified as "Normal", mass in right kidney did not appear, right adrenal down in size to smaller than 1x2cm, and the spinal lesion having shrunk to this "flat thing" about 1.7 x .7 cm.

My following 2 scans were both "stable". Doc will put me on 6 month schedule if the next one on 12/23 is stable as well.

He has discussed for the past 3 months I've seen him (3 times) about "breakthroughs" and "changes to how they are looking at this disease" and has told me that while he is a scientist and needs years of data, that he will allow me to "expect" to be in a durable, complete remission before too long. He would say cure, but there is not enough evidence and data yet. He is talking about PD-1, its variants, and the work MSKCC is doing on combinations of existing therapies that are having amazing results. Not changing my plan now, as I am in what they have finally classified as "in remission" on Sutent. Not a CR - yet - but remission nonetheless.

I have raised my hope to expectation, per doctor's orders!

Otherwise, things are good. Working full time, sometimes too many hours, trying to get Chistmas shopping done in the next 2 weeks, and looking forward to the last part of a year that was, on balance, a hell of a lot better than the one before it, even with its own share of tragedy.

Live every day, don't get consumed by this thing, use G. White's Guided Imagery program, and thrive, thrive, thrive!!!

All the best,

Vin

Mikeyswife
Posts: 31
Joined: Mar 2013

Hi Vin,

So glad to hear from you and that you are still doing great.  Your pathology is about the closest to my husband's as anyone on here.  He is still on Sutent started in April.  His first scan showed some shrinkage and no new areas.  He started having major blood pressure problems nearing the end of his fifth cycle.  Although we have been told those that have Sutent induced high blood pressure usually have results for a longer period.  He is presently on four different BP medicines and is now on the two weeks on one week off but still at 50 mg.  Second set of scans weren't as good but not bad.  The abdomen scans were very good.  No change in lymphnodes. no new nodules, bone met appears stable, and first scan showed improvement and healing of the bone met.  The lungs did show some small growth on several nodules but no new nodules.   Dr. Rini said that when the mets are very small sometimes it is hard to get really good measurements so he was not overly concerned at this point and classified him as stable and kept him on Sutent.  Did you ever have any blood pressure issues?  And how were your first few scans after starting Sutent?  Did you get improvement after stable scans or did yours progressively improve each time?

Wishing you many great years of life in remission:)

Karen

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Great post Vin. And I love your doctor.

Sounds very much like John's doctor who has confidence in the new trials in the pipeline even though John continues to do well in his current trial, Nivolumab/Votrient.

We just can't have too many options. We gotta beat this!

 

 

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