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1 year anniversary - newby

Babsokl's picture
Babsokl
Posts: 8
Joined: Oct 2013

Well it's been one year since my surgery tomorrow and I'm just now finding this site! I wish I would have found it before and during this past year. I have had two great CT scans and just had a colonoscopy. The results have all come back good! I still feel some discomfort inside the incision site so I'm anxious for that to go away. I had a partial and had a full nephrectomy when I was 1. So basically I feel so very blessed to have my remaining partial functioning well. I hope I'm done with this kidney cancer for good! Because it had been 49 years between cancers, and them being different cancers, I walked daily in thankfulness and humility that my body is cancer free. I still have a long way to go to get my diet and exercise where they should be, but I'm working on it. 

angec's picture
angec
Posts: 575
Joined: Mar 2012

Hi BABS!  Glad that things seem to be rolling along nicely for you!  Keep drinking plenty of water, not too much salt or protein and  enjoy plenty of sunshine and exercise.  That should help get you started!  Keep well!

Bonngo's picture
Bonngo
Posts: 10
Joined: May 2012

Congratulations and many healthy years to come!

icemantoo's picture
icemantoo
Posts: 1353
Joined: Jan 2010

Babsokl,

 

That is close to a record beween cancers. Speaking of a Colonoscopy I have one of those in 37 hours )my 5th or 6th) and I am so looking forward to it. My mother is a stage 1 Colon Cancer Survivor and her surgery was in the early 70's. She will be 92 next month. At age 70 I am an 11 year survivor of RCC. Another 15 or 20 years will be fine. No desire to live into the 90's and past 100 as the quality of life to me is just as important as the years.

 

Remember a good attitude is part of the recovery.

 

Hopefully following your Nephrologist you will be able to keep that partial Kidney  in good shape for the rest of your life.

 

Welcome to our club which no one in their right mind would voluntarily want to be part of.

 

Icemantoo

jknorth's picture
jknorth
Posts: 41
Joined: May 2013

Hi I'm just wondering....I have to go for my first follow up scan in a month and a half and also get those occasional pain jolts from the same surgery area and others nearby. So it makes one worry a little about the scan coming up. Also I never got any recommendation about any special diet to follow, just eating same stuff as before, but realize I better cut back on the junk anyway. What diet were you told to follow and is it just a non proven precaution or scientific fact.

twinthings's picture
twinthings
Posts: 284
Joined: Jun 2013

Always good to hear happy results!!  I hope I will be celebrating 1 year clean, come June.

jk, when you say scan, are you talking ct, MRI, pet??  I will be having my first post-op scan on November 27...and by scan, I mean x-ray, which, I am learning, is not sufficient.  

If I've altered my diet at all, it's been for the negative.  I have THE worst sweet tooth since having my kidney out!  It's crazy, but true!  Never had much of a hankering for chocolate before surgery, now I can't get enough of it.  Not good!!

Babsokl's picture
Babsokl
Posts: 8
Joined: Oct 2013

I have CT scans done every 6 mths the first year and then after that..every year for 5 years

jknorth's picture
jknorth
Posts: 41
Joined: May 2013

I'm not really sure what kind the first follow up exam will be....but I think its a Cat scan than a week later see the surgeon for test results. I'm going to ask him for an RCC Oncologist referal also and hope he doesn't take it personally, Its probably not good to have too many scans, just thinking about them not checking other areas like for bone scans, read thats a likely target for spreading. Paranoia maybe? My diet has been same as ever but want to add more seafood and maybe less nuclear hot sauce, and red wine instead of beer on those social occasions.

NanoSecond's picture
NanoSecond
Posts: 472
Joined: Oct 2012

JK - most of the dietary and nutritional information given out is not optimum.  I have spent the last year engaged in extensive research trying to answer a question: what is the best diet for any RCC (or other) cancer sufferer to follow?  I have also engaged in a "clinical trial of n=1" - implimenting exactly what I have discovered and concluded.

I have written up a (free) document that explains the science and rationale behind what I dub a "proper" diet for cancer sufferers.  It is about 65-pages long.  If you would like a copy, just email me at:

n.feldman@videopost.com

and I will respond with it attached.  It is a .pdf file.

Bonngo's picture
Bonngo
Posts: 10
Joined: May 2012

The sad truth is that we have to take some things into our own hands Such as diet. I was never given any special diet to follow post surgery last year. 

Babsokl's picture
Babsokl
Posts: 8
Joined: Oct 2013

Thanks for your inquiry. Actually, I was told basically lots of water, little protein, eat my fruits, veggies, and grains and exercise. I want to get together with a nutritionist soon! I think some of that pain may be scar tissue and body still healing. When I think about them cutting me open, going through a rib, and turning me on my side in an awkward position for hours...I can only imagine my poor body is just recovering. I try not to eat a lot of junk. i think a visit with a nutritionist might be helpful! I hope your scan goes well. That first one is a little nerve wrecking..prayers your way!

jknorth's picture
jknorth
Posts: 41
Joined: May 2013

This is what I don't get, my surgeon said nobody knows what caused my Kidney tumor, however its likely been narrowed down to several potential triggers. He said its just bad luck. No one in my family history has had it and some smoke, some always load up on the salt and wine, some worked in areas of smoke and dust and oil. I was into sports more than most but always hated my veggies and realize now you have to mix it up and cut back on the salty junk snacks.

I'm sorry, not trying to defy anything or act obtuse or doubt anything.....just don't get it, seems anything can be a carcinogenic trigger but don't know what activates it. I would find it hard to turn down my pint of milk, steak every couple of weeks, a burger, a beef burrito, a fish taco, they are what lifes about, until proven otherwise.

Nano, thank you very much for the pdf offer, would be very interested in checking it out as a healthy guideline and something to think about while I finish my oven baked no oil fries.

 

NanoSecond's picture
NanoSecond
Posts: 472
Joined: Oct 2012

Hi JK.  There are several issues at play here.  It is impossible to say what "caused" your (or my) kidney cancer.  However, there are some lifestyle changes (think diet and exercise here) that we all can do to reduce the risk of developing cancer and/or to slow its spread.  That is what I try to concentrate on today.  A major by-product is that I now am, ironically, "healthier" today than I was decades ago (except, of course, for having mRCC).  Being (and eating) healthier is the major reason I believe I have yet to suffer any severe side effects while taking the maximum dosage (50mg) of Sutent for over 14 months now.

But don't take my word for it.  Everything I have chosed to do is based on the work of doctors, scientists, and cutting-edge researchers.  Here is an excellent 30-minute video presentation ("Major Trends in Modern Cancer Research 2012") by one of them - Dr. Craig B. Thompson, the CEO/President of Memorial Sloan-Kettering Cancer Center.  It is a lecture he gives every year to high school students. If you don't have 30 minutest to spare, just jump to about 25 minutes in and you will hear him clearly state what I have concluded and continue to strongly advocate: cutting back on the consumption of carbohydrates.  This includes all sugars - and also grains and cereals (i.e. breads, pastas, breakfast cereals, starchy veggies, etc.):

http://www.youtube.com/watch?v=PV3UnNvN3NI&feature=youtu.be

Cutting back on carbs is one-half of the problem.  The other half is that we absolutely must put saturated fats back into our diets. Yes, you heard that right.  Saturated fats and cholesterol have been demonised for far too long.  It's time to stop this lunacy. This is a recent (last week) Australian Broadcasting Company (ABC) documentary, "Heart of the Matter, Part 1":

http://www.youtube.com/watch?v=rDVf-00w5gk

 

todd121
Posts: 436
Joined: Dec 2012

Neil,

Your post raises an interesting question for me. The drug studies tabulate percentages of those taking the drug reporting a certain side effect against a placebo control group. I wonder why they don't show a percentage of those who reported no side effects? It would seem like a nice number to know. Or is the number so small, that it would be useless (everybody reports something during the trial period, even if unrelated to the drug)? Cause and effect in these studies is very difficult to come at.

This may have been discussed here before. If I've suffered any bothersome side effects from everolimus, it might be a slow brain. But that might just be my age, or something else. My memory hasn't been as good recently, I think, and I feel like I'm thinking slow. I've heard other people with cancer who have undergone chemo calling it "chemo brain". Not sure if it's the same thing I'm experiencing. Comparing our current experience to our past experience is also difficult. The issue of memory comes into play. Do I really remember how I felt last year? Very difficult to judge.

I have been experience fatigue. But I also have sleep apnea. Could be that acting up. And that could be causing my slow brain and recent memory problems. I just hope if it is the Everolimus, that it clears up after I stop the drug.

Todd

NanoSecond's picture
NanoSecond
Posts: 472
Joined: Oct 2012

Hi Todd.  Your query is indeed thought provoking. I have often wished that there might be some entity that would undertake a study of exactly why some patients experience adverse side effects while others have virtually none at all.  However, the sad reality is that very few - and least of all the drug manufacturers - seem the least bit interested in this.  Especially if the answer might prove that it is heavily dependant on lifestyle choices (i.e. diet or exercise).

For example, it is well known that Metformin, the most common drug used in the treatment of Type II Diabetes, seems to delay the progression of many different types of cancer - especially including RCC.  However, if you look at the mechanism of how this drug works you will discover that you might also achieve many of the same effects (but without any of the drug's side effects) just by following a low carb diet.  Now do you believe that the drug's manufacturer is going to foot the bill to do additional clinical trials that might end up proving that a diet might be as effective as their profit center?

Fatigue is one of the most common "significant" side effects of taking Sutent (and most other TKI's).  Yet I can categorically state that I have not experienced any fatigue while on this drug - and at maximum dosage.  It is not because I am "special".  It is only because I have been paying attention to the key pathways of cellular metabolism that are being disrupted by this drug.  No one was more pleasantly suprised than I was when I proved (to myself and later my onc) that this technique actually works.

I just wish more people could become aware of what I now know is possible.  But when I tried to discuss my own experiences (and the scientific rationale behind what I was doing) with certain RCC "experts" they were immediatly dismissive. They had no interest in exploring how a proper diet (plus certain supplements) might assist in helping the drugs that we take work better and/or with reduced side effects.  It is very frustrating.

 

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