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Old 07-16-2006, 02:04 PM   #1
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How many Stage 3+ or 4's have experienced...

A fatigue so great that some days you can't move from bed? I'ts not depression, rather it's a post chemo/post radiation feeling where your mind tells you to move, but your body just CAN'T function. I am interested in how many other Stage 3+'s or 4's have experienced this. Regardless of the significant chronic pain that I experience day in day out, this is something MORE. It's almost like if I do a "little" more for one or two days, or experience greater pain due to the weather, or feel crappy for a couple days, I am snowed the third.

I have spoken with others in a limited capacity from other forums who have experienced a phenomenon very similar to mine, and have described to me the SAME symptoms. I am just curious to see if any of you have experienced anything similar. We are so quick to talk about the good in our recovery (which is VERY important)... the fact that we are in remission, etc. And don't get me wrong, I too am VERY grateful, but it's just that this is a MAJOR change in my life (as if I haven't experienced enough side effects!! Most of you know what I have faced beyond the diagnosis and treatment of cancer) that SIGNIFICANTLY effects "life after cancer." And I guess I am checking with all of you to share your "life after cancer," and for you to honestly tell me if you or your loved one have experienced similarities... I trust everyone here so much, and really do think of you all as a family. I have changed my post a little after reading Ktee's response to help clarify and see if I have now better explained myself. Any input is greatly appreciated. Ktee, as always, thanks for your comments, and yes, you share exactly what I am looking for!!

Thank you all for your input,
CancerDad
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Last edited by CancerDad; 07-16-2006 at 06:43 PM.

 
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Old 07-16-2006, 03:25 PM   #2
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Re: How many Stage 3+ or 4's have experienced...

hello all........... a subdued ktee here due to effects of dropping out of World Cup (bossan ....... because we are english we just shrug it off but really we are soooooo annoyed !!! )

Cdad ...... long time no speakie...... hope all is well. husband due fore more tests end of august.

in response to your question....... husband would say no but i would say yes. the last year he has slowed down. he has rarely ever taken time off from work and in fact worked right up to the day before being admitted for surgery. Always shrugged off colds and man-flu and carried on as normal.

I think that immediately post treatment which was 13 months or so after diagnosis then his mind went into the "nothing will defeat me" mode and he seemed as healthy as i have ever known him. But for the past year i have noticed that he suffers set backs to his normal routine if for example he has a cold, a bout of diarhea, does to much at the gym, or eats the wrong food, or does too much physical stuff. And this then takes longer and longer to get back to somewhere near normal.

Is this what you mean. I still worry that he sometimes looks suddenly gaunt but then seems to recover. It is now 3 years and over since diagnosis and i know that he has finally accepted his physical limitations. It makes him no less a man and we love him even more.


As ever, regard to all
ktee

 
Old 07-17-2006, 05:13 AM   #3
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Re: How many Stage 3+ or 4's have experienced...

Hi Cancer Dad and Ktee, and, of course, others. CancerDad, I am sorry to hear of your fatigue some days, but you have really had a tougher time than many, so it is not really surprising. Hopefully, with time and because you are young, things will get better. I can imagine how discouraging it must be. My husband is coming up to his three year post dx mark and is doing very well, but he too, does not have the energy he used to have. He was an avid tennis player and used to play for hours each weekend. There is no way he could do that now. His work takes all the energy he can give, so I try to make sure he has nothing else to do apart from worry about his job! If I could take away the worry, I would do that too! Unfortunately, we do have a concern right now as I may have lymphoma and/or leukemia. I feel so bad presenting him with this possibility when he has done so well himself. I am hoping the doctor is wrong and will know the results this week. I am feeling very well, apart from having surgery to take several mesenteric lymph node biopsies last week. If it turns out to be any form of malignancy, I hope I can be as brave as my husband has been....I certainly have an excellent role model! Man, life can really challenge you sometimes!
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Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
Old 07-17-2006, 05:52 AM   #4
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Re: How many Stage 3+ or 4's have experienced...

Quote:
Originally Posted by alison hamilton
Hi Cancer Dad and Ktee, and, of course, others. CancerDad, I am sorry to hear of your fatigue some days, but you have really had a tougher time than many, so it is not really surprising. Hopefully, with time and because you are young, things will get better. I can imagine how discouraging it must be. My husband is coming up to his three year post dx mark and is doing very well, but he too, does not have the energy he used to have. He was an avid tennis player and used to play for hours each weekend. There is no way he could do that now. His work takes all the energy he can give, so I try to make sure he has nothing else to do apart from worry about his job! If I could take away the worry, I would do that too! Unfortunately, we do have a concern right now as I may have lymphoma and/or leukemia. I feel so bad presenting him with this possibility when he has done so well himself. I am hoping the doctor is wrong and will know the results this week. I am feeling very well, apart from having surgery to take several mesenteric lymph node biopsies last week. If it turns out to be any form of malignancy, I hope I can be as brave as my husband has been....I certainly have an excellent role model! Man, life can really challenge you sometimes!
Alison:

I am SO SORRY that you now have this latest obstacle to contend with. I've no doubt that you will beat this should it turn out to be what you fear. It is amazing how life sends us some REAL challenges some times. But, I do hope you are letting your husband in on your feelings and what you are going through. I am SURE he will want to be there for you as you were for him; for a couple to deal with this once is difficult, twice is really difficult and I think the more the two of you talk, the closer you two can remain to get through anything.

PLEASE keep us posted. You KNOW that our hearts and prayers are with you and your husband.

Much love and STRENGTH,
CancerDad
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Old 07-17-2006, 06:13 AM   #5
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Re: How many Stage 3+ or 4's have experienced...

Thanks for that lovely response CancerDad! It is a good thing I looked after my husband well when he was sick, isn't it??!! He has been wonderful through this. It is funny really. Last week, I was shuffling around the hospital like a little, bent old lady on the arm of my handsome, healthy husband in his suit and tie. Then I had to remember that three years ago, I was the one looking good and he was shuffling!!
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Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.

 
Old 07-17-2006, 12:23 PM   #6
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Re: How many Stage 3+ or 4's have experienced...

Hi CDad! Hope you know that I'm still here looking over your shoulder and exercising a few wings on your behalf...

My sister has told me that my brother-in-law (diagnosed Stage IV rectal cancer w/< 2 months to live almost 14 months ago) has MEGA fatique.
His is clearly tied to his chemo. He has maybe a week or so of more or less normal energy - but he can be in bed for 12+ hours during certain points in his chemo cycle.
The doctors actually put a "cap" on how long to let him sleep/stay in bed.

Any questions you have I'd be glad to relay to my sister - they both know that i post here and are glad to help whenever they can - they're just technologically challenged is all!
BIG hugs always,
Ruthie

Last edited by Ruth6:11; 07-17-2006 at 12:24 PM.

 
Old 07-17-2006, 01:28 PM   #7
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Re: How many Stage 3+ or 4's have experienced...

Hi all, Allison, my heart goes out to you, I share CD's sentiments, after all you been through, the tables have turned but you know what you're dealing with. You can do it.

K-tee, I am still in ,my futbol fantasy world, as you know (reading previous posts) I predicted the winner, and was right....... finally. I've had some issues with chemo but damn....these games were a wonderful distraction, which leads me to...

CD, I've been going through the same deal, profound fatigue as well as a few other side effects from my Campostar/Avastin/5FU routine. I'm in a 4 week on, 2 week off cycle. I get 2 rounds of this then the CT scan.

I had a bad week this week (round 3) with fatigue, nausea and few other things that lasted all week. I called the nurse at oncology and told her I can't come in for round 4, I'm afraid I'll get worse and I'm still not over last week's deal. She said no one has taken it as long as I have without an extended break, which I haven't had. I'm not in remission but I seem to be heading there, so far. I told her I feel so bad that I can't do squat, other than going out to eat and sucking down a few beers. Point is, I am so freakin drained I'm just a blob in the house, which worked out just fine during World Cup

The bad thing about the fatigue and other side effects is the toll it takes on my psyche...I feel like I'm dying sometimes. Then I get away from it for a week or two and I feel better, but its still in there...

more ranting later my brotha! I'm totally with ya. I'm still juggling the risk of not taking the meds because of all the harm it does, since it has been working. Then again, if it stops working, I don't want to feel like hell with the time I might have....

 
Old 07-18-2006, 08:34 AM   #8
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Re: How many Stage 3+ or 4's have experienced...

Boss:
I feel for you man. It sounds as though they have you on a variation of the Saltz regimen, but with the addition of Avastin. Same regimen I did minus the Avastin. Most places have done away with this regimen because nobody can ever complete it, and it has literally killed some people. Good news though it's a VERY AGGRESSIVE regimen and kills off many of those bad cells...good cells too, but most importantly, nasty cancer cells. I wish you continued success. Get some rest and good luck with the CT Scan. --CD

Ruthie:
As always, thank you-- for flying there by my shoulder watching over me. I hope you too are doing well.

Warm Regards,
CD
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Old 07-18-2006, 10:55 AM   #9
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Re: How many Stage 3+ or 4's have experienced...

Hi CD,

Just wanted to let you know I am thinking of you. My dh is so tired most of the time. He does work and since it is 105 here today and has been in the 100s for most of July I just don't know how he does it. During the 6 months he was off of chemo he never regained all of his strength back and felt tired most of the time. AND there were times when he literally couldn't get out of bed. He is one of the lucky ones in that doesn't have the neuropthy (?) that a lot of you have and we are so thankful of that. This infusion pump they implanted keeps him from having too many side effects at this time, so that is wonderful if it is killing out the cancer that is left in his liver. We should find out in 3 months. Anyway, take care and know that you are very important to everyone here.

 
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