Just because we have cancer we are not immune from other problems

ron50
ron50 Member Posts: 1,723 Member
in Colorectal Cancer #1
hi everyone , it is unusual for me to post other than an occasional reply. I am in a position that most here would envy. I have made it to nearly 15 years cancer free after aggressive stage 3 c colon cancer into 6 nodes. I had some pretty awful chemotherapy , namely levamisole an immunomodulator most commonly used by vets to treat internal parasites in animals. It was banned in 2000 because of some fatal side effects. It has become notorious in recent times as the substance of choice for drug dealers to cut cocaine. it has caused some dreadful problems amongst drug users. I used it and it may well have killed my cancer. It or something else is now trying to kill me. Since chemo I have gradually developed a raft of auto-immune problems. I have severe sensorimotor neuropathy in both legs and my left hand. It is showing up in my right hand now. My neurologist has stated bluntly that he does not know what caused it and he cannot help me. I have developed strange heart problems. In twenty four hours I recently recorded nearly eleven thousand premature ectopic heart beats. I am suffering myocarditis which is inflammation of the heart muscle which has resulted in troponin leaks(that's the heart attack enzyme.) I saw my nephrologist on Tuesday . For years I have been borderline nephrotic syndrome. Put simply I leak protein thru my kidneys. Protein keeps your blood in your veins. Lose protein and you start to leak fluid into your flesh . Oedeema. Up till now I have been leaking 2-3 grams of protein a day. I have kept the resulting fluid build up in check with diuretics. Taking methotrexate for severe psoriatic arthritis helped both the protein loss and the arthritis. Unfortunately it also caused extreme flares in the neuropathy. I had to stop methotrexate six months ago. I did a 24 hr urine collection last week. It gives an accurate result for how much protein you are leaking, I saw my nephrologist Tuesday. My protein loss has doubled to nearly 5 grams a day , nephrotic syndrome. In short I have entered a new stage on my road to renal failure. It cannot be left as it is . Because I have been dxed as an auto-immune sufferer I cannot have a transplant. If my kidneys fail ,and they will with no intervention , I will be permanently on dialysis till I die. The proposed treatment is cyclosporine , best known as an immuno-suppressant used by transplant patients. Unfortunately too higher dose is nephro -toxic . My kidney specialist wants to start me on it next week, Life after cancer sure is interesting..Ron.
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Comments

  • esk2poo
    esk2poo Member Posts: 25
    #2
    Ron,
    sorry to see you going

    Ron,

    sorry to see you going through this. I am mostly alurker here but I have been following your story. You got some nasty stuff. Even these days, they dont know what all the side effects are going to be. I myself have really had a hard time with the neuropothy and have had so many emg's, I can probably do them myself. No crap, I have severe neuropothy but those damn tests still hurt. Hope you can find something to give you relief.

    good luck,

    allen

  • Nana b
    Nana b Member Posts: 3,030 Member
    #3
    esk2poo said:

    Ron,
    sorry to see you going

    Ron,

    sorry to see you going through this. I am mostly alurker here but I have been following your story. You got some nasty stuff. Even these days, they dont know what all the side effects are going to be. I myself have really had a hard time with the neuropothy and have had so many emg's, I can probably do them myself. No crap, I have severe neuropothy but those damn tests still hurt. Hope you can find something to give you relief.

    good luck,

    allen

    Congrats and Major bummer.

    Congrats and Major bummer.  Not even a relative can give you a ,kidney?  

     

    My uncle told my aunt he didn't want her Kidney because she pees too much.  Lol  

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #4
    Sorry Ron. My father has had
    Sorry Ron. My father has had some serious issues as a stage 4 lymphoma survivor. Not easy.

    My mom has been on dialysis since about 1987....she was in her early 40s when it started. Her kidneys failed as a resultof a medication. Long story, but im glad shes been able to have dialysis. Not an ideal lifestyle but shes still had a good life...traveled a little, etc. If you have any questions, just ask.
  • fatbob2010
    fatbob2010 Member Posts: 467 Member
    #5
    Ouch

    Ron,

    Thanks for sharing this with us.  It sounds like you have great strength and determination, congratualtions for this.  

    Wondorous how medicine that cures one problem can cause such havoc elsewhwere.  What a miserable set of responsibilities for the prescribing physcian to balance.

    Thanks for sharing Ron, keep us updated.

    Peace,

    Art

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #6
    Rough ride

    Its not been a fun journey for you, Ron.

    I've read your post before, and know that sometimes it feels like its all been too much and I can quite see why.

    And maybe people are so excited about the fact that you have 'survived' cancer, that they don't see that the suffering you've experienced since is twice as hard. I wonder if sometimes you are made to feel guilty about grumbling and complaining, when they think 'Hey, you beat cancer, be grateful'. That can really hurt, when your suffering is not understood. 

    Sorry, I ramble. I guess somewhat of my own feelings are here. 

    I wish you strenght and peace. And I'll always be here, as are the others on the forum, to listen and understand.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #7
    Yikes!

    You have had a long, rough journey. It really sucks that you are having all these issues. I know my brother has lost some function of his heart from chemo he had in 2000 for NHL.All these chemo meds they use eventually have some side effects down the road, but it seems like you're getting the brunt of it all. I am sorry to hear this. I really hope things get better for you. 

    Lin

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #8
    Wow Ron. I know that you have

    Wow Ron. I know that you have mentioned some of your problems in the past but I was not aware of how extensive it is. I admire your will to survive.

  • wolfen
    wolfen Member Posts: 1,324 Member
    #9
    janderson1964 said:

    Wow Ron. I know that you have

    Wow Ron. I know that you have mentioned some of your problems in the past but I was not aware of how extensive it is. I admire your will to survive.

    Oh Ron,

    You are truly "between a rock & a hard place". I don't know if it would only add to your problems, but my Ron had severe diabetic neuropathy for many years. At the suggestion of a member here, he started taking Alpha Lipoic Acid & it worked wonders for him. He also had failing kidneys & heart problems & it didn't appear to make them any worse, so you might want to check it out.

    If only a giant hug & love from all of us would make things better for you................................

    Luv,

    Wolfen 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #10
    Sorry

    I've followed your story since being on this board and you have definitely had your share of problems.  My dad only has 25% of his kidney function left due to a cholesterol pill they pulled off the market because of the side effects.  Sometimes you just wish they wouldn't be in such a rush to get a drug to the market without fully testing it.  Wishing you well.

    Kim

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #11
    Of course...

    ...we schould be grateful for the available treatment options available to us today, because they may add years to our lives or some even get cured. However these options although high-tech today are often very demaging: radiation, chemo, cutting out body parts with all the side effects. I'm sure some day in the future we will look back at these treatments as primitive just like we look at treatments from 20-30 years ago or further back even though they were high-tech at that time.

    Ron, the fact that you made it this long you are the testament of how things used to be and how much they have changed. I sitting here with a 12" cut on my stomach and a colostomy bag attached to me forever I will feel fortunate to look at these in 20 years and say that this was the best I could get back then. But thanks god 20 years from now people will pop little mint flavored, pink heart shaped pills with no side effects for the worst cancers. I wanna see that day and proudly show my old school scars to the cancer "sufferers" in the future.

    Thank you for sharing and listening,

    Laz

  • maglets
    maglets Member Posts: 2,576 Member
    #12
    lp1964 said:

    Of course...

    ...we schould be grateful for the available treatment options available to us today, because they may add years to our lives or some even get cured. However these options although high-tech today are often very demaging: radiation, chemo, cutting out body parts with all the side effects. I'm sure some day in the future we will look back at these treatments as primitive just like we look at treatments from 20-30 years ago or further back even though they were high-tech at that time.

    Ron, the fact that you made it this long you are the testament of how things used to be and how much they have changed. I sitting here with a 12" cut on my stomach and a colostomy bag attached to me forever I will feel fortunate to look at these in 20 years and say that this was the best I could get back then. But thanks god 20 years from now people will pop little mint flavored, pink heart shaped pills with no side effects for the worst cancers. I wanna see that day and proudly show my old school scars to the cancer "sufferers" in the future.

    Thank you for sharing and listening,

    Laz

    Ron

    oh Ron your woes are many....you have suffered greatly in order to survive. I salute you dear friend....your courage and humour in the face of it all.

    sending love.....mags

  • foxy
    foxy Member Posts: 188 Member
    #13
    Thinking of you as always.

    Levamisole, has I am sure, caused all my ongoing problems.

    Always remembering you Ron, love Virginia.

  • ron50
    ron50 Member Posts: 1,723 Member
    #14
    foxy said:

    Thinking of you as always.

    Levamisole, has I am sure, caused all my ongoing problems.

    Always remembering you Ron, love Virginia.

    Thank you all for your support

         I saw my nephrologist again. He has decided to start me on cyclosporine on the 6th of Jan . He wanted to be back at work when I go on the drug . If any thing goes wrong action needs to be taken quickly. He put me on a new blood pressure drug (diltiazem) At my first visit last week my bp was around 210/160 . The new bp med increses the action of cyclosporin and reduces my heart rate. When I went back this week bp had dropped to 160/98 so he has doubled the dose of the bp med. I have so many meds on my kitchen table I can't see it. One of the down sides to cyclosporin is that it causes neuropathy. Not quite sure how you can kill dead nerves!...........One milestone has passed . I have been on this board for over twelve years and on the the 22nd of january I end year 15 of survival and start year 16. Thank you again for all your support , you are wonderful people. Wishing you all a happy and healthy Christmas.  Ron..      PS special hugs to my wild colonial girls,Mags in Canada and Virginia (Foxy) in New Zealand I have really appreciated your love and support over the years .Ron.

  • maglets
    maglets Member Posts: 2,576 Member
    #15
    ron50 said:

    Thank you all for your support

         I saw my nephrologist again. He has decided to start me on cyclosporine on the 6th of Jan . He wanted to be back at work when I go on the drug . If any thing goes wrong action needs to be taken quickly. He put me on a new blood pressure drug (diltiazem) At my first visit last week my bp was around 210/160 . The new bp med increses the action of cyclosporin and reduces my heart rate. When I went back this week bp had dropped to 160/98 so he has doubled the dose of the bp med. I have so many meds on my kitchen table I can't see it. One of the down sides to cyclosporin is that it causes neuropathy. Not quite sure how you can kill dead nerves!...........One milestone has passed . I have been on this board for over twelve years and on the the 22nd of january I end year 15 of survival and start year 16. Thank you again for all your support , you are wonderful people. Wishing you all a happy and healthy Christmas.  Ron..      PS special hugs to my wild colonial girls,Mags in Canada and Virginia (Foxy) in New Zealand I have really appreciated your love and support over the years .Ron.

    my dearest boyo

    oh darling boy....you are special to me as my wild colonial boy. hahah I love!! the neuropathy kills dead cells jab.what's left to kill????....you never ever lose your sense of humour dear friend.  okay so that sounds good your new routine.....liking the drop in bp/////maybe this will be a really good thing and sounds like the nephrologist is being careful ...

    wowsers 16 years....that is amazing....are you in fact the very oldest survivor here....don't know but I salute your longevity.......

    today is in fact my birthday dearest Ronnie and I am tucked up in beddie with a cognac to salute you. We are having very big snow falls.....20 inches daily  and still coming.....town shut down...and bitterly cold...

    carry on.......hug mags

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #16
    maglets said:

    my dearest boyo

    oh darling boy....you are special to me as my wild colonial boy. hahah I love!! the neuropathy kills dead cells jab.what's left to kill????....you never ever lose your sense of humour dear friend.  okay so that sounds good your new routine.....liking the drop in bp/////maybe this will be a really good thing and sounds like the nephrologist is being careful ...

    wowsers 16 years....that is amazing....are you in fact the very oldest survivor here....don't know but I salute your longevity.......

    today is in fact my birthday dearest Ronnie and I am tucked up in beddie with a cognac to salute you. We are having very big snow falls.....20 inches daily  and still coming.....town shut down...and bitterly cold...

    carry on.......hug mags

    Happy birthday Mags!!

    Stay warm and enjoy the rest of your day!

    Hugs,

    Lin

  • ron50
    ron50 Member Posts: 1,723 Member
    #17
    maglets said:

    my dearest boyo

    oh darling boy....you are special to me as my wild colonial boy. hahah I love!! the neuropathy kills dead cells jab.what's left to kill????....you never ever lose your sense of humour dear friend.  okay so that sounds good your new routine.....liking the drop in bp/////maybe this will be a really good thing and sounds like the nephrologist is being careful ...

    wowsers 16 years....that is amazing....are you in fact the very oldest survivor here....don't know but I salute your longevity.......

    today is in fact my birthday dearest Ronnie and I am tucked up in beddie with a cognac to salute you. We are having very big snow falls.....20 inches daily  and still coming.....town shut down...and bitterly cold...

    carry on.......hug mags

    Happy birthday Mags and Trubrit

        Virginia (Foxy) is out to twenty years from stage 4 this christmas and from memory Neons is well ahead of me. I guess that it is nice that there are some of us still kicking. Ron.

  • foxy
    foxy Member Posts: 188 Member
    #18
    ron50 said:

    Happy birthday Mags and Trubrit

        Virginia (Foxy) is out to twenty years from stage 4 this christmas and from memory Neons is well ahead of me. I guess that it is nice that there are some of us still kicking. Ron.

    20 year anniversary.

    Yes Ron, 20 years since my right hemicolectomy, and wedge resection, of a liver met. on 20 th December, 1993. And then 50 weekly infusions of 5 fulourasol, plus the dreaded levamosole, 3 days every two weeks.

    I have many chemo related problems, but I am still here!

  • BusterBrown
    BusterBrown Member Posts: 221 Member
    #19
    Ron,
    Thanks for sharing your

    Ron,

    Thanks for sharing your story.  Hang in there and I hope your new treatment helps.

    Buster

  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #20
    Keep up the good fight Ron!

    Keep up the good fight Ron!   

     

    You have had a long fight, I hope I do as well.  There are complications with life and the battle of cancer. It is how we over come them and contiinue that matters.   I like your positive attitude.  i know it is not easy.

     

    Best Always,  mike

  • Phil64
    Phil64 Member Posts: 838 Member
    #21
    ron50 said:

    Thank you all for your support

         I saw my nephrologist again. He has decided to start me on cyclosporine on the 6th of Jan . He wanted to be back at work when I go on the drug . If any thing goes wrong action needs to be taken quickly. He put me on a new blood pressure drug (diltiazem) At my first visit last week my bp was around 210/160 . The new bp med increses the action of cyclosporin and reduces my heart rate. When I went back this week bp had dropped to 160/98 so he has doubled the dose of the bp med. I have so many meds on my kitchen table I can't see it. One of the down sides to cyclosporin is that it causes neuropathy. Not quite sure how you can kill dead nerves!...........One milestone has passed . I have been on this board for over twelve years and on the the 22nd of january I end year 15 of survival and start year 16. Thank you again for all your support , you are wonderful people. Wishing you all a happy and healthy Christmas.  Ron..      PS special hugs to my wild colonial girls,Mags in Canada and Virginia (Foxy) in New Zealand I have really appreciated your love and support over the years .Ron.

    True warrior

    Ron, thanks for sharing your battles with us. And for exemplifying what a true warrior is. We endure and trust. And hope to have as many years as we can on this good planet Earth. And we Love and embrace eachother, our families, and friends. Knowing that they are the most important part of our existence.

    Merry Christmas!

    Phil

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