Questions about her2 +

bluedasher

Eve, I didn't get steroids for Herceptin treatments. I only got them while doing chemo plus Herceptin treatments. Did you get them this time because it was the first time? Are you going to have them each time? Most people don't get steroids for a Herceptin infusion without chemo.

Hindsfeet

Bluedasher...hey, I was surprised I was given steriods. I'm not sure which minor symptom concerned them enough to check my heart and other vital signs. Why do we keep needing the infusions? Do our gene keep making the her2+++ cell and is this why advance bc women continue taking herceptin? I'm still at herceptin, her2+++ 101 course

bluedasher

Yes, it doesn't all happen at once so a level of Herceptin needs to be kept in your system for a while. They don't really know how short a time will do. The initial trials were done with a year of Herceptin because they wanted to give long enough to be confident that it would work. I've heard that there is a trial planned to try 6 months vs 12 months (not sure if that is only for Stage I).

They sometimes use 18 weeks in Europe, but there isn't a test of that vs 1 year.

Steroids don't stay very long. - they should have been gone from your system in a day or two.

Hindsfeet

Well, after working all week and weekend company left, I was exhausted. I slept for a few hours before going to bed. I feared I wouldn't be able to sleep through the night as I haven't yet this week. I couldn't believe it...slept like a baby for 10 hours and woke up fatigued. I could hardly get out of bed. This is not me.  Still no runny nose...just slight sinus headache.

kerrberlady

Eve my exhaustion turned out to be low iron. I am now on vitamin b12 once a day. My dad has pernicious anemia, I will talk to my onc at next visit if iron is still low. But I do have to remind myself that I had major surgery in October and my body is still healing as well as the Herceptin infusions. But I think he needs to be aware of this diagnosis of my dads.

pejkug3

I was always exhausted the 3rd day after Herceptin.  I had infusions on Thursday and by Sunday, I slept all day.  No one else ever complained of this so I just figured that I was a wimp. 

Hindsfeet

Kerberlady, I take a lot of supplements and eat well so for me I'm not sure it's low iron. I was tired of course after surgery taking pain meds and all which is understandable. The last few weeks I've felt like my old self until the day of the herceptin infusion. It's nothing really you can put your finger on but to say just an overall fatigue or not feeling my best.  I called my oncologist nurse for the first time since the infusion. She did say being tired and having a sinus headache are minor side effects. Nothing to worry about. I hope it's not a year long side effect.

Life right now is mind over matter. Stay positive and take one day at a time...and only do what is necessary each day, and for me it's a lot.

Hindsfeet

How do you know the difference between herceptin side effects and heart attacks? When should you be concerned? I've dismissed my fatigue, chest pressure and sleep distubance as minor herceptin side effects.

Two weeks before infusion I was feeling great and now I' just don't feel right somehow. Anyone else feel this way through their herceptin infusions?

http://usgovinfo.about.com/cs/healthmedical/a/womensami.htm

Among the 515 women studied, 95-percent said they knew their symptoms were new or different a month or more before experiencing their heart attack, or Acute Myocardial Infarction (AMI). The symptoms most commonly reported were unusual fatigue (70.6-percent), sleep disturbance (47.8-percent), and shortness of breath (42.1-percent).

Many women never had chest pains
Surprisingly, fewer than 30% reported having chest pain or discomfort prior to their heart attacks, and 43% reported have no chest pain during any phase of the attack. Most doctors, however, continue to consider chest pain as the most important heart attack symptom in both women and men.

The 2003 NIH study, titled "Women's Early Warning Symptoms of AMI," is one of the first to investigate women's experience with heart attacks, and how this experience differs from men's. Recognition of symptoms that provide an early indication of heart attack, either imminently or in the near future, is critical to forestalling or preventing the disease.

In a NIH press release, Jean McSweeney, PhD, RN, Principal Investigator of the study at the University of Arkansas for Medical Sciences in Little Rock, said, "Symptoms such as indigestion, sleep disturbances, or weakness in the arms, which many of us experience on a daily basis, were recognized by many women in the study as warning signals for AMI. Because there was considerable variability in the frequency and severity of symptoms," she added, "we need to know at what point these symptoms help us predict a cardiac event."

Women's symptoms not as predictable
According to Patricia A.Grady, PhD, RN, Director of the NINR, "Increasingly, it is evident that women's symptoms are not as predictable as men's. This study offers hope that both women and clinicians will realize the wide range of symptoms that can indicate heart attack. It is important not to miss the earliest possible opportunity to prevent or ease AMI, which is the number one cause of death in both women and men."

The women's major symptoms prior to their heart attack included:

• Unusual fatigue - 70%
  
• Sleep disturbance - 48%
  
• Shortness of breath - 42%
  
• Indigestion - 39%
  
• Anxiety - 35%

Major symptoms during the heart attack include:

• Shortness of breath - 58%
  
• Weakness - 55%
  
• Unusual fatigue - 43%
  
• Cold sweat - 39%
  
• Dizziness - 39%

dancetrancer

Evebarry, I believe the symptoms can be silent.  I would check with your doctor.  Perhaps they would be willing to run another echo early (they usually do them every 3 months, from what I've read) to reassure your mind.   Treating the mind on this cancer trip is just as important as treating the body.   I feel for you, as I know I will be having the same fears if I start Herceptin.  Just don't let those fears make you stop treatment, b/c you need to do everything you can to reduce your risk of recurrence - HER2+ is not something to mess around with.   And as you said, it definitely is mind over matter - I understand the mental struggle.   Talk with your doctor.  

lago

Evebarry you should always report every SE, no matter how minor it is to your onc. If they don't know that your brother had a heart attack your onc must know that too. Family history is important.

I only had the initial MUGA but didn't have any symptoms… but was questioned at every infusion about shortness of breath etc. My mom has no heart issues and dad didn't till he was 70 so really no heart issues to worry about. I don't know anyone outside of my treatment center that only got 1 the initial MUGA. Usually they do several during treatment. Granted I'm pretty sure I didn't get any damage from Herceptin.

voraciousreader

 

 Eve....Note the limitations of the study....the sample population had KNOWN cardiac disease and most were symptomatic BEFORE their heart attack.  Whereas, note, that they did ANOTHER small study that included healthy women, and way, way, fewer women were symptomatic. You mention that you were "healthy" before starting the Herceptin.  So, despite having symptoms, this sample population in the study DOES NOT apply to you.  Furthermore,  I'm assuming you got cardiac clearance before you started the Herceptin. Had you NOT gotten a "clean bill of health," I don't think they would have given you the Herceptin. Now that you ARE symptomatic, by all means, you should share that information with your physicians and let them decide if you need further cardiac evaluation. By all means, you should mention to your doctors about your family history. That's extremely important information that the doctors should know about. I'm also a little curious to know why your brothers didn't share that information with you before. My father's family have a long history of cardiac disease that my brother, sister and I have always been concerned about. We have always shared our medical histories with one another. IMHO, that is VITAL information that should be shared within families and with your doctors.

Once again, remember,THAT study explicitly says they don't know if the information has predictive meaning for the general population because the women in the study had a cardiac history. 

 

Limitations

Our convenience sample of primarily white women from

limited sections of the country may have limited generalizability.

This was a retrospective study of women

's selfreported

acute and prodromal symptoms. It is plausible that

women may describe symptoms differently during the AMI

or that certain symptoms stand out afterward, but life-altering

events such as AMI are often recalled in vivid detail.

33,34 We

do not know whether prodromal symptoms are predictive of

a CHD event. Because we enrolled only women with AMI, it

is unknown how many women without diagnosed CHD

experience similar prodromal symptoms. However, in a pilot

study

21 of a convenience sample of 100 self-identified healthy

women, 83% white and 17% black, the women reported a

mean of 2.74 (SD, 4.0) prodromal symptoms, compared with

5.77 (SD, 4.8) for women with CHD, a significant difference

(

t7.32, P0.000). Healthy women had a mean prodromal

score of 14.2

22, compared with 58.552.7 for women with

CHD (

t20.12, P0.000). These findings suggest that

healthy women experience fewer symptoms than women with

CHD.

SpecialK

I believe that most of the cardiac issues connected to Herceptin are congestive heart failure, cardiac function issues, as opposed to an actual heart attack or MI type event.  CHF is a usually a more gradual process, but any new or different feelings should be reported to your oncologist, and definitely a report on your family history is important.

Hindsfeet

AlaskaAngel

evebarry,

I've not done trastuzumab as you know, but I suspect the intensity of your symptoms is due to the first time being so extensive. Hopefully, now that each treatment will be less so, it should calm down.

A.A.

Hindsfeet

Thanks...I just got back from my therapist appointment. She is awesome! I mentioned to her my concerns and she asked if I've walked a lot since the infusion. I said since I've felt so fatigue, I do what needs to be done and no more. She said to walk everyday to get my system moving and to drink lots of water to flush out my system. Maybe this is part of the problem? I'm going to try to walk a few miles today and drink a gallon of H20.

Before going to bed last night I took a buffern. I slept much better.

lago

eveberry I will admit that I do walk every day and drink lots of water. Between chemo 4 & 6 I didn't walk so much and I felt like crap. Eventually I started again. Maybe that's why I didn't feel crapy on Herceptin. I still drink as much water as I did when I was on chemo too. Now I'm also adding strenght training (started last month). I'm hoping to get back to where I was pre-bmx by May or June. I want my abs back

Hindsfeet

•  http://www.cancernet.co.uk/herceptin.htm
• HERCEPTIN SIDE EFFECTS
• Fever and sweating
• Runny nose
• Chills
• Skin flushing - redness
• Tightness in the chest or difficulty breathing
• Discomfort in the throat
• Agitation

If associated with a fast pulse and lower blood pressure these symptoms indicate an early allergic reaction. As mentioned above if these symptoms are prominent the infusion has to be slowed down or abandoned altogether. To avoid a mild reaction often paracetamol and an antihistamine are given before the infusion. 

The ongoing effects may occur at any time whilst you are receiving Herceptin. These are usually worse a day or two after the infusion and could include:-

• Weakness, lethargy or tiredness
• Headache
• Sore eyes
• Joint pains
• Nausea 
• Diarrhoea
• Skin rashes
• Shortness of breath on exertion

According to this I maybe having more of an alergic reaction...as time goes on my side effects seem to worsen...from the list this is what I'm now experiencing.

Other side effects, I've experience or now experiecing is ....Shortness of breath on exertion, fatigue, nausia (sometimes), headache, sore eyes, general weakness, tightness in the chest...also difficult time sleeping (I usually sleep sound) ... and chills at times, and other times feeling very flushed. And...with a fast pulse and lower blood pressure these symptoms indicate an early allergic reaction. My blood pressure is usually low, but it went up really high during the infusion and I had it checked this week and again it was extremely high about 154.

If this means an allergic reaction should I continue taking it? Or are they just side effects you live with? 

suzieq60

Eve - were you given benadryl at the infusion? You should write all of this down and go and see your oncologist and discuss. Don't fall into the trap of imagining side effects just because you read them somewhere. Most of us have had no problems with it at all. Have you had your second one? You did say you were given a higher dose for the first, so maybe the second will be much better. I'm sure they have something they can give you to alleviate any SE's.

((((((((HUGS))))))))

Sue

Hindsfeet

Sue, I am not making up the side effects. The reason, I listed the side effects is for other women coming here who have similiar side effects and others are telling them these are not side effects of herceptin. I am not planning on cancelling the herceptin treatments right now. I am hoping that the second or third one will not hit me as hard and my body adjust to it. If not, I don't know. I guess, I'll know after the first echo heart in a few months if there is any heart damage.

My second infusion is on the 27th.

Hindsfeet

More side effects I google. http://www.drugs.com/sfx/herceptin-side-effects.html

Back pain; change in taste; diarrhea; dizziness; fingernail or toenail changes; headache; loss of appetite; muscle, bone, or joint pain; mild fever or chills; nausea; nose, sinus, or throat inflammation; runny nose; stomach pain or upset; tiredness; trouble sleeping; vomiting; weight loss.

ON THIS LIST...I just have nausea, stomach pain or upset, tiredness and trouble sleeping. The following list are the more SEVERE side effects...some of which I too am experiencing...like itching (forgot to mention) tightness in the chest, short breath sometimes, light head, or dizzyness and headache.

Seek medical attention right away if any of these SEVERE side effects occur when using Herceptin:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue; unusual hoarseness); burning, numbness, or tingling sensation; change in the amount of urine produced; chest pain; difficult or painful urination; fainting; fast or irregular heartbeat; mood or mental changes (eg, depression); muscle pain, weakness, or cramping; new or worsening cough, shortness of breath, or trouble breathing; pain, redness, or swelling at the injection site; pain, swelling, or sores of the mouth or tongue; severe or persistent dizziness, lightheadedness, or headache; severe or persistent nausea, vomiting, or diarrhea; skin infection (eg, skin discharge, redness, swelling, or warmth); sore throat; sudden, unexplained weight gain (eg, more than 5 pounds in 24 hours); swelling of the hands, ankles, or feet; symptoms of infection (eg, severe or persistent fever, chills, sore throat); trouble swallowing; unusual bruising or bleeding (eg, nosebleed); unusual calf or leg pain; unusual tiredness or weakness; wheezing.

I should post this on the herceptin side effects thread

lago

evebarry all drugs have this long list of SE but most of those SE are rare. By law they are required to list them all even if only 3 people got them. When you get one of the more rare SE you need to remind your doctor you're not crazy.

CoolBreeze

Eve,

Anxiety can cause all those symptoms too. Please try to relax and know you are doing the right thing.  Many thousands of us have been on herceptin for years with no dangerous side effects and you can be one of them.  Report anything to your doctor but then relax.  

I'm surprised you were given steroids and that some seem to get benedryl.  I have been doing herceptin around 2 years now and have never been given anything with it.  Don't need anything either, it's just in and out for me.  No side effects.  Even the runny nose seems to be milder now than it was at the beginning.

When you don't want to do something and fear it, your body can recreate what you are afraid of.  It feels like real side effects because it is real side effects, but it isn't from the medication, it is from fear. So, if you can relax maybe you can feel better. Tell yourself you will be one of the many who experience no side effects from herceptin, and do your best to stop thinking about herceptin and cancer until your next treatment.  We ALL feel better when we get back to regular life.

Good luck, my dear.  I hope you do well and never face this beast again! 

suzieq60

Ann - great to see you back posting - we missed you.

Eve - Ann has given you good advice, she has expressed it much better than I did.

Sue

Hindsfeet

Thank you largo...I'm not crazy. I really am a very easy going person.

When taking the herceptin infusion the only side effects I thought I would have initially was a runny nose, which I never got.

It's dangerous to say these side effects are in our head when in fact they aren't. I posted them here so others having them won't feel like it can't happen. This really can happen.

Knowing these symptoms gives me concern. I hope the side effects lessen as time goes on.

bucky317

lago and any other ladies who have finished Herceptin and taking Anastrozole. Have you noticed less joint pains since finishing the Herceptin? I attibuted it to the Anastozole more than the Herceptin......

lago

I noticed less stiffness when I stopped Herceptin in my thighs. Stiffness in my fingers, toes and feet started when I went on Anastrozole. I think now there's a bit more stiffness in my thighs again but not too bad. March 1st makes 1 year on the estrogen sucker. (just hope I dont' get any worse).

shore1

I see "discomfort in the throat" is listed as a SE of herceptin. Has anyone had this? I have had a weird feeling when I swallow starting with my last few weekly doses and worse after my first triple dose. My onc examined me and didn't feel anything and didn't mention this could be a herceptin SE. If anyone has experienced throat discomfort, what does it feel like?

lago

I had a swallowing issue after every chemo for a day or 2 with dry foods like bread or chicken. I had to drink water to get it down. I still have this on occasion but not as bad. I mentioned it but onc/NP didn't seem to think it was anything. It was annoying though.

Anonymous

eve-I believe you. I started with taxol/herceptin weekly for 12 weeks. Few side effects (had steroids too).



Then, went to a 30 minute infusion of hercepting with benadryl (the first time, 1/2 the dose the second, and then non if all was well). I had nausea (more queasiness really), joint pain, red cheeks and nose, andmore. Complained to doc. He slowed the infusion to 90 minutes. He also said I could come in every week like I was, or every two weeks so that I didn't get the dose dense stuff, since I seemed to be fine on the weekly. I cshose to start with the 90 minute. It helped with the major ones that were bothering me, and I really didn't want to go back in there every week, so I stuck with it.



I missed one week keeping my nails in froen peas as I forgot them, and my nails immediately started getting nasty. I am keeping them short and back in the peas. So far, they aren't worse, but not better either. They feel thin and tender. Two more to go!



Lago, good luck with that ab idea. I hope it works for you. I have not gained any weight, and I now have this flab around my midde that no amount of ab exercises seems to be helping. That is why I am having my PS suck out as much as he can. Since I had lost all the weight and was looking good and firm last February, and have been working out prettymuch throughout, I am chalking it up to tamoxifen.

bucky317

Lago ok, well.... I guess it will be something I will have to live with I don't have the thigh stiffness so much, but def. the aching in fingers, toes, knees , back etc.... I am wondering if it worsens over time (we have 5 years or more of this stuff) or stays about the same? I guess time will tell.