Herceptin only
 

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

Re: Herceptin only
 

Mom had the herceptin nose and bladder urgency.

Re: Herceptin only
 

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

Re: Herceptin only
 

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

Re: Herceptin only
 

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!

Re: Herceptin only
 

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......

Re: Herceptin only
 

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.

Re: Herceptin only
 

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.

Re: Herceptin only
 

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

Re: Herceptin only
 

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!

Re: Herceptin only
 

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

Re: Herceptin only
 

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?

Re: Herceptin only
 

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

Re: Herceptin only
 

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!!!

Re: Herceptin only
 

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!!

Re: Herceptin only
 

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!!"

Re: Herceptin only
 

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.

Re: Herceptin only
 

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.

Re: Herceptin only
 

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.

Re: Herceptin only
 

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).