lingering side effects after finishing herceptin
 

i just posted in the her2group forum, but realized maybe i should have posted it here - anyone out there still experiencing effects of herceptin months after ending treatment? i'd appreciate any feedback. i have come to totally rely on all the great info on this website to calm me down when i start panicking... (like - "are those lingering pains from the herceptin or is it bone mets?")
sorry if i seems like i'm posting this everywhere, i really don't know much about using these forums and the appropriate place to post, i'm usually just a lurker.
nora

hi I am on herceptin alone @ 3 wk intervals/now until March been on it since june
what side effects are you having. ? No one I know is on herceptin alone.

Don't know if problems I am having are from the herceptin or from something else. Any help would be appreciated. Mary

Hello,
I'm also new to this forum and really like it. Anyway, I just completed Herceptin. I wasn't on anything else. I started Herceptin last September after completing chemo (A/C).

It's been over a month, and I still experience nasal congestion, but I notice it getting better. I still get tired, but I know that will get better. For some strange reason, I've been getting foot cramps and don't know if they are lingering effects from chemo or Herceptin? Anyone getting foot cramps? The last couple of months I've been getting a rash on my left arm. I don't know why.

Hi,
I was on Herceptin from Aug.06 to July 07. My side effects were exaustion, my nose ran like sugar-water, I had the aches and pains others complained about, and every time the weather changed I felt like I had a sinus infection. Still have all of that and now that treatment is over I've had strange pains in my right leg and swelling on my inside calf right below the knee. My leg is cold where the swelling is. I don't know if that has anything to do with the drugs or not. The Dr. didn't seem to feel it was.

I too have the nose running constantly and I have constant sinus infections.
I also have foot spasms.
No swelling of legs or feet, but I would look into that if I were you. If you didn't have it before you were on the herceptin, then your doctor s hould not dismiss it.

Re: lingering side effects after finishing herceptin
 

Hi I keep getting rashes. 3 months out from Herceptin alone. Small areas.

Re: lingering side effects after finishing herceptin
 

All the typical side-effects passed very quickly for me--four months out, they were gone.

The lingering side-effect seems to be related more to the benzyl alcohol used to mix the herceptin. I had mild-to-moderate brain effects from surgical anesthesia and chemo, but the severe brain damage began with Herceptin and got worse with each infusion. After I was done, the symptoms continued to worsen, until I was virtually non-functional. Benzyl alcohol has a documented deleterious effect on cholingeric receptors, and apparently some of us are extra susceptible.

http://www.ncbi.nlm.nih.gov/pubmed/1725728

My endo prescribed Aricept (donepezil) which is a cholinesterase inhibitor used to treat Alzheimer's dementia. It has gone a long way toward healing my brain (except I had a TDaP booster a couple of weeks ago, and one of the "inert" ingredients has a similar effect which has wonked me hard, albeit, not so hard as the benzyl alcohol).

Re: lingering side effects after finishing herceptin
 

As far as foot cramps its possible Quinine at bedtime might be valuable. At one time you could buy Quinine 325mg over the counter. You can't anymore. There is a prescription Quinine but now its very expensive and, as the indications are for malaria, I doubt insurance will cover it. When I had my own pharmacy I used to sell Quinine Sulfate 325mg for a few dollars a hundred
The muscle cramps Quinine was very effective for were the night and morning leg cramps seen after middle age.
The herceptin foot cramps may be very different but the
relaxing effect on quinine is general. Quinine, rarely, has caused blood dyscrasias (I think thrombocytopenia) and this is why it was removed from the OTC list. It was an over the counter drug for decades.


Maybe it would be worth it to have the doctor write out a prescription for a few tablets of Quinine and just buy them. See if Quinine is effective. If a full tablet is effective, try a half a tablet or even 1/4 tablet. Ive heard rumours that even the amount of Quinine in tonic water has helped the ordinary leg craps. It may be rumour. Quinine is the bitterest substance known and the bitter taste can be detected in dilutions as low as 1:100,000 if my memory is correct.

I hope this proves to be of some help

Paul

Re: lingering side effects after finishing herceptin
 

Remember that Herceptin lingers in the body for quite awhile. It has a 25 day half life so in 25 days, half is gone but half is still there. And so on and so on. After 50 days, 25% of it is still there. So the nasal conjestion is logical because its still there for quite awhile. Also, fatigue is a problem not just from Herceptin but also emotional fatigue. You just don't realize the toll that takes on all of us. One day at a time.

Re: lingering side effects after finishing herceptin
 

I HAD VERY BAD LOWER LEG PAINS ESP. AT NIGHT. IT LASTED FOR ABOUT 6 MONTHS. I WOULD WRAP MY LEGS AROUND MY DH LEGS ( AS FOR SOME REASON HE SEEMS TO RADIATE HEAT) AND THAT ACTUALLY HELPED AND THEN I COULD SLEEP. Weird, but it worked for me!

Re: lingering side effects after finishing herceptin
 

I have had a metallic taste that really seemed to become worse
after I was on Herceptin only,since Jan. 14 - Oct 14...... began Arimidex Aug. 14 . ago and boy this taste is not just when I am eating, but there always.
it is beginning to wear on me cause anxiety. Dr. said well you finished herceptin Oct 9...this could still be lingering, it will take time to go away. I hope so...because the thought of having to live w/ this an eating/has been the cause of my anxiety lately...like loss of Hope.

Re: lingering side effects after finishing herceptin
 

By starting a separate thread from the Please list your side effects on herceptin, real and imagined, you have made it harder for, someday, someone to try to utilize the info for some "post marketing analysis" which might help them discover side effects which have not made it on the radar (or the in package warnings) as well as trying to see if there are tests to determine which people might have those effects so they might not given those persons herceptin (eg pertuzumab+lapatinib or other her2 blocker only) or a drug which might block those effects.

I know I AM A BIT naive, in that the drug companies seem to be ignoring their responsibility under fda approval to carry out this marketing as there is no immediate cost penalty for not doing so, and perhaps also as to whether researchers will find the data "quality" is good enough to get them to do more research/statistics utilizing it.

I encourage you all to add your side effects to the one master SIDE EFFECT A THREAD AS WELL AS ASKING YOUR QUESTION SEPARATELY IF YOU THINK IT NEEDS MORE ATTENTION.

ALSO many keep saying, I was only on herceptin, but then say they had chemo.

side effects can take time to develop (years in the case of radiation therapy)
so specifying the entire course of treatment and when they were received as well as whether the tumor was er+ or er- and whether antihormonals and what type were taken(AND IF ER- WHETHER CHEMO SENT ONE INTO PERMANENT PREMATURE MENLOPAUSE) MAY help identify whether the side effext (joint stiffness) may more likely be due to an AI than herceptin.

As few receive herceptin only without chemo or antihormonalss, it makes it hard to dissect out herceptin's side effects.

Thanks everyone for adding to the post however!!!!!!!!!!

Re: lingering side effects after finishing herceptin
 

You know me, Lani--I'll bitch about benzyl alcohol in any thread where there's even the teensiest possibility it might be relevant. ;)

But yeah, agreed. It's important to keep the information in that thread, along with all the treatment details. Too bad we weren't keeping it in chart form. We might've noticed a pattern by now.

Re: lingering side effects after finishing herceptin
 

It is possible to merge these two threads under the original.

For those of you who have posted, please let me know your thoughts on merging.

Posts

Re: lingering side effects after finishing herceptin
 

I vote yes for merging.

Edited to add: ...but it should probably be up to Nora B., because it's her thread.

Re: lingering side effects after finishing herceptin
 

Something that I found very interesting is that while I was on chemo the arthritis symptoms I had prior to the treatment had gone away. I wasn't really aware of it until I went off treatment and the pain came back but more intense. I asked my onc about it and he said the chemo is sometimes used to treat severe arthritis and that when the chemo is stopped the arthritis will often come back at a more intense level. I have certainly discovered that this is true for me.

Re: lingering side effects after finishing herceptin
 

Ok Lani...I understand your point....sorry....where would I post my question? and maybe have some input from someone.
Thank you, Cindy

Re: lingering side effects after finishing herceptin
 

Ok so I'm new to this site, so I hope this is the right place to ask. I had ACT therapy along with nulasta. 30 days of radiation, Now I'm on tamoxifen daily and herceptin every 3 weeks. I just finished my 8th infusion. I thought my energy level had improved dramatically from the days of ACT but suddenly I'm getting tired again, not as bad but still tired. Also leg cramps seem to be rearing again and diarrhea. My question is has anyone noticed these types of symptoms progressively with herceptin? I didn't notice them the first couple of infusions

Re: lingering side effects after finishing herceptin
 

hi tntblonde
the fatigue built w/ me...I completed my year of Herceptin just this past Oct.
I went to PT in the spring....so that was about 6 mos. into it.... and got started doing some simple exercises at home to help my stamina.
I didnt have the diarrhea...and only once in a while leg cramp.
Cindy

Re: lingering side effects after finishing herceptin
 

Tntblonde - I'm having a similar experience. I'm taking anastrazole instead of tamoxifen and I'm told that's the issue - not the herceptin. I believe it because I delayed taking the anastrazole, in part, because so many of the possible side effects of the drug were what I had experienced with the chemo and I wanted to know if it was lingering side effects from the chemo or from the new drug. I got herceptin alone for 3 months before I started taking the anastrazole and I was doing pretty darned good during that time. I would ask your doctor if the tamoxifen could be what's causing your side effects. I would assume they would be similar to anastrazole but I don't know that for certain.