Please post your two cents on Herceptin "side effects" real or perceived! - Page 22

YNieves · 04-12-2009, 06:31 AM

I started my chemo this past wednesday. Taxotere, cytoxin and herceptin. The 2 chemo meds were well tolerated. Half hour into the herceptin, My chest closed up and I spent the next 5 hours in the ER! Thank God 2 nebulizer treatments, and magnesium sulfate brought me out of it. The next step was going to be epinephrine and possible intubation. They are considering trying to desensitize me to herceptin so i can try it again and accept it. Seeing allergist on Tuesday. I am Her 2+, stage one, ER/PR neg, 1.4 cm tumor, no mets or lymphm nodes positive. Mastectomy. Previous DCIS 2004 stage 0, received lumpectomy and radiation. Clear lyphm nodes. Herceptin episode was scary especially for my husband. I have to decide if I want to chance having another reaction during desensitization. It is so serious they will only try it in the ICU just in case??? Has anyone out there ever gone through desensitization for herceptin.? I'm a nubie so forgive my excess writing.

Alyce · 04-13-2009, 07:02 AM

I completed Herceptin a few months ago and did not have any side effects that I noticed. I did have some issues with fluttering heartbeats that were problematic but probably not from Herceptin. I have heard that many women have had to stop it for awhile. I hope you will have better luck with it and that your side effects will diminish. What has helped me tremendously is swimming, really good diet, meditation, and Anti-depressants!

Rich66 · 04-13-2009, 12:59 PM

1st infusion, 4mgh/kg Herceptin monotherapy. About 2 weeks in, Mom seems to have runny nose and sores on her lip. She's wondering if these are similar enough to cold sores to be potentially contagious/infectious. ??

YNieves · 04-15-2009, 03:46 AM

Thank you for your reponse Alyce and Rich 66. I met with allergist. He is going to set up a protocol for my desentization of herceptin for next Wednesday in ICU. I haven't decided if I am going to do it. Still praying on that decision.

Marily · 04-15-2009, 02:30 PM

To anyone haveing desensitivation for Herceptin... I have had to stop my Herceptin due to two very bad reactions in the past two years with severe headache and "an outer world feeling like being outside of things looking in" dizziness and lethargy and muscle spasms. I also had very severe CHF about 4 years after taking. We stopped for 4 months I went on cardac meds and now muga is good. I would really like information on getting back on Herceptin. My Onc already has said he would not restart it unless I was in the hospital. How did you start at what dose and speed? and how fast did you get back to ?loading dose or normal dose? Thanks Marily

YNieves · 04-16-2009, 07:23 PM

Saw allergist today. Tested my skin with Herceptin and Taxotere. Showed allergic reaction to both. Face and neck broke out in blotchy hives. Next step desensitization in the hospital ICU so all precautions are taken. I am thinking of fore going the Herceptin for now, finish chemo in June '09 and then try to be desensitized and do the year of herceptin. This is doable , right? AS LONG AS I'VE HAD THE CHEMO I CAN DO THE HERCEPTIN ANYTIME IN THE FUTURE????? Anyone????

04-16-2009, 08:37 PM

On from 3/2007 to 3/2008. Multiple UTI's, a few red patches on skin (that have never gone away), and for the last couple of months while on it, muscle twitches, particularly in legs, which resolved a couple of months after finish.

Rich66 · 04-17-2009, 11:16 AM

Interesting. I have not heard of skin testing for chemo reactions...or other medications for that matter. I thought it was lmited to naturally occurring allergens like grass, dust or pollen. That's good to know.

Regarding the Chemo/Herceptin issue. I believe that depending on the chemo plan and other factors, there may be added benefit/synergy to having them concurrently. I don't have the sense that it never matters.

Laurel · 04-17-2009, 05:59 PM

YNieves,

I am not certain that you will wish to wait a protracted amount of time to do the Herceptin. One of the reasons they feel TCH has been showing results that are so positive against Her2 cancer is that the Herceptin is begun with the initial treatment. I am no authority. I am wondering if your docs have considered a more modest dose of both Taxol and Herceptin?

Please post this question on a separate post so some of our proper heads can respond. It is lost here on this thread and it seems quite important.

Rich66 · 04-22-2009, 06:41 PM

Another thought might be to try Tykerb if Herceptin is too problematic. Would probably be "off-label" but possible.

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

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

rondo · 05-12-2009, 12:32 PM

See signature for history; currently on q 3 wk herceptin only. 3 treatments to go, I think. Have night lower leg/foot cramps, getting worse, although calcium/magnesium supplements do help a lot. Crusty nose at night. Fingertips split, skin rash, and acne after every treatment. Clears up and recurs every time. Nails are brittle for the first time in my life. Hair is OK. Near vision went bad when started chemo and has improved maybe a little.Weight stable, but I have become a VERY disciplined eater.
Fatigue just came on a couple of weeks ago and it's bad. I never was tired, even while working full time thru taxotere/carboplatin and radiation. Occasional mild diarrhea. Had bad gastric reflux while on chemo but none since.
Here's my question: when I complain about these side effects to chemo nurses they assure me that the worse the side effects are, the better the meds are working. Is this just bull**** or is there some science to back up that contention?
I complain only so they are aware of the side effects; I fully understand and appreciate that these treatments have at least given me the opportunity to live a normal lifespan. Thjat's a pretty good tradeoff.

DianneS · 05-13-2009, 02:00 PM

Rondo,

I have fatigue as well, but I just finished 5.5 rounds of Taxotere/Carboplatin (with Herceptin) March 12. Possible I am still getting over the toxic stuff? I feel better than I did 6 weeks ago. But. Yesterday I was out & about doing errands and my energy seems to stop about 5-6 hours - like someone pulled my batteries out! I did have to fast yesterday for some bloodwork so ate late, then took a long walk and was on my feet until dinner time. My legs felt like they weighed 100 lbs more than usual, very achy and tired feet. Headache as well. I just went home & stayed in bed! Today am better because I haven't done anything but hang around the house.

I also have paper thin nails, some parts of both big toes have nails that look yellow, numb toes especially at night, runny eyes and nose but not all the time.

Does anyone else get watery eyes from Herceptin? I went to the pharmacist as well as asked my doctor and both could not find anything about Herceptin causing watery eyes and red eyelids. But I didn't ever have this before I started Herceptin!

As for it working better the more side effects you get, I was told this is not the case by both doc and nurses. I don't think it makes any difference. Some people may be more allergic to the ingredients in Herceptin than others. I have never needed (nor is it the protocol in B.C., Canada) Benadryl before during or after Herceptin.

Hope this helps?
Diannes

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