new-wife of-34yrs-stageIII-misdiagnosed as crohns

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emrose
emrose Member Posts: 136
edited March 2014 in Colorectal Cancer #1
hello

My husband was diagnosed with stage III coloncancer on December 9th. After 2 colonoscopies, 3 CT scans and one hospitalization to drain an abcess, our GI doc was sure it was crohns. All biopsies for cancer were negative.

Luckily, our doc was aggressive and when he suspected the reason he could not get the scope through his sigmoid colon was scar tissue from crohns he suggested surgery instead of trying a million drugs first, like many people do! (thank goodness!!) They did the surgery and discovered it was an 8cm tumor and not crohns! So they went back in to remove more and get he lymph nodes. 1 of 26 came back positive. He'll start chemo in january.

Just wanted to say hi. I became an expert on crohns and found a wonderful forum of support and info, so it's strange to be starting over!! We are looking at this in a positive way though. Crohns was a lifelong battle we were preparing to face, that would likely mean more surgeries and a life of heavy duty meds. We are hopeful for many years of remission after chemo! Fingers and toes crossed!!

Some of my concerns:

1. He recovered quickly after surgery but pushed his luck and went to work too soon. Now he feels horrible. He's coming off the prednisone they had him on for the "crohns" and he's just feeling crappy!! Weak, dizzy, swollen glad in throat...

2. He was constipated but now it's diareaha!! What's better??

3. We were going to start trying for a baby in January :( I want to have a family so bad. Oncologist said there are hardly any statistics on folfox and fertility because most are past the age for having kids when they get colon cancer. This is a huge concern for me.

4. We are going to Mexico in February, between treatments. Its a beautiful resort and im so excited!! We booked the trip to reward ourselves for all we've been through this year (and that was before all this!! Been a long year) we really really need the vaca! Oncologist said it's okay. But, are we crazy??

I want to fix everything, and I feel so powerless. I have done so much research on crohns and am overwhelmed by the fact that I have to start this process over. I love him and want to have a family and grow old with him. Sometimes I am sad, other times I am selfish and angry, and other times I'm okay and fullof hope. He copes vey differently and doesn't go through the rollercoaste of emotions, research, etc that I do! He just wants to feel better.

Sorry for all the rambling! Just looking for a new community of support and wanted to introduce myself :)
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Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
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    Welcome to the semi-colons...
    We are the best life-experience tumor board around!!! It's strange, isn't it, how we come to know our enemy so well?

    First thing to remember, in response to your comment about 'I want to fix everything'...well, I'm afraid this is a process, and control is NOT in your hands. One day at a time. Don't let yourself get caught up in trying to control, this is one disease that just has it's own treatment protocol. And the treatment can make him feel pretty bad, unlike crohns where the goal is to control the symptoms.

    You caregivers have it the WORST! You have to stand by and watch...my beau is a physician, so he was REALLY having trouble, considering he was trained to cure people, NOT watch me go through times in my treatment when I looked and felt like HECK!!!!

    Keep in mind what you have already said...there is an end to this. He has a chance for the future that is symptom-free!!!!

    Hugs, Kathi
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Welcome
    Hi, welcome to the group. I wish you and your husband the best. You'll find this a very supportive and helpful group.

    *hugs*
    Gail
  • emrose
    emrose Member Posts: 136
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    KathiM said:

    Welcome to the semi-colons...
    We are the best life-experience tumor board around!!! It's strange, isn't it, how we come to know our enemy so well?

    First thing to remember, in response to your comment about 'I want to fix everything'...well, I'm afraid this is a process, and control is NOT in your hands. One day at a time. Don't let yourself get caught up in trying to control, this is one disease that just has it's own treatment protocol. And the treatment can make him feel pretty bad, unlike crohns where the goal is to control the symptoms.

    You caregivers have it the WORST! You have to stand by and watch...my beau is a physician, so he was REALLY having trouble, considering he was trained to cure people, NOT watch me go through times in my treatment when I looked and felt like HECK!!!!

    Keep in mind what you have already said...there is an end to this. He has a chance for the future that is symptom-free!!!!

    Hugs, Kathi

    thanks kathi
    I really appreciate your comment about the treatment being different than crohns. I might have to be reminded of that!! This is a very different process... With crohns the meds make you feel better but don't resolve the problem long term... With cancer it seems to be the exact opposite! I have to remember this is a different beast than we once thought and the treatment plan will be much different too. But I continue to believe this really could be better in the end - even our oncologist agrees :) just have to remain positive and keep putting one foot in front of the other!

    And... I know... I can't fix this. I know. This is a hard one for me. I'm usually very good at making things better. So, I give in. At least I can make him feel loved and supported. Better than nothin!

    Also, I appreciate your comment about this being hard for caregivers :( I feel so awful complaining about anything because I know I'm lucky to be healthy... So, thank you.

    I'm glad I found this place. Thanks in advance to anyone who has advice or words of encouragement. To go from planning to try for a baby to planning for chemo has been hard to take in and I get comfort in reading others' stories of hope :)
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    emrose said:

    thanks kathi
    I really appreciate your comment about the treatment being different than crohns. I might have to be reminded of that!! This is a very different process... With crohns the meds make you feel better but don't resolve the problem long term... With cancer it seems to be the exact opposite! I have to remember this is a different beast than we once thought and the treatment plan will be much different too. But I continue to believe this really could be better in the end - even our oncologist agrees :) just have to remain positive and keep putting one foot in front of the other!

    And... I know... I can't fix this. I know. This is a hard one for me. I'm usually very good at making things better. So, I give in. At least I can make him feel loved and supported. Better than nothin!

    Also, I appreciate your comment about this being hard for caregivers :( I feel so awful complaining about anything because I know I'm lucky to be healthy... So, thank you.

    I'm glad I found this place. Thanks in advance to anyone who has advice or words of encouragement. To go from planning to try for a baby to planning for chemo has been hard to take in and I get comfort in reading others' stories of hope :)

    Welcome to the gang!
    Hey Emrose,

    I wish I didn't have to say it, but welcome to the gang here... it would be nice if you didn't have to find us but now that you have, pull up a stump and make yourself at home :)

    I'm so sorry you had to go through all that frustration and research for a condition that you now find your honey doesn't have! Well, I'm glad he doesn't have it, but sorry you had to go through all that effort.

    I agree with what Kathi said... both of you, just sit back and realize you are going on a ride... one that has bumps and dead ends, but then picks up and you're on your way again :)

    One of the things I might advise against... and that's doing a lot of research on the internet. I know, I know... us computer nerds are driven to use this computer tool and the internet has lots to look up... but sooo much of it is wrong, or if not wrong exactly, totally out of date. One of the things I have to keep reminding myself... when you go to an "official" looking site and read the statistics... some of them can be overwhelming. BUT... by the time statistics are published, they are already 5 - 10 years out of date. First, studies have to be done and then once all the data for the studies are collected, someone has to analyze that data and come up with statistics that they feel that data represents. Then it goes around to a bunch of colleagues to get their agreement on, and then a report is written up to support these findings. Eventually, the report finds it's way into some journal or publication... and by the time it's found on the internet... well, suffice it to say, even by the time it's published in a journal or publication, it is minimum 5 years out of date.

    Also... doctors live for their stats. They like to have stats to point to to say "This is what's going to happen" or "This is how you are going to feel" and when that doesn't happen, it's amazing but no one writes up those stats... that Patient A, B, and C actually felt great!

    So, you just take it a day at a time and try to avoid doing too much research on the internet. Your best bet is to ask your oncologist questions... and of course, come here because we are the fellow patients who have actually gone through all these various treatments... and are still alive to talk about them :)

    Hugggggs,

    Cheryl
  • claud1951
    claud1951 Member Posts: 424 Member
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    Welcome
    Welcome to the group. Your Hubby is now an official Semi-colon!

    I, too, was Stage III colon cancer (ascending). They removed about 12" of colon. Found 2 out of 28 nodes cancer so I, too, went on Chemo for 6 months. And.....it's been a year now and I'm NED (No Evidence of Disease)! I like these words instead of remission >>grin>>

    I agree with Cheryl in that researching the internet can be very scary. I started to do that and then my Husband said..no.no.
    Once we knew what the Chemo meds were going to be then we would look for those but I found CSN and this is the best place to read and ask questions.

    Rest is something he will have to do. It's hard but resting is healing. You'll find some, on here, work during chemo, too. I was retired so didn't have to.
    Fatigue is the #1 side effect of chemo.

    Keeping a great attitude is very important for both of you and it sounds like you have one.
    Caregivers are so important and it's hard work.

    If your Onc says it's okay for you to go on Vacation, that's great.
    Let us know what your husband chemo meds will be. We'll all let you know what to expect. Or I might say, we are all different, so you'll get some different answers. He may or may not experience the side effects.

    Drinking water is an important during chemo (and or course anytime). Again, there will be other suggestions.

    My best to you and your husband. Tell him to keep his energy for moving forward.

    Claudia
  • emrose
    emrose Member Posts: 136
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    claud1951 said:

    Welcome
    Welcome to the group. Your Hubby is now an official Semi-colon!

    I, too, was Stage III colon cancer (ascending). They removed about 12" of colon. Found 2 out of 28 nodes cancer so I, too, went on Chemo for 6 months. And.....it's been a year now and I'm NED (No Evidence of Disease)! I like these words instead of remission >>grin>>

    I agree with Cheryl in that researching the internet can be very scary. I started to do that and then my Husband said..no.no.
    Once we knew what the Chemo meds were going to be then we would look for those but I found CSN and this is the best place to read and ask questions.

    Rest is something he will have to do. It's hard but resting is healing. You'll find some, on here, work during chemo, too. I was retired so didn't have to.
    Fatigue is the #1 side effect of chemo.

    Keeping a great attitude is very important for both of you and it sounds like you have one.
    Caregivers are so important and it's hard work.

    If your Onc says it's okay for you to go on Vacation, that's great.
    Let us know what your husband chemo meds will be. We'll all let you know what to expect. Or I might say, we are all different, so you'll get some different answers. He may or may not experience the side effects.

    Drinking water is an important during chemo (and or course anytime). Again, there will be other suggestions.

    My best to you and your husband. Tell him to keep his energy for moving forward.

    Claudia

    Cherly, gail, and claudia
    thank you!!! I appreciate the warm welcome and positive energy from all of you!! It's amazing how positive and full of hope everyone is here, it is truly inspiring and I'm glad I'm in your company now.

    I agree about the research - I over did it when he was (mis)diagnosed with crohns and have learned my lesson. I started frantically researching when we first heard it was cancer, but I think I'm passed that point now and can come here if/when needed. Your point about the statistics is very true and one year in medical terms goes along way with all the research they do! I really really appreciate that perspective. The one good article I found was actually written by a cancer survivor about statistics and how they are often misinterpreted and not the dealth sentance some people see them as. I'm ALWAYS looking for the poitive side of things... I don't see any other option.

    As for the chemo- he'll do 12 of the flofox (I think that's it) and will go in for three hours on a Friday afternoon and then take it home with him for the weekend and go in Monday to be disconnected. He'll do that every other week for 6mo. January - June ( just in time for summer) he will try to keep working, which is why he'll do the treatments over the weekend. Hoping that it works out that way, but I know I know :) its not in my control!! I wish I could know exactly how his body will react! your tips are very helpful and I've already started harassing him about drinking water!!

    Again, I really appreciate the responses and I will keep you updated.
  • VickiCO
    VickiCO Member Posts: 917
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    Welcome
    I am a 58 yr old with stage III rectal cancer. This site has been my lifeline. So glad (and sorry) that you found your way here. The folks here not only dispense information, they dispense love and caring. No matter if you are the patient, a family member, caregiver, whatever, there is a place for you here.

    And is Emrose your name? I ask because my daughter's name is Emily Rose...

    Vicki
  • ron50
    ron50 Member Posts: 1,723 Member
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    Hi Emrose,
    Welcome

    Hi Emrose,
    Welcome to you and hubby,sorry you have to be here. First up I am a survivor of stage 3 colon ca 6 of 13 nodes cancerous. Jan 22nd 2009 will be the start of year 12 ca free for me.
    That was with surgery and a year of chemo. i am currently battling kidney disease. I was on 75mg a day of prednisone for nearly five months. I will finish weaning off it on jan15.
    Prednisone is worse than chemo in my opinnion. It plays merry hell with bodily functions.
    It nearly tore my stomach apart with ulcers and now that I'm coming off it I am starting to feel all of the pain it has been masking.
    I suffer constipation and diahorreah on the same day. i wish I'd never heard of prednisone. I have a feeling that once your hubby gets off the pred , things will start to settle down. I hope you have a nice time in Mexico and treatments don't have too much impact on your husband. Best of luck for the future , just remember it can be beaten, Ron.
  • KathiM
    KathiM Member Posts: 8,028 Member
    Options

    Welcome to the gang!
    Hey Emrose,

    I wish I didn't have to say it, but welcome to the gang here... it would be nice if you didn't have to find us but now that you have, pull up a stump and make yourself at home :)

    I'm so sorry you had to go through all that frustration and research for a condition that you now find your honey doesn't have! Well, I'm glad he doesn't have it, but sorry you had to go through all that effort.

    I agree with what Kathi said... both of you, just sit back and realize you are going on a ride... one that has bumps and dead ends, but then picks up and you're on your way again :)

    One of the things I might advise against... and that's doing a lot of research on the internet. I know, I know... us computer nerds are driven to use this computer tool and the internet has lots to look up... but sooo much of it is wrong, or if not wrong exactly, totally out of date. One of the things I have to keep reminding myself... when you go to an "official" looking site and read the statistics... some of them can be overwhelming. BUT... by the time statistics are published, they are already 5 - 10 years out of date. First, studies have to be done and then once all the data for the studies are collected, someone has to analyze that data and come up with statistics that they feel that data represents. Then it goes around to a bunch of colleagues to get their agreement on, and then a report is written up to support these findings. Eventually, the report finds it's way into some journal or publication... and by the time it's found on the internet... well, suffice it to say, even by the time it's published in a journal or publication, it is minimum 5 years out of date.

    Also... doctors live for their stats. They like to have stats to point to to say "This is what's going to happen" or "This is how you are going to feel" and when that doesn't happen, it's amazing but no one writes up those stats... that Patient A, B, and C actually felt great!

    So, you just take it a day at a time and try to avoid doing too much research on the internet. Your best bet is to ask your oncologist questions... and of course, come here because we are the fellow patients who have actually gone through all these various treatments... and are still alive to talk about them :)

    Hugggggs,

    Cheryl

    Cheryl....
    Based on your patient classes, I figure I was Patient D....for difficult...or determined...or deranged...or demented...or demanding...or delicious (THAT was from my beau...ROFL!).

    Hugs, Kathi
  • msccolon
    msccolon Member Posts: 1,917 Member
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    emrose said:

    Cherly, gail, and claudia
    thank you!!! I appreciate the warm welcome and positive energy from all of you!! It's amazing how positive and full of hope everyone is here, it is truly inspiring and I'm glad I'm in your company now.

    I agree about the research - I over did it when he was (mis)diagnosed with crohns and have learned my lesson. I started frantically researching when we first heard it was cancer, but I think I'm passed that point now and can come here if/when needed. Your point about the statistics is very true and one year in medical terms goes along way with all the research they do! I really really appreciate that perspective. The one good article I found was actually written by a cancer survivor about statistics and how they are often misinterpreted and not the dealth sentance some people see them as. I'm ALWAYS looking for the poitive side of things... I don't see any other option.

    As for the chemo- he'll do 12 of the flofox (I think that's it) and will go in for three hours on a Friday afternoon and then take it home with him for the weekend and go in Monday to be disconnected. He'll do that every other week for 6mo. January - June ( just in time for summer) he will try to keep working, which is why he'll do the treatments over the weekend. Hoping that it works out that way, but I know I know :) its not in my control!! I wish I could know exactly how his body will react! your tips are very helpful and I've already started harassing him about drinking water!!

    Again, I really appreciate the responses and I will keep you updated.

    Welcome!
    I am sure you will find a lot of support here, it is a great bunch of semis. Sounds like you two have become well prepared for this battle during the misdiagnosis of Crohn's. There is a reason for everything in God's plan. As far as working during treatment, he may indeed find it easy enough to work, many have. I just want to offer a suggestion. He might find it easier on the days he's connected to the pump, and then "crash" a bit once it's disconnected and the drugs start their exit. If he does, he can just change to get the IV on wednesday, with the pump attached then disconnected on Friday. That would give him the weekend to recover for the next week. I have done chemo a number of different times and I always work through them, but I work at home and am able to work any schedule I need to, along with having a very understanding boss. If he sets his mind to it, he can do anything! Use your trip to Mexico to energize your batteries! I am sure it must be beautiful this time of year! Take care and come back often.
    mary
  • msccolon
    msccolon Member Posts: 1,917 Member
    Options
    KathiM said:

    Welcome to the semi-colons...
    We are the best life-experience tumor board around!!! It's strange, isn't it, how we come to know our enemy so well?

    First thing to remember, in response to your comment about 'I want to fix everything'...well, I'm afraid this is a process, and control is NOT in your hands. One day at a time. Don't let yourself get caught up in trying to control, this is one disease that just has it's own treatment protocol. And the treatment can make him feel pretty bad, unlike crohns where the goal is to control the symptoms.

    You caregivers have it the WORST! You have to stand by and watch...my beau is a physician, so he was REALLY having trouble, considering he was trained to cure people, NOT watch me go through times in my treatment when I looked and felt like HECK!!!!

    Keep in mind what you have already said...there is an end to this. He has a chance for the future that is symptom-free!!!!

    Hugs, Kathi

    I like your new pic!
    I was wondering if we would get a new one once the 24 hours ran out on the mud bath!
    mary
  • KathiM
    KathiM Member Posts: 8,028 Member
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    msccolon said:

    I like your new pic!
    I was wondering if we would get a new one once the 24 hours ran out on the mud bath!
    mary

    Yeah, I was tired of the other one...
    My mom saw this pic and said "Wow! You clean up pretty well!" (Thanks, mom...lol!)

    I like YOUR new pic...this is the new grandbaby, I presume?

    HUgs, Kathi
  • msccolon
    msccolon Member Posts: 1,917 Member
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    KathiM said:

    Yeah, I was tired of the other one...
    My mom saw this pic and said "Wow! You clean up pretty well!" (Thanks, mom...lol!)

    I like YOUR new pic...this is the new grandbaby, I presume?

    HUgs, Kathi

    Her baptism!
    Thanks! I have to show her off whenever possible!
    mary
  • emrose
    emrose Member Posts: 136
    Options
    VickiCO said:

    Welcome
    I am a 58 yr old with stage III rectal cancer. This site has been my lifeline. So glad (and sorry) that you found your way here. The folks here not only dispense information, they dispense love and caring. No matter if you are the patient, a family member, caregiver, whatever, there is a place for you here.

    And is Emrose your name? I ask because my daughter's name is Emily Rose...

    Vicki

    my name
    hi vicki

    My first name is laura. But my middle name is emily and my last name (before I got married) was Rose. I used emrose as a screen name a long time ago when everyhing else was taken and it stuck :)

    Thanks for welcoming me here and introducing yourself. I hope you are doing well!!

    Laura
  • emrose
    emrose Member Posts: 136
    Options
    ron50 said:

    Hi Emrose,
    Welcome

    Hi Emrose,
    Welcome to you and hubby,sorry you have to be here. First up I am a survivor of stage 3 colon ca 6 of 13 nodes cancerous. Jan 22nd 2009 will be the start of year 12 ca free for me.
    That was with surgery and a year of chemo. i am currently battling kidney disease. I was on 75mg a day of prednisone for nearly five months. I will finish weaning off it on jan15.
    Prednisone is worse than chemo in my opinnion. It plays merry hell with bodily functions.
    It nearly tore my stomach apart with ulcers and now that I'm coming off it I am starting to feel all of the pain it has been masking.
    I suffer constipation and diahorreah on the same day. i wish I'd never heard of prednisone. I have a feeling that once your hubby gets off the pred , things will start to settle down. I hope you have a nice time in Mexico and treatments don't have too much impact on your husband. Best of luck for the future , just remember it can be beaten, Ron.

    Prednisone
    thanks for sharing your experience with pred! Worse than chemo? I can see that - it has done some horrible things!!! He's down to 2.5 and were so glad he's almost done! Weaning off right after surgery was not our brightest idea yet, but I think that's why he's been so miserable.

    Your story is VERY inspiring!!! I'm so glad you are 12 years free of cancer. that is so good to hear :)

    sorry to hear about your issues with your kidneys. Sounds like you are good at battling these things though!!!

    Thanks again!
  • emrose
    emrose Member Posts: 136
    Options
    msccolon said:

    Welcome!
    I am sure you will find a lot of support here, it is a great bunch of semis. Sounds like you two have become well prepared for this battle during the misdiagnosis of Crohn's. There is a reason for everything in God's plan. As far as working during treatment, he may indeed find it easy enough to work, many have. I just want to offer a suggestion. He might find it easier on the days he's connected to the pump, and then "crash" a bit once it's disconnected and the drugs start their exit. If he does, he can just change to get the IV on wednesday, with the pump attached then disconnected on Friday. That would give him the weekend to recover for the next week. I have done chemo a number of different times and I always work through them, but I work at home and am able to work any schedule I need to, along with having a very understanding boss. If he sets his mind to it, he can do anything! Use your trip to Mexico to energize your batteries! I am sure it must be beautiful this time of year! Take care and come back often.
    mary

    Great suggestion
    hi Mary

    You are right, being in the middle of dealing with crohns has made the cancer diagnosis MUCH easier than if this came out of nowhere! I mean, he was already having the surgery and was anticipating having to take some serious meds.

    Your advice about when to do the chemo is VERY interesting. I assumed he would feel the worst during the 2 days of treatment, but it sounds like the next two could be the hardest? We will definitely talk about this with our oncologist so THANK YOU! My husband is very stubborn and at this point he feels very stongly that Not working is NOT an option, so we'll see!
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    Options
    emrose said:

    Great suggestion
    hi Mary

    You are right, being in the middle of dealing with crohns has made the cancer diagnosis MUCH easier than if this came out of nowhere! I mean, he was already having the surgery and was anticipating having to take some serious meds.

    Your advice about when to do the chemo is VERY interesting. I assumed he would feel the worst during the 2 days of treatment, but it sounds like the next two could be the hardest? We will definitely talk about this with our oncologist so THANK YOU! My husband is very stubborn and at this point he feels very stongly that Not working is NOT an option, so we'll see!

    Chemo Fatigue
    I had totally forgotten about the chemo fatigue until Mary brought it up. This was my experience as well. While on the Chemo infusion at the Cancer Agency (3 hours) and then on the portable pump (size of a chubby baby bottle), I was full of energy!! For starters, I was given a med which has a long name that I can't remember but it was a steroid. You are only on this for the days you are on chemo and then the day the pump is taken off, that is the last day of that steroid pill. The reason for it is to combat nausea and it did a fine job. It also had the added benefit of totally easing my arthritis in my knees. I could walk easily again, up and down stairs with no problems and I BEGGED my oncologist to let me stay on the steroid 3 days/every two weeks, after the chemo was finished. She refused... apparently it can cause damage in the long term, one of the known things would be to actually cause diabetes. Go figure? But it was my wonder drug and (I know you are all going to want to smack me upside the head for this) but sometimes I have to admit I wouldn't mind going back on the chemo JUST so I can have that steroid and be able to walk with no pain again :D

    Anywho... I digress. After the pump was removed and the steroid stopped, then I would have my crash. Lucky for me, I was never bedridden with fatigue, I just felt lethargic. So I made sure I had naps, but when it was the summer, I still went to the theatre where I was volunteering and working alongside a lot of my friends.

    I do NOT advise anyone to just assume they are going to go to work and be as productive as they were pre-diagnosis. You really will find at times that you are just too tired and it is during those times that you really should rest. Rest is one of the best medicines for your cells that are trying to regenerate after a whole slew of them have been killed off by the chemo (which is what the chemo should be doing... killing all cells so that the good ones can regenerate, the cancer ones can't regenerate once they are killed).

    I think it really helps if one has an understanding of just what the medications are doing, what is their job, why do you feel the way you do when you are on them, and why do you feel the way you do when your body is getting rid of them. If you understand that, then as things happen you know, "Aha! Good work chemo... you must have killed off a bunch this go round. I think I'll just go laze around and watch some tv and give the little critters some quiet time to rejuvenate."

    The other thing to take note of... he may have a day after chemo is over where he just feels yucky!! Not sick, just yucky!!! And if he's getting the Oxipilatin, he may get what we all had... supreme sensitivity to cold. That is totally normal, but still... he should make sure he tells the Onc exactly what effects he is having and how strong. DO NOT BE A MARTYR!! There are meds to correct a lot of these symptoms so one should not have to suffer unneccessarily.

    If he insists on working, then don't try to discourage him. This could be his way of taking control back of his life since it seems to be taken away from us when we are DX'd. I know I couldn't go back to work and concentrate for 8 hours day/5 days week. Chemo brain really played with my ability to concentrate or focus on what was being discussed in meetings. BUT, I refused to sit around and feel sorry for myself either... so I did what I've never been able to do when I was working fulltime. I volunteered more with theatre groups, working during the day answering phones, working in the box office selling tickets, etc. The theatre has been so good for me and soooo supportive!! I had the run of the place and if I did have a "fatigue" day, they always had back up for me, so I never HAD to go in. They all rallied around and said, "Whatever you want to do here, we want you to do it... and when you are having a rough day, we will cover for you (and check up on me and bring me meals, the brats ).

    Ok... I'm the babble queen! But I just wanted to let you know that although life is different while going through chemo treatments... it doesn't mean the regular routines have to come to a standstill. If he feels up to going to work, then encourage him to do so. If he's finding it hard to put one foot in front of another, encourage him to give himself permission to take it easy and remind him of the battle that's going on in his body. The week when he's not on chemo, he'll probably feel perfectly normal and fine :)

    Huggggggs,

    Cheryl
  • emrose
    emrose Member Posts: 136
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    Chemo Fatigue
    I had totally forgotten about the chemo fatigue until Mary brought it up. This was my experience as well. While on the Chemo infusion at the Cancer Agency (3 hours) and then on the portable pump (size of a chubby baby bottle), I was full of energy!! For starters, I was given a med which has a long name that I can't remember but it was a steroid. You are only on this for the days you are on chemo and then the day the pump is taken off, that is the last day of that steroid pill. The reason for it is to combat nausea and it did a fine job. It also had the added benefit of totally easing my arthritis in my knees. I could walk easily again, up and down stairs with no problems and I BEGGED my oncologist to let me stay on the steroid 3 days/every two weeks, after the chemo was finished. She refused... apparently it can cause damage in the long term, one of the known things would be to actually cause diabetes. Go figure? But it was my wonder drug and (I know you are all going to want to smack me upside the head for this) but sometimes I have to admit I wouldn't mind going back on the chemo JUST so I can have that steroid and be able to walk with no pain again :D

    Anywho... I digress. After the pump was removed and the steroid stopped, then I would have my crash. Lucky for me, I was never bedridden with fatigue, I just felt lethargic. So I made sure I had naps, but when it was the summer, I still went to the theatre where I was volunteering and working alongside a lot of my friends.

    I do NOT advise anyone to just assume they are going to go to work and be as productive as they were pre-diagnosis. You really will find at times that you are just too tired and it is during those times that you really should rest. Rest is one of the best medicines for your cells that are trying to regenerate after a whole slew of them have been killed off by the chemo (which is what the chemo should be doing... killing all cells so that the good ones can regenerate, the cancer ones can't regenerate once they are killed).

    I think it really helps if one has an understanding of just what the medications are doing, what is their job, why do you feel the way you do when you are on them, and why do you feel the way you do when your body is getting rid of them. If you understand that, then as things happen you know, "Aha! Good work chemo... you must have killed off a bunch this go round. I think I'll just go laze around and watch some tv and give the little critters some quiet time to rejuvenate."

    The other thing to take note of... he may have a day after chemo is over where he just feels yucky!! Not sick, just yucky!!! And if he's getting the Oxipilatin, he may get what we all had... supreme sensitivity to cold. That is totally normal, but still... he should make sure he tells the Onc exactly what effects he is having and how strong. DO NOT BE A MARTYR!! There are meds to correct a lot of these symptoms so one should not have to suffer unneccessarily.

    If he insists on working, then don't try to discourage him. This could be his way of taking control back of his life since it seems to be taken away from us when we are DX'd. I know I couldn't go back to work and concentrate for 8 hours day/5 days week. Chemo brain really played with my ability to concentrate or focus on what was being discussed in meetings. BUT, I refused to sit around and feel sorry for myself either... so I did what I've never been able to do when I was working fulltime. I volunteered more with theatre groups, working during the day answering phones, working in the box office selling tickets, etc. The theatre has been so good for me and soooo supportive!! I had the run of the place and if I did have a "fatigue" day, they always had back up for me, so I never HAD to go in. They all rallied around and said, "Whatever you want to do here, we want you to do it... and when you are having a rough day, we will cover for you (and check up on me and bring me meals, the brats ).

    Ok... I'm the babble queen! But I just wanted to let you know that although life is different while going through chemo treatments... it doesn't mean the regular routines have to come to a standstill. If he feels up to going to work, then encourage him to do so. If he's finding it hard to put one foot in front of another, encourage him to give himself permission to take it easy and remind him of the battle that's going on in his body. The week when he's not on chemo, he'll probably feel perfectly normal and fine :)

    Huggggggs,

    Cheryl

    very helpful
    hi cheryl

    Thanks so much!!! I talked to my husband about doing the infusion Wednesday thru Friday because he'll probably be hit harder the next couple of days. I think he wants to keep working 1) because he loves his job but 2) because he doesn't want to let this darn disease hold him back! For now, I'm just supporting him and his wishes but I'll also be here if/when he needs to slow down.

    Also, I'll be paying very close attention to how he's feeling and we'll let the dr know right away if he's dealing with a lot of side effects - or any for that matter!

    Thanks so much!!! Your experience is very helpful! Do you, by any chance, know anythin about the fertility issue? Hoping to still start a family sooner than later :-) thought it couldn't hurt to ask!
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    emrose said:

    very helpful
    hi cheryl

    Thanks so much!!! I talked to my husband about doing the infusion Wednesday thru Friday because he'll probably be hit harder the next couple of days. I think he wants to keep working 1) because he loves his job but 2) because he doesn't want to let this darn disease hold him back! For now, I'm just supporting him and his wishes but I'll also be here if/when he needs to slow down.

    Also, I'll be paying very close attention to how he's feeling and we'll let the dr know right away if he's dealing with a lot of side effects - or any for that matter!

    Thanks so much!!! Your experience is very helpful! Do you, by any chance, know anythin about the fertility issue? Hoping to still start a family sooner than later :-) thought it couldn't hurt to ask!

    Keeping tabs
    Good going, Laura!! That's exactly what he needs... a loving spouse who will be there to keep an eye on things but will also let him do what he feels he can do, without making judgments. It's amazing how many people seem to feel they have to tell you what you should and shouldn't be doing. I don't know how many people told me, "You are crazy... you should not be down at the theatre, outside, amongst all those people... you don't know what germs they may have." So, what do they think I should do, hole myself up in my apartment for 8 months and not see anyone or do anything?? Because I was on chemo for 8 months in those 2 week cycles... and as we are all aware, the immune system really takes a beating from the chemo. But, in my case, I was doing something I loved to do, with friends who I loved and who supported me 100%... so I thrived in that environment. I think the benefits of keeping myself busy doing something I loved far outweighed the risks of what I might have been exposed to. Of course, I do have the "luxury"(?) of having long term disability insurance, so it's not like I have to work. My job nowadays is to focus on my health, not on what others think I should be doing.

    Now, as for the fertility issue. That is not an issue with me since I had an emergency hysterectomy 8 years ago, so I have never asked that question or paid too much attention to it. I think that should be at the top of your questions to ask the oncologist and find out what can/should be done if this is a problem... before the chemo gets started.

    Now I know that you both are going to be worried/nervous until he starts his chemo and it's human nature to expect the worst. But, I think you will find the first cycles go fairly easily. Chemo is an "accumulative" process, as is radiation. By that I mean that every 2 weeks you are adding more chemo to your system. That one week "rest" between chemo sessions is not enough time for the chemo to completely leave your body, so the next session you are adding chemo on top of what is left from the previous session... and so on. By the end of your 12 cycles, the fatigue/tireds/lethargy is going to be much more noticeable than the first couple of sessions. But if you go into this knowing that, then it is easier to handle. For me, as long as I knew what to expect, I could deal with it pretty easily. But if something came along that I was not expecting, then I would get anxious... until it was explained to me that this was a common occurence.

    But hey, you both already have an advantage... you found this forum BEFORE hubby starts his chemo. So you know you can come here and ask if anyone else has experienced whatever hubby is feeling. Chances are, you will get a whole bunch of people all saying, "No problem, that's totally normal" :)

    Huggggs,

    Cheryl
  • lisa42
    lisa42 Member Posts: 3,625 Member
    Options
    Hi,
    Just a thought on

    Hi,
    Just a thought on wanting to try for a baby... could it be possible for you to even possibly get pregnant in the next few weeks before your hubby starts chemo? Another thought is maybe have your husband make a deposit of sperm (not sure exactly how that works or where such things are stored, but I know I've heard of this being done so that you could be implanted with his sperm). I don't know if men's fertility is equally affected, but I myself became sterile right away. I was 41 years old and had my period the same day as my first chemo treatment- well that was the last period I ever had (it's now been a year and a half). I was told the oxaliplatin definitely affects fertility. I'm not positive, however, if that's the same for men. I bet, in spite of what the oncologist said, that there is more information to be found about this topic. I'd google it and definitely call around and ask this question of other cancer centers. Best wishes to you and your husband. He can and will win this fight!!
    Best wishes and blessings to you both-
    Lisa