A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 1 of 2 12 LastLast
Results 1 to 10 of 18

Thread: Fredlh

  1. #1
    Regular User
    Join Date
    Feb 2017
    Posts
    11

    Smile Fredlh

    Well, today is my 1st post on this forum. 4 weeks ago I was diagnosed with Stage IV colon cancer, with several spots on liver and 1 in my lower lung. Since I almost had a blockage, surgery was 1st stop. That went well and now yesterday had my first chemo treatment.
    I am still wearing the pump, as I'm sure you all are very aware of. I am 78 years old, and had excellent health for so many years, that my attitude is not all that bad. At 74 I was diagnosed with Myasthisia Gravis. This has also caused me some problems, but overall great health for so many years.
    My Oncologist has told me that he can't cure it, but possible can treat me, and maybe give me a couple to three years. If that happens, guess I won't be too bad off. Of course as we all know, no promises there.
    I retired a year or so , so won't be busy with work so much. At this stage I feel fine, so good health starting out.
    So far into the 2nd day here, very few side effects, although probably to soon to cheer. I'm a fighter so I won't give up easy.
    That said, I of course, hope to be here to update for a while to come. any input will nice. I am a bit new to all this, as you know
    FREDLH

  2. #2
    Moderator Top User Fourlegsgood's Avatar
    Join Date
    Aug 2011
    Location
    UK Leicestershire
    Posts
    785
    Hello Fredlh,

    I am sorry that we have to meet this way but I am in total awe of you. With an attitude like that you have the best chance of grabbing what is available to you and living life to the full. Now that you have posted on here, please do keep us up to date with your experiences.

    With best wishes, 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 after 8 weeks and first competition 10 weeks after operation. July 2012, CT scan clear. June 2014, CT scan clear. December 2014, Colonoscopy clear.

  3. #3
    Regular User
    Join Date
    Feb 2017
    Posts
    11

    Smile

    Quote Originally Posted by Fourlegsgood View Post
    Hello Fredlh,

    I am sorry that we have to meet this way but I am in total awe of you. With an attitude like that you have the best chance of grabbing what is available to you and living life to the full. Now that you have posted on here, please do keep us up to date with your experiences.

    With best wishes, Nick
    Thanks Nick--name is Fred
    will post more later

  4. #4
    Senior User Doug K's Avatar
    Join Date
    Dec 2014
    Location
    Columbus, OH
    Posts
    442
    Quote Originally Posted by FREDLH View Post
    Thanks Nick--name is Fred
    will post more later
    Fred, Nick is right attitude makes such a difference. Given the progress of the disease, I encourage you to get at it, IT, living as fully as you are able. There are folks with stage four in my support group still motoring along 5, 7 years later. There is so much being done with options that weren't available ears ago. So, keep on keepin' along. Wish you the best!
    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    August 23, 2013 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    August-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
    Jan.6, 2014 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
    Sept. 4, 2014 ColonoscopyClear,CT Clear
    Dec. 2014 Follow up BlWk good,CEA .9
    Mar.2015Follow up BlWk continues good, CEA .6
    June 2015 Follow up BlWk good, CEA .7
    Sept2015Followup BlWkgood CEA .7 CT ScanClear NED
    Dec2015SurgicalHerniaRepair surgery, recovering.
    Sept2016Followup BlWkGood CEA .7 CTScanClear NED
    Continue ColoRectal Support Group monthly.

  5. #5
    Regular User
    Join Date
    Feb 2017
    Posts
    11

    Smile

    Quote Originally Posted by Doug K View Post
    Fred, Nick is right attitude makes such a difference. Given the progress of the disease, I encourage you to get at it, IT, living as fully as you are able. There are folks with stage four in my support group still motoring along 5, 7 years later. There is so much being done with options that weren't available ears ago. So, keep on keepin' along. Wish you the best!
    doug
    Thanks Doug,
    I plan to do just that. I will try to keep everyone updated. Any advise will be good. You guys are veterns
    Fred

  6. #6
    Regular User
    Join Date
    Feb 2017
    Posts
    11
    Hi all,
    Well this is day 4 after 1st treatment, and a little bit rough. Diarrhea and general weakness. Also some nausea. I have medicine for both and have currently taken it. I guess this is part of what would be expected.
    The 1st 2 days were so easy, I hoped to avoid this. The sensitive to cold is there also, but real mild so far. I'm drinking tea with ice in it, and feel it a little. I hope this is the worst of treatment #1.
    Can I expect more or worse with future treatments. Thanks for any advise.
    Fred

  7. #7
    Senior User Doug K's Avatar
    Join Date
    Dec 2014
    Location
    Columbus, OH
    Posts
    442
    Fred,

    I meant to say before, "welcome the the forum" however, these aren't the circumstances one wants to have bring them here we are pretty much all here not because we want to be.

    I think the effects of the chemo drugs, for the most part, are cumulative, that is to say they tend to build up as do the side effects. It is important to communicate the effects to your hematologist so they can adjust your treatments. Each person is different, each has a range of reactions, ability to tolerate the drugs, so the hematologist needs to know how things are affecting you.

    I had the cold reaction, it was very odd... first my hands, couldn't hold orange juice cartons for more than a few seconds. I used "oven gloves quite often. I couldn't tolerate cold drinks or ice ... , read that ice cream! Swallowing cold things was difficult. The effect went away after treatment, however I still have some absence of or change in feelings in my finger tips. My feet are experiencing neuropathy from the oxiliplatin chemo, I believe. I also had fluorouracil (Or 5FU as it is often called, aptly named!) and another form of it, (pills) xeloda or capecitabine with radiation. That combo destroyed the tumor and I had surgery to remove dead tissue. Six weeks later, that was followed up with six infusions of oxilliplatin and 5FU over 12 weeks.

    All the above combined to leave me with the neuropathy in my feet.. and the tingling (very slight) in my fingertips. The neuropathy, while frustrating isn't stopping me from playing at golf and pickleball. So, I consider myself very fortunate. Too, I have some lingering bowel issues, but these are to be expected, given the nature of the cancer.

    I am a member of a colorectal support group at the hospital where I was treated. We have members there who were diagnosed with stage IV colon cancer and are with us 4, 7 and in at least one case 10 years later. Treatments are based on the effectiveness of trials and after the medical community comes to a consensus about effects and treatment. There are always "outliers," not to build false hope, but each human body is a unique entity. Some people respond to treatment more quickly and deeply than others, some do not. So, keep a positive attitude and do all you can to enjoy each day you have.

    There are others on the forum who will offer you suggestions. Last it is important to do something every day that you are able. Short walks (I walked at the mall in our area for weeks) anything to keep yourself as fit as you are able to do. I found too, the side effect (feeling bad, fatigue, nausea, etc.) were hardly noticeable when I was talking with friends, out in the community having coffee, or just being engaged in some activity. Not that I could get rid of them, but my mental attention was drawn away....

    Good luck with treatment, do keep posting, check out the "stickies" on the forum to catch other suggestions.

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    August 23, 2013 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    August-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
    Jan.6, 2014 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
    Sept. 4, 2014 ColonoscopyClear,CT Clear
    Dec. 2014 Follow up BlWk good,CEA .9
    Mar.2015Follow up BlWk continues good, CEA .6
    June 2015 Follow up BlWk good, CEA .7
    Sept2015Followup BlWkgood CEA .7 CT ScanClear NED
    Dec2015SurgicalHerniaRepair surgery, recovering.
    Sept2016Followup BlWkGood CEA .7 CTScanClear NED
    Continue ColoRectal Support Group monthly.

  8. #8
    Regular User
    Join Date
    Feb 2017
    Posts
    11

    Smile

    Quote Originally Posted by Doug K View Post
    Fred,

    I meant to say before, "welcome the the forum" however, these aren't the circumstances one wants to have bring them here we are pretty much all here not because we want to be.

    I think the effects of the chemo drugs, for the most part, are cumulative, that is to say they tend to build up as do the side effects. It is important to communicate the effects to your hematologist so they can adjust your treatments. Each person is different, each has a range of reactions, ability to tolerate the drugs, so the hematologist needs to know how things are affecting you.

    I had the cold reaction, it was very odd... first my hands, couldn't hold orange juice cartons for more than a few seconds. I used "oven gloves quite often. I couldn't tolerate cold drinks or ice ... , read that ice cream! Swallowing cold things was difficult. The effect went away after treatment, however I still have some absence of or change in feelings in my finger tips. My feet are experiencing neuropathy from the oxiliplatin chemo, I believe. I also had fluorouracil (Or 5FU as it is often called, aptly named!) and another form of it, (pills) xeloda or capecitabine with radiation. That combo destroyed the tumor and I had surgery to remove dead tissue. Six weeks later, that was followed up with six infusions of oxilliplatin and 5FU over 12 weeks.

    All the above combined to leave me with the neuropathy in my feet.. and the tingling (very slight) in my fingertips. The neuropathy, while frustrating isn't stopping me from playing at golf and pickleball. So, I consider myself very fortunate. Too, I have some lingering bowel issues, but these are to be expected, given the nature of the cancer.

    I am a member of a colorectal support group at the hospital where I was treated. We have members there who were diagnosed with stage IV colon cancer and are with us 4, 7 and in at least one case 10 years later. Treatments are based on the effectiveness of trials and after the medical community comes to a consensus about effects and treatment. There are always "outliers," not to build false hope, but each human body is a unique entity. Some people respond to treatment more quickly and deeply than others, some do not. So, keep a positive attitude and do all you can to enjoy each day you have.

    There are others on the forum who will offer you suggestions. Last it is important to do something every day that you are able. Short walks (I walked at the mall in our area for weeks) anything to keep yourself as fit as you are able to do. I found too, the side effect (feeling bad, fatigue, nausea, etc.) were hardly noticeable when I was talking with friends, out in the community having coffee, or just being engaged in some activity. Not that I could get rid of them, but my mental attention was drawn away....

    Good luck with treatment, do keep posting, check out the "stickies" on the forum to catch other suggestions.

    doug
    Thanks Doug,
    That was very helpful. I followed your post during treatment, which was also very interesting. I am even now trying to do things that you mentioned in your post. I don't have the cold hands problems(yet), that you did. Some minor feeling of drinking something cold, but not a problem.
    Exercise and lots of water, are on my list. This is day 5 and yesterday was the roughest of the bunch. Today I feel almost normal. I hope to be this lucky after the next treatment. I hope to hear from all you as this goes on.
    I understand that with my situation(stage IV), there are no guarantees as to the time I could have. I mostly hope for a few years, because my wife has COPD and needs a lot of help. Even though we all probably hope to live longer, I have had a great life
    Later
    Fred

  9. #9
    Regular User
    Join Date
    Feb 2017
    Posts
    11
    FREDLH
    Day 6 some lingering diarrhea problems, overall tolerable. Since I also have Myasthenia Gravis, It is hard to know which medicines are causing diarrhea, since both list those as main side effects. I must be really lucky to get all the dreaded diseases right at the same time. I took 1 imodium it has helped.
    Day 7, still some diarrhea, took 2 more imodium, again has helped.
    I see the Nurse P.A. tomarrow, and plan to talk with her the diarhea and the use of imodium to maybe help some more.
    I have not needed very much nausea meds, i guess thats a positve.
    Also get blood work tomarrow, which is probably standard proceedure.
    Fred

  10. #10
    Senior User Doug K's Avatar
    Join Date
    Dec 2014
    Location
    Columbus, OH
    Posts
    442
    Fred,
    People in the colorectal support group I meet with take some crazy amounts of Imodium. I would run it by the Nurse PA tomorrow. I occasionally take one to slow things down.

    Also, diet does play a role. We have discussed the nature of fiber in our diets quite a bit. The conclusion seems to be it is very different for each person. I am eating a high calorie diet, likely high fat and putting lots of fat around my belly, which isn't a good idea. My wife is eating healthier and lots of fiber (soluble vs non-soluble seems to make difference for me). But this diet doesn't seem to help me. It has been a challenge. I don't like the weight gain I am experiencing, but the diet has helped with my stool. The BRAT diet seems to be good as well, bananas, rice, applesauce and toast.

    I recently read an interesting book, "GUT" by Julia Enders. Lots of good info on the nature of our guts and the microbes that are there. Not so helpful re. cancer and treatments, but good info on the gut.

    I know you want the diarrhea to be controlled but the experimenting that must be done is tough to do when being treated. I am nearly three years away from final chemo and still seem to have my issues, though more controlled than I ever thought possible.

    I take four capsules of Metamucil daily. We also had a suggestion of Kelloggs Bran Buds with yogurt or cottage cheese. I did this and had some success....

    Check with the PA about fiber, diet, and the Imodium.

    Good luck on the blood results.

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    August 23, 2013 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    August-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
    Jan.6, 2014 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
    Sept. 4, 2014 ColonoscopyClear,CT Clear
    Dec. 2014 Follow up BlWk good,CEA .9
    Mar.2015Follow up BlWk continues good, CEA .6
    June 2015 Follow up BlWk good, CEA .7
    Sept2015Followup BlWkgood CEA .7 CT ScanClear NED
    Dec2015SurgicalHerniaRepair surgery, recovering.
    Sept2016Followup BlWkGood CEA .7 CTScanClear NED
    Continue ColoRectal Support Group monthly.

 

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •