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Thread: I've been a lurker for a while now...

  1. #1
    Newbie Regular User
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    Thumbs up I've been a lurker for a while now...

    Hi Everyone,

    I've been lurking the forum for quite a few months now, decided it was time to speak up.

    I'm 53, female and I have stage 3B rectal cancer.

    It began by not being able to have a bowel movement. Lots of straining, and some blood. I thought it was from a hemorrhoid that suddenly popped up, so I did the "ah, it's nothing, let's wait and see if it straightens itself out" thing. After 3 weeks I decided to go see my doctor, she did a rectal exam ( LOL first of my life and I can tell you it was NOT pleasant. If I only knew then it would be the first of many I may have enjoyed it more ) and told me I needed to have a colonoscopy. Flash forward 3 weeks, got the result of the colonoscopy and the doctor told me "It looks like cancer, but isn't testing like cancer, go see an oncologist".

    Great, still don't know what's going on but I'm completely freaked. That's when I found all of you. I've done a lot of reading in the forum, and the honesty I found here was greatly comforting. You all are rock stars!


    Anyway, my treatment schedule was 28 days of chemo and radiation. Then surgery, and then 8 more rounds of chemo. The first 28 days of chemo was Xeloda, and I tell you, it's a wonder drug to me. NO vomiting. Works for me. Radiation sucks the big one (sorry if that offends anyone). I go get my follow up CT and MRI scans and my tumor has shrunk, I've lost 30 lbs and my surgeon says "YAY for you. You are doing so well we are going to postpone the surgery and do the next round of chemo. Go me!


    I am sitting here currently on the second to last round of FOLFOX and life has sucked worse, but it's running a close second. I still haven't had any vomiting, so I count myself lucky on that. I still have hair, although it has thinned out quite a bit, so I count myself lucky on that. I do have the sensitivity to cold, the tingling in my legs and feet. Can't walk down the freezer section of Walmart without appearing like I'm a lunatic. Wearing winter gloves, a sweater and a scarf over my mouth. But I like crazy, so I count myself lucky on that. LOL maybe some day I'll show up on a "People of Walmart" site.


    I've been scared through each phase of this treatment, and that's when I turn to you all. The way you have opened yourselves up on this forum has pretty much let me know what I can expect and for that I am truly grateful. Thank you all so much.



    Pretty soon I'll be embarking on the final stage of treatment, which will be the surgery. I'm hoping for the best, in that I won't have to have a permanent colostomy bag. Either way, I'll still be alive, and I count myself lucky on that.



    Thank you all,

    Anne
    Last edited by Anne1965; 10-04-2018 at 03:17 PM.

  2. #2
    Moderator Top User Fourlegsgood's Avatar
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    987
    Quote Originally Posted by Anne1965 View Post
    Hi Everyone,

    I've been lurking the forum for quite a few months now, decided it was time to speak up.

    I've 53, female and I have stage 3B rectal cancer.

    It began by not being able to have a bowel movement. Lots of straining, and some blood. I thought it was from a hemorrhoid that suddenly popped up, so I did the "ah, it's nothing, let's wait and see if it straightens itself out" thing. After 3 weeks I decided to go see my doctor, she did a rectal exam ( LOL first of my life and I can tell you it was NOT pleasant. If I only knew then it would be the first of many I may have enjoyed it more ) and told me I needed to have a colonoscopy. Flash forward 3 weeks, got the result of the colonoscopy and the doctor told me "It looks like cancer, but isn't testing like cancer, go see an oncologist".

    Great, still don't know what's going on but I'm completely freaked. That's when I found all of you. I've done a lot of reading in the forum, and the honesty I found here was greatly comforting. You all are rock stars!


    Anyway, my treatment schedule was 28 days of chemo and radiation. Then surgery, and then 8 more rounds of chemo. The first 28 days of chemo was Xeloda, and I tell you, it's a wonder drug to me. NO vomiting. Works for me. Radiation sucks the big one (sorry if that offends anyone). I go get my follow up CT and MRI scans and my tumor has shrunk, I've lost 30 lbs and my surgeon says "YAY for you. You are doing so well we are going to postpone the surgery and do the next round of chemo. Go me!


    I am sitting here currently on the second to last round of FOLFOX and life has sucked worse, but it's running a close second. I still haven't had any vomiting, so I count myself lucky on that. I still have hair, although it has thinned out quite a bit, so I count myself lucky on that. I do have the sensitivity to cold, the tingling in my legs and feet. Can't walk down the freezer section of Walmart without appearing like I'm a lunatic. Wearing winter gloves, a sweater and a scarf over my mouth. But I like crazy, so I count myself lucky on that. LOL maybe some day I'll show up on a "People of Walmart" site.


    I've been scared through each phase of this treatment, and that's when I turn to you all. The way you have opened yourselves up on this forum has pretty much let me know what I can expect and for that I am truly grateful. Thank you all so much.



    Pretty soon I'll be embarking on the final stage of treatment, which will be the surgery. I'm hoping for the best, in that I won't have to have a permanent colostomy bag. Either way, I'll still be alive, and I count myself lucky on that.



    Thank you all,

    Anne

    Anne, Thank you for sharing your story so far. Yes, it is all scary and I freely admit it. However you appear to be doing really well and to have had a good result from the chemo and radiation.

    You have surgery coming up and I say this to everyone, if at all possible try to do some exercise before the surgery if you can. I am afraid that I know nothing about your general mobility and I apologize if you are not able to do it but if you can it will help enormously with recovery.

    I was desperate not to have a bag but I did say to the surgeon that I trusted him to do whatever he had to whilst he was in there.

    regards, Nick
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping 2weeks later and first competition 2 weeks after that. July 2012 - CT scan clear. June 2014 - CT scan clear. December 2014 - Colonoscopy clear. July 2017 - 6 year CT scan clear.

  3. #3
    Moderator Top User Doug K's Avatar
    Join Date
    Dec 2014
    Posts
    602
    Anne,

    You have found the right forum. I had rectal cancer and treatment is posted in my signature. Similar result, the chemo radiation eliminated my tumor, but there was surgery to eliminate scar tissue in the rectum and to collect some lymph nodes.

    Follow-up chemo and I am now five years out from diagnosis! Yea for me. Hang in there this is a treatable cancer, they have learned lots about treatments. I was fortunate to not need a colostomy and am doing well. The procedure is a LAR, low anterior resection and I have had a difficult time with my bowel control, but all is manageable.

    Nick's right on about exercise, all I was able to do was a strong walking regime, it helps for sure to be in as good a physical condition as possible.

    Sounds like you are on target with your cancer treatment team. Good luck and keep us posted.

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

  4. #4
    Newbie Regular User
    Join Date
    Oct 2018
    Posts
    11
    Wow, a lot of stuff has happened since my last/first post.

    I finished chemo on the 19th. Oh what joy and celebration ensued. I was determined to ring that damn bell. So I did, loudly and proudly.


    A week later, my husband passed away. My heart has been broken, and I've pretty much lost all fight left in me. I don't want to do this without him.



    I got my CT scan and MRI's done this past Monday and I don't really care what the results are.

  5. #5
    Moderator Top User Fourlegsgood's Avatar
    Join Date
    Aug 2011
    Posts
    987
    Quote Originally Posted by Anne1965 View Post
    Wow, a lot of stuff has happened since my last/first post.

    I finished chemo on the 19th. Oh what joy and celebration ensued. I was determined to ring that damn bell. So I did, loudly and proudly.

    A week later, my husband passed away. My heart has been broken, and I've pretty much lost all fight left in me. I don't want to do this without him.

    I got my CT scan and MRI's done this past Monday and I don't really care what the results are.
    I am so sorry. I am at a complete loss as to know what to say. I hope any friends and family can help you through this awful time.

    Nick
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping 2weeks later and first competition 2 weeks after that. July 2012 - CT scan clear. June 2014 - CT scan clear. December 2014 - Colonoscopy clear. July 2017 - 6 year CT scan clear.

  6. #6
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,426
    This will not come out as I wished so forgive.
    Condolences and congratulations.
    You have shown that despite the recent bereavement you have the inner strength and determination to get through the next round.
    This may seem inappropriate but facing CRC surgery and the recovery may help in the bereavement process.
    I wish you the very best and please keep us updated on progress.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  7. #7
    Moderator Top User Doug K's Avatar
    Join Date
    Dec 2014
    Posts
    602
    Anne, I too, know not what to say. How sad I am for you and your loss. I get how difficult "celebrating" you outcome would be. Know there is an will continue to be lots of support here for you. Too, your story will encourage others who have heard a similar diagnosis. Please drop back as you continue to meet milestones this disease presents.

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

  8. #8
    Senior User
    Join Date
    Dec 2012
    Posts
    360
    Dear Anne,

    Do not give up, you still have to fight it.
    You are in the dark place now, I understand... losing someone you love and have support from, cannot be replaced.
    Go on even if you cannot, you will get stronger one step at the time, always think of your husband next to you.
    Love,
    Aneta

  9. #9
    Quote Originally Posted by anetacz View Post
    Dear Anne,

    Do not give up, you still have to fight it.
    You are in the dark place now, I understand... losing someone you love and have support from, cannot be replaced.
    Go on even if you cannot, you will get stronger one step at the time, always think of your husband next to you.
    Love,
    Aneta
    Anne,

    What Anita said.....I simply cannot imagine how devastated you must feel. All I can say is I am hoping you hang in there....I am sure it is what your husband would have wanted you to do. So please.....Keep on.....Sending much love

    David
    67 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED.
    5/15/15: No NED this time. Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    3 yr. post SCT check up: all fine, no issues.

  10. #10
    Top User mojo's Avatar
    Join Date
    Apr 2010
    Posts
    2,375
    Anne, I am so sorry about the loss of your husband. I lost my husband almost 7 years ago and I remember the shock and a loss. He was expected to die it was not a sudden loss but it didn’t hurt any less. Know that time does help you never will stop missing him, but start realizing that life is such a precious thing. I tried to accomplish things for both of us because he’s not here to do his part. Please treat yourself well, cry when you need to but remember he would want you to go on. Just as you would’ve wanted him to go on if you would’ve passed. Please seek out your friends, Talk to people and share the good times and the pain. But please treat yourself well, you deserve to live. Your life matters. Big hugs from Sharon

 

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