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

[Kroesen]

I have decided that one cannot tell what side effects are from which drugs. After working with an allergist and starting steroids and antihistamines, I figured out what gave me my skin reaction. I broke out an hour after they placed heparin in my port. It may not have been the Herceptin after all. So if there is anyone out there that is having similar issues, please don't right away focus on one med. Thanks for all of your responses. Two RADS left and then 6 more months of Herceptin.

[mbhamel]

I am 51 years old. I am getting many of the same symptoms in the previous posts here. Heavy legs, low back pain and tingling, very congested nose, slowed thinking and forgetfulness, night sweats not really sweating just terrible hot flashes waking me up in the middle of the night and can't sleep those only started since getting the Herceptin every 3 weeks. My nueropathy from the Taxol/Herceptin is still there in my hands and feet. My EF went from 62% when finishing AC down to 55% at my last echo. My oncologist called last week and said my Alkaline Phosphatase is also elevated and she wants to run some different blood tests when I come back to see her in three weeks. I just hope it's not mets to the liver or bones. I saw a couple of other posts saying that has happened to them and turned out to be not mets. I had my transplant surgery a week before that blood test so don't know if there was any meds in me from that still. I am thinking of asking my onc. to change it the Herceptin to every week to see if that makes a difference. But, I can live with it hoping the Herceptin is keeping the Cancer from spreading. I haven't had any scans or anything since last April so I'm keeping my fingers crossed and praying very hard.

Some other medications I am on is1mg of Ativan to help with the sleep issues. I have a script for 5mg of Hydrocodone but I took them very sparingly, Advair inhaler for Athsma, Fluctisone Nose Spray, and iron supplements.

[oregon]

I started Herceptin along with chemo in February '11. After surgery, I resumed Herceptin treatments and will continue them for a few more months. Originally I was on Herceptin every three weeks, and a month ago I moved to weekly treatments because the oncologist believed that my body may not take such a hit, if the herceptin was consistently in my system at a lower level.

I experience muscle weakness, stiffness in joints, and possibly bone degeneration - one of the my docs said it was degenerative :-(. I mainly deal with fatigue the day after the infusion

[pmm10414]

I did the same. There are some articles on Internet that state weekly dose is better because it keeps constant dose in body. I had same symptoms even with weekly dose, but I can't imagine what it would have been like with larger dose every 3 weeks.

[YNieves]

I was on Herceptin for a year, completed in 2010. 3 months later I had a rash on my chest which turned out to be local reoccurrence. I took Xeloda and Tykerb, I finished in the Xeloda on 8/2011 (and stayed on 1250mg of Tykerb daily. Most recent Petscan (1/2012) shows I have a 1.4cm lymph node on my axilla on the right side. All previous cancer was on left and chest wall. Onc. is thinking of putting me back on Herceptin and staying on the Tykerb. I am Ner 2 neu, Er/PR neg. My 1st Herceptin infusion, I had an anaphylactic reaction and was rushed to ER. I had to be desensitized to herceptin before I could accept it, 6 months later. Can all this posion in our bodies be making things worse.? I have had lumpectomy, mastectomy, radiation (twice) and hypothermia. Cytoxan, Taxotere, then adriamyacin and cytoxin. Herceptin for a year alone, then navelbine. Xeloda, Tykerb. Original Ca was DCIS in 2004. Cancer returned in 2009 as Her 2 neu. My side effects have been minimal on the tykerb alone. Very itchy dry skin on lower legs. Some fatigue. Rash around ankles (red spots?) I'll keep you posted once I start Herceptin/tykerb combo. Probably won't be till March.

[sarah]

Are you on Femara? Femara caused bone loss for me and I took Clastoban to help my bones.

[hello sunshine]

I'm on my 11/17 herceptin. i'm having bad reactions, (last 2) very sore rash, breathless, splitting nails, weight gain.Some joint pain. I'm going to keep going untill i've had enough as it's making me unwell. My team are monitoring me.

Hi ,

My mother took herceptin injection 10 times. Since last three days she is feeling with neurotic problems like drowzy ness and feeling tired. She is behaving like loosing some memory. This was happend after she gets her 10th herceptin injection. So can we continue the treatment further or not? Please suggest me.

[MCS]

Please check some of my earlier responses. I took Herceptin right after it was approved, thank God, just in time. For me there was no choice of once a week. I took it every three weeks.
I did suffer from severe bone ache that could not be taken away with heavy meds (vicadent.etc). Instead, Ibuprofen worked and lying on my side in bed. this was usually the first week afer treatment. So that's it, you have to bear it-think of those that did not have this herceptin
As to bone loss, well because of my age (56now), that occurred any way and I also have had my ovaries removed. Yes it has happened more rapidly if the big C did not occur.
As to hot flashes, I had them before and actually improved afterward. I started at 40!
I had chemo brain from the Adryicin treatment and to tell you the truth, I still have some chemo brain-it's just not an excuse that I forget things.

But I took it all like a girl, because I rather deal with all this and know that my cancer is held back for a while.

Use meditation, breathing, camomile, listening to favorite music softly in your room for the pain. Hot flashes, I know you sweat like a pig and then cold, but all of us girls go through that.

Truly it is my sincerest wish I had a magic wand and pass it around all of us and get rid of all of this. And not just for bc, but my lymphoma girlfriends, my bone cancer girfriends and so on....

God bless all of you. Press on this fight.

xoxo

MCS (maria)

[kstrahm]

I have been taking Herceptin for 6 years now. I was diagnosed right off the bat at 30 years old with stage IV with liver mets and started with Taxol, Carboplatinum, Hercptin and Femara as well as the Lupron shot to put me in menopause. I started all of that in April of 2006 and did that until Dec. 2006 at which time I switched to Herceptin only along with Femara and the Lupron - since that time I have recently had a hysterectomy so no more lupron so I am currently taking Femara and weekly Herceptin. I am starting to feel more side effects from the Herceptin - the day of infusion I get a headache with severe stuffiness and pressure in my head and am achy in my upper back and shoulders as well as knees - the most concerning thing I have noticed lately is little zings and pings all over my body which feels like needles poking me - it only lasts for a few seconds and then is gone - also I have burning and numbness on the palm of my hands and on my feet which is now starting up my leg - this seems to last almost up until the next infusion. My regular doc does not know what would cause this and has given me gabopentin to treat the effects. I will see the onc on April 2 and will see if he thinks we can take a break or if we need to press on - I am scared that these symptoms are neuropathy and if I keep taking it that it will get worse - however by stopping the Herceptin I also am scared that the liver mets will take hold again. So not sure what to do. Any advice or input would be appreciated. Thanks girls!
Hugs to all

[lizely]

I did TC x4 and H x12, finishing up this past February. My side effects were minimal - a small amount of neuropathy from the TC.

However, I have noticed that my blood pressure has risen considerably this past year and am concerned. It was always low and now it is high. Could this be due to Herceptin? (I am discounting other factors aside from a year of aging, as my diet has remained the same and I am a regular exerciser).

Since MUGA scans register your heart efficiency, if your heart can decrease efficiency from Herceptin, how does that affect your blood pressure? Does it affect both your diastolic and systolic levels? Will your heart efficiency return?

Need some help here.

[NEDenise]

Lizely,
I have experienced a similar change in blood pressure. I used to hover around 90/60...but since beginning treatment, have been in the 125/80 range. While it's not high for the average person, it's a BIG change for me. The cardiologist put me on meds, and my pressure is down where it belongs. Taking the "strain" off my heart has also made my EF start to rise again.

I'm not sure...but my docs seemed to think this was not an unusual turn of events. Is it possible for you to consult with a cardiologist?

Hope this helps!
Denise

[oregon]

Hi everyone!

I just completed Herceptin last week . . . hurray! And I'm beginning to feel some relief already. So I encourage anyone that is still on this drug that is does get better!

I'm 53, was postmenopausal and had great health at the time of diagnosis 12/21/10. Stage 1B, I had neoadjuvant therapy (abraxene, carboplatin, and herceptin) from 2/3/11-5/31/11. Bilateral in June '11 (no node involvement) and in July '11 continued on Herceptin. My oncologist said the clinical trials all involved adjuvant therapy, so he wanted me on the drug 52 weeks "post" surgery. I did last 9 months post surgery plus the 3.5 months prior to surgery.

In July, my Herceptin treatments started out every three weeks and in November '11, I moved to weekly treatments due to side effects. I experienced increased neuropathy in my feet (numbness), much more so than during chemo, and this continued until I completed the herceptin. I was tripping, had very little small muscle control in my feet and I'm already seeing improvement in just one week off the drug! I have weakness in my legs and joints. Getting to/from a sitting to standing position, I felt like I was 90. Thin nails, and at the tops of my fingers around the nail - I had severe cracking. Any little cut on my hand(s) it seemed at though the pain was amplified. When I think of this along with the increased neuropathy, I believe this drug somehow affects the nerves.

Thank you for collecting this information.

[Alyce]

Hi again-
I am wondering about Femara. I never had high cholesterol until post radiation, post, Herceptin,post chemo. I am in the 4th year of Femara and haven't run into anyone to ask about whether any joint pain has disappeared after the 5 year mark, stopping Femara. My Dr. doesn't want me to take any statins so I am hoping the cholesterol will also go down. I ended up writing a cookbook as a result of drastically changing our diet to healthy wondeful organic food. Can't blame the diet for the higher cholesterol.

[tryingtohanginthere]

I am getting ready to begin Herceptin and was curious about the side effects. I just finished 6 rounds of TCH, and will continue with Herceptin every 3 weeks till December. I am worried now about all the side effects.

[laurab]

I had my last Herceptin infusion in February 2012. I was never on any type of chemo.
My only side effects were the finger nail splitting and breaking and an occasional drippy nose. I have had 4 heart tests and all have been fine. My blood pressure has gone up , but I attributed that to the stress of it all. I wouldn't worry about Herceptin side effects.
Most people have not reported any severe side effects.

[potra]

62yrs old, menopausia at 54, dx IDC april2011, lumpectomy July2011, er-/pr-, Her2+ sentinal nodes-, 8 cycles TAC/3WEEKS,
Herceptin/weekly. Dx bone mets Oct2011 and added Zometa to tx. After terminating chemo por febrile neutropenia, continued with herceptin +Zometa/3weeks up to now. New symptoms since finishing chemo-hot flashes, slow hair growth. Runny nose, crusty eyes, blurred vision in the afternoon, fatigue. I can't evaluate respiratory effects because I have COPD but I'm much more prone to bronchitis episodes since starting treatment-4 episodes in 10 months, 2 of them since off chemo and with white cells back to normal. Bloated stomach-I call it Herceptin tummy.

[Kroesen]

I have almost completed my first year of "Survival". Next week marks a year that I have had a mastectomy. For you ladies/gentlemen that are just starting the process, know that you will get through this. It will be day by day, step by step, minute by minute, and sometimes second by second, but you will survive.

I thought I was allergic to the Herceptin. My whole body was one big rash and was very painful. I went to a allergist and they put me on all kinds of allergy meds and a steroid. It turns out that I was allergic to the Heparin that they put in my port. If you have a rash, write down everything that you do. I'm told it is very rare to be allergic to Heparin, but I'm glad to have figured it out. I was determined to keep taking Herceptin.

So, as for side effects of Herceptin, I would say sore joints. This is nothing in comparison to everything else.

Good luck to all of you who are starting the process. You WILL get through this and be a stronger person when you're finished with treatments.

God is good-ALL the time.

[pmm10414]

Hot flashes were terrible. Within 10 minutes of starting they would start.

[Andrea Barnett Budin]

Itchy red rashy full of fire burning on my upper outer arms. Needs urgent immediate response!

Ice, water as hot as I can take it, camphor gel, Benedryl spray and Benedryl (2) nightly -- helps.

After 1 yr the red rash remains but the pain is gone.