herceptin and fatigue

kathy1962 · April 2008

kathy1962 · April 2008

I would just like to know if anybody out there feels like a truck ran them over for about two weeks after herceptin treatment. (I'm on the once every three week treatment). I was told that I would breeze right through it. I feel extremely fatigued and achy. I have been on this regiment since December. Its almost like its getting worse instead of better. Any insights?

kcq · April 2008

Hi Kathy-

I dont know if you just finished chemo to or what, but I started my Herceptin with my Taxol. I was very fatigued, but think that it was from having both Taxol and Herceptin. I am seven months into my Herceptin and I feel great! I get triple doses every three weeks. I sleep the entire day on the day of my treatment. I believe it is from the Benedryl that they give me, plus, I take an ativan that day too. So, hopefully, your energy will start picking up some. Good luck to you.

swimangel72 · April 2008

Kathy I'm on a once-every-two-week tx of Herceptin with Navelbine. I had my first infusion last Wednesday. Other than a bit of sleepiness the next day (a nap cured it) and a bit of diarrhea I've been perfectly fine. What other drugs are you taking now? I also imagine that the individual dose level would have a different effect on different people - since I go every two weeks, I'm probably getting a lighter dose than you get, so it's hard to compare. I hope you'll feel better soon Kathy - be sure to call your onc if you don't!

Bmarie · April 2008

Hi, Kathy:

I've been on Herceptin since October '07, every 3 weeks with no fatigue nor achiness, even with the initial dose. I think it helps to get out and walk as much as possible. My goal is everyday, but some days I just don't get out there. Now, I am doing 15 days of twice daily radiation. I have been a little tired after my afternoon session but I think it's just the stress. Only problem now is I don't think the Herceptin has helped much....just had a mastectomy for a recurrence. Soooo, on to Herceptin/Gemzar very soon.

Good Luck! Hope it gets better with the Herceptin.

~Barb

frostyiris · April 2008

Well, I have been on Herceptin weekly for now 48 weeks and have four to go (YEA!). I've been tired the entire time, but the last 10 or so treatments have left me so fatigued I could barely make it home to bed.

However, I had a treatment this morning and while I'm tired, I'm not totally wiped out like I've been being.

My oncologist keeps saying he doesn't think it's the Herceptin (I'm on Arimidex also) - however, the treatment days were the worse. And, I realize the doctors either don't know or don't think we know sometimes.

Nonetheless, I'll be REALLY glad to have these finished and over with.

Sassa · April 2008

I finished by year of herceptin on 2/19/08. I would have period s where I felt tired during the day.

The day I had the herceptin infused I would sleep like a rock for 10 hours that night.

Over the next two weeks, I would sleep 9 hours a night.

During the third week I would gradually go back to 6 -7 hours a night.

Now that I am off the herceptin, I sleep 6-7 hours a night.

JenD · April 2008

I'm with you on this one. I've been on herceptin since 5/2006 get it every 3 weeks and it seems to be getting harder. After the second week I'm feeling better, but, then it's time for another dose!

Denny123 · May 2008

I have been on Herceptin for 4 1/2 years and I do feel tired, but not horribly so. Thank goodness, as I will be on it for life.....I think it is more old-age..... )

Denise

bluewillow · May 2008

Hi everyone,

Kathy, I have exactly the same experience with Herceptin as you do. I am also on the every-three-weeks regimen (my year of H ends Nov. 2008), and the week before my next treatment, I am full of energy. Although I am not dog-tired like some people experience, I can definitely feel that "dragging" feeling, usually starting 2-3 days after treatment. My husband says I sound like I have a cold those 2-3 days too, but that's the limit to the side effects for me. I hope this helps you just knowing you are not alone. (My last Taxol on Jan. 28, Herceptin alone since then)

Take care and remember, we will make it through this!! Smile Smile Smile

Mary Jo

Sassa · May 2008

Another interesting mile marker.

It has now been 2 months and 3 weeks since my last herceptin treatment. By now, all the herceptin should be out of my body and whatever herceptin damage repairs the body needed to do must be completed.

Starting the beginning of this week, I noticed I have a lot more energy.

I thought the way I felt during the last year of herceptin treatment (mainly the third week before infusion and the 2 months following the end of treatment), was my new normal due to aging. I guess it was due to the herceptin.

goops · May 2008

I have been on Herceptin since Sept of last year, I do feel tired the week after I have it and after the last two treatments I was throwing up flem. I also have gotten water retention after some of the treatments which has made me achy for a few days.

oldcat46 · May 2008

Kathy,

I'm sorry you're having such fatigue with Herceptin. I haven't noticed any side effects with the drug. I am pretty tired most days but I just finished radiation 2 wks ago and figured that might be the culprit. I get Herceptin every week and haven't noticed anything out of the ordinary. My onc has me get an echo every 3 mon to be sure there's no heart damage. So far, so good.

Also, I've read on some of the threads that some women get nail damage (blackening and lifting up of the nail) from Herceptin. I haven't had that either -- have any of you?

Happy Mother's Day to all moms...

swimangel72 · May 2008

I had my second infusion of Herceptin and Navelbine last Wednesday - and I was VERY tired afterwards for the rest of the day and the following day too. I also had diarrhea both days - but by the 3rd day I felt nearly normal. I hope the side-effects aren't cumulative though! I'll find out more next week after my third infusion. Undecided

jm86 · May 2008

Hi to all

It's so reassuring to read your comments on Herceptin. I've just restarted it (2nd infusion yesterday) after being on it for a year that ended Jan. 07. I have to have benedryl and hyrocortisone with it as I do get a reaction initially. I was extremely sleepy yesterday but couldn't sleep all night last night. Today, I've already had a bit of diarrhea and a little queasiness in my stomach. I'm hoping that is all. Swimangel, it's encouraging that you are a little ahead of me and finding it easy enough to take. Good luck to all, jm

Caya · May 2008

I just completed my year of every 3 week Herceptin, and I found the first week after the infusion very tiring, then better the 2nd and 3rd weeks. However I did notice my last 3 or 4 infusions I was tired most of the 3 weeks, and I heard this from other women as well.

juliejfsrj · August 2008

I have had eleven treatments, and find that the tiredness is getting worse. I fall into such a deep sleep even if I just lie down to read, that my daughter gets scared. I also seem to get really pale skin and black circles for about five days. I usually get diarrhea, runny nose, and fatigue only. When I first started, I had huge black bruises on my arms and legs. I was taking celebrex at thattime also. I have bought vivarin to help me stay perky. I used to drink chai tea, but now I drink strong coffee all day, plus vivarin when I have a long workday or social event.

bluewillow · August 2008

I should finish my Herceptin in November and since I last posted here in May, I have really noticed a huge increase in the tiredness and fatigue. I do the deep sleep thing too. Normally, even if I feel tired, I can push myself to do more, but not lately-- there's no push left in me. And my energy is gone by noon about every day and like Juliesmithson, I resort to strong caffeine to perk me up. And I don't get the burst of energy right before my next tx either. The 20 pounds I gained during chemo isn't helping any, but I'm just too tired to work out-- so not like me! Frown I'm stuck in a rut, feeling guilty about not losing weight and working out, and that drains my energy, too.

It's good to know that most ladies on the year-long Herceptin do regain energy after treatment ends.

Take care, everyone!

Mary Jo

Sassa · August 2008

I finished herceptin in the middle of February 2008. I also noticed that I seemed to be more tired for a longer period of time (two weeks) after the infusion as I got further into my year of treatment.

It wasn't until my energy started to return at the beginning of May that I realized I was fatigued all the time (hey- herceptin is such a cakewalk after chemo that I thought I felt good). By the middle of May, I felt like the energizer bunny.

Herceptin has a long half life in the body and when you are on a three week dosing cycle, you still have an effective dose in your body at the time of the next infusion. I think it takes at least six weeks for the drug in the body to drop to a point where one's body can start to rebound from the effects.

Another Mary Jo

Whoops!! I didn't realized I had already posted this information in an earlier post.

bluewillow · August 2008

Hey there Mary Jo! Mary Jo here... (I just love the way that sounds! Laughing Sorry, I tend to be silly on Friday nights, not because I'm imbibing or anything, but because I am so glad my work week is done!)

Not a problem that you have posted here before (I did too)-- I need to read things more than once to get the meaning anymore (not chemo brain-- just plain old age!) Your info is very helpful. Thank you very much for the encouragement about the energy level returning! Also, I am grateful for your information about the long half life of Herceptin-- I had really wondered about that and knowing it helps to understand the lingering effects.

I have a slight fever again, just enough to make me feel yukky-- I think I've got some kind of allergy or sinusitis going, because I had the same thing last weekend-- a temp of about 99.3 (my normal is about 97.6) I felt fine all week though, and I wonder if the several days of rain had something to do with it. It is still so dry here even after about 7 inches of rain, and I see the dust kicking up again. Would a seasonal allergy cause a fever? My nose hurts and right under my right eye, which sounds like sinus. Whine, whine...

Have a great weekend, everyone!

Mary Jo

juliejfsrj · August 2008

Does anyone notice that their face seems to get pale about 5 days after the treatment. My normally ruddy complexion becomes like marble, smooth and white. My scalp also aches if I just flip my hair out of my eyes. Then I fall asleep and forget until the next day. As my treatments continue, although my blood counts are better, I am much more fatigued. Hope you all have a nice weekend.

4thefather · September 2008

Tomorrow will be treatment #3 of Taxol and Herceptin. I have been quite tired. I thought maybe it was the Taxol. Now I wonder.

Cathie

anitach · September 2008

I have been on Herceptin since May '07. I finished chemo in December and was anxiously awaitng the great feeling I would get from being on HErceptin only. For a little while I felt okay but for about the last 6 months I feel like I am barely getting by. I am on the 3 week dosage as well and I have noticed after the last 3 or 4 doses that I don't seem to feel any better even after the 2nd week. I guess this is just another new normal to deal with as it seems that I may be on Herceptin for life as well.

Trish64 · September 2008

I just finished my year of herceptin.. I felt ok.. sometimes a little headache, tired on the night of treatments.. have a little water retention but that can be from arimadex or menopause.. achy yes and insomnia here and there.. that has been through the entire cancer treatement.. We are on so many treatemtns and meds you never know what is causing the side effects.. I keep a journal so I can see what comes and goes.. Best of luck and you will be done before you know it

TRISH

swimangel72 · September 2008

I haven't felt tired on Herceptin and I've been getting it every two weeks since last April, along with Navelbine. I'm done with Navelbine now and feel much better. At one point months ago I felt very tired, but at a routine exam with my family doctor, he noticed my thyroid numbers were low - so he put me on thyroid meds and I perked right back up. So perhaps it's not Herceptin that's the culprit - maybe its low thyroid? I really believe the Navelbine caused problems with my thyroid - it was fine before I started treatment. Anyway, it's very hard to figure it all out, especially if we're on more than one drug. Feel better everyone!

Victoria38 · April 2013

I am resurrecting this thread because I am just now realizing it must be the Herception causing my fatigue! At first I just thought I was still weak from chemo, but that ended mid October of last year. So SIX months later and I still have little energy. If I do anything tiring, say a few hours of cleaning, or work on a project for several hours, that night I sleep for 12 hours. I have a little burst of energy here or there fueled by caffeine I assume, but they are short lived. I am so anxious to get off this drug and see if I feel better, ansd see my hair finally grow! But I'm a little scared too, becasue I know how well it works on my type of cancer.

Alicethecat · April 2013

Hello Victoria

I'm on Herceptin too and have just started feeling a bit tired after 14 infusions - it could be the Piriton I have to have in the drip beforehand however!

Have you had your iron levels checked re anaemia? Might be another cause of tiredness. And have you had a heart scan too? What is your left ventricular ejection fraction? Mine is 68% so I know that my heart is not causing the tiredness.

Could you ask your onc or GP about your tiredness?

Hope you get it looked into and sorted soon!

Best wishes

Alice

ahdjdbcjdjdbkf · May 2013

Herceptin tends to lower Eosinophils, Monocytes, and Lymphocytes. This does lead to some fatigue. These aren't the infamous low blood counts of our hard core chemo days but they still impact how we feel and it's real. I'm 5 weeks from my final Herceptin and I'm more than ready to be done with this. But, I thank every treatment for saving my life and will appreciate the last two.

herceptin and fatigue

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