Follow-up to Surgery Routines

Texas_wedge said:

Blood thinners

Thanks, Neil.  I've decided to give Milk Thistle a try and can get a number of preparations at the health store I usually shop at. It would be a good time to take it, as you say, and particularly if it helps to get me back onto Votrient!

However, I won't go for nattokinase or lumbrokinase and I'll keep getting my bromelain from pineapple (favoured among strength athletes and body builders for many decades).  I happen to like, and eat, the main food sources I listed on SP as dietary blood thinners (namely, turmeric, garlic, ginger, pineapple and water) so I have little need for supplementation (I reckon). 

I also don't need more K2 intake since one gets enough from a 'well-balanced' diet and I eat many foods which are rich sources.  In fact, I may get too much.  After all, the primary mechanism by which warfarin thins the blood is by interfering with the coagulation function of vitamin K!!

We have always been in accord about how little doctors, in general, know about nutrition.  I'll be careful how I broach such matters to my current onc (who, though quite young, tends to be a little on the 'doctor knows best' side). 

Christine and hubby saw his cardiologist this afternoon who has put him back on warfarin, on sensible grounds but Sue, who worked for years in an anti-coagulation clinic, says that the consultation I really need should involve a haematologist and we agree with that. 

Even though I'll try Milk Thistle, I think the priority is to get off drugs which are known to impair liver function - I'm already off lisinopril and now want to switch to something other than Fragmin.  There's not much point in taking steps to improve liver function while remaining  on drugs that damage the liver!

Boy it sure is hard to access this site these days...

I agree with everything you are doing Tex.  Supplements are just that - addition(s) to one's diet (which should always come first in my book).  I think the MT will assist in speeding up your getting back to acceptable liver numbers.  After that hopefully you can resume your Votrient and put it aside (although, as you know, I don't think it will interfere either).

As you point out, many of the foods and spices you enjoy also act as blood thinners.  However, based on the extensive blood tests that I do every 4 to 6 months in consultation with the Block Center, I will offer my opinion that you are not getting enough of these ingredients to be very effective.  That is the reason I use supplements.  For example, I agree that Pineapple is a great source of Bromelain.  But I personally would not consume enough of it because I strickly limit the amount of fruits (especially high glycemic ones) I consume daily due to their sugar content.  As I half-jokingly pointed out many months ago, in order to get the amount of Resveratrol that I consider useful in my system I would have to drink 44 glasses of red wine daily.  As much as that idea may hold some appeal (and I should add that many of my relatives seemed to achieve that level effortlessly during our family reunion last week) I still prefer to take the capsules. 

Just FYI, here are 2 blood test results showing the effectiveness of using Nattokinase to help thin my blood:

a. Blood test for Fibrinogen Antigen level:

Optimal value: Less than 350mg/dL.

My value on 9/13/12 = 500mg/dL, considered high.

My value on 1/14/13 = 474mg/dL, still considered high.

My value on 6/14/13 = 291mg/dL, now considered good.

"Fibrinogen can cause increased platelet aggregation, hyper-coagulation, and excessive blood thickening. This increases the risk for heart attack and stroke. Fibrinogen is the precursor for Fibrin, which cancer cells may use to coat themselves in order to hide from the immune system. Fibrin also relays a signal to cancer cells to initiate angiogenesis and sets the stage for tumor growth and metastasis." – Block Center for Integrative Cancer Treatment

b. Blood test for Prothrombin Fragment 1+2 MoAb level:

Optimal value: 87-325pmol/L.

My value on 9/13/12 = 848pmol/L, considered high.

My value on 1/14/13 = 524pmol/L, considered high but improved.

My value on 6/14/13 = 427pmol/L, still considered high but still improving.

"Prothrombin 1+2 increases the activation of platelet aggregation, which can lead to internal blood clot formation." – Block Center for Integrative Cancer Treatment

So you can see that even after almost one year I still have a little ways to go to get to what the Block folks consider as optimum blood "slipperyness".

NanoSecond said:

Black Caviar

Wow.  Thanks for that heads up Angec.  It is immediately going on my list of items for future research.  I wonder - does it apply to Salmon eggs too?  Ikura (Salmon Roe) sushi is one of my very favorites. 

 

-N

Neil, i think that Salmon works well too to help build the immune system.. here is a bit of info i picked up.

<<Salmon will help your body fight off infection as it is high in protein and contains omega 3 fatty acids which will multiply the number of white blood cells you have. The majority of fish is very good for your health but salmon specifically will help improve your white blood cell count. In addition, adding eggs to your diet will improve your white blood cells as they contain a mineral called selenium, which increases the number of cells. Also, eggs are full of vitamin E and protein which will help to maintain a healthy immune system. All in all, eggs are considered the best food to boost your immune system.>>

But I know Black Caviar works because i myself have seen it in action. My husbands dad had leukemia about ten years back. They gave him so much chemo (10x the normal dose) that they destroyed his bone marrow.  A naturopath we went to on his behalf told us to get black caviar as it will help restore the wbc's which were 0.7 since his marrow was not making any.  He took a teaspoon a day and boy did we see him start to get stronger and his count came up to 2.7 in a short amount of time.  Unfortunately he died when they gave him more chemo to kill what he had left to prepare him for a marrow transplant. Incidentally and a side point. He was at the same hospital and had the exact same doctors as Robin Roberts had from the morning talk show in NY.  Does anyone know about that story? They overdosed her with chemo also for her breast cancer and destroyed her marrow too, only not as severe.  But the caviar did in fact work.  It kept him alive for two months once we started using it and his numbers were coming up until they decided to do the transplant, if we only knew then what we know now.

Anyway, here is a little info on the Russian black caviar for what it is worth. I know you are much better able to research it on your own.  But i also like Ikuri and eat it whenever i go to Asian Fusion.  http://aromatherapy-articles-blog.blogspot.com/2010/07/finest-black-caviar-from-russia-why-is.html

Immunocal was also recommended, we bought it but he did not get a chance to use it.

Texas_wedge said:

Support and ideas

Ange, thank you for making such efforts on my behalf and for asking intelligent questions about the logic of my position.  I agree that my liver numbers should normalise soon.  On Smart Patients at the moment we have several people who like your Mom and me have had to come off Votrient and they all seem to be able to resume on lower doses.  One of them is our Ron (Manx TT Ron) whose liver numbers were even worse than mine but he's got back on V. again at 600 kg and seem to be thriving.   My prognosis is not based on that but rather on the steadily increasing tumor pain, the cause of which is not entirely clear but which doesn't augur well.

You will maybe see that there's a big debate going on about the side-effects of blood-thinners and i shall be asking my Onc on Friday whether we can find an alternative to Fragmin that won't affect liver enzymes - unfortunately, as you've found, most of the low molecular weight hepains do have this drawback.  [On that point, I posted, on SP yesterday, something very similar to the material you gave the link to (above)].

My pulmonary embolus probably has resolved by now but Angela (whose colleague is the current stand-in I'll be seeing on Friday) advised me that having had one such clot I will need to be on blood thinners for the rest of my life - the reason being (I think) that I still have cancer which will be causing an ongoing problem of increased blood viscosity which we need to guard against for fear of stroke (which I dread) or heart attack.  My Wife and I think that getting back onto Votrient is more important than that risk and if Fragmin is delaying that I should stop the Fragmin and take my chances.  The expectation is that when I reach acceptable liver performance I'd resume V. at 600 mg.

You make an excellent point about the blood test routine and even if I switched to warfarin I'd probably only need to be checked twice a week for a short period.

Thanks also for the endorsement of Milk Thistle which, as you know, Neil swears by and has been taking for a year or so.  I'll bring that up with the Onc on Friday.  When Angela gets back from maternity leave, I don't know - will probably make discreet enquiries via the cancer nurse whom I'll also be seeing on Friday.  Meanwhile, I must thank you again for all your efforts on my behalf, particularly in view of your own health.  How are you doing at present?

 

I always thought a balanced diet was a beer in one hand and a shot of whiskey in the other..

icemantoo said:

My 2 cents

One concern about follow up is not addressed enough. That is high blood pressure. High blood pressure over time adversely effects kidney function as does having only one or less than 2 kidneys. Decreased kidney function over time can cause kidney failure, but is more likely to cause a heart issue. Keep in mind that with Kidney Cancer, not only can you die of the Cancer, but you are at risk for coronary problems as well in part from reduced Kidney function.

The moral of this post is not only must we keep up with our scans, but watch our heart and blood pressure as well .

 

I have posted these thoughts before, I just want to make sure they come across to all on this board. Recent members as well as old timers.

 

Icemantoo

A timely reminder of an important point.

NanoSecond said:

Caviar and Salmon Roe

Hi Angec,

Yes, I am quite familiar with the many benefits of salmon.  It is a wonderful, cold water, fatty fish that is high in omega-3's.  And yes, some selenium is always packaged in with it - and that helps mitigate any tissue accumulation of heavy metals such as mercury.

However, it is the claim that black caviar (or salmon roe) can boost the immune system that I am unfamiliar with.  Unfortunately, the link you posted doesn't offer any proof or even much of an explanation other than that these items (i.e. eggs) contains lots of good nutrients. Well, no argument there.

What I would like to see is some rigorous science-based evidence regarding its true effect on the immune system.  Anecdotes are always helpful in pointing to where research might be fruitful.  But anecdotes cannot be considered as proof.

I will try to investigate this further when I get some time.  As always I will begin with PubMed.  If there is not much found there I will have to conclude that this is may be a "red herring".  Or perhaps it is a red sturgeon? 

Anyway, thanks again for the heads up.  I am looking for ways to boost my WBC.  So far I have found that numerous (properly processed) mushroom extracts and/or various versions of wheat germ (such as Avemar) are quite credible supplements.  So is pure whey protein. But I assume you know all that.

 

-Nano

Salmon is so valuable that I think it's important to flag up a very important matter.  Such is the duplicity of the food industry (where the most contemptible practices abound) that it's difficult not to be deliberately misled.  I've, naively, opted for "Wild Atlantic Salmon", only to find that that description is fraudulent - most of the salmon we see is actually farmed and fish farms are bad news.  If anyone is in any doubt about that, I suggest reading articles like this:

http://www.whfoods.com/genpage.php?tname=george&dbid=96

NanoSecond said:

Wild Salmon

Excellent point, Tex.  It is a smart idea to avoid all farm-raised fish and seafood - if that is possible.  It is getting harder and harder these days.

Agreed, Neil, and as usual it so often comes down to pricing - you pay for what you get and non-farmed fish tends to be much more expensive, like free-range poultry and eggs, grain-fed beef etc.

What I find so egregious is when those of us who are prepared to pay more for the healthier food are deliberately deceived as to what we are buying - I know you'll fully agree with that sentiment.

angec said:

Neil, you are correct, the

Neil, you are correct, the info i posted on Black Caviar did not at all explain it's merits.  I have not done any research on it at all.  I only know of the experience we had with it and that it seemed to work well. The doctor that suggested it i am sure had lots more knowledge about it at the time.  I look forward to anything you find on it if you do research it. In the meantime, Salmon works very well.  The only thing i am hating at the moment is the use of GMO's.  It seems that Salmon has a great chance of being sold here in the US through that avenue and we won't even know it. I didn't get a chance to see the link TW posted as I have not been able to log onto this site all morning. 

I spend so much money on whole, organic, grass fed, non caged items and to possible be sold something that contains GMS's and is not labeled is disturbing.  Word is out that wheat is all GMO and we should also avoid beet sugar.

 

Are you familiar with immunocal?

No Angec, I am not familiar with immunocal.  Do you have some experience with it?

And speaking of GMO's - I assume that you also know that virtually all of the Soy grown in the US is  GMO these days.

Tex - yes, I fully agree.  The labeling situation has become a very serious issue here in the states.  Actually it is a scandal. There seems to be no reliable way to guarantee that the variety of fish that you believe you are purchasing is actually the real thing.

I too have been extremely frustrated trying to check into this website for the past few days.  I hope they will solve this problem soon.

Dawndedoe said:

Follow-up tests

I had a laparoscopic radical nephrectomy for my stage 2, grade 3 clear cell renal cell tumor on May 16th, 2013.  I am back at work and feeling fine. 

My family Dr.  has me monitoring my blood pressure and keeping track of it daily.  My follow up tests are every 3 months.  I have just completed my first round last week and there are concerns about my GFR(42) and creatinine levels so I am doing follow-up again this week.  For every 3 months, I have to have full blood work up, chest x-rays, GFR, Creatinine and ALP testing.  At 6 months I am doing a CT scan and ultrasound.  This is for the next 2 years. 

I would talk to your GP because there is a chance of recurrance in this type of agressive cancer.  I was diagnosed at the end of March as well.  I live in a remote area of the world so I had to travel to Vancouver BC for the surgery but my follow up care is excellent.  I will mention that I am only 42 years old and have been carrying this cancer around for about 8 years without knowledge. 

Dawn McKay

I guess I will say welcome to the club that no one wants to join...  OK so you did the hard part, the surgery.  But just hang in there..  It may be a bit too soon to expect your remaining Kidney to take the full load just yet.  Doing the follow up is important as you already know..   There are many posts on here about all kinds of related issues..  several good ones on a Kidney Diet.

Ron

Dawndedoe said:

That is good to know, my

That is good to know, my family Dr. is concerned and ordered me to take another test.  We are going to meet this week and contact the Urologist in Vancouver that completed my surgery to ask him some questions. I think she is just not clear on what is normal for me anymore.

Thanks for that.  I feel a bit better now. 

Dawn

Dawn,

I did make it to the Yukon on a cruise 25 years ago. We took a van to the border and saw thru thru the fog that we had passed the border into Canada. In Skagway we learned how the pioneers started in Skagway early in the sping and made it to your City of Whitehorse in the fall if they were lucky. Now it is just a 3 hour drive to Skagway.

It has  to be a little tough with no special Cancer treatment nearby nor the availability for follow up Kidney care. I think you realixe that the largest concern is not the Cancer. That will take care of itself with follow up. It is the Kidney Function. While I also had a 41 GFR mine was 27 years older than yours and it has gone back up to 47. With good follow up on the high blood pressure. Hopefully you can get yours up to 60 or higher.

I do love Vancover and Vancover Island. Last summer we made it as far as the San Juan Islands.

Hopefully the beautiful area where you live will make the recovery easier.

Icemantoo

icemantoo said:

YUKON

Dawn,

 

I did make it to the Yukon on a cruise 25 years ago. We took a van to the border and saw thru thru the fog that we had passed the border into Canada. In Skagway we learned how the pioneers started in Skagway early in the sping and made it to your City of Whitehorse in the fall if they were lucky. Now it is just a 3 hour drive to Skagway.

 

It has  to be a little tough with no special Cancer treatment nearby nor the availability for follow up Kidney care. I think you realixe that the largest concern is not the Cancer. That will take care of itself with follow up. It is the Kidney Function. While I also had a 41 GFR mine was 27 years older than yours and it has gone back up to 47. With good follow up on the high blood pressure. Hopefully you can get yours up to 60 or higher.

I do love Vancover and Vancover Island. Last summer we made it as far as the San Juan Islands.

 

Hopefully the beautiful area where you live will make the recovery easier.

 

Icemantoo

There's no end to the talents of our Grand Old Man!  Aside from the general avuncular support, we get good steady advice on nephrology and blood pressure, we get sensible guidance on the time-scales for recovery, we have the tantalising prospect of the romantic agony aunt column, "Dear iceman"  and then there's the travelogue side.  Have you thought of writing a travel book, Garry - I'm sure you'd have endless amounts of fascinating material to go into it?