lingering side effects after finishing herceptin

[Nora B.]

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

[MAB1943]

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

[Senorina]

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.

[cath52]

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.

[MAB1943]

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.

[helichrysum]

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

[rhondalea]

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).

[donocco]

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

[Becky]

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.

[lkc Gumby]

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!

[CLD14]

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.

[Lani]

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!!!!!!!!!!

[rhondalea]

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.

[Posts]

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

[rhondalea]

I vote yes for merging.

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

[Dakini52]

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.

[CLD14]

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

[Tntblonde]

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

[CLD14]

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

[Lucy]

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.

[murphy]

I finished my year of Herceptin a month ago (after x12 Taxol and x32 radiation). I'm not taking any estrogen inhibitor. I've been experiencing leg muscle pain which increased along with my last few Herceptin infusions. I've been trying to find out if the pains are in fact connected to Herceptin. The drug company is no help—though "muscle pain" is listed as a possible side effect. And my oncologist doesn't know anything about it and just says any side effects should resolve in a few months. Does anyone have any experience with Herceptin and muscle pain?

[Colleen]

@murphy my oncologist is not thoroughly knowledgable of the side effects of perception either. The drug company has "nurses" who go strictly by the drug pamphlet. I would consider a primary care physician or and orthopedic. For many of the side effects I experienced with THP I used an acupuncturist.

[Jedrik]

I had my eleventh infusion of herceptin yesterday, that is the fifth without any chemotherapeutic agent. I take no other medication.

I have noticed increased neuropathy in the last couple of weeks, mostly in the lower extremeties, but every now a tingling like after hyperventilation all over my body. Especially after cycling a lot hurting legs and feet kept me from sleeping. Last night was the first night those tingling legs kept me awake for quite a while without me doing anything to provoke it. So I guess this will get worse before I'm through. Right now my whole body is tingling.

My shin and feet muscles cramp easily (which they never did before chemo) and about the first week after infusion the lower legs swell with water retention.

My nose is always clooged and sore and will drip readily in cold, after a cold drink and sometimes after a meal (which is really weird).

The skin under my heels and next to the corners of my thumb nails breaks again and again and again which is quite painful at times. The skin between my labia gets sore the first week after infusion, too.

My hair does not really grow. Nearly four month after last chemo it is not more than a short pelt: It covers my head, but it is very short, and soft, and has no volume. This might be a lingering or lasting effect from the taxotere, but I don't really think so (which might be wishful thinking, as that might not be reversible).

My nails grow at snails pace, too. There are still quite noticable blackened bits from chemo. I guess it might take them two more month until they will be grown out and the new growth appears to be quite a bit thinner.

Some of those gastric side effects are probably due to herceptin, too. Especially the first couple of days I feel a bit queasy, forever hungry, and I need to burp a lot.

Recovery from sports and healing of wounds and bruises is seriously delayed.

[Colleen]

@Jedrik - I had similar side effects that lasted and /or eacalated after dropping the "nasty" part of the chemo regimen. My neuropathy worsened for close to a couple of months after the taxane was dropped. I finished the taxane in February of 2014 and five months later I had a lovely gray "buzz cut" for my daughter's wedding, not what I was expecting. I had thought I would have a bit more hair 5 months later but nope didn't happen. My hair has grown but I keep it short, so much easier, and the gray is gone (cut off over time). My nails are thinner now so I also keep them quite short, I don't think they will ever be what they once were. I use a nail strengthner but do not use colored polish as it seems to negatively affect them. I too experience mild weird cramps in my feet and legs but try to constantly keep my electrolytes balanced. I love to swim and cycle regularly. My neuropathy has dissipated over time but is not completely gone, some nights are worse than others which is usually a sign I am over tired and need rest. As for the nose drip this is initially caused by hair loss, we lose hair "everywhere" including the lining of our nose. Without those tiny hairs to filter we drip drip drip. Somedays I thought a tampon in my nose might be a good idea :-/ The drip is better and comes and goes. I too spoke with the people at Genentech and is all they do is read the "box label", my oncologist is not much better. When I tell her these things she looks at me like I have two heads. Also my eyelashes and eyebrows never fully grew in, so I color on eyebrows every day and only wear mascara occasionally. Hang in there things will improve, its just a much slower process than we hoped for. Ease into the exercise part, you are not back to where you were prior to the taxane but you will get back there. Read the book Mind Over Medicine, its wonderful. I also used a lot of acupuncture to promote healing.

[silvergranny]

Herceptin caused hives for me, but I now take a Reactine before each dose and it has helped to stop the hives. My nose also drips a lot and I have no bladder control. I sure hope this side effect reverses as I hate wearing diapers as they irritate my skin. I finished chemo in April and now have tendonitis in my right wrist. Apparently this is a known side effect of chemo and being right handed, it is difficult to function without a lot of pain. Thankfully, my heart function is good.

[TiffanyS]

I experienced some lingering side effects, like neuropathy, joint pain and stiffness, after I was done my first round of chemo, and was only taking herceptin, and my doctor told me that chemo side effects could last up to a year after you are done treatment. The joint pain and stiffness eventually went away, however, I still have two toes on my left food that are numb all of the time. My doctor recommend acupuncture, which I will be starting next week. Your side-effects may be caused by Herceptin, but they may also be lingering side effects from the chemo. Regardless of what’s causing them, I hope they go away soon.


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