Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

I cannot turn bold off, sorry. Being dosed on actual weight instead of waiting till weight dropped more than 10% from dosing calculated weight has made a huge difference such as the bloody nose and hole starting to form in the septum is now healing. I logged into this site by myself (okay, I had to follow hubby's instructions but still huge improvement for somebody that used to design and code huge world wide computer systems). Reading better, and still learning math again. Balance may take a long time as well as speech and finding correct words. Seems I'm also a whimp with tramadol, gabapentin and many others - get more confused and hallucinate with some too. I guess being a 100 pound pixy has disadvantages when it comes to meds. I lost two inches in height in seven months, so I guess soon I can try out for the remake of OZ. Although not pleased with the mental deficit, I got many replies on how to adapt. I set many timers when the oven/stove/etc is in use, and laughable when they all go off but necessary to keep tenants and house safe. The app, Calendars 5, has been a huge help.

Blessed with a smart 17 year old dog that learned to nudge me when I zone out, actually when the stove would start to smoke ... still ... smart dog. I still lose time and get confused. I found that speech improves when I take pain killers for all the concrete tendons/muscles/joints/etc. I figure calming the pain waves may help the brain function better - seems that way. I'm told to give it a couple of years before feeling the pain and/or disabilities are permanent. Based on feedback, I truly believe things will resume to me being a strong Ox again and being able to get cognative abilities back.

I did find out the GP2 vaccine did complete phase I and II with all recepients with Her2+++ not having recurrence - YAY huge break through. The bummer part is that phase III has not received funding, I believe Antigen has the ID. If ANYONE can get me access to the GP2 vaccine, please let me know. My last Herceptin is Dec 1 and to be part of the trail or for the vaccine to work you have to have just finished the one year of Herceptin.

I will work on future posts being more concise with specific hints for others. Although against the rules, I am taking supplements, but none that are known to conflict with Herceptin and only those documented to work and complement Herceptin such as Q10 with an omega 3 supplement such as MegaRed, Glucosamine (without controtin, I feel this gave great relief to joints), and there are two others - gads I miss the steel trap memory. I also got permission to take B12 and D. Needles with steroids directly into joints stopped the trigger fingers and toes, but let me tell you ... the first 24 hours are a bear ... just immobilize the joint and take something to sleep/pain for 12 hours, then expect the trigger to actually get scary worse before the shot makes things better, like 4 weeks. I went from not being able to pull up underwear without dislocating fingers to barely recalling how awful a problem things got, fingers and toes now normal again. Nobody told me I was suppose to use a dialator during chemo and Herceptin, so I had to have surgery to make a certain part usable again - I have no idea why they don't tell folks these easy preventive tips before starting chemo regardless how private and TMI it may be. Honestly, I was told six chemos would be easy peazy and back to normal physical and mental sports/hobbies/work after the sixth. I was just informed that nobody with lympth nodes removed is suppose to shovel snow, lift hay bails or anything over 5 pounds, and to never never use the forearm to hold shopping bags. I'm just wondering what are all the other things I don't know about, and is there something to read that lists these gotchas? Why is each patient having to learn all this (e.g., recreating the wheel)? I have to resume taking care of handicapped and elderly family, so if you know if I ignore that advice the risk I'm taking let me know.

For folks out there in tears and scared that the symptoms will land you in a wheel chair or bed ridden, it does start to get better, but pretty scary ride, I understand. Just don't understand how the medical staff can be so ignorant there are folks having issues and issues are real and valid. Oh, and if you can't find your car keys look in the freezer - seems to be the first place I check now. (and NO, I do not drive often or under the influence, but when I do drive I only do so without any meds and only super good days. I will not risk the lives of others to drive).

No words can articulate the appreciation and thanks I have for those that shared on this post, it is very scary to be told nobody else has issues and to buy a wheel chair. Folks like you posted during a critical time to help provide faith in recovery and healing. THANK YOU. I will post as things improve so others can get a feel for changes and timelines. Hopefully I'll also learn to be more precise and concise posting. I'm thrilled I can type with more than two pinky fingers again.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

I have been on Herceptin for almost 5 years now and continue to be NED so far. I began receiving Herceptin after a local recurrence in early 2010. I receive the treatment every 3 weeks and will continue indefinitely, potentially adding Perjeta as another way to block any recurrence. The symptoms I have are a runny nose, weakened fingernails, some joint pain. Each time I receive the infusion I do have mild flu-like symptoms, however by the next day they pass. Compared to other chemotherapy drugs I have taken it's pretty darn easy.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

I forgot to mention that I also have continuing issues with my eyes. I seem to tear constantly and my eyes are always somewhat irritated. Didn't have this before the Herceptin so am thinking it is probably a side effect.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

oh yes, the itchy eyes and red rims. Today so thrilled, toe nails finally grew to meet the end of the toes, took from April till Dec. The finger nails are like rice paper still, peel, bend, flake off. Hair starting to get real thin on top, that is a bit scary after just getting it an inch long and super thick. My Dec 1 Herceptin treatment was greeted with poor liver function blood test results, but I'm confident that was from breast reconstruction the week before, read on internet bruising/damage to body tissues can make those numbers high, suspect I'm right since numbers are going back down.

Anyone with pull to get me into GP2 trial please contact me. Thank you. Wishing all a New Year of improved health and happiness.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

What is GP2 and who is the company that is making the material? I do not know what I can do, but it cannot hurt to let me try.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Not forum savvy yet, but a link that seemed to be key to all you wanted to know about GP2
http://her2support.org/vbulletin/showthread.php?t=62307

NCT00524277
https://clinicaltrials.gov/ct2/show/NCT00524277


I also got this email too:
Hi!

I just signed the petition "Director Mark Scher, Ph.D: Save lives! End the lawsuit so preparations for a Phase III Clinical Trial of the GP2 Breast Cancer Vaccine can begin with an IND." on Change.org.

It's important. Will you sign it too? Here's the link:

http://www.change.org/p/director-mark-scher-ph-d-save-lives-end-the-lawsuit-so-preparations-for-a-phase-iii-clinical-trial-of-the-gp2-breast-cancer-vaccine-can-begin-with-an-ind?recruiter=200401321&utm_campaign=signature_rec eipt&utm_medium=email&utm_source=share_petition

BUT I REALIZE this post is diverting the thread from side affects. I don't know how to stop that so GP2 stuff should maybe go to that first link above. Don't you wish I could remember how to do this stuff. So sorry

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

I had a postmenopause BC diagnosis at age 53. So I was 3 years into menopause when I began Chemo and Herceptin in 2013. I was immediately taken off of chemo as one treatment put me in ICU for 3 days, plus a 6 day hospitalization due to near Fatal Neutropenia. Supposedly, I was within hours of death per the doc. I was kept on Herceptin for 13 months. My last dose of Herceptin triggered an allergic reaction, which also sent me to the ER for treatment and release. I had to stay on steriods for 1 month following the Herceptin reaction. Herceptin will no longer be a treatment option for me in the future. Herceptin is not the "marshmallow" drug I think they'd like it to be perceived as. My doc would never blame Herceptin on anything, until my final dose when I was swollen up and covered with hives. She constantly would say that the drugs put me into menopause early, inwhich I would remind her that I was already 3 years into menopause. Where is the research on the postmenopausal women?

During my course of treatment: itching, severe body aches, vomiting, weight gain (not a hand to mouth issue either), nails rotting off, extreme fatigue, sleep issues, high cholesterol, the inability to keep eyelashes, and anxiety to name a few. I've been off for nearly 6 months and still have thin nails, fatigue, and weight issues.

Here is my biggest complaint....the weight issues. During my treatment, I ate a healthy low fat, low sugar diet and would walk 2 miles a day. Regardless, about 6 months into my treatment I started on what seemed like an overnight 12 pound weight gain. My concerns with my doctor were met with the "menopause" theory, but I was postmenopause. I managed to lose 10 pounds post Herceptin by major caloric restrictions and exercise. To maintain this weight loss, I've had to increase my exercising and continue to restrict caloric intake. My intake is way below my recommendations for my age and height, at 1550 per the Mayo Clinic. Maintaining my current weight is a nightmare and all consuming. Due to severe orthopedic issues from a car accident and degenerative joint disease, I'm not sure how long I can maintain current exercise routine. Plus, I need to keep my weight in check due to my skeletal and joint issues. The math does not add up for weight issues. It is like my metabolism was shot to death. My cholesterol is completely wigging out and my average daily intake is less than 200 mg a day. I majored in Nutrition in college, so I am very aware of what goes in my mouth. Very befuddling. I am greatful that I had the option of this treatment, but I would love it if the oncology community would start making some admissions on this drug.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

I was able to eat ALOT while on Herceptin, in fact since I could not sleep I ate at 2:30, 4:00, etc. to keep weight on (only part of whole ordeal that I liked). Had a month and a half off of everything between last Herceptin and tamoxifen, then once started tamoxifen I had to change cloths and sheets throughout night, and could gain 12+ pounds overnight (diet was down to 800 a day, no carbs, no cholesterol, basically not healthy just greens and sardines). I restricted fluid intake to 2 cups a day and lost the weight quickly with several sweat producing workouts a day. But even 6 oz of watermelon would result in 10 pound gain within hours. So I attribute it all to tamoxifen. I changed my tamoxife to 10mg am and 10 pm (split daily dose into 2 halves a day) and the weight over a few weeks melted off but still NO CARBS and still restrict fluid. I have been off tamoxifen for a week in prep for a surgery and I again can eat whatever I want, lost 12 pounds in a few days without trying, and SLEEP at night. The cruel part is nobody tells you that once lashes, hair, eyebrows grow back that you nearly lose them all again every three months (for how long this goes for I don't know, but top of my head and comb looks like I'm on chemo again.) Yes, folks can say that is due to the diet/fluid restrictions I had myself on to maintain weight, but it was done within nutrition guidelines and watchful eye. So between now and 2 weeks after surgery I'm going to eat out (but healthy) and enjoy this window of NORMAL. Co-survivors I asked also had the weight gain with Herceptin, but then again they didn't get the incredible near wheelchair needed pain and such from it either like I did, in fact I'm still trying to get brain, spelling, math, balance, etc. back. Weight gain, hair, nails is NOT from postmenopausal stuff ... it IS THE MEDS.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

I am on Herceptin and perjeta every three weeks for well over a year now and have not had a problem with weight gain. I do get the drippy nose, I call it "surfer nose", which causes scabbing on the internal edges of my nostrils from them being constantly moist. I would say that is the most annoying side effect. I was diagnosed stage IV at original dx in November 2013 so I started with six cycles of taxotere, Herceptin and perjeta. That was a nasty six cycles that resulted in a syncope with six stitches to chin and four cracked/chipped teeth. My onc wanted to add two more cycles but my body just couldn't handle anymore taxotere. Since dropping the taxotere it has been much easier, I am able to maintain a lot of my physical activities and have better energy. I did lose close to 30 lbs during the first year but am now able to maintain my weight. At times I do feel foggy and tired and I am not sure it is related to the drugs as I am experiencing elevated liver enzyme levels and bilirubin levels. My gastro dr is working with me to thoroughly investigate the cause of these levels. My onc has blown off these elevated counts as being possibly Gilbert's Syndrome. The one thing I have truly learned in the past year is that you have to be your own best advocate. The doctors we deal with as cancer patients are very specialized, they deal with only what they are trained for! Think outside the box.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

I'm reading today's posts in this thread with great interest and heartfelt sense of sisterhood. Clearly we are each different. Our cancers (though they fall into similar categories -- mine 4th stage post menopausal age 50 in '95 w/recurrence in '98 and discovery of newly tested HER2+ gene). Everyone's body reacts different to same meds. Yes, Colleen, WE MUST BE OUR OWN ADVOCATE. Each doc, though brilliant, is a particular brand of "hammer" and sees you as a "nail". We must think outside the box.

cvaughn's symptoms might be related to chemo. I learned that many of the after effects of Taxotere, for example, lasted for years. I would say to my beloved onc (fav of 5) "I know this sounds crazy, but..." He would tell you no you are not crazy. I have patients reporting the same thing years later.

The Taxotere left me with a pleural effusion and a peri cardial effusion which was as one would expect horrific. Could barely walk or talk, literally. Whispers. Tripping. Deep pain in my limbs, burning soles of feet. Nails blackened and lifted with oozy crusty stuff exposed. Tearing constant. Eye pain (like shards of glass in them), drippy nose STILL. Nose bleeds first thing in the A.M. Ayr , btw, helped this.

Nausea, blah, blah. Absurdly weak. Sleep issues since forever. Ativan. Ambien. Natural supplements help immensely. Did prophylactic dose (1/2) of Fosamax when osteopenia spotted in bone density. Prayed to stop the deterioration. Instead -- my bones are now beautiful I am told, and I am now 70!

Then I did 10 yrs of Herceptin which was okay for me. Weight issues. Nose, eyes STILL. Nails now weak, thin, split vertically but I use a weekly hardener. Eyebrows never grew back. Lashes that were thick now sparse. Hair grew back BUT... Way thinner, frail, split ends, receding hairline.

I know pp who have horrid reactions to omeprazole (for reflux) whereas most tolerate it well.

If you know me, I still take my dozens of supplements (per Dr. Gaynor in NYC) and drink about 8-10 glasses of water a day. Chronic IBS since first chemo (Adria and CMF) which prevents me from eating a longgg scroll of lists of foods I cannot seem to tolerate -- many of which I love and exist EVERYWHERE.

But, I am healthy and well, cancer free. STABLE since '99 and genuinely grateful with every fiber of my being.

I wish you all wellness! Stay connected. We learn more from one another than anywhere else. The chemo nurses and other patients in the 10+ years in the chemo rooms in NY and Fla were a source of immense knowledge, enlightenment and benefit.

With Love and Light,
Andi

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Thanks, Andi BB! You are amazing! Such an inspiration for someone who is just starting out on this hard road.

I am really against doing more chemo, at least at this point. My onc here in Asheville recommends I go on Herceptin and Perjeta, which worked well on my breast tumor, but I'm worried that the experts in Chapel Hill will want to add a chemo drug to that. Had Taxotere, Carboplatin and H&P last year, and was not a fan! Of course, if they think it will make a big difference to the outcome, I would do it. The thing I am realizing, though, is that no matter how much the docs know, there is so much they don't know about this disease, and it makes me feel better to remember that I am in control of my care, and that it's always my decision.

All of this is made more surreal by the fact that I feel healthier right now than I ever have. Doing yoga three times a week, juicing massive amounts of veggies, taking supplements, exercising, meditating... And yet, there are these tiny little nodules hanging out in my lungs.

Thank you so much to all of you on this site, for your support and your generous sharing of your experience! It makes me hopeful in a very dark time.

Cheers,

Katherine

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Hi i have 4 rounds of chemo and 18 radation treatments and had 4 rounds of herception was suppose to have 18 herception 1 every 3 weeks.It had to be stop because my heart function went down from 47% to 34%.After servely months still no change in heart function .So now its stop all togather.I had heart problems before i started chemo and herception ,Now i very nerves about maybe it was a bad choice to have herception at all.My heart function is causing me to be very tired and no energery at all Since my function is so low,
What do you think of me getting herception knowing i had a lot of heart issues before breast cancer,will it every go back to normal or am i left with low function for the rest of my life

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Has anyone had lung issues with Herceptin? I have been on it for over 5 1/2 years now and my heart function has remained strong, however, I am beginning to have ongoing congestion and fluid in my lungs. Anyone out there having an issue with this?

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

I received 16 doses after 6 rounds of TCHP, with a seventh dose of Perjeta. I noticed:

Slowed hair growth -- even after I kept most of my hair by using cold caps

Fatigue

Irritated nose lining with dripping
Migraine symptoms after 11th dose which I had never before experienced ever. I had ocular disturbances that lasted for a good part of an hour without headache symptoms

Aching limbs -- this lasted the final three rounds until I called it quits at 16 of 18 doses. The MO had no recommendations

Bad reaction to radiation treatment - it was suggested by the nurse that patients on Herceptin seemed to have stronger reactions to treatment. I healed up pretty quickly after thankfully, minus a little fibrosis.

Weight gain - not sure the cause but I did slow down a lot during rads. I gained 10 lbs in a month and couldn't lose it even though I wasn't on hormonal therapy and my menses returned. I even had my thyroid checked which was normal. Herceptin might have contributed. Six months later I fit back into my old clothes again.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Not sure if this thread is still being monitored but wanted to put my two cents in. I was re-diagnosed with er-/pr-/her2+ MBC in May of 2015. I did six months of weekly Taxol/Herceptin/Perjeta. Then six rounds of radiation. Now on Herceptin/Perjeta every three weeks indefinitely. All told I have been on Herceptin/Perjeta for a total of 16 months. M y side effects are below:

1) more at to get infections from hangnails, pimples etc.
2) Achy joints, feet, ankles, and legs
3) issues with runny and crusty nose
4) diarrhea for the first couple of days after infusion
5) Increase in pimples and acne (I'm 46)
6) Memory issues
7) slight depression
8) lack of sex drive (Worse than when I was on Chemo)
9) Vaginal dryness
10) Charly Horse cramps in my legs and feet on an almost daily basis
11) Slow hair re-growth

Planning on discussing these issues with my doctor this week. not sure there is much they can do. I do need to start working out. I am p0lanning on adding yoga and walking to my schedule this week to see if it helps.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

@jksomas I still receive herceptin and perjeta every three weeks. My nose was very runny for awhile after I stopped the taxotere. Looking back I attribute this to hair loss all over the body including the hair in your nostrils which filter air and catch moisture. It was an uncomfortable process as those hairs grew back but the drippy nose did eventually subside. My joints are achy at times but I do yoga and swim regularly to help with that. As for cramping my oncologist recommended magnesium, since I added that to my supplements I no longer have random cramping. My hair grew back slowly but it did grow back, however my eyebrows and eyelashes never came back and I am over two years out from the taxane.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Oh and vaginal dryness and sex drive yup yup yup. Sex drive gone and hello vaginal dryness.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Jkosmas,

Your laundry list of SEs is par for the course in this household, every. single. one.

Let me know if the yoga helps. I'm not sure I could do yoga, I can't touch my toes anymore because of my back.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Tracy--look into chair yoga and restorative yoga. Restorative is just poses done on the floor that you hold for a long time. Nothing much seems to be happening, but it's really good.

I had all those side effects except vaginal dryness and loss of sex drive. I remember pimples and infections in my fingers from hangnails. I realize now that finally went away.

Someone told me when I get foot cramps or calf muscle cramps at night, which is when I got them most frequently, to just stand up. It works.

I used to have a constantly running nose. Sometimes I still do. I also used to get big dry clumps of mucus in my nose, and more nosebleeds. That's all better.

I also used to have diarrhea all the time. For years. By some miracle, that recently resolved. I have been having completely normal bowel movements. I cannot account for it. Before, I carried Imodium with me wherever I went and when I started to notice the rumbling in my gut I'd take one, and was usually able to head it off.

I think walking is good for just about everything.

I get achy joints off and on. Abraxane caused such severe pain after infusions that for several nights I had to take an opioid pain killer so I could sleep. Now if it's bothersome I take some Ibuprofen.

I'n 5 1/2 years older than I was when I was diagnosed (YAY!!!) so I figure some of this stuff might be happening anyway, cancer or no.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Amy, great information, thank you! Getting old isn't pretty but we are oh, so grateful for the opportunity. :)