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Follow-up to Surgery Routines

ddantzler's picture
ddantzler
Posts: 21
Joined: Apr 2013

Hello everyone! I had my laparoscopic radical nephrectomy (left) to remove my stage 1, grade 2 clear cell renal cell carcinoma on April 16. I have been recovering very well. At this point I feel nearly 100%. The only pain that I experience is very mild when trying to jog or run. I do have extreme numbness that extends in a large circle from my hip to my rib cage on my left side (extending approximately in an 8 inch radius from my incision point).

I returned to work on May 13. I have been doing well there also, but I have noticed lately that I have some times where I have this onset of being "spaced out" or dazed. If anyone has feedback on that, I'd be grateful.

Also, I was released from the hospital on April 18. I saw the doctor on May 6, who did a urinalysis. He stated that while my creatinine level was slightly elevated and GFR not perfect, that my right kidney would pick up the slack within 6 months or so. He declared me NED, stated that statistically I have a 97.5% chance of cancer free survival five years post-surgery (per http://cancernomograms.com), and scheduled my next appointment for a CT scan at 1 year (May 2014). He stated that I should only visit the general practitioner if I have any other health concerns.

The whole whirlwind of being diagnosed with cancer on March 29, kidney removed on April 16, and told that I am NED and don't need to see anyone for a year on May 6 has me feeling a little weird.

Shouldn't I have my blood pressure checked or kidney function checked more regularly?

MeMeJoy
Posts: 68
Joined: Apr 2013

Glad you are doing so well!

"Shouldn't I have my blood pressure checked or kidney function checked more regularly?" - My situation is a bit different - but I go back in a year also and have been wondering this as well!!

Do you know if there are there any warning signs or symptoms that people with one kidney should be on the lookout for?

nyisles's picture
nyisles
Posts: 26
Joined: Mar 2013

Numbness from hip to rib cage is normal.  Remember they did surgery which had to cut through many muscles and nerves which will take time to recover.  Nerves only regenerate 1mm per month.  The "spaced out" or "dazed" feeling is normal.  I had that for a while too.  That is from the anesthesia used from surgery.  Feels like you get into a random "fog" for a few minutes.  Or if you are sitting in the car it feels like the world around you is closing in and you feel like you are about to enter the Twilight Zone.  Been there. Don't worry, it will get less and less and eventually go away for good. As for waiting a whole year....that would make me uncomfortable.  You should see a regular doc to get your blood and blood pressure checked especially because of your high creatinine level and GFR. You don't always have to go to the same doc. You can also see an Oncologist just in case who can do scans for you to make sure you stay NED.

cancerat46's picture
cancerat46
Posts: 35
Joined: Feb 2013

Yeah it's kind of like getting hit by a semi truck that has "Cancer" written on the side of it. You wake up in the middle of this new, strange road and you're laying flat on your back with someone standing over you saying "you'll be just fine...don't worry." Yeah, right! I also had a laproscopic radical nephrectomy (right) about 1 year and 5 months ago. It really does get easier as time passes! I definitely had (still sometimes have) the spaced out thing. I think it's called shock! The first six months of my journey on this cancer road were spent in shocked, dazed confusion! I will say that my doc did follow up with me a bit more than what you're describing. I saw him for blood work at 60 days post op and again at 6 months post op for blood work and chest x-ray and then at 1 year for CT. If you aren't comfortable waiting (and I don't think I would be) let him or your GP know you would like at least blood work (to check kidney function) and blood pressure check. You are your best advocate so ask for what YOU need. Taking that control helps things feel less "weird". Hope this helps. Take care! Kris

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

OK, so life is good..!  And having only 1 Kidney is not terrible, but you may wish to look at your diet.  You can do a WEB search on a Kidney safe diet and see where you can make some changes.   I have greatly reduced my salt intake for instance.  And I eat more healthy in general now.. all good.  As for follow up, well getting all the blood work done more than once a year is a good idea anyway, maybe every 4 months.  On scans, I suspect different folks have different opinions, but if you seek out a GOOD Oncologist I suspect they would want every 6 months for the first couple of years, just to be safe.

That said, you are one of the lucky ones, small tumor with a very good outlook..!

Be Well All..

Ron

FiatDriver
Posts: 11
Joined: Jul 2013

It is so comforting to read about people that have gone through the same thing as me.  I had my tumor removed on June 5 and I am almost back to 100%.  I lost a lot of blood during surgery so my worst side effects are related to being anemic.

I have noted before that I don't feel like I have had it long enough to really "own" it.  I'm not complaining.   All one has to do is go into one of the other forums on this site to realize how much worse it could be.  I am more worried about my 6 month follow up than I ever was about the cancer. 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

This is a subject on which one needs to be careful in making generalisations.  Not only do we all have different bodies but we have very varying medical histories of treatment.   So, it's all a matter of what's appropriate for each individual.  At the present time, I'm having CT scans with contrast every twelve weeks and full bloods and urine tests weekly.  However, I was stage 4 and grade 4 even before I started getting mets and the smart money says I'm unlikely to be still around by Christmas.

However, at stage 1 and grade 2, with a very small tumor, caught early, and at half my age, you don't need much monitoring at all.  If it gives you more peace of mind, you could invest in a domestic blood pressure monitor (they're inexpensive and easy to use and usually give more reliable results than you would get in a hospital or a doctor's office setting).  That way you can keep as close an eye as you want to on your BP. 

Blood tests are quick and easy and I'm guessing don't cost too much in the States? That would cover your kidney function.   However, your creatinine is only slightly elevated, so you have nothing to be worries about there and you're better off than most members of this forum.  Your eGFR will improve and it's probably fine as it is.  Mine is currently over 60 with only one kidney (you still have most of two?) but my golfing partner has an eGFR of 32 with his two kidneys. 

Nor do you have anything to worry about regarding blood pressure, assuming it was OK before dx and surgery.  You're pretty nearly fully functional already and you don't have any real symptoms of problems, so the medical care that's being suggested is reasonable (and, as I've said, you could monitor your own BP and get more frequent blood tests if you want to).

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

My money is on you!

Michael

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Cancer stands no chance against cantankerous old coots like us!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks guys, but at the moment I'm afraid it really wouldn't be a good bet.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I'm sticking to my guns!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Much appreciated.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Always!

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

Texas_wedge, I find you inspiring.  As someone earlier in the horrid smRCC, (albiet clear cell rather than pap), I look at you for both hope and wisdom.  You research things thorougly, and present an informed viewpoint.  Good luck, and I hope you are just going for suckers bets!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

dhs, thanks for your kind words.  In my current predicament I'm illustrating a lot of points from my personal experiences and asking for help in a way I haven't in the past.  However, I do feel that I've paid my dues in offering information and support to others here in the past, so it's nice to have that belief confirmed as you have just done. 

I'm chromo, rather than pap, but we sarcy types will  have to stick together, won't we?

I suppose if I wanted to make a bid for suckers' bets, Gary and Michael are among the very last I'd look to!

angec's picture
angec
Posts: 621
Joined: Mar 2012

TW, I don't want to hear any talk of you not being around for December!  I really believe that this is most probably a temporary setback with the liver.  The numbers can go down quickly if you were able to stop the blood thinners for a short period of time.  I am just wondering if the cause to be on the thinners is the same reason you were on bp meds, taking the Votrient.  You were able to stop the bp meds so what about the blood thinner?  Is there a lung scan of some sort where you can see if the clot has resolved (probably has) and if so then is it possible for you to stop the thinners? Once the numbers get back to normal you can resume low doses of Votrient at first then move up to perhaps 400 mgs for a bit.  

My other question is this, if you are getting checked weekly with the blood now anyway, wouldn't that be the same schedule if you changed to other blood thinners? It would be temporary until you find the right dosage.  Were you given the choice to change over or did the doc himself say  it is easier to inject?  I would take the former if it were to mean the newer drug would be less toxic to the liver.

Incidentally I found this on low molecular warafin.  Does this help at all?

http://livertox.nlm.nih.gov/LowMolecularWeightHeparins.htm

 

I am betting that you will be here in Decemember and I don't offer bets too easily.  Mom was off of the Votrient for a whole month and the scan still showed shrinkage at that time.  Please don't think the worse, keep researching until you find a way.  If it is possible to lay off the blood thinners for a short time and take the milk thistle perhaps 800-1000 mgs. daily. My brother had very high numbers for his liver from taking pain meds for years and years.  He was put on milk thistle i think 1000 mgs daily and the first week showed a dramatic improvement.  Your bloods are heading the right way. Keep the faith TW, really, we want you around for a long,  long time!  If one door closes we all stick together and find an open window. I will keep researching as well and asking some doctors around here what  can be done.

Incidentally, the Torisel, does that affect the liver? Dr. M told us that it affects the sugar levels but never mentioned the liver. Is that an option?

When does your regular Onc get back?

I hope i haven't invaded your privacy or asked too many questions. I feel like i am fighting for you as well and trying to just run ideas by you.  But I am sure you are on top of it all, simply because you are TW!

Love you and don't think negative, keep the positive flowing!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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?

 

NanoSecond's picture
NanoSecond
Posts: 524
Joined: Oct 2012

Hey Tex,

I am still trying to catch up on all the previous weeks messages and emails while I was away on vacation.  One point that was not heavily emphasized in our discussion on SmartP is that Milk Thistle was suggested to specifically help with your liver function.  How much help it will provide remains unknown.  I do understand your reluctance to use it for fear of interference with new targeted therapies but what is the objection while you are off of Votrient or any other TKI?

I also wanted to remind you that there are several difference supplements that you can choose from to gently work to thin your blood.  Of course I doubt your doctors will know much about them (let alone endorse your taking them), but here goes anyway:

1. Nattokinase:  This is an enzyme isolated from Natto, a fermented soy product popular in Japan. It is a fibrinolytic enzyme that decreases platelet aggregation. It works by inactivating plasminogen activator inhibitor.  It is also an excellent source of vitamin K2.

2. Bromelein:  A less effective fibrinolytic enzyme that destroys fibrin in the blood.

3. Lumbrokinase: This is a family of fibrinolytic enzymes derived from certain worms.  Many feel this one is the most powerful of the three choices I have listed.

Naturally, it goes without saying that all of these supplements will interfere with "mainstream" drugs like Warfarin (Coumadin) and should only be used in consultation with your doctor(s).

-N

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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!

NanoSecond's picture
NanoSecond
Posts: 524
Joined: Oct 2012

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".

 

angec's picture
angec
Posts: 621
Joined: Mar 2012

TW, thank you for letting me share my thoughts with you.  I have more LOL.

By the way TW, do you know the size of the clot? I learned that clots develop all the time in our bodies and usually subside on their own.  Depending on the size of the clot this may be the case in everyone's body.  So maybe asking about that can help you make your decisions as well (if not size is good to know.)  Perhaps if the clot was tiny and would have passed anyway, then maybe Neils suggestions (very good ones) would work to help rid the body of any potential clots in the future.

 I understand the situation with the tumor.  If you would oblige me a private chat when you are up to it. :)

In spite of so much worry going on at your end, you and your lovely wife seem to be thinking very clearly when you say that getting back on Votrient is the main thing right now, I so agree. And if that means forgoing the blood thinners and replacing with other natural options then that is the chance to take at the moment.   They say vitamin E, magneisum, vitamin C all have functions that help thin the blood naturally and keep clots at bay. I guess you will hash it all out on Friday with the Onc.  Would it be advisable to start with a low dose first asap then adjust gradually to the higher dose?

I suppose you are on the absolute minimal dose of blood thinner? I suspect that avenue was discussed too.  But if not just another thought. My brother had such high liver numbers that when he was in the hospital with a broken hip for six weeks recently, they had him on daily doses of heparin due to lack of movement. After i asked them about the thinners making his liver higher (they didn't know?) they gave him the injections every third day instead of daily. They then said that most times the exact doasge amount is usually set at a higher pace, which is why they have to monitor the blood.  As it turned out, even every third day was too much, he started having blood in his stool and they stopped it. 

Here is a yucky thought! Did you know some naturopaths reccommend a small amount of black caviar daily to boost the immune system and to regulate the wbcs?  ....Neil??

Thanks for asking about my health, all i can say is eh!  LOL  I have come to the conclusion that i will never feel good so this way if i get a few hours where i don't feel too bad then it is a welcomed surprise.

Take care and go out and do something you enjoy.. you know just what your body can do..

 

 

 

NanoSecond's picture
NanoSecond
Posts: 524
Joined: Oct 2012

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

angec's picture
angec
Posts: 621
Joined: Mar 2012

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.

 

 

NanoSecond's picture
NanoSecond
Posts: 524
Joined: Oct 2012

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

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
NanoSecond
Posts: 524
Joined: Oct 2012

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.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
angec
Posts: 621
Joined: Mar 2012

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?

NanoSecond's picture
NanoSecond
Posts: 524
Joined: Oct 2012

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.

 

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

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

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

Ok so I know enough to be dangerous.. I am on Metorprolol as I have an arithmia. My cardio Dr doubled my dose when I started the Votrient. I also have Norvasc as a backup for when my b.p. Goes crazy.. Not sure if this is of any help

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

I make a bad gambler, as I am a computational physicist by traiNing, and I hate loising $20 more than the joy I get winning $20, so I do no bet on things where I do not control the outcome.  But, i am pulling for you.  

I really do not like this disease.  Before this, I could always shut down my hypochondria with a little logic.  Not anymore.  Once the met happened (singular) with the sarcomitoid diagnosis, nothing can be reasoned away.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

are often romantics and don't care about odds!  We are convinced we can control outcomes by sheer will power and desire.  

My willingness to bet on TW is derived from his sheer tenacity and intellect. Put bluntly, I'd never bet AGAINST Wedge! THAT is the sucker's bet!

Michael

icemantoo's picture
icemantoo
Posts: 1527
Joined: Jan 2010

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

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

A timely reminder of an important point.

Dawndedoe
Posts: 6
Joined: Aug 2013

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

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

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
Posts: 6
Joined: Aug 2013

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

icemantoo's picture
icemantoo
Posts: 1527
Joined: Jan 2010

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

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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?

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

You and I came to this about the same time. My T1b Grade 3 was removed by laparascopic radical nephrectomy two days before yours.  Glad to hear your recovery is going pretty well.

You've come to a good place. There is a lot of support, advice, caring people, and an occasional laugh or two (as long as we don't stretch decorum too far for some)! Wink

My follow up is essentially the same as yours except I only get scans once a year with x-rays and bloodwork every 90 days. (Radiation issues from a life of intolerant behavior LOL)

Others have welcomed you! I add my greetings and good wishes. 

I hope to visit that beautiful part of the world someday!  If I can arrange it soon, I'll contact you!  Maybe you can recommend a guide for us! 

Now, you have to learn that pesky secret handshake!

Welcome, don't be a stranger!

Michael

Dawndedoe
Posts: 6
Joined: Aug 2013

Thank you everyone for the warm welcome.  

This is definitely a tough journey.  Wondering all the time what my outcome is going to be.  I also have 4 kids, some young some not so that makes this journey tough. 

I love living up in the Great White North.  We have had an exceptionally warm summer.  That is going to make preparing for our wintertime deep freeze hard this year.  We have also had a higher number of bears in the city this year.  We actually had a grizzly chasing 2 13 year old girls on their bikes up a major road.  Drivers had to intervene as the grizzly was gaining on them.  We have a map now that shows us where the bears are so that we are careful while outside. Lots of berries this year, hence the increase in bears. If you wish to travel here, do so in the summer and don't expect really warm temperatures like the rest of Canada or the US. Summer is better, we have almost 24 hours daylight and it is great for fishing, rafting, camping, hunting and hiking if you are into that kind of stuff.  

Resources here aren't bad but our city only has a population of 27,000 people and we are the capitol of the Yukon. We do have family Doctor's and such but we do not have the specialists that are required for any special conditions.  We do have a nurse here that can administer chemotherapy for cancer patients but any additional surgeries, radiation and other cancer therapies, we have to go the BC Cancer agency in Vancouver.  I definitely makes life more difficult but the Government pays for all travel related costs for medical issues.  

I will practice the secret handshake....lol

Dawn

icemantoo's picture
icemantoo
Posts: 1527
Joined: Jan 2010

Dawn, 

 

It must be great to live in a country where the Government cares about the welfare of its citizens, especially  those not close to specialized medical care. Hopefully when and after Obama Care is implimented it will expand to include all the perks you have in Canada.

 

Back in the 1930's the Repiblicans ranted against Social Surgery saying it would lead to Socialisn. They did the same in the 1960's with regard to Medicare. The most startling observation is that those who oppose progress in these areas as well as Obamacare have the most to lose in the long run.

 

Icemantoo

jknorth's picture
jknorth
Posts: 44
Joined: May 2013

As a dual citizen Ive seen both sides. Its in the news today, a guy in Winnepeg was in the emergency room waiting for over 36 hrs to be treated. He died silently in the waiting room of some bladder infection, was totally treatable. They just let him wait forever to die, its so busy from the immigration here its unreal. Some go in for anything minor and abuse the system, just for something to do during the day. Its not free either, your taxes here are like 40% of your income. Also a family doc visit is like 5 minutes max, its like a cattle drive. I would rather have my Kaiser medical anyday of the week, no waits, MRI in a few weeks and cost is reasonable per month. Better than the hidden tax in canada they call free healthcare. But....they do have some very good surgeons here, if you ever get that far. Just my opinion.

Dawndedoe
Posts: 6
Joined: Aug 2013

I guess it all depends on where you live.  I live in a remote area and to encourage citizens to live here, they provide us with benefits not normally associated with mainstream Canada.  We do pay high taxes but they are for more than our medical system and even with our high taxes, I still live a very comfortable life style with no complaints other than my illness...I have never felt that my medical concerns were neglected.  I had my ultrasound for gallstones and before I could get to work, the drs. We're trying to call me to come back for a ct scan.  I had the ct scan the next day and was given the results the next.  The wait for surgery was a bit longer.  I was contacted by the surgeon himself and scheduled for surgery 6 weeks later.  I then was called in and had surgery one week Earlier than originally expected.  Everything was done so that my husband and I had to fly down once.  My followup care has been great.  No complaints there either.  I think that with everything in life, there are ups and downs.  I have been one off the fortunate ones.  Good luck to everyone.

Dawn

icemantoo's picture
icemantoo
Posts: 1527
Joined: Jan 2010

As pointed out by JK North nothing is perfect. I however believe that Obama Care will be a lot better as we retain our prior insurance. For me that is Medicare some thing I have paid into for 45 years now. Those States that do not get on the Obama Care bandwagon will find their sick and uninsured broke and not properly cared for when they become sick and uninsured and I am not speaking of the poorest who already qualify for Medicare.

I think the Republicans biggest fear is that Obama Care will suceed and their lies about it will be proven wrong and they can no longer hold the budget hostage by their threts to defund the Government.

 

Icemantoo

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

There's a clear danger of our over-stepping the mark here, with the neutral remit of CSN and this theme probably won't be allowed to run. 

So, in anticipation of intervention here by moderators, I want to make a record of my support for iceman's analysis and views, motivated as they are by his (to me, anyway) admirable compassion for the less fortunate members of our society.   His concern rises above politics to the humanitarian values that are at the basis of policy and I commend him for it. 

As a UK citizen I have no involvement, but one can admire care for the welfare of the underprivileged wherever one sees it.   Good for you iceman!

GSRon's picture
GSRon
Posts: 1214
Joined: Jan 2013

Just remember that you get what you pay for. Please read the thread on the treatment guidelines forth coming. I am sure you are ok with an xray instead of scans for your follow up..

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I could not agree more!  As in Canada, there is nothing to say you can't maintain the insurance you have for the "get what you pay for" service if you have the resources.  But at least the millions without care can be seen, and receive some kind of treatment.

In some areas, we ARE "our brother's keepers."

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