When do Herceptin side effects go away?

GointoCarolina

I had my final herceptin a month ago this coming Thursday. I am wondering when I can expect to get my energy level back and if the muscle stiffness and pain will go away?I also have the splitting nails,slow hair growth, stomach issues,runny nose(after I eat!) and acne on my scalp.My doctor said it would take  about two months to clear my system,but wondered what everyone's experience was. Thanks!! Jackie

mmm5

Hi Panda

I did not notice feeling better until about 3 months post Herceptin, started getting energy back, nails are still a mess, runny nose is betters, stomach is good now.

I would give it a solid 90 days, I am glad to see you finished and are done.

I expected I would celebrate, but I just was so tired and mentally tired after a year of chemo, it is now just coming to me that I am done and able to enjoy life and I am 5 months out of Herceptin. Be patient, kind to yourself and drink so much water that you think you are going to explode.

GointoCarolina

Thanks! I am glad you reminded me about the mental exhaustion, I think I am in such a big hurry to get back to normal physically that I forget the emotional aspect.I have  had a very stressful couple of weeks and today I am really feeling the affects.I am wondering if my hot flashes will diminish now that I am off the herceptin?I am going right now for another glass of water!Take care. Jackie

BMac

I agree it was several months before I started to feel like myself.  I finished on Jan 8th and by the end of Jan I had more energy.  That's when i started to work out again.  My nails only improved about 2 months ago.  Runny nose is long gone.  I feel much more like myself again.  Good luck!

kimbly

Yes I would also say several months.  Runny nose was so annoying but pretty much disappeared I would say a month or so after the last herceptin treatment.  I too had slow hair growth (although my onc. says no herceptin does not do that .. I disagree) and it was almost another 6 months before my hair started growing at it's normal rate although it is still thin.  That could be the Arimidex. 

swrightbsn

I thought my runny nose was getting better when I came down with a head cold after taking care of my daughter with the swine flu.  I managed to avoid it. My nose is so sore and I'm going to be on this drug until March 2010.  My stomach has been bothering me too. I've been SOB and I'm retaining water.  I am looking into the herb Hawthorne and it's all so confusing as to how much and how to take it.  My echocardiogram show's a mild drop in my cardiac output all within normal. I have very little mitral and aortic regurgitaion. I want to protect my heart from heart disease which runs in my family. 

BMac

I forgot about the slow hair growth!  That's a definite side affect.  How do I know?  Because I had ovarian cancer 7 years ago and my hair grew back much quicker that time.  Of course the doctors deny the side affects.

GointoCarolina

My onc told me I could take CoQ10 and fish oil for my heart and he advised that I be as active as possible.I had some loss of heart function from 67 on my first MUGA to above 55 on my last echo.I take carafate for my stomach and it has been a life saver.It has been 5 weeks since my last herceptin and I know my hair is starting to grow! But still so achy. Does anyone think the herceptin affects hot flashes? Mine were not bad on the weekly,but when I went to every three weeks, they seemed to intensify and now seem to be calming down a bit.Another thing I have noticed,I do not have that awful urgency to pee. Jackie

moonwolf

panda - I see you have mentioned peeing.  I find I am peeing up to 5 times a night since being on Herceptin. (and never feel completely empty)  Did you have problems with peeing more?  I posted somewhere about it, but got little response, so I am not sure whether to blame Herceptin or chemo damage to bladder.

moonwolf

panda - sorry - I have just noticed you posted on my last thread on this!

ameron

Hi,

I was very discouraged and surprised to see this post. In a few weeks, I have to start and stay on Herceptin for a year and was told there would not be any side effects.  Now I see this post with lots of SE's the most significant of which seems to be fatigue....I cannot take another year of fatigue....does anyone know if most people get se's on Herceptin?  Thx all. 

BMac

Ameron I can only speak for myself but I noticed a huge improvement in my energy level after going off herceptin.  That being said the fatigue can't even compare to the fatigue caused by chemo.

Doctors don't seem to acknowledge the side effects.  When I asked my onc when my nails would get better she said the Herceptin didn't have anything to do with it.  She said nail problems can be caused by other things including thyroid problems.  Well I know there's nothing wrong with my thyroid.

Good luck and don't dwell on SE's.  Just be aware of how you're feeling and realize that some of what you're feeling may be down to the Herceptin.

GointoCarolina

Moon wolf, I am still waking every two hours during the night to pee,but I think it is because I wake up from my hot flashes,which I think(please) are getting a little better.I was having to hustle to the bathroom during the day,but that has let up and seems better each day.But I am still so achy!   Ameron...Do NOT be discouraged,the fatigue is nothing like chemo,during chemo,I did not have enough energy to take a shower and had to have a commode by my bed. I really did almost nothing those months.My chemo fatigue lingered, but over the summer,while just on the herceptin,I got more and more energy. Part of my problem was on the days I felt well, I overdid and then was back in a slump.So try to pace yourself.And I am now 56, I do think age can play a factor in the fatigue.I do think I would encourage anyone who can to keep getting the herceptin weekly instead of every three weeks.Just from what I have read from other postings, the SE's are less.

JeninMichigan

For me the side effects with Herceptin are relatively mild.   Yes, drippy nose.  Yes, splitting nails,   Yes, slow hair growth.  But I don't have alot of fatigue. .  I work full time, single mom, live on a farm and work out 3-4 times a week.   I don't notice any slowing in my energy.     Definately Herceptin is being the nail issues, drippy nose and slow hair growth.  I am going to be on Herceptin for life so pass these side effects off as mild for my own peace of mind too.

Jennifer

Mike1C

My wife has completed surgery, chemo and radiation but is continuing Herceptin for a total of 12 months. As a dancer and dance teacher she has physical demands that are much harder now due to muscle fatigue. Does anyone know what she can do to counter or diminish these effects?

Brenda26

I am taking Herceptin every 3 weeks for the next 6 months (had second dose Tuesday), finished chemo and all buy onc wants herceptin for a bit.  I have really bad muscle/bone pain from the 12 weeks of Taxol I took but today the pain all over is almost unbearable, the Vicodin which usually knocks is out just dulls it.  Like everyone else the onc says there will not be any side effects but now I see that is not the case.  Does the muscle pain get any better while still taking the herceptin or do I have a few months of really tough pain to look forward to.  Am sooo frustrated, finally got thru the chemo, feeling tons and tons better, and was hoping the pain from the taxol would slowly improve and now it seems this is just making it so much worse.  Argh!!  

deedee22

I just had my first TCH treatment last week. Before I started my doctor said some studies at the Mayo clinic showed that taking 2 grams of ginseng a day helped with fatigue from chemo--it didn't work for everyone, but for those it did work for, it helped a lot with the fatigue. I've been taking it and I don't feel tired, but it's really early on in my treatment.

ccbaby

I just had #12 herceptin last week. I really don't notice any side effects from it by itself. When I took along with chemo, I had quite a few side effects, but those stopped a few weeks after chemo ended. Then I did radiation for 6 weeks. I have been extremely tired the past year with all of the treatments and working through it all, but now that chemo and radiation have ended, my energy level is going back up, at least I feel like it is.  Mike...I had major muscle weakness when I was on the chemo, but not as much anymore. I think staying active helps a lot.

MaggieT

From Maggie T

Hi folks I'm new to this but just wanted to say that I seem to suffer most of the same side effects as you all, muscle pain, peeing constantly through the night, nail destruction etc, but the worst of all is the huge red raised blotches I get in the various places, on my neck (beautiful for a low neckline) and my right arm mostly.  They start off as small prin pricks but then get to huge ugly shapes, coloured between red and a purplishness.  Does anyone else have this and although I have a cream to put on them they take forever to go. I finished my Herceptin about 1 month ago and my hair has grown and is now wavy whereas before it was really straight, so that is one really good thing.

ROCMAX88

Hi all, I too am new to this.  I have also experienced all of the above side effects including dizziness and have a condition called virtigo which started with my first infusion of Herceptin.  Has anyone else experienced dizziness??   

Jeniffer

I'm due for my final (18th) Herceptin this Friday.

When I read the list of possible side effects this time last year I was really worried, especially as I'm also on Arimidex which also has a long list of potential problems. I don't regret my decision to go ahead though - I have survived the treatment and hopefully increased my chances of survival from breast cancer.

I have had a lot of the side effects that many of you have mentioned - tiredness and weakness (which usually kicked in a few days after each infusion and lasted up to a week), slowing down of hair growth (it had been growing well after chemotherapy and radiotherapy), pain and stiffness in finger joints, spasms in toe joints, loose bowels (not quite diarrhoea, luckily), sometimes very dry, sometimes runny nose and brittle nails. Doctors and nurses of course weren't really interested in any of these so eventually I stopped bothering to tell them.

Anyway I want to encourage all of you to persevere - you can do it!

BorneoMom

Hello HelenaK88.

I just saw your post about dizziness and thought I'd respond, even tho it's been more than a month since you asked.  Dizziness was one of my main SE's with chemo and Herceptin,  but cleared up after chemo finished, except very mildly of late--and I've had 13/18 (only 5 more to go!)  My onc. told me my dizziness was not caused by my treatment, but I know he's wrong. I had 2 treatments with Herceptin before I started chemo (Taxotere & Cytoxan x4), then had Herceptin concurrent with the chemo and that's when the dizziness started. I had it really bad--had to hang onto walls and furniture to keep my balance.  The dizziness would subside after 2 weeks, and then hit again right after chemo, so I know they are connected.  I searched hard to find one other person say they had dizziness, so I guess it really is not common, but I sure had it bad.  Hope your's is getting better.  Blessings, Lois

Dolores81035

Hello everyone,

I have the same side-effects this was my 7th Herceptin infusion. My stomach hurt, runny nose and less energy. I drink a lot of water and it helps after the 2nd day of treatment. My DR denies these are side effects of Herceptin.

jodo52

Hi Dolores,

I am also on Herceptin..just finished 1 week ago.. I never realized..the runny nose, stinging on my nbody when I am hot(justv started happening) are all Herceptin related until now when I read the

other posts on here..Glad to know I am not going CrAzY:>

I also have tingaling dowm my right arm occassionaly , If anything cahnges since I am off of it, I will let you know

Carolyn

jodo52

To everyone here..if this helps at all..when I was on Chemo for Her2..and I am a dog walker..I never missed a day dog walking through Feb till May 09..

I dropped cafine,,raw sugar..bad fats(fat on meat) and processed food..took up juicing,ate my veggies..friuts and salmon.chicken..

Felt really good my customers where amazed....

side effects were split nails..some loose poopy...never tired..

Herceptin..same thing..split nails..my hair grew back fast....stinging showing up now in body., one week when I finished Hercptin...

When I got my white blood cell shot..I did it 2 days after not one to get around the bone pain.

I hope this helps someone:>

God Bless

Carolyn

kclark

I have three Herceptin treatments left.  I started with the 18 weeks of TCH and I had many SE's.  Hospitalized twice neutropenic, and infection.  My SE's on the Herceptin alone have been milder.  Fatigue for the first week after trt, short of breath, palipatations, achy, runny nose.  My MUGA shows no decrease in heart funcion.    The worst thing for me has been feeling depressed.  Have started exercising again to try to combat the depression.

ltyler

I had these patches too.  I think some kind of allergic reaction.  The patches were very itchy and like I'd fallen into poison ivy.  I used cordisone cream and it relieved it...but I had to use it frequently.

tlinder

BorneoMom - I too had dizziness with chemo and some during Herceptin treatments. A nurse told me to drink more water and that seemed to make a world of difference. Hope this helps.

tlinder

Just finished seeing the doc and he feels that the 90 year old woman I have become with the muscle aches and joint pains are caused by the Femara and not so much by the Herceptin. To test this idea, I am going off the Femara until my next treatment to see if it improves. I hope so. Just FYI in case anyone else is on this med. He said there are three types of meds I can take and each differ in the side effects.

weety

I feel the same joint aches and pains that I think you are referring to and I haven't started an AI yet.  So I'm pretty convinced that the joint pain I've had is from herceptin (or probably a combo of that plus the lack of estrogen from chemo-pause)  My onc told me to brace myself because the AI's are known to make it worse.  Just what I needed to hear. . .  I'll be starting it in 2 weeks --I think it will be arimidex.  My onc said the same thing as yours--if one AI gives you problems, she'll switch me to another to see if that one is better.  She said everyone reacts differently so you really won't know which is easiest for you until you start on one and go from there. 

moonwolf

I finished chemo March 2009, so have only been having Herceptin (3 left to have).  I have joint pain so it must be Herceptin.  My back is so bad I asked for a bone scan as I thought cancer may have gone to my bones, but I was told it is 'probably' degeneration (arthritis).

Although I guess it could be delayed chemo damage to bones.

I turned down Arimidex and am taking Indole-3-Carbinol (alternative) instead, which is said to be better!  and no side effects.