7 Years

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

Hello Everyone!

Today is my 7-year post-treatment anniversary!  Despite all the ups and downs of the past 7+ years, I am so glad to still be here.  I want to say a big "Thank You" to everyone who has supported me on this site through the years.  It means a great deal to me to know that people care and understand what it's like to have gone through this treatment.  Your support and friendship have helped me get through some rough patches along the way and I want you to know that I appreciate each and every one of you so very much!

Just a little update on me.  I had some routine bloodwork in early August through my internist that showed some abnormal findings on my kidney function tests.  She said it could be due to dehydration, but she wanted to retest in a month, so I went in yesterday for the blood draw and now await the results.  I mentioned this issue to my med onc in late August when I saw him for my 6-month visit and he ran the same tests on me, which showed even worse results than the previous tests!  Yikes!  For the last month I have been drinking water like a fiend, trying to hydrate and get my kidneys back in a happy mood.  We'll see what the new tests reveal.

I also mentioned to my oncologist that I had had another partial small bowel obstruction on July 17th., which put me out of commission for a full 48 hours.  Upon hearing that, he referred me to a gastroenterologist for evaluation.  More on that later.  I also told him that my hair has been steadily falling out, so he also included a TSH in the blood work, which came back within normal limits.  He thinks the hair loss is hormonal.  I return to him in February after I have my next CT scan, which I am hoping will be my last through him.

On September 3rd., I saw my colorectal doctor for my 6-month follow-up, at which time she did DRE and anoscope, and told me everything looks great.  She hinted at a colonoscopy, but I told her the last one was just 2 years ago and normal, so she told me we'd get one next year, to which I replied "or the year after that!"  Anyway, my butt is still NED!

So yesterday, after my blood was drawn at the internist's office, I had my initial consultation with the gastro doc.  He was great and was pretty amazed at my knowledge of anal cancer, the treatment, etc.  I told him I knew WAY more than I really wanted to.  Frown  We discussed the episodes of blockage and he was straight up with me and told me there really is little that can be done when they occur, except push fluids to try to get the blockage to clear itself and to avoid food, which is exactly what I've been doing.  He has, however, ordered a CT enterograph with contrast for me, which I will have on 9/25, then return to see him on 9/29 to discuss the findings.  I like him very much and even got a chance to educate him a little on the treatment protocol for anal cancer.  He was under the impression that radiation was directed only to the tumor and not the surrounding area, including the pelvic region.  He asked me to send him the breakdown on my radiation--total and then the amounts given prior to each "cone down" and to what area.  I had to do some digging for that info, but finally found it in my notes.  I will also copy the radiation section of the NCCN guidelines for him and drop all of this info by his office.

So, although it appears that I continue to be NED, there are other issues to deal with at the present time--my kidneys.  I hope I get better results on the most recent tests.  But today, I celebrate being a 7-year survivor.  My husband and I had plans to go out to do something fun today, but it's pouring down rain here and we may put those plans on hold until we get a better weather day.  Regardless, I am happy to be here and doing as well as I am.  Thank you all for your kindness, support and prayers when I have needed them.  Love and Hugs to you all!

Martha 

Comments

  • sephie
    sephie Member Posts: 650 Member
    #2
    congrats

    yea, martha,   so happy for your big 7!!!!!  sounds as if you have a great doc for the blockage issue.... thanks for educating everyone on all things...even the docs.... hugs to you... and hope the kidneys get better and better....just to let you know, i have my kidney function checked each year due to the fact that i have had high blood pressure since my 20"s.....so far so good but i drink tons of water ......so much that i lose lots of electrolytes.....also , they check my tsh at MDA and it is out of wack so doing thyroid biopsies and etc....so glad your tsh is normal.... hugs again...and thanks again for all of your input into this site......sephie

  • EvelynB
    EvelynB Member Posts: 72
    #3
    Martha

    Thanks so much for sharing!Congratulations on your 7 years!!!!!!!!!! I sincerely commend you for continuing to post on here to encourage those of us that are still going through the beginning of this journey. I'm sure alot of people that are NED just stop coming on here and go on with their lives. I hope to follow your example if I am blessed to be NED as long as you have. I really hope you get good results on the kidney test.  

  • Cazz
    Cazz Member Posts: 106
    #4
    Martha

    You are our rock, not only on this forum but many others.  You are nearly always the first to welcome new people and try to assuage their fears and you do really help to make an overwhelming situation a bit more manageable.  I think without you, a couple of the more obscure fora just wouldn't survive, so thank you for being there.

    So saying, congratulations on your 7 year post treatment anniversary.  I know it hasn't been easy for you and you have had to overcome many obstacles (literally!) but you always manage to remain cheerful and upbeat.  This latest issue with kidney function must be a bit scary, not to mention a whole lot more research for you, and I hope it is something easily fixable, you don't deserve any more of this sh*t.  You deserve to go out and play with your husband, do something fun, so go forth and do lots of something fun and know that we are all cheering you on.  You can't possibly imagine the amount of support and goodwill you have coming from all of us and all the anonymous beasties out here.  So thanks again for being there for us and may your kidneys settle down and behave themselves.

    Carol

  • Lorikat
    Lorikat Member Posts: 681 Member
    #5
    Martha!

    seven years NED.  Wow!  Im now four years NED and have followed you all four!  Keep us posted about kidneys, OK.

  • pializ
    pializ Member Posts: 508 Member
    #6
    Lorikat said:

    Martha!

    seven years NED.  Wow!  Im now four years NED and have followed you all four!  Keep us posted about kidneys, OK.

    Martha

    Congratulations Martha on reaching 7 years NED! I am thrilled for you!

    Thank you for taking the time to be on this site supporting all of us. It really means a lot. 

    I hope the kidney issue gets resolved soon & that you can relax and enjoy good health. I am guilty also of not drinking enough. Best make some changes!

    i am awaiting some histology results on a lump removed from my thigh 2 weeks ago. I know the results are in, but the dermatologist ONLY gives out results in a letter which has not yet been dictated. It then gets sent by second class mail. I might possibly get to know on Saturday or Monday if I am lucky. I hate the waiting. It's been 2 weeks already.

    Much love & hugs

    Liz

  • eihtak
    eihtak Member Posts: 1,473 Member
    #7
    Martha....

    I hope you can feel my "virtual" high five, hug, and yipee yay to you on the 7 year mark! You have been such a solid source of information, advice, comfort, concern, and prayer to myself and others over the years. You have inspired, encouraged, and motivated people to hang on when the going got tough.....and for not only your input, but your friendship on this site I am so very grateful. As you continue to educate others, you aid in the fight against this whole cancer journey that too many find themselves on.

    I will pray that your follow-up on gastro concerns, kidney function, and hormonal hair, lol (I recently got a very short pixie style cut to balance my frail, thin, and breaking hair issues)....and any other related concerns, are effectively treated and you continue to move forward in health and happiness.

    Although the weather is not sunny, a brief dance in the rain maybe today???? Congratulations again!

    katheryn

  • RoseC
    RoseC Member Posts: 559
    #8
    Congratulations!!!

    Congratulations Martha!!!

    I hope those kidneys clean up their act and that the bowel obstructions stay away!

    I'm right behind you - my treatment was in Sept-Oct 2008. Just had my colo-rectal exam yesterday and all was fine. Occasional bowel issues and problems when I walk further then 250 feet (but that's due to back problems) - other than that, doing fine. I do run high on the kidney creatinine level - usually 1.3 - but it's been consistent since 2009.

     

    Congratulations again!!!!!

  • z
    z Member Posts: 1,414 Member
    #9
    Martha

    Martha, Great news on your 7 years of ned! 

    You are so smart to have all of your records for your doctor, so in combination with your records and your ct maybe he will be able to determine why the blockages. 

    With your kidneys I hope they will bounce back where they should.  The best part about all of this, is that what ever is going on it will be found out early, hopefully just nothing is going on.

    I wish you well, and thank you for helping everyone on the board with all your knowledge and research.

    LoriCool

     

  • mxperry220
    mxperry220 Member Posts: 493 Member
    #10
    Congratulations Martha

    I am right behind you.  I will be NED 7 years in January 2016. You provide some of the most useful information to many people on this site.  Thank God for people like you.

    Mike 

  • Lisa1028
    Lisa1028 Member Posts: 3
    #11
    Congratulations

    Martha,

    7 years NED is truly an inspiration! Thank you for sharing your good news.

    I am sorry to hear about your kidney and blockage challenges, and hope you'll be able to get those sorted out.

    I hope the rain has stopped so you can go celebrate!!

    Best to you,

    Lisa

  • mp327
    mp327 Member Posts: 4,440 Member
    #12
    Lisa1028 said:

    Congratulations

    Martha,

    7 years NED is truly an inspiration! Thank you for sharing your good news.

    I am sorry to hear about your kidney and blockage challenges, and hope you'll be able to get those sorted out.

    I hope the rain has stopped so you can go celebrate!!

    Best to you,

    Lisa

    Thank You Everyone!

    I want to thank all of you for your congratulatory comments and wishes for my continued good health, which I hope will be verified by the recent round of blood work.  I'm still waiting for the results.  You all are the very best and I appreciate your support and friendship more than you know.  I never feel alone in this when I have all of you to lend a compassionate ear or send a virtual hug!  Thanks again for all of your kinds words.  May God bless all of you!

    Hugs-

    Martha

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #13
    Congrats!

    Despite the sideffects souds like you are doing great. Regarding the kidney probably you know the salt control. For dehydration I heard coconut water is the best.

    i wish you many many happy and healthy yeare to come.

    Laz

  • TraceyUSA
    TraceyUSA Member Posts: 316
    #14
    7 years - WOOHOO!

    CONGRATS on another milestone, Martha!  When I first start looking at this site, 2.5 yrs ago, it was posts like this that made me realize there was "life after cancer" and gave me the hope and motivation I needed.

    I am glad you were referred to the gastroenternalist .. he sounds like a very good one.  It will be interesting to hear what he concludes and advises.

    Keep us posted on the kidney issues ... hopefully, they resolve themselves.

    You are a real asset to this communtity and I wish you all the best!

    Tracey

  • lizdeli
    lizdeli Member Posts: 569 Member
    #15
    TraceyUSA said:

    7 years - WOOHOO!

    CONGRATS on another milestone, Martha!  When I first start looking at this site, 2.5 yrs ago, it was posts like this that made me realize there was "life after cancer" and gave me the hope and motivation I needed.

    I am glad you were referred to the gastroenternalist .. he sounds like a very good one.  It will be interesting to hear what he concludes and advises.

    Keep us posted on the kidney issues ... hopefully, they resolve themselves.

    You are a real asset to this communtity and I wish you all the best!

    Tracey

    7 years

    Martha

    i am so happy for you. You are such an amazing person and we are all so blessed to have you here. I hope all works out with your kidney issues. Sounds like your doctors are on top of things. My 6 year end of treatment anniversary was on 9/11.  I remember the day so vividly. Ringing the bell at MD Anderson (it's what they have patients do when they finish treatment).  It was 11:30 p.m. and I had my last Cisplatin infusion.  I meekly rang the bell on the wall (sailor's bell).  The nurses said louder.  I said, no others are sleeping (those still getting infusions).  They said it doesn't matter, ring it loudly!  Which I did!

    God bless you and keep you healthy!

    Hugs,

    Liz

  • TraceyUSA
    TraceyUSA Member Posts: 316
    #16
    lizdeli said:

    7 years

    Martha

    i am so happy for you. You are such an amazing person and we are all so blessed to have you here. I hope all works out with your kidney issues. Sounds like your doctors are on top of things. My 6 year end of treatment anniversary was on 9/11.  I remember the day so vividly. Ringing the bell at MD Anderson (it's what they have patients do when they finish treatment).  It was 11:30 p.m. and I had my last Cisplatin infusion.  I meekly rang the bell on the wall (sailor's bell).  The nurses said louder.  I said, no others are sleeping (those still getting infusions).  They said it doesn't matter, ring it loudly!  Which I did!

    God bless you and keep you healthy!

    Hugs,

    Liz

    CONGRATS on your 6 years, Liz!

    I never tire of hearing about these milestones....only those who have been through this understand how meaningful they are.

    May you continue to be healthy,

    Tracey

  • mp327
    mp327 Member Posts: 4,440 Member
    #17
    TraceyUSA said:

    CONGRATS on your 6 years, Liz!

    I never tire of hearing about these milestones....only those who have been through this understand how meaningful they are.

    May you continue to be healthy,

    Tracey

    Liz

    Congratulations on your 6-year anniversary!  That is SO awesome!  You have been such a good friend and supporter to me and I am so happy that you are doing well.  I thank you for all of your support over the years.  May God bless you with many, many more such anniversaries--and me too!  Hugs!

    Martha

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

    Liz

    Congratulations on your 6-year anniversary!  That is SO awesome!  You have been such a good friend and supporter to me and I am so happy that you are doing well.  I thank you for all of your support over the years.  May God bless you with many, many more such anniversaries--and me too!  Hugs!

    Martha

    Laz & Tracey

    Thank you so much for the congrats!  Laz, I will try the coconut water.  I am drinking so much water these days, I feel like a water balloon!  Still waiting for the most recent blood work results, so we'll see if things are better.

    Martha

  • sephie
    sephie Member Posts: 650 Member
    #19
    lizdeli said:

    7 years

    Martha

    i am so happy for you. You are such an amazing person and we are all so blessed to have you here. I hope all works out with your kidney issues. Sounds like your doctors are on top of things. My 6 year end of treatment anniversary was on 9/11.  I remember the day so vividly. Ringing the bell at MD Anderson (it's what they have patients do when they finish treatment).  It was 11:30 p.m. and I had my last Cisplatin infusion.  I meekly rang the bell on the wall (sailor's bell).  The nurses said louder.  I said, no others are sleeping (those still getting infusions).  They said it doesn't matter, ring it loudly!  Which I did!

    God bless you and keep you healthy!

    Hugs,

    Liz

    congrats liz

    liz...congrats   congrats....so wonderful.... you are 2 months behind me on the 6 year mark.... i finished tx on 7/2009....I was so sick that they rolled me in on a hospital bed with iv's on both arms to finish radiation..( i stupidly got the picc line removed as soon as the infusion was finished and then got really sick )   ...they then rolled me up to the bell that i rang loud and clear ......i had mitomycin not cisplatin with the 5 fu.....so  it seems both meds work to kill the thing.... hugs to you and congrats again......sephie

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

    congrats liz

    liz...congrats   congrats....so wonderful.... you are 2 months behind me on the 6 year mark.... i finished tx on 7/2009....I was so sick that they rolled me in on a hospital bed with iv's on both arms to finish radiation..( i stupidly got the picc line removed as soon as the infusion was finished and then got really sick )   ...they then rolled me up to the bell that i rang loud and clear ......i had mitomycin not cisplatin with the 5 fu.....so  it seems both meds work to kill the thing.... hugs to you and congrats again......sephie

    Liz

    Congratulations on 6 years NED! Fantastic news! May it always continue that way

    Liz

  • pializ
    pializ Member Posts: 508 Member
    #21
    sephie said:

    congrats liz

    liz...congrats   congrats....so wonderful.... you are 2 months behind me on the 6 year mark.... i finished tx on 7/2009....I was so sick that they rolled me in on a hospital bed with iv's on both arms to finish radiation..( i stupidly got the picc line removed as soon as the infusion was finished and then got really sick )   ...they then rolled me up to the bell that i rang loud and clear ......i had mitomycin not cisplatin with the 5 fu.....so  it seems both meds work to kill the thing.... hugs to you and congrats again......sephie

    Sephie

    Congratulations! I am so pleased to see all you 'old timers' sharing your good news! 

    Liz

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