Herceptin questions

[KCC]

Hi-I am new to this board--I was wondering if some of you would answer the following questions for me as I start Herceptin tomorrow---

1)I will have my last chemo (Taxol) tomorrow, my onc wants to start me on Herceptin tomorrow---is it okay to get Herceptin and Taxol in the same day?

2)What are some side effects that I will experience on Herceptin?

3)I will have a mastectomy (possibly bilateral) and recon in November---Is it "heart" safe to be on Herceptin and endure such a surgery? (I plan on using my own tissue in recon)

thanks so much.

[cafe1084]

Yes, it is safe to have taxol and H on the same day. I actually had T and H together for 12 weeks and was fine as long as they ran each one separately and slowly. Otherwise, I had horrible heartburn, a metallic taste in my mouth, and nausea

The only side fx I've had from H is still the metallic taste in my mouth if ran too quickly and I have kept a sinus infection since I started it. I have a dry cough i never had before and my blood pressure still hasn't returned to pre-cancer normal, but my heart is fine. I am sure there are others who've experienced different side effects, though.

As far as surgery, I have read that it is completely safe and being on H during surgery is an added benefit because if there are other cancer cells that get "activated" or stirred up during surgery, H will target these.

It's always scary starting new meds, never knowing what to expect, so I wish you the best of luck!!

steph C

[Lolly]

Hi Kim;
In my experience it's been fine to be on Herceptin and taxanes together. Currently I'm on Taxotere and Herceptin and get them both on the same day.

Your onc should order an Echo or MUGA scan of your heart soon,to use as a baseline measure. This should be repeated throughout your course of Herceptin. Some oncs run the scan every 3 months, some every 6 months.

I had a mastectomy while on Herceptin, and did fine. I know several others on this board have had various surgeries while on Herceptin and had no problems, so you should be fine, although I would hope your onc would order the heart scan at some point before your surgery just to make sure you're fine.

Welcome to the board :)

<3 Lolly

[tousled1]

Welcome to the board. Yes you can have Herceptin and Taxol at the same time. I'm currently getting Herceptin, Taxol and Carboplatin. Just make sure that your oncologist orders either an echocardiogram or MUGA and that you have them repeated every 3 months while on Herceptin. Herceptin can reduce your LVEF (left ventricular ejection factor). If it drops to 50% or below Herceptin would have to be stopped.

[Joan S.]

Hmmmm! I am learning a lot from you guys. I am fairly new to this board. I just finished my eighth treatment of Herceptin and Taxol. My doctor has not recommended having a MUGA done. Is this unusual?

[Melinda]

HI Joan,
Congrats on finishing tha hardest part of your journey. I was on TCH and have finished that regiment in June. Now having only the Herceptin in my system I can identify what side effects where coming from it while on the TCH. I get my H every 3 weeks. First week the runny nose, casues me to sneeze and that in itself is a life altering experience according to the people who are within earshot;) Aside from that the normal little aches and joint pain that usually are solved with a tylenol, and the first week some Imodium. But I want to qualify this... everyone experiences this differently.
As for Muga's/echocardiograms... I had my first one prior to chemo as a baseline and when I went off chemo ONC ordered another. The chemo and Herceptin can effect your LVEF left ventricle ejection fraction. They like it to stay above 50 as Kate has mentioned. You SHOULD get one or the other.... and be sure to have it PRIOR to your herceptin treatment and not after. I wish for you a walk in the park while on herceptin.
Keep the faith
Melinda

[MAB1943]

it is my opinion that the MUGA should have been done before you started the herceptin and then at 3 or 6 month intervals, depending on how long you will be on it. I have been on taxol/herceptin for weekly infusion for 3 months and now I am done with the chemo and am on 3 week infusions of herceptin. I have all of the normal reactions or side affects, including running nose. The herceptin alone has NOT been a problem and is easier than the chemo. Good luck keep in touch.

[MAB1943]

anyone out there on just herceptin infusions @3 wk intervals? I am experiencing joint,muscle severe pain in my arthritic knees. Both, of them swell up and I have a really hard time walking. Also I have diabetes type 2 and am on insulin injections once per day does any of this have an effect on the herceptin reactions.
any help will be appreciated. The neuropathy in my feet seems to be worse now too.
I had the usualy ac/tax/herc chemo from dec to june
mary

[Brenda_D]

MAB1943, I am getting Herceptin alone every 3 weeks.
I had A/C, then rads, and then the H.
I have a runny nose, heartburn especially the days right after infusion, and some bad back and hip joint pain, that I hope is the herceptin and not something else.

[Joan S.]

I am on herceptin/taxol every week for three weeks and then one week off. I have been on this regime since July and if my body holds up I will be on it for three to four more months. So far the main side effects have been bloody mucous, fatigue and a little pain in my forefinger of my left hand. That seems to have gone away. I was afraid that I was developing neuropathy but if I was I don't think it would have gone away so quickly. I do have some stomach discomfort. I get a "caustic" feeling in my stomach sometimes and I feel full quickly but I am maintaining my weight. I have not had a muga scan. I asked the doctor about it and he said unless I had a pre-existing heart problem I didn't need it.
Joan

[dolphinlover]

Joan,

I am also on Herceptin and a Muga scan before treatment and every 3 months is protocol. It is the only way to be sure the Herceptin is not affecting the heart, which is the major side effect. (even if only 4% of patients get heart problems) I do not have any pre-existing heart problems.
I started with a Muga reading of 68 and now 9 month later it is at 55 (50-75 is normal) Now I will be monitored every month with a Muga scan before my herceptin treatment. I only have 4 more to go.
I would definitely get a second opinion, or question this further.
Good Luck Jules

[sdhaem]

Joan S.
I didn't have any heart problems prior to Herceptin,, after 18 weekly treatments i was taken off as the Muga scan showed damage to my left an right ventricles, my muga before herceptin was a nice high range and it droped to 40% left and 42 right..
I would question why you are not being monitered ,, ther is another way they can moniter the heart don't remember what it is but I would insist on one of them..

[aurey]

Joan
I have had herceptin first with taxootere then on its own three weekly, I had an echocardiogram after the first five months I'd had no previous heart problems. But after ten months my ejection fraction went down from 70 to 45% so herceptin was stopped. after a rest it was restarted but again had to be stopped, and again. My heart is recovering again now and the heart doc says I can return to the herceptin but the onc has decided that it would be better to keep it in reserve to add to a chemotherapy treatment when it becomes necessary, that way it will be more efficacious - he says. I'm not even certain that Iwant any more chemotherapy but the herceptin is the only drug that keeps the 'wolf from the door' but this onc suggests that there is growing concern that herceptin becomesof less use the more you have of it, sorry can't think of the terminiology- the body becomes used to it.

[Anabel]

Hello everybody,

first of all, I would like to excuse my english ☺️!
My name is Anabel and I'm from Germany. I was diagnosed with Stage 2b her2 positive/ hr negative breast cancer last year and received neoadjuvant chemotherapy. The final pathological report showed, that the invasive Part of the tumor disappeared, but there was a DCIS left. Now I am still on Herceptin for the rest of one year (18 infusions).
Last week I spoke with my new MO and he would give me the Herceptin for another year. I am not sure, if I should do this.
The HERA Trial showed no benefit 2 vs 1 year... But is this the case for all subgroups?
How would you decide? I am a bist concerned and would be happy, if you had any advices.

Greetings from Germany.
Anabel

[Carol Ann]

Hi Anabel,

Please don't apologize for your English, it is very good! :)

Herceptin is a wonderful drug, but here in the USA I have never heard of it offered/given for more than 1 year UNLESS the cancer has metastasized (spread) to distant organs -- bones/lungs/liver/brain -- Stage 4

That doesn't seem to be the case with you, have you asked your doctor why he wants to keep you on it another year? Has he said anything about surgically removing the remaining DCIS?

Carol Ann

[Anabel]

Hello Carol Ann,
thank you very much for your response :)!
The remaining DCIS has been removed in a second surgery (mastectomy and radiation).
In Germany Herceptin isn't given a second year either and that is why I am a bit concerned. Does the new MO expect a recurrence? Or is it the fact that my tumor was hr-? He is a respected doctor here and that is why the talk with him made me insecure. Until then I thought my results after neoadjuvant chemotherapy were good. Now I'm not sure anymore.

Anabel

[Carol Ann]

Hi Anabel,

Most tumors that are HER2+++ usually are hormone receptor negative, triple positives like myself are less common. So I don't think that is the reason. In any case, one year is still the standard of care, not two if there has been no progression/spread.

I have never heard of giving Herceptin because the cancer might spread -- all of us have that chance that mets (metastasis) might happen. I have never heard of it prescribed "just in case".

Can you ask him specifically why he is recommending another year of Herceptin, given that one year is the standard, and your cancer is/should be currently in remission?

Can you go to another oncologist for a second opinion about this? I think that is what you need, no matter what he says at this point. You need to know all the facts and options about your case to make the best decision you can.

Carol Ann

[mariaiam]

Last Herceptin (one full year) was May 2016. Before that I had chemo (started March 2015) and radiation.
It is four months later and I am finding it hard to go up two flights of stairs (winded). I've started running and don't find that makes a differnce. Has anyone experinced this as well.

[Teal55]

I finished Herceptin/Perjecta (18 rounds total) I'm in a clinical trial. I finished July 2016.
It sounds like you may want to get an ecocardiogram. I have been having one every 3 months. I have had some difficulty as well and I exercise and walk (5 miles) but it doesn't seem to change anything for me. I'm wondering if it's a horrible side effect. I too had chemo and radiation. I'm wondering if my tightness in check and sometimes difficulty breathing might be a radiation side effect? We have been through so much it's hard to know what's causing what. Are you also on Aromatase inhibitors? I'm struggling with those now and stopped until I get a second opinion. I would let your doctor know about your winded experience. Doesn't sound good. Good luck!

[mariaiam]

yes I am on tamoxifen . Right now I am considering hysterectomy to help reduce the risk cancer recurring.

I really hate the fact that we haven’t we cured cancer yet or allowed people to live longer with better chances? If we can harness the atom, why can’t we cure cancer or allow cancer survivors a longer life?

This really sucks.. I am walking on egg shells everyday. every choice I make eating, exercising, amount of stress in my life always second guessing am I doing the right thing. I hate this, but I am so grateful i'm still living.