Please post your two cents on Herceptin "side effects" real or perceived! - Page 14

tdonnelly · 04-22-2009, 10:14 PM

My thyroid disease clashed with BC punch press biopsy and red pill - Levothyroxine, chemo & Herceptin treatments. TSH too high then too Low. Last Herceptin was Sept/Oct 2008 and recent bloodwork showed too High. Levothyroxine was 175 mcg (purple pill) for 1 yr (too high) reduced to 150 mcg last month (blue pill.) I still dont feel well. Is there a Doctor out there that Knows How to Care for Hypothyroid/Breast Cancer? I gained 65 lbs to date since all this began in 10/2006. Dont tell me to see an Endocronologist I was seen by two quacks already.

All these irradic levels of TSH and Thyroid Pharaseuticals are causing additional health problems.

I put in an email to Dr. Oz on Oprah for investigation and answers...

juanita · 04-27-2009, 05:22 PM

i have another sinus infection and i never got them like this till after i did herceptin. that is the one thing that has not gone away. well, that and a little neuropathy but that ain't as bad as these sinus infections.

DianneS · 05-01-2009, 04:12 PM

Hi all - again,

I posted a thread about Herceptin related side effects not realizing that this thread was so long! I thought the last responses were in '06. Duh. Good that I found the rest of the thread...chemo brain....

I have the nice leg and feet cramps. My family doc gave me a prescription for compression hose, which helps and also helps with the possibility of getting varicose veins. Apparently chemo damages the valves in esp. the legs, causing legs/feet to swell and veins to burst....chemo, the gift that keeps on giving, eh? I'm hoping this is temporary.

Diarrhea almost daily, slowed down somewhat with aloe vera juice mixed with any other kind of juices. 2 ozs a day. Seems to help with acid reflux as well.

I seem to have an all-over achiness in the early morning hours. It disrupts my sleep. But once I"m up and walking around I'm ok. I'm on Herceptin only after finishing 5.5 sessions of Taxotere and Carboplatin March 12. My most recent Herceptin was April 23. I get them every 3 weeks.

Besides the side effects mentioned above, I get a rash in different spots, mostly on my legs.
Dry eyes alternating with runny eyes and nose, fatigue. Some days I feel almost normal but then it feels like someone took my batteries out - my energy just goes!

Is there any evidence to show that doing 9 months or a year of Herceptin makes any difference? I think I read that in Europe, they are finding that 9 months does as much good as a year? I'd like to get off of this stuff.

I think my diagnosis will show up at the bottom....if not, it is:

DCIS 50%, IDC, right breast, 2.1 cm tumor, no vascular invasion or lymphatic invasion found, bilateral mastectomies done 9/08, Stage 1 or 2A (because of tumor size) Taxotere/Carboplatin/Herceptin begun Nov/08, completed March 12, still doing Herceptin x 3 weeks....yuck.....

Thanks all,
Diannes

Terri B · 05-04-2009, 02:49 PM

Ladies and Gents:

I recently started having puffy eyes when I wake up that lasts for hours. The kind of eyes you get if you cry yourself to sleep the night before! It is very alarming! Also, i noticed that my lymph nodes on my clavicle on the breast cancer side puff up sometimes too!

The sinuses, the sinueses ugh. and the crunch, burnt, peely feet! whaaa

DianneS · 05-13-2009, 02:05 PM

Hi Terri,

Try a rich, creamy foot cream for your feet just before bed, then put some socks on (I know, not very sexy) and leave them on all night. I did this all through chemo and it really helped....afterwards as well.

For sinuses, try "Ocean" nasal spray to keep the membranes hydrated. There are other brands with similiar ingreds. and at least there are no chemicals in this stuff, just natural.

Hope it works for ya,
Diannes

DianneS · 05-13-2009, 02:22 PM

Hi Terri,

So your eyes sound like mine. I look sometimes like I've been on a crying jag, esp. when I wake up in the a.m. Everyone in the medical world says they don't see anything about Herceptin causing it. Yeah right.

Have you found anything to help?

I sent you a reply that might help your feet and sinuses. This stuff sucks...my doc/onc calls it 'baby chemo'. Is she crazy?

Diannes

Terri B · 05-15-2009, 11:31 AM

Dianne, Steph,

Yeah, I'll be seeing my onc on Monday. I will tell her all about my issues. I'm almost done with my year. I think I have 2 treatments left. Muga keeps dropping slowly. Last one was 53.

I just feel UGH. slow, sluggy and worthless.

Steph, if i have a clot, will my port work? because my port has been working okay.

It's like I have allergies, and I never had allergies before. I have really bad nights where my nose is so clogged that I snore (at least that's what my daughter told me

) It's those nights that I wake up with the puffy eyes.

but i have hair!!

ElaineM · 11-15-2009, 11:36 AM

Sorry Flori. Some men just can't handle a strong woman like you. There are alot more fish in the sea. Smile.

Alyce · 05-06-2009, 08:12 AM

Hi Dianne- Just read your post. Of all the crazy places to find answers- I was having a massage in Sedona, Arizona by an Aruvedic Nurse (yes both nurse and Aruvedic!) I had been having horrible leg and foot cramps. Without missing a beat she said I needed magnesium. Bought some tablets and NO MORE leg and foot cramps. I couldn't believe the answer was so simple. I swim 3 times a week so I don't have any joint or body aches. I attribute any good stuff without side effects, to lots of reading about nutrition, mental health care and actually making the changes.
No more processed foods, only yogurt and a little cheese for dairy, lots of fruits, veggies, whole grains, beans, a little grass fed beef and some salmon. I also continue with counseling and antidepressants. It is a new "normal" that really takes some work. Do you have access to find some support systems?
Alyce
2008 - HER2 positive, stage 1, chemo (4 rounds), Herceptin (one year), Radiation, Femara

StephN · 05-06-2009, 09:41 AM

Terri B -
Don't know what to say about "burnt, peely feet" except that mine peeled from the chemos and healed well all the time I was on Herceptin.

If you are feeling VERY puffy and it goes down in the day and comes back during the night, you may want to have your port checked for a clot. The puffy, teary eyes, worse in the morning, was a big sign of my clot.

Watery eyes from Herceptin, but should not be puffy.

DianneS · 05-06-2009, 05:40 PM

Alyce,
That is good advice. I tried magnesium but I get diarrhea from even 250 mg cut in 1/2 - so what to do?
I too have changed the way I eat - not that I was eating processed foods to begin with, but I have added more fruit and veggies. We aren't meat eaters except for chicken and I buy that organic. No, I don't have much support as I live in a very remote area in B.C. Canada. I'm not much for joining groups anyway, and feel this is such a personal thing that I don't want to discuss it with counselors who haven't 'been there' so to speak. I'm dealing with it ok, I guess.
My eyes are mainly bugging me right now. The eyelids are red and look like I've been crying. Eye doc said to put moist heat on them which I have not done yet

I don't have a mediport and never did so it must not be a clot, as one poster mentioned (can't see your post, sorry) I assume Herceptin causes irritated eyelids. Eye doc said my eyes are dry so they over compensate by making too many tears. Did anyone find any over the counter stuff that helps stop this? I hate going outside looking like I've just had a good cry.
Thanks,
Diannes

Cal-Gal · 07-10-2009, 07:07 PM

Fatigue
Painful joints- hips, knees, lower back.

pmm10414 · 07-26-2009, 07:31 PM

I took Taxol/Herceptin prior to surgury and now am on Herceptin only weekly. I will go to every 3 weeks soon. The biggest issues are with my nose -- doctor has me taking daily Claritan which seems to help. I have some soreness but am not sure if that is still from my surgery -- bilateral masectomy 4 weeks ago. Radiation not started yet.

Lani · 09-21-2009, 06:30 AM

bumping this 3 1/2 year old thread up. It holds quite a wealth of information thanks to the over 440 contributions from her2support members

juanita · 09-21-2009, 09:07 AM

i think the main problem i have still is sinus problems. they just won't go away!

bejuce · 09-22-2009, 06:20 PM

My teeth seem to be very sensitive now, especially when I eat something. I haven't had this feeling before and it's hard to explain. Has anyone else experienced weird teeth sensations/pain while on Herceptin?

Thanks!

Marily · 09-23-2009, 12:11 AM

I have had very weird feeling in my teeth and sensitivity to cold especially . I have been going to my dentist about every three months since we found weird little worm like holes in a couple teeth ( a friend also had this same thing happen to her teeth on Herceptin.) I have not had cavities but had to have the teeth with the worm holes (sorry about that) drilled and capped. I really do not know the reason? but I have learned not to drink icy cold water etc and just have the dentist watch my teeth.
Not much information on why but hope it helps to know others have had similar side effects.
Marilyn

Cal-Gal · 09-22-2009, 07:02 PM

Hello bejuce-

Interesting that you posted this.

Yes-just recently this past week started having sensitivity in my teeth-and I did not relate it to the Herceptin!!!!

I have completed 15 treatments of 52 --

All of a sudden I am sensitive to cold-sweets-

Jackie07 · 09-22-2009, 07:48 PM

Be sure to gargle with salt + specks of baking soda after every meal and before going to bed.

DianneS · 09-22-2009, 08:56 PM

Diarrhea more frequent around herceptin infusion. Runny eyes, drippy nose but not all the time. Leg muscles more fatigued than usual after walking (but I did 2 hr hike today) lower leg/knees/ankle feel sore or puffy or something. My feet hurt first thing in the a.m. until I get moving around.

Hot flashes! Is this associated with herceptin? I was wondering. I am postmenopausal since bilat oophorectomy Feb. 2008. How long do these hot flashes last? I am not taking any Taxoxifen or AI's that might cause it.

Oh yeah. Occasional cough - from drippy nose?

Also my eyelashes are growing towards my eye on my right eye. I have had to have the doc tweeze them out more than once. It's only about 4-6 eyelashes but I never had this before chemo/herceptin. They are recommending I get the offending lashes lasered to kill the follicle. Chemo: the gift that keeps on giving.

Dianne