Questions about her2 +

kerrberlady

Eve, I am doing Herceptin alone, started on Dec 1, 2011.  I didn't have a fight with my oncologist about it, I had researched before my meeting with him about Her2+ cancers.  I had cancer in 2001, lumpectomy, adrimyicin, radiation, tamoxifen, arimidex until 2006.  I was enjoying my life being cancer free.  Now here I am 10 years later, with a completely different diagnosis and new decisions that needed to be made.  

I chose BMX with immediate reconstruction.  When I got the biopsy results and found I was Her2+ and all the research said herceptin with chemo, I was mad!  I didn't want to do the hard core chemo again, obviously it didn't matter that I did that the first time, I have it back.  I told my oncologist that he was not going to talk me into it either.  I live alone, no family in state, I need to work as it keeps me sane, I just didn't want to be that sick again.  I read all the studies on herceptin, I am post menopausal, as I had the hysterectomy a year after the BC surgery in 2002. 
My tumor was less than 3mm, no lymph nodes, all breast tissue was removed, I just felt that I didn't need to feel more sick if I don't really have to.  I have no regrets about this decision.  

 As far as the treatments go, I bring my NOOK and I try to read, however, the Benedryl that is placed in the drip first before the Herceptin, knocks me out within 10 min.  I pretty much sleep through my whole treatment.  I take the day off work, as I am sleepy afterward.  I have the runny nose, which is the most common S/E.  I have had face break out the first two treatments, but not the last two.  I am due for another EKG on my heart.  My iron levels have dropped and am on B12 vitamins.  But other than that, i am tolerating it well.  I do drive myself to and from the treatments. It is very doable.  

Hope this helped! Good luck! 

lago

You are not going through herceptin again but this isn't your first diagnosis. That's what I meant by going through this again.

BTW if in the rare event you do have a SE they may not let you drive home. When I was doing Herceptin only I already had 6 previous treatments with my chemo so I knew I wouldn't have a reaction. Granted as I said a sudden reaction is rare but it can happen.

HER2+ has a higher risk of recurrance but that doesn't mean  your friends were HER2+. having a smaller tumor and no nodes does give a better prognosis but no guarantees. Glad you could find a place that was willing to give you Herceptin with no chemo.

bluedasher

Eve, I had my husband drop me off and pick me up for the first infusion. In my case that wasn't just Herceptin. I got Taxotere and Carboplatin. It might be good to have him at least somewhere where you can reach him just in case you have a reaction and need a ride home after all. It isn't very likely with just Herceptin.

For Herceptin only  treatments, there was no special prep. Just eat breakfast and do whatever you would normally do. Even with chemo, they recommend having some breakfast and not doing it on an empty stomach.

After the first treatment, I drove myself to and from all the rest of the chemo and Herceptin treatments. (Some oncologists give Benedryl to everyone on the chemo I had,and that makes one drowsy. Mine starts out without it and only adds it if it's needed to cope with reactions. I didn't need it so I was able to drive.)

Herceptin only infusions when you get them every 3 weeks usually take at 30 minutes to 90 minutes of infusion time. My place used 90 minutes for most of my treatments - I was told they do that because of some research that side effects are less with 90 minutes. Toward the end of my treatments, they changed to trying 60 minutes and then 30 minutes if the longer times produced no side effects. I didn't have any problem with the 30 minute ones, but I think it is good to start at 90 minutes and see how that goes before doing faster infusions. Getting you seated and starting the infusion take some time. 

If you have a laptop, tablet or whatever, you might bring it. I always worked on my laptop during infusions. Also, you might pack a snack and drink or water bottle. Most chemo centers have some snacks and drinks available, but I don't like sodas and preferred the snacks I chose. My treat on chemo days was a bottle of sparkling cider.

Hindsfeet

Kerrberry lady...I need to stick with you. Are you taking tamoxifin or als? Very few of us decide on herceptin a lone. I too work full time, although a few days a week at home. I have to feel good as so much depends on me. I'm trying to stay positive. I've decided on my treatment plan (no more discussion or debating it) and I'm going for it unless there are side effects with the herceptin.

Thanks for all of your tips ladies. I'm going to bring my own healthy snacks Hopefully they won't offer me benadryl as it too will put me out for the duration of the infusion and I will go home and sleep for the day. I am soooo sensitive to drugs. I hope to read a few books this year.

lago

I never had any benadryl or other meds when doing Herceptin alone.

kerrberlady

Eve, 

 I am not on tamoxifen or any other hormone drug as my cancer is ER/PRneg.  I am only HER2++.   I get the benadryl for the side effects, which honestly, yes it knocks me out for a day, but the way I look at it, I need it anyway, since I sleep so crappy at night.  It's a day to catch up.  Like I said the side effects I am having from it are minimal, and in reality after my hour nap at the infusion, I could probably go back to work, but with middle schoolers, It's better to go home, take a day to rest, and come back the next day rested!!!! 

Good luck today on the infusion! You will do great!  

iLUV2knit

I have a question and have read some of what is in this thread, but thought I would ask and see who knows the answer or perhaps, I should just call my doc and ask??

If I am ER +PR +, had a bilateral mastectomy and they only found DCIS and ADH, why don't they test for Her2/neu status?? 

If DCIS cancer calls are all non invasive then why can't I continue on my hormone therapy??  I am miserable with hot flashes, thinning hair and I swear my skin is wrinkling by the minute.  Why do I have to be careful with my intake of foods (soy, meats, cheeses) if my cancer is gone and so are my breasts.

Can anyone help me?

lago

iLUVknit a lot of times DCIS is HER2+ but not all DCIS that becomes invasive is HER2+. They still don't understand that. The person on this site who is extremely knowledgeable about DCIS is Beesie.

One thing I do know is there is a good chance you are cured but even with DCIS it isn't 100%. If some of those ER/PR+ cells got loose removing estrogen will "starve" them. At least that's my understanding.There are some women on this board that did get mets with DCIS. Not a lot but it happens.

Also most of your breast tissue is gone but not all of it. That's why you will continue to get physical exams for the rest of your long life.

iLUV2knit

thank you for replying!!  I like the wording you used (the rest of my long life) 

They don't even have me on any hormone blocker, I will just guess and say that perhaps it is because my ovaries (in 2008) were removed also??  But, obviously I still have estrogen or it would not have fed the cancer.  My doctor also never said how strong my ER/PR was.  I see that some ladies know their percentage numbers, but I never have.  I just hate these hot flashes and am wanting them to stop.  If I was Her2/neu ++ would that make me considered triple positive? 

I sure hope no stray cells got out because that did cross my mind with two different biopsies...and I think the first doctor was a butcher in a former job!!

dancetrancer

evebarry, did you have trouble finding an onc who would prescribe Herceptin only?  (If you've already discussed this on this thread, I apologize...I didn't see it.)

lago

iLUV2knit I assume your oncologist is making the decision regarding hormone therapy. If not you should see one. This is not the surgeons call. If you are seeing an oncologist, get another opinion. You'll sleep better.

SpecialK

iluv - yes, if Her2+ you would be triple positive.

orange1

Eve -

How did it go today?  How are you feeling?  I hope okay.

Orange 

Hindsfeet

Dancetrance...I live in the great N.W...Portland, where 'green' is in and alternative. Everyone is na tur al. I have a lot of friends who are holistic thinkers. It's probably an equal amount on alternative/conventional in our area...just don't know too many here who support 100% conventional medicine. I've talked to 3 doctors who would give me herceptin a lone, because it's what I want. The surgical team before changing surgical team in early November thought it was fine to do herceptin alone. I found that there is a lot of competition between oncologist and they want your business...so if someone said no, I would had gone elsewhere.

Hindsfeet

Orange...I suppose it went well today. It was an all day affair. I thought I would be home by noon, but didn't get home until after 5 P.M.

I felt shy walking into the infusion room like I didn't belong there. I was asked to find a recliner. They weren't that busy so early in the morning...no one seem to be hooked up yet. They first put in the IV pick line and did blood workup. Being that it was my first infusion, I first met with my oncologist.

I then went back into the infusion room and they hooked me up first to a saline solution. After 30 minutes, the nurse assigned to me began the herceptin infusion. When I first got there I was warm. They asked me if I would like a blanket. I said no. About 10 minutes or so after the infusion of herceptin I felt cold run through my arms down into my legs. One of the other nurses walked over an placed a heated blanket over me. Every time I had a side effect they stopped the treatment for 30 minutes. Side effects were tolerable. Sinus headache, nausea, elevated blood pressure and light headed....

All in all it was pretty uneventful other than they had massage therapist who went around to rub patients feet. Nice They also have a kitchenette where you can help yourself to food, and drinks. They also bring them to you if you ask. I brought my own water so I was good.

I thought I would leave around noon. I was surprised to have spent the whole day there. I was so tired when I got home. I wanted to write here what happened, but after posting some place else, I was too exhausted even to read.

I feel better right now...just a feel small side effects like the headache and cool feeling (not cold, just cool) .  The nurse said today it was a double wammy. It was double the dose the first time, which was a surprise to me. She said the future infusions are half what I had to day and should be a breeze. My next one is Feb 27th.

dancetrancer

Thanks evebarry.  I live in the conservative south, so if I want Herceptin alone (still undecided), I wonder how many docs I'll have to see...LOL!  I appreciate the insight, we'll see how my 2nd opinions go this week.  Thanks! 

Hindsfeet

I'm about to leave to work this morning, but wanted to add that with the steriods although completely exhausted I could only sleep about 4 hours...and I only slept one hour the night before infusion. I wanted to note that this morning I have slight itching all over my body, and still have the sinus headache. No other side effects today

Beesie

Eve, I'm glad that all in all, it went pretty well.  Fingers crossed that you have no side effects today!

SpecialK

eve - what you had this first day was the "loading dose" so it was the largest dose you will receive.  Don't be surprised if you feel headachy after infusions - it is usually mild, a Tylenol will help.  I also enjoyed a warm bath - found that to both good for any aches and relaxing too.  Glad you got this first one done!

Hindsfeet

I'm home from work, I'm posting my first 24 hour after infusion side effects. When driving an hour to school this morning, I noticed a slight nasal drip that disappeared later in the morning. My voice was scratchy part of the day. I'm still a little itchy and have a slight sinus headache.I made it through the day ok...just tired at the end of the day. Hopefully, I can sleep well tonight and tomorrow there will be no side effects, although today none of the side effects were remarkable.  

I said to my nurse yesterday that I am being infused with mouse antibodies. She said that the antibodies are now being taken from humans. I then thought better human antibodies than mice. On the way to school this morning it came to mind that humans antibodies might not be so good. Who is contributing these herceptin antibodies...people who died with cancer? What diseases did these people have? Is it the right antibody for my type of cancer or another cancer? What about the antibodies coming from people who have other diseases? I then thought, I would rather have a mouse antibody.  Mice don't smoke or get all of our crazy or weird diseases human have.   

dancetrancer

Evebarry...love your mouse musings!  Glad today's treatment went well! 

Kate60

I am HER2+++. As much as I had read about Herceptin, the greater my fear and dread about the possible heart side effects. But I have decided to fight this with everything the Dr's can give me for two reasons.

1. They closely monitor your heart function, and at the first sign of trouble will take you off H - before any lasting damage to the heart is done.

and

2.  I don't want to spend the rest of my life looking over my shoulder waiting and wondering íf it will come back and if it does is it because I didn't undertake the Herceptin regime. Not being able to answer that question would just do my head in. If it does come back, then so be it, but it won't be because I didn't try to cover all bases to save myself.

Of course it is an entirely personal choice, and you need to do what is right for you but I also think peace of mind is terribly important. So for me, with trust in my Dr's to watch out for troublesome signs, I am so grateful that there is Herceptin. As others have said. It can be a life-saver.

It is a serious decision you are making and I really wish you well with whatever path you choose.

Regards

Kate

Hindsfeet

AussieKate, I am taking the herceptin for a year unless there are serious side effects like heart failure. I'm not complaining about the herceptin. At times, I question what I'm putting in me. The odds with stage 1, I won't have a recurrence, but my odds so far hasn't been good so I'm doing the herceptin.

I don't take anything into my body thoughtlessly. Perhaps 10 years ago, I did when following dr orders to take premaritan hormone replacement. For me I have to know what I'm doing, and feel confident that I can live with whatever choice I make. I know with herceptin mostly there are mild side effects like what I have experienced so far. I am grateful to have a excellent medical team, who is extra careful making sure I am ok.

Kate60

Sorry Eve, I have chemo brain and got confused with your post. I also took HRT for 4 years. My Dr kept telling me to have a mammogram - but did I listen??? Nope. Went off the HRT and 3 months later dx'd with this. I'm glad you have a great medical team and trust in them. Not sure what I think of mine yet. I feel a bit like a number mostly, but I just have to trust that they know a whole lot more than I do about BC.

lago

AussieKate I was on Herceptin for a year. I have no issues to date. They do monitor folks though and you will get a MUGA to make sure your heart is  healthy enough for Herceptin at the beginning. Many get MUGAs every 3-4 months while on Chemo. I didn't but was always asked about shortnes of breath etc which I never had.

Thing is ALL meds have side effects. Heart issues are not common but do happen. In many instances it can reverse itself. If not they do have meds to manage. This is something that you really need to discuss with your onc. Ask specifics. Just remember they do monitor you.

Cleoland

Hi all, I finished TCH on Nov 3rd and my first Herceptin alone gave me a reaction. They had to stop the Infusion and give me Benadryl. When finished I felt sick again and the doctor came to check on me. I was so happy my husband drove me and I didnt go by myself because I would have not been able to drive myself. I will finish my radiation next week and Herceptin in July 2012.

Hindsfeet

First...I agree, herceptin is a gift of life to so many women. But...my mind muses over the whats and why's of it. When someone tells me that while on herceptin they had nail problems or etc, I wonder why. So...I began googling my questions and came up with more questions

Does herceptin cause slow cell turnover? If so, perhaps this is why some women complain of slow hair growth and nail problems during herceptin therapy.

 Do nails & hair have more her2+ cells? How does the herceptin know which is a cancer cell or a normal cell with the her2+?  Why 1 year treatment? Wouldn't six months or less work as well? It seems that the killer immune system would have pretty much cleaned up all the cancer cells with the her2 receptors in 6 months.

What I like about it is herceptin locking onto any possible cancer cell puts our killer immune cells on allert to gobble up the foreign invader. Just trying to understand why the side effects

SpecialK

eve - I think one of the reasons that hair and nail issues are mentioned in connection with Herceptin is that because the vast majority of patients are receiving Herceptin concurrently with, or following, chemotherapy - their hair and nail issues most likely started with chemo.  The trial information for Herceptin was concurrent with chemo so they have to include those side effects because they were noted amongst trial participants.  It will be interesting to see if you notice any hair/nail issues on Herceptin alone, having not had chemo first.  I personally did not notice any hair/nail issues specifically related to Herceptin.  I am 8 months PFC, and finished my final Herceptin in mid-January.  My hair and nails grew at their normal rate during the time period when I was receiving Herceptin alone.

barbiecorn

Hi Ladies - can you tell me what ER- 97% means - which is what I have - I know Estrogen Receptor but what about the 97% - Also, I have PR: 0 - thanks for your explanation.

orange1

Hi Eve, 

I'm happy to hear your first treatment wasn't too bad.  Regarding 6 months vs 1 year of treatment - no one knows if 6 months is enough because it hasn't been test yet. The answer to that question will have to wait for a government funded trial, because the drug manufacturer will never voluntarily conduct an expensive study where the result may be less profit.