"Second wave" ????? of exhaustion....

[KellyA]

I was just wondering if anyone else experienced difficulties AFTER chemo and radiation were completed. I felt pretty good for the first few months (finished chemo in Nov., rads in Jan), but seem to be VERY sluggish and feeling like a nap everyday after lunch. Have also been in an overall "funk" and finding it hard to get motivated. Everything just looks so overwhelming right now and I get easily turned off (definitely not like me)from projects and chores. My dear friend said she got a "second wave" of exhaustion after chemo. Anyone experienced this?

Love, Kelly

[Becky]

Dear Kelly


I started Herceptin 4 months after my last Taxol (due to the announcement of the success of the trial and that all Her2+ women who were 6 months or less from their last chemo treatment start Herceptin). I started in June and in November, my husband and I decided to sell our house. I couldn't deal with it and he had to do all the work (to clean up and get everything into a storage facility - all the stuff you have to do to get your house on the market). I went to sleep every night at 9am at the latest. After everything was done in general and the house was on the market we had someone come who "announced" they were coming back with their sister that weekend. I mustered the energy to oil all the kitchen cabinets and do some extra work in the finished basement. Put candles etc in the bathrooms. Thank goodness she bought the house because with the kids, I don't know if I could have kept that house in tip top shape to sell it I was so tired all the time (and I was walking etc to try to get some energy - not even running again yet which I can do now).

So, for me - I did hit a second fatigue period. I don't know if its because everything catches up with you again or if it is the Herceptin.

I do feel better off the Herceptin (it has been 7 months now) and I can pace and breath better during my runs (couldn't do that well before so I walked far more often). Just sleep or nap if you can. I always figure if you are tired, you need to rest.

Have a nice Easter.

[Alice]

I had a very simmilar experiance. I even went back to work in a physicaly demanding field and was feeling pretty good. Then it just seemed like I was living in a 90 year old body all of a sudden. I went to my onc the other day and I asked her if I was just expecting too much. She put it in a nutshell and said because of my age at diagnosis and the type of treatment that what most women have 5 to 7 years to get used to it was done in 1. Even without the dammage that chemo and radiation ,its kind of like putting your car in reverse while going 60 on the freeway. She said that it probably just cought up with me.

[Jean]

Dear Kelly,

I will get every now and then the need to just lay down and rest for
20 min. or so. I used to fight it thinking I was done with chemo (sept)
I will finish my year of herceptin shortly. Now when I need to rest
I just don't fight it...and I lay down and take the short nap or rest
for longer if I need to do so. Remember our bodies have been fighting
hard during chemo....and our bodies are getting back to normal
and it all takes time.

Best of luck!
Happy Easter!
Jean

[Grace]

Kelly,

Our dates are the same, and I have absolutely no energy to clean, to walk, to cook, whatever. But it's a very different feeling from that experienced during chemo, and later radiation, when I was just very very tired. Now, it's a lack of incentive to do anything, and I don't. Anyway, I seem to be adjusting without guilt. If a friend wants to visit, I either say fine, you bring lunch and please excuse the mess, or I decline, using my lack of energy as an excuse. I have a great husband, who cooks all our meals and does the shopping, and even the laundry. I've decided, it will pass when I'm off herceptin and I don't let it get me down.

[Catherine]

Kelly,

Listen to your body. I have devised alot of ways to find time to rest during the day. I finished Radiation Dec 7, went on vacation Dec 9. While on vacation, I was in my pjs by 7pm and stayed in them til 1000am the next day. I think radiation and everything makes you really tired. We think once we our done with the crummie chemo, we will be back on our feet again. Do not feel guilty, do not push yourself. Put in place as many protections as you can for yourself. Get a housekeeper or if you have one, up the frequency. Let other people pick you up if you are going out together. Prepare meals you can warm up. Watch your calendar and do not overbook yourself. You and your family are probably expecting too much from you. Slow down and get your rest. The more rest you have the more you will be "in the mood" to tackle a project. I can't remember if you work, but if you can, only work part time.

I will be a one year survivor on April 18. I feel quite good, but still tire easily. Especially when I overdo. I selfishly take care of my body first ( a full time job). Rest, lotion up the radiated areas, walk for 20-30minutes, do my arm exercises and stretches. And I am still on an anitdepressant. We go out on the weekends, I work part time and am motivated to do a lot of different projects. My house is more organized than it ever has been. But my day bed is still in the living room and I am usually on it by 8pm every night.

I hope I do not sound obnoxious. None of the above is probably very easy if you have children. Anyway, get as much rest as you can. We are in this for the long haul and we need our strength.

Happy Easter, Catherine

[KellyA]

Thanks guys, I feel alot better. I guess I just wasn't expecting to feel like this so long after treatment. Seriously, the house looks like a tornado hit, we are digging through the wash every am to find the clothes to wash for that day,and if my hubby didin't grocery shop for me, we wouldn't have food in the house. I feel very guilty laying around so much when there is so much to do. This is really bad- I shouldn't be sharing this- but our bedroom is half yellow half green and has been for about 8 months. Mustering up the energy to get out all of the paint supplies and knock it out is just too much. And I LOVE (or LOVED) to do house projects.

I never even thought about the Herceptin making me tired. OOOh, something else I can blame on the Herceptin (along with the aches and pains and weight gain :-) Only six more months to go.........

Thanks again- I hope everyone has a blessed and Happy Easter. Chocolate makes EVERYTHING better...... :-)

Love, Kelly

[Mary Anne in TX]

Hi Kelly! I'm finding that not only does the Herceptin make me tired, I have a mental change that occurs each time I go from one treatment to another! I had a real depressed and no energy time when I stopped radiation. I had worried about radiation (not sure why) and found it to be easy and almost good for my mind because I was doing something everyday! But when it was over, all I had was the herceptin every three weeks. I had to learn to "be" the person doing herceptin only. I think I feel guilty sometimes because so many have had such difficult times with the treatments and some have had such battles with getting the treatment they need. Anyway, I think it's an adjustment each time we have a change in our treatment - good or not so good! I'm finding that the mental battle is far more difficult than the physical one. Having shingles these past few weeks has given me lots of thinking time (not going out much - so don't give chicken pox to little kids). I've learned how to do the physical battles, but it's the mental battles that are still a challenge. Now that I know it is going to happen each time there's a change, I kinda prepare for it. I get things cleaned up, pre-cook food, and give myself permission to just be a "mush brain" for a while. Seems like my mind kicks in sooner now and my ability to make decisions is getting so much better. I've learned that stress and pressure slow me down, so I work on not adding to it by trying to go faster.

I think what each of us does to fight the disease and then sharing it with each other is just great. Or at least it has so helped me to pass from experience to experience with more ease and sanity. Thanks for you honesty. ma

[juanita]

I finished treatments last June and after a couple of months I really felt like I had all of my old energy back. But I do still have days, though few and far between that I just feel like I am wiped out like I did during treatments. I stay in bed watching tv or reading, and then I'm okay again for awhile. Things do get better!

[MJo]

This is a very interesting post. I finished herceptin (9 months) in mid November. I expected to be energetic by now, but I'm not. I work all week but after work I'm beat and do nothing. Thank goodness I don't have to care for a family and a house after work. Weekends I can do my shopping and some cleaning, but it wipes me out. I walk five miles a week in a good week. That tires me out too. I expected better health and I worry that maybe it's my heart or maybe I have a recurrence, etc. Maybe I am just expecting too much of myself. There really isn't good guidance out there about what to expect after you finish all your treatment. I also have weight issues. I started taking Lexapro during treatment, which was a good thing, but I think that might be contributing to my difficulty losing 40 extra treatment pounds. The cancer center where I go has a weight loss program for survivors. I'm going to join when I get back from vacation.

[hutchibk]

Kelly - I felt the exact same things you described after my first cycle through chemo at initial diagnosis. About a month after chemo ended, I started to feel great and got most of my energy back. That lasted for about 4-5 months. I was also on an emotional high. Then I unexpectedly started to slip quickly back into overwhelming fatigue, more than I ever had during chemo. And life felt confusing and every task became more and more overwhelming. I didn't feel at all plugged in to my life. It was fairly surreal. Motivation was out the window. That all lasted for about another 5 months... I have gone to counseling for years and my therapist helped me through much of it, but the physical fatigue aspect was the lingering issue that made it harder to navigate through the others... until it finally lifted little by little.

I don't think it is unusual at all... give yourself some room to just be a slug. You've been through a lot. Your mind and body need some time to recover. Just make sure you are eating really consciously and as healthy as possible. Nourish yourself right now. Get massages, facials. It should lift, but give it some time and don't beat yourself up.