Update

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mp327
mp327 Member Posts: 4,440 Member
edited March 2016 in Anal Cancer #1

I saw my colorectal doctor last Thursday for my 6-month routine follow-up and all looked good.  Of course, she asked me when my last colonoscopy was done and I told her 2-3 years ago.  And before she could say a word, I spoke up and said I was not ready for another one for awhile.  I proceeded to tell her about my recently diagnosed kidney disease and told her I just could not handle any more such procedures right now.  She looked perturbed, but said nothing.  I will go back to her again in 6 months.

 

Today, I had my initial evaluation with the osteoporosis specialist.  He did a physical exam, testing some of my joints, along with all the usual stuff.  We discussed my discontinuation of Fosamax due to hair loss, which raised his brow.  He is suggesting that I either get Prolia injections, which would be done twice per year, or use Forteo, which is an injection that I would give myself daily.  I am thinking nooooooooooooooo on the Forteo!

 

I took copies of a lot of my most recent blood work, scans, etc. with me and he reviewed a lot of it.  Before going any further, we will wait for today's blood work to come back.  He ordered a bunch, including blood work to test for Celiac's disease.  Since my last DEXA scan was two years ago, he wants me to have a DEXA scan as well, so that will be done, hopefully, in a couple of weeks.  I am leaving town tomorrow to go visit my mother, so scheduling the scan will have to wait until I return. 

 

This doctor was okay--seemed knowledgeable.  However, I must say his personality was, to borrow a line from The Andy Griffith Show, "as dry as dust."  I always try to inject a little humor at my appointments, but he wasn't buying it.  Perhaps he thinks I'm just some nutty person who has just about everything under the sun going on inside of them, including a hampster running on a wheel.  LOL!

 

Anyway, that's a wrap-up of my last two appointments.  Now we wait.

Martha

 

 

 

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Comments

  • eihtak
    eihtak Member Posts: 1,473 Member
    #2
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    Martha.....

     

     

     

     

    I do not blame you for putting off any procedures that do not seem urgent at this time, yet, doctors in general are not happy when patients call the shots! 

    I have been on Fosamax for several years, sorry to hear of your resulting side effects as I have had little to none. If you did consider the injections of Foreto, where would they be?  For a few weeks I had to give myself a daily injection of Lovenox for a blood clot. It was given in my belly and really very simple for me to do, but had to alternate spots as I was continually bruised.

    I too often wonder what my doctors think when I add humor to an otherwise mostly serious conversation.....I'd love to read what they put in their notes!

    Thanks for the summary, it sounds like overall you are doing well.  We will always have health concerns, but need to do our best to continue moving forward in spite of all!

    Travel safe, and I hope all goes well with your mom.

    katheryn

     

     

  • nonichol
    nonichol Member Posts: 170
    #3
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    Update

    Keep us in the loop. Enjoy your visit with your Mom!

  • sephie
    sephie Member Posts: 650 Member
    #4
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    forteo

    i have been out of internet for 3 weeks due to flooding..... mda told me not to get Forteo since i had radiaiton that it would cause bone cancer....hugs....sephie

  • mp327
    mp327 Member Posts: 4,440 Member
    #5
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    sephie said:

    forteo

    i have been out of internet for 3 weeks due to flooding..... mda told me not to get Forteo since i had radiaiton that it would cause bone cancer....hugs....sephie

    sephie

    Thank you so much for sharing that with me!  I have an extensive pamphlet about the Prolia from the doctor, but not Forteo.  Since Forteo is a daily self-injection, I would NOT go that route anyway!  I appreciate the information so much!

    Martha

  • tallorder5793
    tallorder5793 Member Posts: 67
    #6
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    Wishing you all the best

    Sending good vibes your way!

     

  • jcruz
    jcruz Member Posts: 379 Member
    #7
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    your update

    Thanks for sharing your update with us.

    Good for you for telling your doc you were not going to have the colonoscopy now.  By now I shouldn't be surprised that we all get slightly different follow ups.  I just had a colonoscopy because I'm on a five year plan for that as I have a brother who had colon cancer.  Another one will be scheduled in five years.  But it is not a part of the anal cancer follow up.

    And, as an aside, I would not wish the colonoscopy prep on anyone but I knew this time, with my damaged sphincter, it would be more difficult than before.  That is an understatement!  It's good I planned ahead and got diapers to wear.  It was bad.

    Janet

     

     

  • qv62
    qv62 Member Posts: 434 Member
    #8
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    jcruz said:

    your update

    Thanks for sharing your update with us.

    Good for you for telling your doc you were not going to have the colonoscopy now.  By now I shouldn't be surprised that we all get slightly different follow ups.  I just had a colonoscopy because I'm on a five year plan for that as I have a brother who had colon cancer.  Another one will be scheduled in five years.  But it is not a part of the anal cancer follow up.

    And, as an aside, I would not wish the colonoscopy prep on anyone but I knew this time, with my damaged sphincter, it would be more difficult than before.  That is an understatement!  It's good I planned ahead and got diapers to wear.  It was bad.

    Janet

     

     

    jcruz

    good idea on the diapers, I will stock up next time. I didn't think of that, I had my last colonoscopy in October and I spent nearly the whole night in the bathroom. hence no sleep

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #9
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    Prolia and colonoscopy.

    Hello, Ms Martha:

    I was put on Prolia after a Dexa scan, when I was diagnosed with osteopenia & ostheoparosis. The RN gives it in my arm, but is so sloooooow about injecting it that I almost passed out with the first dose. I have such a horror of needles that I don't think I could ever give myself injections.

    It is mandatory to take at least 1000mg of calcium daily when on Prolia, along with vitamin D. My endocrinologist said that the body cannot absorb 1000mg of calcium at once, though - break it into two 500mg doses. Calcium citrate is the easiest form for the body to absorb, but I can't find it in a chewable, so I may switch to another form of calcium. (I have a wicked gag reflex and nearly every day I gag on the pills and flirt mightily with aspiration. It's ugly!) Ask the MD how much vit D to take - mine wanted me to take a large dose because my level was low.

    I was very lucky colonoscopy-wise. After getting beyond my radiation-fried anal canal, there was nothing wrong anywhere and nothing to remove or biopsy. The doctor said that I really didn't need the scoping at all, but unfortunately one doesn't know that until the scoping is over. My next one is due in 10 years. (Prep-wise, it was a nightmere! As soon as I drank the stuff, my nose began running copiously for several hours; I spent the night in the bathroom; and with the nausea the stuff induced, I could only take 1/2 the second dose. Thank goodness that was enough.)

  • mp327
    mp327 Member Posts: 4,440 Member
    #10
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    Ouch_Ouch_Ouch said:

    Prolia and colonoscopy.

    Hello, Ms Martha:

    I was put on Prolia after a Dexa scan, when I was diagnosed with osteopenia & ostheoparosis. The RN gives it in my arm, but is so sloooooow about injecting it that I almost passed out with the first dose. I have such a horror of needles that I don't think I could ever give myself injections.

    It is mandatory to take at least 1000mg of calcium daily when on Prolia, along with vitamin D. My endocrinologist said that the body cannot absorb 1000mg of calcium at once, though - break it into two 500mg doses. Calcium citrate is the easiest form for the body to absorb, but I can't find it in a chewable, so I may switch to another form of calcium. (I have a wicked gag reflex and nearly every day I gag on the pills and flirt mightily with aspiration. It's ugly!) Ask the MD how much vit D to take - mine wanted me to take a large dose because my level was low.

    I was very lucky colonoscopy-wise. After getting beyond my radiation-fried anal canal, there was nothing wrong anywhere and nothing to remove or biopsy. The doctor said that I really didn't need the scoping at all, but unfortunately one doesn't know that until the scoping is over. My next one is due in 10 years. (Prep-wise, it was a nightmere! As soon as I drank the stuff, my nose began running copiously for several hours; I spent the night in the bathroom; and with the nausea the stuff induced, I could only take 1/2 the second dose. Thank goodness that was enough.)

    Ouch

    Hi!  It's good to see you back here and I thank you for your comments regarding the Prolia.  I am really leary of taking any of the bisphosphinate drugs, since my hair began falling out while on the Fosamax.  I think they all have similar side effects.  That injection does not sound like any fun at all and I already know I can use anything that is self-injectable--can't do it!  As for taking calcium along with the Prolia, right now my osteoporosis doctor has me NOT taking calcium, which I find somewhat confusing, except for the fact that my calcium/creatinine ratio was quite high.  I don't know how to interpret that, but it may be related to my kidney disease.  I go for more blood work at his office tomorrow morning then return to see him to discuss results in mid-May.  I am anxious to see what he has to say.  The good news is my DEXA scan results show osteopenia, while the one prior to that showed osteoporosis.  Perhaps that is insignificant, but I am grabbing for any improvement I can get, no matter how small.

    I'm glad you got the all clear on your colonoscopy!  How I wish my colorectal doctor would give me a 10-year break on those.  She brought it up again in March at the time of my last visit and I said no thanks, not at this time, as I am dealing with lots of other things right now.  She let it go--yay!  Anyway, I 'm glad you got through it and that the news was all good. 

    Thanks for your as always very helpful input!

    Martha

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #11
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    mp327 said:

    Ouch

    Hi!  It's good to see you back here and I thank you for your comments regarding the Prolia.  I am really leary of taking any of the bisphosphinate drugs, since my hair began falling out while on the Fosamax.  I think they all have similar side effects.  That injection does not sound like any fun at all and I already know I can use anything that is self-injectable--can't do it!  As for taking calcium along with the Prolia, right now my osteoporosis doctor has me NOT taking calcium, which I find somewhat confusing, except for the fact that my calcium/creatinine ratio was quite high.  I don't know how to interpret that, but it may be related to my kidney disease.  I go for more blood work at his office tomorrow morning then return to see him to discuss results in mid-May.  I am anxious to see what he has to say.  The good news is my DEXA scan results show osteopenia, while the one prior to that showed osteoporosis.  Perhaps that is insignificant, but I am grabbing for any improvement I can get, no matter how small.

    I'm glad you got the all clear on your colonoscopy!  How I wish my colorectal doctor would give me a 10-year break on those.  She brought it up again in March at the time of my last visit and I said no thanks, not at this time, as I am dealing with lots of other things right now.  She let it go--yay!  Anyway, I 'm glad you got through it and that the news was all good. 

    Thanks for your as always very helpful input!

    Martha

    Movie time.

    Here's an animation that shows how Prolia works and why calcium is a must: https://www.prolia.com/about/how-prolia-works/

    I don't have renal complications myself (so far, anyway). I'm sure that there must be some road bumps erected by that.

    "Perhaps [the endocrinologist] thinks I'm just some nutty person who has just about everything under the sun going on inside of them, including a hampster running on a wheel.  LOL!"   Must tickle!

  • mp327
    mp327 Member Posts: 4,440 Member
    #12
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    Ouch_Ouch_Ouch said:

    Movie time.

    Here's an animation that shows how Prolia works and why calcium is a must: https://www.prolia.com/about/how-prolia-works/

    I don't have renal complications myself (so far, anyway). I'm sure that there must be some road bumps erected by that.

    "Perhaps [the endocrinologist] thinks I'm just some nutty person who has just about everything under the sun going on inside of them, including a hampster running on a wheel.  LOL!"   Must tickle!

    Ouch

    Thanks, I'll check that out tomorrow.  I was referred to an endocrinologist a few years ago who wanted me to do the Reclast IV's, but I declined.  Too many scary side effects and prohibitive cost since insurance would not cover it.  It may be the same story with the Prolia.  I'm just leary of these drugs in general.  I do believe that the bone issues and kidney issues are somehow connected.  I guess I'll find out what the doctor has to say in May.

  • mp327
    mp327 Member Posts: 4,440 Member
    #13
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    Another Update

    Hi all.  Rather than starting a new thread, I am just updating you here.  I saw the osteoporosis specialist on May 12th. as a follow-up to my previous blood work.  Everything came back normal, with the exception of my kidney function tests (ugh!).  I do not have parathyroid issues, celiacs or rheumatoid arthritis, among other things for which I was tested.  Therefore, he had me do a 24-hour urine collection, primarily to see how much calcium was being excreted by my kidneys.  That test also came back with good results.  So, he is holding off on prescribing any biophosphinate drugs (Prolia) at this time and will see me in August for a follow-up.

    I saw the nephrologist on June 14th. and had some blood work and urinalysis an hour before my appt.  All of those results were within normal limits, including my creatinine, which was .86 (normal .50-1.50), and my GFR, which was 73 (normal >59).  The GFR is a test that essentially tells us at what percentage of normal my kidneys are functioning.  Dr. E told me that my kidneys are now functioning at about 75%, which is quite an improvement and very good news!

    I am quite tired of drinking water, but I realize that it has contributed to these improved readings, so I will keep at it!  I am also not taking a couple of my previous medications, which could have possibly affected by kidney function negatively.  I am trying (thought not easy!) to watch my salt intake, but am not on any diet restrictions.  However, I still must watch what I eat, not only because of the kidney disease, but also because of my history of intestinal blockages and malabsorption issues.  Eating is a challenge, but I seem to be holding my own.

    I hope everyone is doing as well as possible and I wish you a good weekend.

    Martha

  • mxperry220
    mxperry220 Member Posts: 493 Member
    #14
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    Thanks for the Update

    Thanks for the update Martha.  It sounds like thinks are looking up for you.  I am so glad your results came back within normal range.  I just started going to Crunch gym to work out with weights and treadmill this week.  I am going three times a week.  So far I can see some improvement in my flexibility.  I hope I can "stick" with it as I hate a gym.

    Mike

  • mp327
    mp327 Member Posts: 4,440 Member
    #15
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    mxperry220 said:

    Thanks for the Update

    Thanks for the update Martha.  It sounds like thinks are looking up for you.  I am so glad your results came back within normal range.  I just started going to Crunch gym to work out with weights and treadmill this week.  I am going three times a week.  So far I can see some improvement in my flexibility.  I hope I can "stick" with it as I hate a gym.

    Mike

    Hi Mike!

    Thanks for your reply.  I am quite relieved that my tests came back within normal range.  Kidney function can fluctuate a lot, so it will be something I'll be checked for on a regular basis probably for the rest of my life.

    That's great that you are going to the gym!  I find that exercise benefits me in so many ways.  I actually enjoy it most of the time.  Weird, huh?  LOL!  Good luck with your efforts to feel better!

    Martha

  • Pilikia55
    Pilikia55 Member Posts: 17 Member
    #16
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    Good news Martha, thank you

    Good news Martha, thank you for the update. 

  • TraceyUSA
    TraceyUSA Member Posts: 316
    #17
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    Glad for your good news, Martha!

    And it's good to see you back.  

    I go for a DEXA scan next month and will be interested to see what it says since the last one I had was shortly after treatment.  Hoping it stays the same or improves a little, I'm still in the osteopenia stage.

    -Tracey

  • mp327
    mp327 Member Posts: 4,440 Member
    #18
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    TraceyUSA said:

    Glad for your good news, Martha!

    And it's good to see you back.  

    I go for a DEXA scan next month and will be interested to see what it says since the last one I had was shortly after treatment.  Hoping it stays the same or improves a little, I'm still in the osteopenia stage.

    -Tracey

    Tracey

    I hope your DEXA scan no worsening of your bone health.  My last scan actually showed some improvement, but not really enough to get excited about.  Let us know what your results show.

  • donnarush
    donnarush Member Posts: 20
    #19
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    prolia

    I have been on prolia and will be doing a second injection next month. I don't like this, but my bone density scan showed terrible results even though I have taken vitamin d and am not a typical candidate for osteoporosis...I don't know what else to do either..Every thing comes with some form of side effect and if you don't go along with these doctors, they get upset with you...UGH!!! I am now experiencing rectal burning and lower abdominal discomfort yet again...I am 3 yrs post treatments..I am nervous,as we all have been...Has anyone else experienced these post treatment symptoms and how long can they last???? HELP!!!

     

  • pializ
    pializ Member Posts: 508 Member
    #20
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    donnarush said:

    prolia

    I have been on prolia and will be doing a second injection next month. I don't like this, but my bone density scan showed terrible results even though I have taken vitamin d and am not a typical candidate for osteoporosis...I don't know what else to do either..Every thing comes with some form of side effect and if you don't go along with these doctors, they get upset with you...UGH!!! I am now experiencing rectal burning and lower abdominal discomfort yet again...I am 3 yrs post treatments..I am nervous,as we all have been...Has anyone else experienced these post treatment symptoms and how long can they last???? HELP!!!

     

    Martha

    Thanks for sharing your news! Within normal range is just the best! 

    Liz

  • mp327
    mp327 Member Posts: 4,440 Member
    #21
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    donnarush said:

    prolia

    I have been on prolia and will be doing a second injection next month. I don't like this, but my bone density scan showed terrible results even though I have taken vitamin d and am not a typical candidate for osteoporosis...I don't know what else to do either..Every thing comes with some form of side effect and if you don't go along with these doctors, they get upset with you...UGH!!! I am now experiencing rectal burning and lower abdominal discomfort yet again...I am 3 yrs post treatments..I am nervous,as we all have been...Has anyone else experienced these post treatment symptoms and how long can they last???? HELP!!!

     

    donnarush

    Side effects are the main reason I am hesitant to do the Prolia injections.  What may fix one problem has the potential to cause others.  I'm sorry that you are having some symptoms.  I occasionally have burning and itching.  I'm not sure what your lower abdominal discomfort might indicate.  Have you contacted your colorecal doctor?  It might be a good idea to run this information past him/her to get some feedback.  I hope it's nothing of significance.

    Martha

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