The Colon Club

I've had chemo, then surgery, then more chemo, etc. This is the first time I got a break after being on chemo for a full year....and no surgery planned. I know I've only missed one chemo treatment, but I'm so run down and exhausted. I thought I'd feel much better. Any one have any insight or personal experience about this? My non-medical brain tells me my cells are so happy they can multiply without having the chemo attacking them, that they are going into overdrive, making me tired. To counter this, I've tried to up my protein - but I don't know if any of this makes sense. I know, they say it takes awhile to bounce back after chemo, and I'm probably expecting too much at this point. Is there such a thing as chemo withdrawal?

I'm a year+ out of treatment, and allegedly NED, and am still struggling with a lot of fatigue (as well as muscle pain which is probably linked to the carbo-taxol I did the last time around). It's just my guess, but I'm beginning to think that the side-effects from chemo are far longer lasting than most our docs would have us believe. Those ads I've seen showing a happy woman running up a hill after chemo may possibly be a wee bit of marketing hype. I'm hoping that more time will bring more healing, but it does seem to be a painfully slow process. Ann

Oh, and I imagine you've had all your blood work done, make sure everything's looking ok in that regard? I did have a CBC, and vitamins B and D checked recently, see if there were any deficiencies that might be making me feel cruddy, but everything was normal. No easy fix there unfortunately!

I am one year out from ending Folfox and my blood levels have not bounced back. The NP told me I have a compromised immune system. She suggest Vit.B Complex added to my Vit. D and Calcuim. When I finished a year ago I was so happy that I hiked with my son in Arizona and felt so energetic. Just glad to be alive and done with chemo. Now I take it easy because of below normal blood levels. Hoping this will improve. Has anyone else had low WBC after one year finishing Folfox?
NBrandt

If all of your lab work is OK, I would be suspicious of a kind of PTSD type of thing. Sometimes it seems that when we are in crisis mode and our stress levels are up, we can appear to have amazing energy. But then when the stress lets up a little bit we can crash and all of the exhaustion that we SHOULD have been experiencing during the crisis catches up with us and we are wiped out. Seems to be my experience anyhow.

I think it just takes time to build your strength. I finished chemo march 21. I got my chemo every 3 weeks. Around the 3 week mark, I got extremely tired just like I did after I got chemo. I joked that my body didn't know we didn't get chemo that week. Now I'm about 7 weeks out and I am just starting to feel stronger. I still get tired though. Last friday I put my son on the bus went back to bed. I slept until 1pm. I hadn't done anything strenous the day before, I guess I just needed sleep. I try to listen to my body and rest when I need to. It is disapointing to finish chemo and realize that you still feel like crap for awhile. It will get better. Hang in there.

I think your experience is shared by many Ashlee. A whole year of chemo, wow! I finished Folfox in January, 12 courses at the full dose. Did great during the treatment. But now? Aside from severe neuropathy which kicked in after the treatment was finished I feel tired, aches and pains, a little depressed and mentally at a loose end. During chemo life revolves around the schedule, the symptoms. You prepare yourself, deal with the challenges and feel somewhat secure that if there are any cancer cells left they are being whacked. And then it all stops, normal life reasserts itself and you wait and wait and worry about the next scan. And every little ache or pain, every change in your bowels, every time you feel tired for no obvious reason, every time you don't feel like eating you wonder.
Chemo is an all out assault on your body. Every tissues that grows, every cell that divides is attacked, over and over again, for 6 months or more. It takes time to recover, I'm thinking at least a year. And I suspect I'll never be quite the same again. My advice is rest and sleep when you need to, sleep is such a powerful restorative, try to relax and enjoy the fact that you're still here and cut yourself some slack. The Skifletches and Brownbaggers on this site are exceptional individuals, but we cannot all be like that. Good luck!

Ashlee,
That was exactly what I thought when chemo was done! Gosh, I wish I had the kind of medical team that should have or could have told me that it takes a long time to ditch the fatigue and other side effects.

I was so depressed because I expected to feel the same way I did on off weeks when I still had steriods in me and could push it. But, it did take at least a year to for the bouts with fatigue to go away and other side effects kicked in too.

I developed anemia a year after treatment and still use iron to keep me in balance. So please learn from me to relax and take your naps and do the things you could not do while on chemo.

How's your blood work? Low normal ranges for me are more serious than others and I had to stand on my head to get the medical team listen to me. I usually stand on my head when people tell me it's all in my head!!

Hi Ashlee:

I really like what everyone said (not so sure about that hormonal thing though)--anyway, I remember a long time ago one of the "brain-trust" saying that it took TWICE as long as one has been on chemo to fully recover from it. As you know, because we are "regular talkers" on the phone, I am tired all the time. It is a very rare day that I don't take a nap...even with no apparent sign of cancer. I have been off of chemo for 14 months...lots of things ARE better now, I am only nauseated every other day, my chemo brain has improved a lot, and let's see, what else.....OH! that's it! NOTHING. I believe chemo did a permanent number on me, but, what the heck, I'm cancer-free (as I strongly believe you are) and post-chemo life is what it is, and beats the h*ll out of the alternative.

I love how LOHIDOC explained the biology of it. Chemo sucks, that's for sure, but when one considers what it does, it's pretty awesome. You have gotten a lot of chemo, girl, while working full time in an incredibly stressful job, and doing it all on your own. Wouldn't it be so weird if you felt great already? Really, you've had so much chemo a lesser person would have crumbled and blown away by now (I know, there are a couple of others [Rick] who have gotten as much of this horrible poison) but really!

I hope and pray that you will be very, very patient with yourself. Get lots of rest. Eat frozen yogurt. Watch fun stuff on TV. Think about your next trip to Holland and plan it down to the inch! Think of getting to meet Cheesehead in person, you lucky duck. Dream and dream of a cancer-free future. Walk a little in your beloved park. GET A NEW CAT, PERHAPS? Then rest, and let your poor body recover. Ashlee, when you are resting, you are NOT doing nothing! Then, when you're not sure what you want to do, take a nap.

Your body has a lot of healing to do. Let's just assume (AT LEAST until the next scan...then the next...and the next...and the next) that you have this sucker beat! Live your life with great intentionality. Cancer has gotten more than enough out of you. Now, give yourself a break, plan for a wonderful future, then...GO TAKE A NAP!

So much love to you,

Bev

JBinNJ wrote:I read the hormonal thing on the Mayo clinic site. I heard they were reputable. Maybe they were wrong.

No JB, much more likely that I'm wrong (often am) or that I don't understand the context. Thanks for the reference, I'm going to go check it out.

Oh! That reminds me of something for all the newbies. The Mayo Clinic is an incredibly prestigious health care facility, but I remember when I was just starting on chemo and went to their website to read about chemo side effects. WARNING: Don't do it!!

One of the chemo drugs (can't remember which one) has listed as a "frequent side effect" (drum roll here) SUDDEN CARDIAC DEATH! Well, of course this scared me spitless. I ran to the board, screaming and totally flipping out. We wound up having a lengthy discussion, basically about the irresponsibility of them posting that nonsense on their website. I e-mailed them (don't know if they ever changed it).

So, I don't know actually, JB, maybe they WERE wrong?

I'll go look.

Bev

Thanks to those who shared their personal experiences with me. In checking off the list - my blood work is very good. PTSD - I'm good there too. From hearing your comments, I realize I'm just being too hard on myself. When I first got cancer it took me months to learn that I had to find a new normal. Now with a 2 month chemo break, I so wanted to jump back into my old normal. I went to the gym, took my walks, etc. But, I'm not like our supermen here - exercise just tuckers me out. So guess I'll have to try to ease into the next few weeks. I just have this deep fear that this isn't going to be a lengthy chemo break and I want to get the most out of it. As always, your support is awesome and got me through another day.
-Ashlee

Even when you are feeling OK, you're not really. After 3 months off chemo ( early May) I had a small vacation on Bali , was feeling fairly good but found I tired very quickly. In early November I headed off to China to hike Tiger Leaping Gorge. I had been training beforehand but after that first day I was absolutely exhausted. Fortunately the second day was shorter and easier but I knew that I had pushed a bit too far. Recovery takes time.