length of time on Herceptin

[sarah]

I've been on Herceptin for over 2 years now and I'm afraid to go off it but I am confused about what's the best plan - to fight to stay on it or to go off and see what happens. I see my main oncologist in July and I will have to think about what to say to him. last time I became almost hysterical when he discussed the possibility of stopping so he decided I should stay on it but I'm not sure how long he can "legally" keep me on it or how long is actually good or bad. My heart seems to stay stable. but sometime before July I'm sure I'll bring up these concerns again.
I have a very sneaky, hard to see cancer. It's somewhere outside the breast between the breasts but only biopsies ever show it and MRIs show it as inflammation. it's like a star field. the surgeon noted it as metatastic but it's "close by" so I'm not even sure what stage I am. I'm not sure how they stage things here in France and I've been nervous to ask directly. I'll have a sonogram of the area again soon because they've seen something suspicious - could be surgery scars or cancer so that may tell more - this after radiation.
any thoughts or information or personal stories about the length of time for Herceptin and whether there's any negative to staying on it as long as I can? There's no way I can get the serum test done here, can't even get the CA27,29.
sarah

[Taffy]

Hi Sarah, did you have surgery or are you just being treated with herceptin alone? I wasn't sure from your post. If you've not had surgery and are relying on herceptin to keep your tumour at bay then you should be allowed to stay on it indefinately.

love
taffy

[sarah]

Dear Taffy,
thank you for your reply. my first surgery was in 1999, i've had several in 2004 and one in 2005. i don't have a "tumor" i have micro invasions so it's not a nice lump but a spread out field. but actually my question was really about the safety and usefulness of continued Herceptin and people's experiences.
Have you been taking Herceptin for more than a year?
thanks
sarah

[Becky]

Dear Sarah


Many people on this site have been on Herceptin several years (I am on a year now so that doesn't count). Christine (Druther) has been on 8 yrs, Kim (CT - aka mamacze) has been on 2.5 yrs, Lolly - 2/3, StephN - 3 yrs so there is alot of experience on this board.

As long as your heart is good, you can stay on indefinitely and it doesn't sound like you are NED but that you do have stable disease so I would push to stay on since there is still disease present.

Kind regards

Becky

[sarah]

Thanks Becky for your advice and info.
I've always felt it would be best to stay on it as long as I could - fighting for it, crying, whatever it took but lately I had been wondering if I wasn't being unreasonable or uninformed.
thanks
sarah

[rinaina]

Taking herceptin for over one year is all new to me. My onc and our friend who in an onc both said maximum one year. Is this a trial where you stay on longer? Are there studies or were there studies on the safety of staying longer? Is there is research to prove that staying on longer is that much more helpful after a year of being treated with herceptin? I am very confused over this herceptin use after one year of treatment. Also when I complete 3 more chemos with A/C I will be getting herceptin but not with taxol like so many of you. I was node negative stage1 grade3 1.4cm tumor clean margins, er/pr-.

[twoboysmom]

I have been on Herceptin since 2003, weekly for the first year and every three weeks since, due to a recurrence. My local doctor feels I should stop the Herceptin since I am NED but I am unsure. I saw my oncologist in Boston yesterday and she is inclined to keep me on the Herceptin but is looking into it further. She did say there is no evidence to support any side effects or organ damage, other than the heart, so do have your MUGA scans.

There are women out there who have been on Herceptin for 9 years without incident. Those odds sound good to me!!! Good luck with your decision as I fully understand where you are coming from.

[sarah]

Like you Rinaina, I would like to know these answers.
i'm not sure if the oncologists say 1 year because of insurance companies or it's the only protocol so far well established or if there is evidence that longer is bad. So far I haven't heard anything (outside of possible heart problems) that says longer is a negative but that is why I'm asking this question and would like to hear from long timers.
sarah

[StephN]

Bonjour Sarah!
First I want to say that I have been on Herceptin for 4.5 years now. Without chemos for 4 years next month. Obviously I was put on it for disease progression.
Your posts here are telling us a little more about your case - as I never quite knew your diagnosis from previous posts.
Looks like you have a strange version of this "duck" that they call breast cancer.

If you have had repeated surgeries to excise areas of new growth then seems like you need the Herceptin but that it is not having a 100% effect against the cancer. Have you thought of adding a drug like Xeloda to get that added punch to stop the pinpoint spread??
ARe skin mets part of your disease brand? Does your brand have a particular name?

[penelope]

Rina,
I also am a early stager that did not get taxol. Why did your onc tell you no? I am currently on herceptin for a year but I would like to be on it longer.

[rinaina]

Four years on herceptin?! Wow, hard to believe. It seems so strange to me as I really thought only one year was protocol. Is insurance willing to pay for herceptin past 1 year? That question just came up in sara's post reply to my post asking all the questions about herceptin. I guess your muga scans are okay then or you wouldn't be on herceptin for this long. Do you have any other side effects others talk about, pain, cracking nails, leg cramps, sinus etc? Are you from the States?

[rinaina]

penelope, i guess i don't need taxol because of node negativity and stage 1, not really sure.

[StephN]

Hi Rinaina -
If you are asking the questions about 4 years on Herceptin to me then I can answer.
I was diagnosed PRIOR to the wide adjuvent Herceptin trials, but could have had it if I had known to fight harder for it in 2000.
I became Stage IV not long after the initial chemos and rads. Once a patient shows a need because of disease progression you can stay on Herceptin as long as you are alive and doing well enough. So, I expect to be on it many more years as it is doing the job for me in keeping my disease at bay.

I have very few side effects - leg cramps at night is the main one which also could be a result of the other drugs I took. My MUGA this spring was inthe 60's so looks good. I live in Seattle and my insurance has no problem paying for it.

You are in a better position getting the Herceptin right away before the disease has a chance to do its sneaky thing and spread in spite of the chemos.

[rinaina]

thank you steph I was asking you...sorry i didn't refer to you personally. you cleared things up for me great. what do you do for your leg cramps at night?

[sarah]

Dear Steph,
Thank you for your extremely informative reply. I will try to get a clearer view of what my cancer is called and staging. Up to now I just haven't considered that so important - getting the right drugs was my concern. My main oncologist had said we are going to use a nuclear bomb to destroy a small cancer. I know my cancer is a little different because it's not a big lump (never shows up on mammograms) and it always seems to come back in the same area. I had a mastectomy in 1999 and was told that would be it since then I had DCIS, no nodes involved but.....anyway it did come back. A recent sonogram of the breast area showed a suspicous inflammation again in the area between the breasts which will get looked at again in July to see if it's grown or not - it's in the area of all the surgery scars so that could be the cause - last surgery was almost 2 years ago but my GP who's very up on cancer says that since I get keloids and heavy scarring, it may just be inflammation from that and that it's not unusual to last for 2 years. I am also aware that scars can cause cancer.
Once again I can't thank everyone enough for this site and the wonderful people on it that give their time and knowledge. It's so helpful to me and very comforting.
Sounds Steph like I should keep fighting to stay on Herceptin but I think now I'm calmer about being on or off it than last time when I considered stopping it was paramount to a death sentence.
Steph, another question, do you take co-enzyme Q10? and if so, what amount? I now weigh - thanks to gaining 15 lbs on chemo - about 140lbs. I take about 150mg of Q10 each day with lunch. My Muga is about 64. I go for another one soon and a heart sonogram - I've had pericarditis before.
Ranaina,
I was given magnesium pills to take 3 times a day when I had foot and leg cramps will doing chemo. It helped me. I continue to take them with my calcium (although the calcium is taken at least 2-4 hours later than the magnesium for absorption). I'm on the AI Femara which can weaken the bones and in my case I think it is slowly doing that.

Thanks again for the helpful answers and good luck everyone with your fight and may life remain enjoyable and full,
sarah

[StephN]

Dear Sarah -

Glad you are going to ask more questions. Your case sounds on the unique side, and, as you say, getting the right drugs is our main concern. If you have something suspicious that they are watching right now, to me that is all the more reason to keep on Herceptin until they decide what that is. After what happened to me, I am on the better safe than sorry side of things. This disease can move SO quickly, and does that in my case.

Co-Q10 - I am currently using a brand which has a formula they call "Q-absorb" 100mg. It has an enhanced absorbtion formula and they say on the front label "supports heart function." It is delivered in a prolipisome that is said to be 3 to 4 times better absorbed than chewable. I did not take chewable before, but like this one.

LEG cramps. I also get them in my feet and hands sometimes. I use Quinine capsules to take care of these cramps. Get extra Magnesium from my multi-vitamins.

[sarah]

Dear Steph,
thanks again for your very helpful and appreciate information and advice.
Hopefully with Herceptin being approved for earlier cancer, the price may come down (am I dreaming!!!) and therefore it may not be such a fight to get insurance to pay for it.
My Q10 is a large capsule and says it's high absorption it's 100mg and then I take an extra 30 or 50 pill.
I've also been taking curcumin/tumeric which was suggested by a friend - not for the heart but for tumor fighting.
I'll try to find out what my cancer is labelled.
Hopefully my main oncologist will write down that I need to keep getting Herceptin. Last time I was so hysterical (not my usual demeanor) that I think he searched for a way to keep me on it and discovered the surgeon had written the word metatastic and that satisfied him.
Again thanks. it's great to have such knowledgeable people to turn to with questions and also have such strong and inspirational cancer survivors to inspire us all to be hopeful and brave. You give us the ammunition of knowledge and the spirit to fight with. I'm sure I speak for all is saying thanks to this website, we'd don't feel alone.
sarah

[mamacze]

Dear Sarah,

I am enteriing this discussion late; but in the USA, if you are stage 4, the treatment protocol is indefinite Herceptin treatment, so you are wise to get more information as to type and stage. Good luck with your onc...
Love Kim from CT (26 months on Herceptin, Stage 4)

[sarah]

thanks for the info. I will try to find out what I am and what it's called! I'm a little confused myself but I'm doing quite well despite the on-going scares. I mean I don't think I look sick to anyone that doesn't know me and my history. So I feel very lucky.
good luck to all of you with your fight and thank you sooooo much for all the great advice and encouragement. You are all so inspiring and I'm so grateful you are out there.
sarah