Follow-up to Surgery Routines

ddantzler
ddantzler Member Posts: 21

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?

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Comments

  • MeMeJoy
    MeMeJoy Member Posts: 70
    I wondered the same thing!

    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
    nyisles Member Posts: 30
    Sounds like you are doing well

    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
    cancerat46 Member Posts: 52
    Hi sorry you're here, but glad to meet ya

    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
    GSRon Member Posts: 1,303 Member

    Hi sorry you're here, but glad to meet ya

    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

    Changes

    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
    FiatDriver Member Posts: 11
    so comforting

    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
    Texas_wedge Member Posts: 2,798

    so comforting

    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. 

    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).

  • MDCinSC
    MDCinSC Member Posts: 574

    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).

    I'm a gambling man Wedge!

    My money is on you!

    Michael

  • garym
    garym Member Posts: 1,647
    MDCinSC said:

    I'm a gambling man Wedge!

    My money is on you!

    Michael

    Mine too!!!

    Cancer stands no chance against cantankerous old coots like us!

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    Mine too!!!

    Cancer stands no chance against cantankerous old coots like us!

    Odds

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

  • MDCinSC
    MDCinSC Member Posts: 574

    Odds

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

    Perhaps, but . . .

    I'm sticking to my guns!

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    MDCinSC said:

    Perhaps, but . . .

    I'm sticking to my guns!

    Support

    Much appreciated.

  • MDCinSC
    MDCinSC Member Posts: 574

    Support

    Much appreciated.

    Always!

    Always!

  • dhs1963
    dhs1963 Member Posts: 513
    MDCinSC said:

    Always!

    Always!

    I hope you are wrong

    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
    Texas_wedge Member Posts: 2,798
    dhs1963 said:

    I hope you are wrong

    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!

    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!

  • angec
    angec Member Posts: 924 Member

    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

    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!

  • dhs1963
    dhs1963 Member Posts: 513

    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!

    Physicists understand probability

    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.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    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!

    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?

     

  • MDCinSC
    MDCinSC Member Posts: 574
    dhs1963 said:

    Physicists understand probability

    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.

    Theatre Profesors on the other hand. . .

    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

  • NanoSecond
    NanoSecond Member Posts: 653

    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?

     

    Blood thinners

    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

  • angec
    angec Member Posts: 924 Member

    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?

     

    TW, thank you for letting me

    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..