Herceptin only

[laurab]

I would like to hear from those who have had HERCEPTIN only with no chemo of any kind before or during treatment. I am a little more than 1/2 way through and have had very few side effects. These are some I've noticed:
. fingernails peel, crack , and split
. drippy nose - occasional , not related to any allergies or cold
. possible connection to bladder infections

I've had no fatigue

[Rich66]

Mom had the herceptin nose and bladder urgency.

[kykeon22]

My mom had been on herceptin for 2 1/2 year, she had no side effects at all except a litthe coughing.

[Pmoore]

I have been on Herceptin only for a little over a year.Very little side effects,but I definitely have the finger nail issues.

[Lani]

Please add this to the regarding side effects of herceptin real or imagined as
your experience is very important to share as those who have had herceptin with/after chemo or antihormonal therapies are unable to be sure which side
effects came from which drugs/their effects.

Drug companies are supposed to do post-marketing research to determine the side effects of drugs once a much larger population starts to take them (clinical trials involves a few thousands only usually) They don't seem to be stepping up to the bat, so what you fine ladies list here could be used to supplement what they do not seem to be doing with any gusto.

Thanks!

[tenngal]

Hi, I am so glad I found this thread. I have a few questions for some of you. I was diagnosed October of 2010. My tumor was .8 cm so I opted for Lumpectomy. Er+ and HER2. My Surgeon and several oncologist wanted me to do chemo with herceptin. I had 5 opinions and finally found an onc that was willing to do Herceptin only. I did not feel I needed Chemo. the only reason they wanted me to have it was that they had never given it without Chemo. I had no lymph invasion. Underwent 7 weeks of radiation. Started Arimidex and Herceptin the same time as radiation. December 13 will be my last Herceptin treatment. My question is about the Herceptin side effects. I was perimenapausal at diagnosis. Haven't had a period since summer of 2010. My estrogen levels indicate I am definitely menapausal now. Arimidex gave me such bad joint pain I was switched to Aromasin. Peeling nails, hair thinning like crazy, drippy nose, sensitive skin, joint and muscle pain are the side effects I am feeling. Is this the Herceptin or the Aromasin? I am 5'4" and was 115 pounds at diagnosis. I have gained 25 pounds in the last six months. I am a vegetarian and strictly organic. I have never had a weight problem. I am the single mom of an 11 year old boy and have the energy of a 90 year old. It is so depressing not just for me but for my son. I am not the same mother. I have recently developed a problem with the tendons in my thumb. It is so frustrating. I have actually thought about getting off of the AI and going with a more homeopathic treatment of Brevail. Has anyone used this? All I know is that I can't live like this for the next 4 years. I feel guilty complaining. There are so many of you that are experiencing worse symptoms and going through harder treatments. But if you have any advice please tell me. I supplement with D3, Biotin, Selenium, Calcium and multi vitamin. I am really big on coconut oil for everything. All organic for skin and hair. I just can't settle for this to be my new "normal." Will some of these symptoms subside after the Herceptin is over? Is the AI or a combination of both.

Many blessings to you all......

[ElaineM]

Seattle sounds great to me. I think it would be a good opportunity if you can arrange it, so you are not away from home too much. It would be nice if you can have your appointments on the same days the other ladies on our site have their appointments. I have always had respect for the work the University of Washington Tumor group does.

[laurab]

My oncologist told me that , in my case, having chemo. with the Herceptin would increase my chance of cure by 1%. Yep - just 1%.
I figured that 1% was not worth the harm that chemo would do to the rest of my body. As to side effects , I do think most of my problems are due to the Arimidex , not the Herceptin. Since I also have arthritis it is often difficult to tell what is causing the joint pain.
I have been trying to lose weight and actually lost 12 pounds since going on Arimidex and Herceptin. I have had terrible hot flashes but find that acupuncture helps quite a bit. I am also taking Vit.D and fish oil. My lab tests did show that my Vit. D level was quite low.

[Hopeful]

I am sorry I did not see this thread when it was first posted; I was consumed with running a conference at the time.

I was dx at age 52, postmeno, 1.3 cm, node negative, ER+ 80%, Pr+ 50%, Her2 +++ by IHC in June of 2006. My path report gave my Ki-67 as "11% (borderline)". As this is an indication of the rate of proliferation, which was low, and being post meno and highly hormonally positive, my research indicated that I would receive a very minimal benefit from chemotherapy. My oncologist offered me a year of Herceptin w/o chemo, which I did. I had radiation to the affected breast that started around the time the Herceptin tx did, and went on AI's after rads were completed.

The SE's I noticed from Herceptin were the thinning and splitting fingernails and the drippy nose. While my fingernails returned to normal after my tx was completed, I am sorry to say the drippy nose has not. I never had nausea, diarrhea or any gastro symptoms from the Herceptin; I would notice a weird taste in my mouth during and immediately post infusion that was like the glue you lick on the back of an envelope, but that passed.

The SE's from the AI's, on the otherhand were worse, LOTs of joint pain, wrist pain, terrible vaginal atrophy, and tinnitus. The stiffness and paid would improve for a short time when I switched AI's from Femara to Arimidex, but then return. I switched between the two at least 4 times, and determined, also based on my research, that being Her2+, I would derive less benefit from hormone therapy than those who were Her2-. I stopped AI treatment after exactly 3 years. All of the stiffness symptoms cleared up when I stopped the AI, and have not returned. The vaginal atrophy continues to be a problem, and the tinnitus never resolved.

I hope this is helpful.

Hopeful

[tenngal]

Thanks for your reply.I seriously am considering getting off of the AIs......Have you ever heard of Brevail? You can google and read. it is a High Lignan product put out by Barlean's. It's very interesting. O am going to speak with my onc this Friday. I just can't handle all this joint pain. My quality of life is horrible. I have tried Arimidex and now on Aromasin. I don't feel like switching anymore. They all have side effects. My wrist is also in a aupport sling right now. I feel like it could be trigger thumb or something similar. My muscles all feel like I have run a marathon and I can't get out of bed in the morning. I went from being this vibrant fit person to feeling like I was 99! My 11 year old son is really feeling the brunt of it. I also have tinnitus but that was present before now just getting worse and constant. I have only been on it for a year. I did radiation.....the year long Herceptin and a year of AI. I am just really depressed and want at least half my life back. Read about the Brevail.......I need another opinion coming from someone in the "same boat." thanks!

[Hopeful]

Tenngal,

I had never heard of Brevail. The information on their web page is interesting, but I am inherently suspect of the business aspect of marketing health products to people. (Doesn't mean that this is not a good product, it is just my personal bias - I feel the same way about Rx drugs marketed to the general public). I would be most interested to hear what your oncologist has to say about it.

Best of luck to you,

Hopeful

[Mtngrl]

Some alternative/complementary cancer therapies have been tested in clinical trials. Most have not. Homeopathic remedies are inherently irrational. Why would something work better the less of it you use?

[Jackie07]

Couldn't find any non-commercial website for Brevail - except one clinical trial that began half year ago. Turned out it is just another name of the lignan of flaxseed. Should be cheaper just use/eat flaxseed:

http://clinicaltrials.gov/ct2/show/NCT01396369

[mabrooks]

I had Herceptin only in 2007 for a year - I had a small tumor - no chemo - same issues - runny nose - nails were a mess and my hair was just different, didn't lose it it just changed - but cancer free!!!

[Unregistered]

Hi, estoy desesperado buscando donde puedo conseguir a precio economico la vacuna de herceptin para mi madre!! si alguien conoce un dato me avisa por favor!!

[Jackie07]

Translation:

Hi, I'm looking desperately for places where I can get cheap Herceptin treatment for my Mother!! If anyone knows please give me advice.

"Hi, estoy desesperado buscando donde puedo conseguir a precio economico la vacuna de herceptin para mi madre!! si alguien conoce un dato me avisa por favor!!"

[Mtngrl]

Thanks, Jackie. That's about what I thought it said. Since the person didn't register, we don't know where the mother is, or anything else, unfortunately.

[Paty]

PodrÃ*a por favor indicarme en que paÃ*s vive y en que institución están tratando a su Sra. madre? Tal vez podrÃ*amos orientarle con alguna información. Gracias.

[Mamaju]

When is my hair going to grow back? I have peach fuzz and it just doesn't seem to be growing at all. Also, I've lost most of my fingernails. When do they grow back? I won't be done with Herceptin until May, 2013. Im done with chemo.

[Becky]

When was the last chemo? When I did have chemo, my last one was Jan 31 and by May 31 I had an ultra short pixie (and I mean ultra short).

[Mamaju]

I finished Taxol/Herceptin August 7, 2012. Went on Herceptin only Aug 28, 2012. My fingernails started lifting up off the nail bed about two weeks after Taxol. They look awful now. I had to cut the dead parts off because mold was growing under the dead parts. Gross. I also have Neuropathy in both my fingertips and toes. My hair is just a few individual hairs here and there.

[laurab]

I never had any hair issues when I was on Herceptin for a year. I think your hair issues must be due to chemo. or radiation. I never had chemo. and only had mammosite radiation. Also - I had a very small tumor , stage one.

[Mamaju]

I didn't have radiation and was also stage one but they found precancerous tissue and masses in both breasts when I requested a bi-lateral. I had made up my mind that I did not want a repeat of cancer popping up later. My oncologist and my surgeon were both surprised and happy that I made the decision I did because of what they found afterward. My hair came out with the initial 4-5 chemo drugs. The weekly Taxol/Herceptin has kept it from growing back. The Taxol has caused my neuropathy and diarrhea problems and my fingernails coming off. My main questions are how long after Taxol does it take for everything to grow back. I'm so ready to be normal again!!!

[Lbwagner]

I am starting Herceptin only....within a week or so. I am glad I found this thread. My Oncologist recommended Herceptin only due to the size (.5cm) and no lymph node involvement. I trust that she is making the right choice as I do not want this to reccur. I had a recurrence of DCIS in December after two years with a .5cm area of invasive that was ER+/PR+ and HER2+++. Very scary...however, I am so happy that it was taken out of me with the BMX in January. My Drs have acted quickly thank goodness as I have read how fast the HER2 cancer grows. Six months of waiting would have meant a much different story... Thanks for any other information you can give me on Herceptin. Best wishes to all of you.

Laurie

[Lisa K]

Hello my name is Lisa, I am 46 yrs old. I just underwent a double mastectomy. I am HER2 positive, IDC 1.5 cm, DCIS 10% of tumor, Stage 1, Grade 2, Paget's disease. No lymph nodes affected, distance from closest margin was 28 mm, estrogene & Progesterone less than 1% immunoreactive cells present.

I meet with an oncologist next week, and I am sure he will suggest chemo along with Herceptin. I would prefer to do Herceptin alone. Can you give me some feedback? Do you know anything about Herceptin now available in injection?

I found this lump in the beg of September so the last 10 weeks have been overwhelming, any feedback would be most helpful.

[Jackie07]

Hi Lisa,

Herre's a study on patients' preference:

Lancet Oncol. 2013 Sep;14(10):962-70. doi: 10.1016/S1470-2045(13)70383-8. Epub 2013 Aug 19.
Preference for subcutaneous or intravenous administration of trastuzumab in patients with HER2-positive early breast cancer (PrefHer): an open-label randomised study.
Pivot X, Gligorov J, Müller V, Barrett-Lee P, Verma S, Knoop A, Curigliano G, Semiglazov V, López-Vivanco G, Jenkins V, Scotto N, Osborne S, Fallowfield L; PrefHer Study Group.
Source
CHU Jean Minjoz, Besançon, France. xavier.pivot@univ-fcomte.fr
Abstract
BACKGROUND:
Subcutaneous trastuzumab has shown non-inferior efficacy and a similar pharmacokinetic and safety profile when compared with intravenous trastuzumab in patients with HER2-positive early breast cancer. We assessed patient preference for either subcutaneous or intravenous trastuzumab in the international, randomised PrefHer study.
METHODS:
Eligible patients were women aged 18 years or older with HER2-positive, histologically confirmed primary invasive breast adenocarcinoma, no evidence of residual, locally recurrent, or metastatic disease after completion of surgery and chemotherapy (neoadjuvant or adjuvant), an Eastern Cooperative Oncology Group performance status of 0 or 1, and a baseline left-ventricular ejection fraction of 55% or more before the first dose of trastuzumab. Radiotherapy or hormone therapy was allowed. Patients were randomised (randomly permuted blocks of four) to receive four cycles of 600 mg fixed-dose subcutaneous adjuvant trastuzumab via a single-use injection device or hand-held syringe followed by four cycles of standard intravenous trastuzumab, or the reverse sequence. Randomisation was stratified by de-novo versus non-de-novo use of intravenous trastuzumab. The primary endpoint was the proportion of patients indicating an overall preference for subcutaneous or intravenous trastuzumab, assessed by patient interview in the evaluable intention-to-treat (ITT) population (patients who completed both interviews and had at least one administration of both subcutaneous and intravenous trastuzumab). Data collection for PrefHer is ongoing. This study is registered with ClinicalTrials.gov, number NCT01401166.
FINDINGS:
124 patients were randomly allocated to receive subcutaneous followed by intravenous trastuzumab, and 124 to receive the reverse sequence. 117 patients in the subcutaneous first group and 119 in the intravenous first group were included in the evaluable ITT population. Subcutaneous trastuzumab via the single-use injection device was preferred by 216 patients (91·5%, 95% CI 87·2-94·7; p<0·0001). Only 16 patients preferred intravenous trastuzumab (6·8%, 3·9-10·8), and four had no preference (1·7%, 0·5-4·3). Clinician-reported adverse events occurred in 141 of 242 (58%) patients during the pooled subcutaneous periods and 105 of 241 (44%) patients during the pooled intravenous periods; seven (3%) and five (2%) were grade 3, no patients had a grade 4 or 5 event. The most common grade 3 adverse event was influenza (two [0·8%] patients).
INTERPRETATION:
Patient preference and safety results from PrefHer, combined with the known non-inferior efficacy and pharmacokinetic and safety profile data, suggest that a fixed dose of 600 mg trastuzumab administered subcutaneously every 3 weeks is a validated, well tolerated treatment option for HER2-positive breast cancer, and is the preferred treatment of patients.

Laurie,

There's a thread for members to report their side effect of Herceptin http://her2support.org/vbulletin/showthread.php?t=23696&highlight=real+perceived+Herceptin+side+effect