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

  1. #11
    Moderator Top User Doug K's Avatar
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    Dec 2014
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    Anne,

    I was looking at threads where I had posted and came across your post. I was wondering how things are going for you? I know you are trying to work with the loss of your husband, please know that I cannot imagine what you are going through. Please know, I am just checking back with you and following up on your treatment. Any news you can share with others here would be appreciated. So many people are helped by just reading how others have fared and how their treatments compare to their own.

    Hope you are doing as well as can be expected.

    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

  2. #12
    Regular User
    Join Date
    Oct 2018
    Posts
    19
    Thank you all for your kind words of support. I'm just sorry that it has taken my this long to read them.

    Doug, thank you for checking in to see how I'm doing, I really appreciate you.


    So where am I at now? Well, a week after my husband passed away, I had to say good-bye to him at his funeral. A week after that I had to move from Texas to Louisiana as I could not afford to stay where we lived, I had to come live with my daughter.

    I admit that for the longest time I did not care what happened to me as a result of the cancer. I knew that God wouldn't let my husband come back, so I just thought maybe I could go home too. Turns out God has a different plan for me.

    I'm 6 months out from my last chemo session, and I still have side effects from the FOLFOX. My fingertips are numb, pretty much can't feel them. I occasionally have trouble with my grip, will drop things or just can't pick them up to begin with. My feet and legs are also pretty numb, with the tingling sensation. I did talk to my PCP about that, and she prescribed Gabapentin, and it pretty much helped over night. I still have some numbness, and the tingling never goes away completely, but I can at least FEEL that I have feet.

    Brain isn't as sharp as it used to be, and I am sometimes more random than my 10 year old grand daughter, but I find most of that funny, so it doesn't bother me too much.

    I had a new colonoscopy in March, 2 new polyps, both benign. The tumor is still there, and still is cancerous, but it is significantly smaller. I just had a CT scan done on Monday, will go see my doctor tomorrow to find out the results of that. On May 6th I am scheduled for a pre-op appointment. Wish me luck on that because I am scared spitless.

    Once again I want to thank all of you for your kindness. I was in a really low spot, and the fact that you all took time to reach out to a stranger says a lot about your character.

    Be blessed,
    Anne

  3. #13
    Moderator Top User Doug K's Avatar
    Join Date
    Dec 2014
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    620
    Quote Originally Posted by Anne1965 View Post
    Thank you all for your kind words of support. I'm just sorry that it has taken my this long to read them.

    Doug, thank you for checking in to see how I'm doing, I really appreciate you.


    So where am I at now? Well, a week after my husband passed away, I had to say good-bye to him at his funeral. A week after that I had to move from Texas to Louisiana as I could not afford to stay where we lived, I had to come live with my daughter.

    I admit that for the longest time I did not care what happened to me as a result of the cancer. I knew that God wouldn't let my husband come back, so I just thought maybe I could go home too. Turns out God has a different plan for me.

    I'm 6 months out from my last chemo session, and I still have side effects from the FOLFOX. My fingertips are numb, pretty much can't feel them. I occasionally have trouble with my grip, will drop things or just can't pick them up to begin with. My feet and legs are also pretty numb, with the tingling sensation. I did talk to my PCP about that, and she prescribed Gabapentin, and it pretty much helped over night. I still have some numbness, and the tingling never goes away completely, but I can at least FEEL that I have feet.

    Brain isn't as sharp as it used to be, and I am sometimes more random than my 10 year old grand daughter, but I find most of that funny, so it doesn't bother me too much.

    I had a new colonoscopy in March, 2 new polyps, both benign. The tumor is still there, and still is cancerous, but it is significantly smaller. I just had a CT scan done on Monday, will go see my doctor tomorrow to find out the results of that. On May 6th I am scheduled for a pre-op appointment. Wish me luck on that because I am scared spitless.

    Once again I want to thank all of you for your kindness. I was in a really low spot, and the fact that you all took time to reach out to a stranger says a lot about your character.

    Be blessed,
    Anne
    Anne,
    Thanks for posting to let us know where things are. It sounds like you are headed in a good direction. I wish you well with your continued treatment. Keep moving, and they will get you going quickly following surgery. Please keep posting here as you are paving the way for others who have come to find this disease inside them. You help show it is curable, treatable and we all benefit from knowing that.

    keep on keepin' on
    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. #14
    Moderator Top User Doug K's Avatar
    Join Date
    Dec 2014
    Posts
    620
    Anne,

    I am just checking in again. You had last posted that May 6 was a preop appointment... so, where are things now?

    I just want you to know there are folks here who do care and are concerned for your progress.

    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

  5. #15
    Regular User
    Join Date
    Oct 2018
    Posts
    19
    Well, the pre-op didn't go as I had hoped. They told me that a permanent ostomy was in my future. Took me a while to get my head around that. I am so not wanting that bag.

    I saw my PCP yesterday, and he cleared me for surgery pending the results of my chest x-ray and the EKG, but seems pretty confident that there is no reason I can't make it through the surgery. DUH, I could have told him that. LOL

    One more trip to the oncologist to make sure that surgery is my only option at this point. I want to make sure that it's the only thing left before I resign myself to pooping in a bag the rest of my life.

    I'm prepared for the worst, but hoping for the best.

    Thanks for checking in Doug. I'm grateful for you all on this forum, but I really suck at keeping in touch. I'll try to do better, I swear. =o)

  6. #16
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,438
    Anne,
    Wise move if I may say.
    On the question of a bag, over the last few years I’ve met two ladies both with permanent bags.
    One is a relation of our DIL who lives in Cornwall, she’s lived with a permanent bag for at least 15 years, as she says
    yes I need to watch my diet but it has never stopped me doing anything.
    The other lady into her late 40’s I met whilst skiing in Westendorf Austria some 4 years ago.
    She then had a ostemy since the year before due to extensive IBS, frankly she outskii’d all of us and as she said
    Doesn’t bother me at all.
    i can only say she amazed me.
    So from their experience I’d say if you have the mindset, get used to the darned thing, all being well you should continue to lead a normal
    Certainly those two ladies were amazing people.
    Good luck
    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. #17
    Regular User
    Join Date
    Oct 2018
    Posts
    19
    Ok..... So I saw the oncologist.... More chemo is out at this point. Said he didn't want to give me more now because he doesn't know what I'll need after the surgery. So it's the bag for me.... I'm going to start looking around for outrageous bag covers or something so that I can give a big FU to the damn thing. If I got to have it, it's going to have to make me laugh.. My daughter has been trying very hard to make me see the funny side of it... I was talking to my grandbaby and somehow the conversation lead to me saying "name one thing I can't do" and my daughter piped up "poop in a toilet in a couple of weeks"... I just about died laughing.

    My doc told me that at least the next chemo will not involve the oxy, so I'm thankful for that. Still will have the 5FU, but I survived it once, I'll do it again.

    LOL the worst part of the visit is when he told me I'll have my port for at least 2 more years. I HATE this little bugger and am so wanting it gone. Weird what our brain focuses on.

  8. #18
    Regular User
    Join Date
    Oct 2018
    Posts
    19
    So... Surgery is scheduled for Tuesday, June 11th...

    I'm scared... But strangely excited too...

    Hooooooboy, I'm a mess....

  9. #19
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,438
    Anne,
    its normal to be scared, we all have been when facing surgery, myself I guess more than some.
    The redeeming factor is you are starting on the physical treatment pathway to remove the primary cancer.
    Yes, I was excited also thinking two times “Just get the thing out of me” in itself that thought provoked a psychological boost.
    Good luck and keep us posted
    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.

  10. #20
    Moderator Top User Doug K's Avatar
    Join Date
    Dec 2014
    Posts
    620
    Anne, good to hear that things are moving along. As for the surgery, think positively and be prepared to get up and going as soon as they give you a green light. We have several people in our support group through the hospital who have colostomys. They seem to have mastered the procedures required and have moved along with their lives. When you can get to it, let us know how you are doing. Too, when you feel up to it, your experience and candor will offer others some support as they confront similar issues.

    You have had a series of major issues and likely need some time to recover. We all wish you well.

    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

 

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