Questions about her2 +

Hindsfeet

I am missing one herceptin infusion. Instead today I'm exchanging my T.E. for a softee implant. I'm wondering if the metal inside the Tissue expander is part of the problem to why my heart is so erratic or jumpy. I am allergic to metal. The botox is wearing off so the area where the port is in the tissue expander now hurts.

I really do hope I can continue the herceptin.

Anonymous

Eve...good luck today....you will love how the implnts feel compared to the expa ders

Hindsfeet

Thanks fluffqueen.  The implant is a little larger than the TE. I hope it lays out in the end better than it is now as it's too high. My ps is suppose to do a fat grafting but doesn't want to unless I agree to take off the other one. If I keep the left breast I may have to change plastic surgeon.

It's getting scary here at bco learning of early stage women dying of cancer, and who went through treatment. Once dx with invasive her2+ cancer, you always look over your shoulder for ache's and pains that could be cancer. I've learned from those women to push for scans and make sure you don't have a recurrence.

Alicethecat

Hi EveBarry

I've read your posts re heart issues in the family and I think you're incredibly brave re Herceptin. Keeping my fingers crossed that it will work for you.

I'm hoping to do the same re Herceptin after four rounds of FEC and in round two of four rounds of Taxotere.

Like you, I'm HER2+ and allergic to metal (nickel, tested at an allergy cenre in the UK) and had the same concerns re having a port fitted. I haven't had one yet and don't intend to have one either.

Hope the remainder of your treatment goes well for you.

Best wishes

Alice the Cat

starella

Hi Alice, I to am very allergic to metal, but the port placement, use of the port, and removal went fine. Good Luck with your decisions.

Hindsfeet

I feel a lot better after removing the tissue expander. It will be interesting to see if the TE metal port had an effect on my heart. The implant is VERY uncomfortable, but different than the expander in that the expander port was painful.

Hindsfeet

After 6 infusions, although now at a weekly dosage, I'm still struggling with herceptin. My heart is still erratic, and I struggle with abnormal fatigue. I am now seeing a cardio specialist. I am struggling with continuing herceptin or in taking a summer herceptin break just to see if my heart goes back to the way it was in a 10% inprovement in my EF and see if the heart palpitations go away. I'm hoping my cardo dr. I'm seeing Friday will help me in deciding what's best for my heart.

I've been wondering what all cells in our body have the her2 epithelial cells. I know the heart and lungs do, but what other cells are effected by herceptin. It seems to be (correct me if I'm wrong) that herceptin doesn't know the difference between cancer her2+ or normal her2+. If it did then it wouldn't effect healthy heart or lung epitelial cells.  

What all cells in our body have epithelial cells? Is herceptin smart enough to only go after her2 cells that are her2+++ or does it effect all epithelial cells (human growth cells)?  Perhaps this is why my eyes have worsen, slower wound healing, and other issues. It seems to me that herceptin locking on to the human growth cell slows down a lot of cells that effect our whole body normacy. i wonder if herceptin locks onto all her2+ cells flagging the immune system to inhibits cell proliferation and migration and promotes apoptosis. If this happens for healthy her2 cells then it herceptin might be hurting us in the long run.

I am not against herceptin as it does seem a game changer especially for those with advance cancer. I wonder how long it's necessary especially for those who are early stage? I don't know, and I'm struggling now with these questions. I will continue if I feel the benefit is grater than the risk.

• Epithelial cells line the major cavities of the body.

• Epithelia form the structure of the lung, including the

alveoli or air sacs where gas exhange occurs.

• Cells line most organs, such as the stomach and small

intestine, kidney, and pancreas. They also line the esophagus.

• Cells are also found in ducts and glands, like the bile

duct and sailvary glands.

• Epithelia can specialize to act as sensory receptors. They

form taste buds, line the nose, and are in the ear. They are also found in the
eye.

• Female reproductive organs are lined with ciliated

epithelial cells.

• The skin is made of epithelial cells. Its striated layers

demonstrate the extensive morphology of epithelia.

• Capillary beds are made of epithelium.

• Epithelia is the first type of cell to differentiate in the

embryo. This occurs during the eight-cell stage.

 http://www.bio.davidson.edu/people/kabernd/BerndCV/Lab/EpithelialInfoWeb/index.html

lago

evebarry we don't all react the same way to Herceptin. If it all were that easy we'd all know we'd be helped by this medication and not get some of the less comon SE. 

Do I think my hair grew slower on Herceptin? Yes but still faster than many women on the hair thread. Do I think my scars healed a little slower after having surgery on Herceptin? Maybe but a hell of a lot better than it did with chemo! Did I get heart issues on Herceptin? No as far as I know. You just might be hypersensitive to it, or more sensistive than others. That's why we all don't get heart issues.

I hope your cardio specials can help you make a decision.

Hindsfeet

largo, I am hypersensitive to drugs and to a lot of foods. It's hard when you do have issues with drugs that you supposely need to take but can't. The nurse said to me the other day that if I'm struggling with herceptin then it's good I didn't do chemo. She said some people don't handle the treatments as well as others. This is why we need individulaize treatment plans. We need to be in tune with our bodies to know what we can do and can't. For me this means, I want to know the inside out of the drug and how it effects my overall health. I don't want to find out after the fact that I made a big mistake that could of cost me my life or put me at high risk for heart failure. And this is why I'm looking further into herceptin and the epithelial cells effected by the drug in regard to side effects. I also feel that people should know before taking herceptin it isn't a benign drug or medicine. It does slow down the epithelial cell turnover, which is why they struggle perhaps with skin issues, slow healing, infections, and possible heart & lung issues. The good news is once off of herceptin our body does recover, except in some cases heart damage is unreversible.

It took me 6 weeks to get over just one canker sore...at over 1 C in size. One I had inside my lip got very infected. I haven't noticed slower hair growth, or have I had a runny nose. 

When I look up herceptin to understand it a little more, I found information on the world wide web to be very vague. I've begun searching epitelial cells and etc to learn more than herceptin being the wonder drug for bc. If I'm taking something in my body that can cause possible damage, then it is important for me to ask questions that will lead me to peace of mind in deciding one way or the other. Herceptin is still a new drug, and we don't know it's long term effects on us. We aren't sure how many herceptin treatments are enough.

I also wonder if herceptin is an antibody then after the first, second or third treatments of herceptin why our body doesn't make copies of the herceptin to continue fighting possible her2+++ cancers? Our immune system is smart and when it sees a foreign agent it strikes it and develops antibodies against future onslaughts of the virus or agent. Could our bodies become so dependent on herceptin antibodies that it exhaust our immune killer cells, or begins to ignore the herceptin antibody? Could our body become resistent to herceptin that is if we take it too long? Should we take herceptin breaks to give our body a chance to recover or to relax our immune system?

I guess I have an over active mind

Lisa614

I wonder if anyone can help me interpret my HER2 score.   It came back 9.9 which puts me in the negative category.  But the cut-off is 10.7.   Does this mean I have a slightly greater risk?   i forgot to ask my onco about this...

Anonymous

Lisa.....I'm no expert, but I think negative is negative...so no worries! Congratulations! The way I understand it we ALL have the HER2 expression.......but it's the OVER expression that changes things and you are just fine.

1marmalade1

I have a question for HER2+ women taking Arimidex...I have been taking it for more than 2 years.  I have sore feet all the time - the joints ache in both my feet and my knees.  I have heard that a lot of women are given a "break" from taking it by their docs - anywhere from 4 wks. to 6 wks., and then start taking them again.  Has anyone from the HER2+ group done this before?

lago

So that's why my feet hurt when on them too much. I just thought that was another chemopause thing. I have stiffness but I exercise daily and it really helps. I find if I don't move around enough in the day I'm really stiff… but some women even if they exercise they still have issues. I know women who aren't even HER2+ that have terrible stiffness. I have heard some doctors give 1 month break and some try a different AI. I would discuss this with your onc. If s/he says no then ask for the rational.

gramma23

Eve, I have been through with my treatment since 2009. I want to assure you that Herceptin saves lives and that it may be a slight effect but well worth it. I am one that had trouble with the chemo but I worked with Herceptin and radiation. I do not see that there would be any reason not too. the first day of it and the next day I felt slightly tired and had a bad taste but used mints for the taste. No one ever acted liked I smelled bad so I am sure it was not something they could smell. Even my dog did not act like I was different. You know how they can smell a track if it is there so I would not worry about that. I have to have my port flushed every other month and I hate that smell but the nurse says they don't smell it only the person who is getting it. I felt better about that. You know the chemo nurses know a lot of things they will share with you. I know 2 others with Her-2 that are not alive because it was not available and I am alive because I took it. I had nodes involved and it was very bad but I am still here. I have an auto immune problem but it is my immune attack everything even good things when the ball gets rolling. I did fine with Herceptin. Herceptin saves lives and you just don't know what is lurking in you lymph or blood. I would love it if they could just scan me to check but no such thing yet. I know you are nervous and I felt the same way about radiation and I still do about radiation, but not Herceptin.

I wish you the best,

Carolyn

Hindsfeet

My oncologist said today due to side effects (most serious is heart problems) she is giving me low dose every other week and she isn't giving me the full yeart treatment. After one year she wants to stop the Herceptin and if my EF drops more then she is taking me off it altogether.

I saw my new cardio doctor a few weeks ago, and he says he has a lot of bc women on Herceptin. He said they all struggle like myself. It was nice to know that I'm not the only one.

A lot of people have no problems with Herceptin. I do.