Should I do one more Herceptin?

DianneS · 10-06-2009, 05:03 PM

My doc says not doing #17 treatment doesn't matter. I have done all previous 16 herceptins and never missed one since I began them November 2008.

It's a hassle for me to get to the place where I have them. An all day journey.

I am tired of feeling fatigued and achy. And watery eyes and irritable bowels.

There is no scientific proof that 16 is the magic number. There is no proof that this stuff is even working in my body.

What say you, my sisters? It's Tuesday and I have to decide by Thursday morning......arrgghhh.....

Dianne

DianneS · 10-06-2009, 07:47 PM

Dang. Thirteen views and no replies. I was hoping to hear from some of you.

I noticed that vlcarr, who just had a mastectomy, says that she will only have 3 months of Herceptin? Did I read that wrong?

Dianne

alicem · 10-06-2009, 08:04 PM

Dianne,

If I were in your shoes, I would go for #17. But that is easy for me to say because I really am not noticing any of the side effects you mention. I do feel that Herceptin is saving my life, and as long as insurance is paying for it, and my doctor recommends it, I want every single drop they can pump in. I don't want there to be anything that I can second guess myself on in the years to come.

Hope this helps!

Alice

vlcarr · 10-06-2009, 09:35 PM

Hey Dianne

Just saw this so sorry I have not replied sooner. I will be having a total of 18 months of Herceptin. I had it weekly during my clinical trial, will start TCH on 10/15 for 4 months and will still do herceptin every 3 weeks for a year after that.

Since I'm so new to this cancer thing I don't feel I can make a recommendation but wanted to make sure you knew I would be doing herceptin for a while.

Laurel · 10-07-2009, 06:52 PM

Dianne,

I felt the way you are feeling with my last taxol/Herceptin and again with my final Herceptin. I was so close to being finished I just did not want to "do" the whole infusion thing even one more time! I think you have what the military calls "short timers syndrome" where your time left on your tour is very short. You just do not want to be there anymore. It hits you pretty hard and takes all your reserves to make yourself toe up to that line one last time. I can tell you that last infusion feels great when they pull the needle out for the final time!!!!

I suppose from the above you know I am going to recommend you toe up one more time, the final time!

10-07-2009, 07:30 PM

all the studies are 52 weeks, 17 would put you at 51. So in reality you need one more week (not the 3 dosages). I noticed that after I got my last one (which was 18, I think), Blue Cross would only pay for one dose (though I think they gave me 3).

I would do it and then go out and celebrate. Or go home and take a much deserved bubble bath and nap.

Colleens_Husband · 10-08-2009, 07:54 AM

Dianne:

Do you use seatbelts in your car? They are an inconvenience but there is a one in a ten thousand chance that they will save your life. I think of Herceptin that way. Is there much difference in protection between 16 and 17 doses? How about 17 doses versus 18? Nobody really knows and if they did, would that difference apply to you? Herceptin is such a new drug that I don't think there has been a minimum dosing study versus chance of recurrence. Anyways, to me, HER2 cancer is pretty darn aggressive beast and it you should consider taking every precaution at your disposal.

Lee

Lee

Jackie07 · 10-08-2009, 09:46 AM

If it's only going to take 1-3 more weeks, I'll say go for it. It will be so much easier for you to say later that you've had a whole year's worth of treatment than have to explain (to yourself mostly) why you stopped short.

On the other hand, I assume that the sooner you stop this treatment, the sooner you will start your treatment for the hormone-sensitive portion. So there might be some advantage to it.

Either way, it is your call. And whatever decision you make is going to be the best decision for you.

Becky · 10-08-2009, 10:30 AM

Since you've come this far, I would finish the protocol completely.

DianneS · 10-08-2009, 10:41 AM

Thank you all for your replies. I opted to not do the last one AT THIS TIME. I have one more dose as I was getting a dose every 3 weeks. I am tired and need a break. You would not believe what I have to go thru to even get to the hospital from where I live on the wild B.C. coast.

I figure a week or two of missing herceptin won't matter that much. The experts don't seem to know one way or the other. If I had a cold or flu I'd have to miss an infusion, right?....hasn't anyone here had to miss a dose or two for those reasons? I really only made up my mind last night, but I have the option of getting the last dose anytime. Figured I would wait until I see the doctor Oct. 19 to see whether or not he will put me on hormone therapy. I am weakly ER positive so again, it'll probably be my call. Uggghhh I hate these decisions. Thank you again for taking time to give your opinions. I value them all. I will probably do #17, just have to retrench a bit. And grumble some more.
Dianne

swimangel72 · 10-08-2009, 01:57 PM

I skipped my last dose of Herceptin...........my insurance company said they wouldn't pay (some kind of paperwork/date mix-up because I switched oncologists half-way through). I just didn't have the strength to fight the insurance company - and my oncologist said the last dose wouldn't really make a big difference. I received Herceptin every two weeks for a year. I was so happy he said I could be finished......and have no regrets at all. But I took the big guns to my small Stage 1 Grade 1 cancer by getting a mastectomy, so that gave me more confidence skipping the last Herceptin - plus the fact that I didn't have positive nodes. So Dianne don't worry yourself too much...........I think if your body is exhausted and telling you to take a break, you should listen.

StephN · 10-08-2009, 06:29 PM

The main problem with missing a dose, for whatever reason, is that you then need a new LOADING dose. So skipping this one and thinking you can get that regular dose just any time is not correct. In my case whether, sick, traveling or being with a dying family member, I had only ONE day after my scheduled day to get my dose and stay on schedule.
This has gone on for years so I am very plugged in to this routine. I was on the 3 week dose.

Think of it as if you were taking a course of antibiotics. You don't just stop for a few days and then resume taking them. You take the doses as prescribed from start to finish.

I have a hard time thinking your onc will prescribe a loading dose as a last one for you. Now that you are off schedule, your pharmacy orders for the infusion are also out of date and would have to have new orders. So it is not so simple, even though it is a hardship to get to the clinic.

Laurel · 10-08-2009, 06:53 PM

I never missed a chemo infusion or Herceptin infusion for any reason. It was very important to me to go the distance. My onc. was surprised when I asked if I would be finishing in July after a year of Herceptin. She said, "Didn't you ever get off schedule?" She seemed surprised when I told her "no."

DianneS · 10-13-2009, 12:59 PM

My rationale for going AWOL is this.

In 2006, I had cerebral aneurysm surgery. That entails taking out a piece of skull, fixing the artery, then putting back the piece of skull with bone glue. I had 29 stitches across the top and side of my head. I was in surgery for over 3 hours. That surgery took over 2 years to start feeling normal again. I could not sleep on my left side, where the surgery was, for almost 2 years. Felt like I was sleeping on a rock. The bones on that side would crunch occasionally. Talking to more than one person at a time was nearly impossible. Reading was hard. Watching TV was a nightmare and caused visual disturbances. My head will still hurt if I get stressed or overtired.
Then in early 2008 my ovaries messed up and I had to have a huge incision vertically to remove a benign golfball sized cyst. We didn't know at the time it was benign so I went through a week or so of hell.
Then in summer of 2008 I was dx with this disease. I had more surgery - bilateral mastectomies....seven months after major surgery for the ovaries. Then hit with chemo in November 2008. I never missed one session for any reason. I faithfully dragged myself down for 10 hour sessions- that long because I was allergic to the taxotere so they had to go slow. The trip to get there took a full day so we always had to book a hotel somewhere that would also take our two dogs. In March I finished an extra session that I had to beg the doctor for. I wanted 5.5 taxotere/carboplatins, not 4.5. Now, to finish the herceptins requires getting up at 4 AM, driving 50 miles, taking a ferry, driving another 1 and a half hours on a winding road, getting to the hosp (which is nearer than the one I had the 10 hour sessions in) and waiting for them to get everything together...so by noon I might be done...we usually miss the next ferry at around noon, so that means waiting around, again with our two dogs, for the late afternoon ferry. This is an isolated area in Canada so if it's cold and raining one just sits in the car and shivers until the ferry decides to arrive. If I could just hop in my car, have the infusion and go straight home w/o all this other crappola it might make it more attractive. I just could not face another long day, one in which driving & sitting so long also causes migraines.

Perhaps missing one dose will make a big difference. Perhaps it won't. The jury is out on that one - no one seems to know how many herceptins are necessary including Dr. Slamon. My onc said missing one dose would not matter. I am having trouble taking AI's so he wants the herceptin cleared out before we begin on that regimen. Or I may take Tamoxifen - depends upon what my CYP2D6 test says. I can always do the last herceptin if I don't do the hormone therapy. I am weakly ER positive so it is not as important for me as it is for you who have strong ER+.

There are many women with her2+ who have not had herceptin and they are fine. Many just do the AI's. Some studies show that fewer months of herceptin is just as good. The body can also become resistent to herceptin and who knows that this has not already happened? I still find it curious and not very scientific that herceptin cannot be measured in the body. Any other antigen can be measured.
I'm not saying herceptin isn't good - for some people. For me, it makes me ill and I'm enjoying feeling pretty good these last few days w/o that stuff in my body.

I've been at this medical thing for awhile now. I'm tired and fed up. All I hear from doctors is 'we don't know'..about how long to take herceptin, how long to do AI's....how long to take Tamoxifen....they know very little about her2+ and even less about the women who are weakly positive. So I will be AWOL for another few weeks and let my body rest, which it hasn't been able to do since 2006. Then I'll hit it again with either/and one more herceptin/AI's/Tamoxifen.
Dianne

BonnieR · 10-13-2009, 02:37 PM

That is a punishing routine you have been on and I admire you for going the distance.
What does your doctor say about your decision? Have you discussed it?
I only did 4 rounds of TCH instead of the "usual" 6. I suppose it could be argued that I put myself in jeopardy by doing so. But it was at my onc's recommendation.
I agree with you in wondering what is the "correct" number of doses. It may be arbitrary and probably not really assertained until more data accumulates over the years. Opinions probably vary.
The biggest thing is that you need to be at peace with your decision and not feel you have to justify it.
Keep the faith.

DianneS · 10-13-2009, 06:19 PM

Thanks Becky. Yes, it was a long haul, especially in the winter.

I just talked to my onc and she said that the study done on herceptin didn't mean that all of the women who took part in it completed all 17 sessions. I didn't know that! Therefore the results are based on a benefical response of about 50% but that does NOT mean that only women who did 17 tx had a response. Some did only 1/2 of that. The numbers vary. As you know, and as she said, there is no magic number for how many herceptins one should get.

I feel like swimangel because I had a double mastectomy when I only needed one and I did not have any positive nodes or vascular invasion. I am told that's important, so I guess it is.

Anyway, if I feel I want one more herceptin I can still get it. Insurance isn't an issue here, thank goodness. The next big decision won't be herceptin, though, it will be whether or not to go on either Tamoxifen or an AI.
As I am weakly ER positive this is another gray area that no doctor really knows about.

Geez. Sometimes I feel like there is no progress with breast cancer at all. I feel like a @#*% guinea pig!

Dianne

Laurel · 10-14-2009, 04:25 PM

Dianne,

In light of your onc's findings and that unbelievable hike to the infusion center, I would do just what you have chosen! I love Canada. We spent many summer vacations up in Quebec. We traveled by jeep back a long, dirt logging road (150 miles long!) to old, abandoned camps on these interior lakes. Sometimes we'd travel all day by boat portaging between lakes and camp on the islands. In hindsight, my parents were nuts! Three little kids in the middle of nowhere, can you imagine? They loved to fish. The walleye and pike were abundant and huge! After reading your posts I can appreciate just how difficult your journey is. I say well done to have finished 17 Herceptin and all of your chemo! Bravo to you, brave lady!