Follow-up to Surgery Routines

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?

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

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 said:

Follow-up monitoring

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).

My money is on you!

Michael

garym said:

Mine too!!!

Cancer stands no chance against cantankerous old coots like us!

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

MDCinSC said:

Perhaps, but . . .

I'm sticking to my guns!

Much appreciated.

MDCinSC said:

Always!

Always!

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 said:

Gambles

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!

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!

angec said:

TW, I don't want to hear any

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!

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?

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?

 

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