Herceptin 15 treatments later-questions!

Anonymous

Hi ladies,

I thought I had read on this forum somewhere that women have gotten reactions from Herceptin late into the regimen?  Or did I read that wrong?  I have done 15 herceptins so far, every 3 weeks.  Next one is coming up Sept. 17. So far my heart is holding at 70% via echocardiogram, but my kidneys have lost a bit of function. They are still working but not at top capacity.  I thought I read somewhere that a woman had a reaction from herceptin 1/2 way through, and has major heart problems?  I assumed that if you get this far you'd be ok?  I am wondering if I should finish the last two, given my kidney situation.  Normal GFR is over 60.  Mine has gone from 62 to mid 50's.  I'm not anywhere near dialysis but am concerned about doing more herceptin. Of course my onc does not think doing 2 more will be a problem, but he also said not doing two more won't matter.  Is that true?  Is 17 the magic number?  Do people develop problems this late into herceptin when they haven't had any in previous herceptin treatments?

Thank you so much.  You guys are awesome,

tuckertwo 

sheila888

I had 52 weeks of Herceptin for one full year, I didn't have any heart problems. It was checked twice during the treatment. But my liver enzymes were all out of range During chemo and I believe everything went back to normal after everything was finished. Some women do have heart problems . Don't really think that applies to you. My numbers were even lower than yours but in the range. I also read SE's are reversible once you are done .

Good Luck to you

 Sheila

Anonymous

I guess I'm just wondering if it will matter if I don't do the last two herceptins.  My onc says it won't matter.  Peace of mind, now that's a different thing.  I just don't want to have kidney problems.

Sheila - you said 'my numbers were even lower than yours but in the range' -were you referring to kidneys?  Did the numbers go back up after herceptin?

 Has anyone done a little less than the 17 required herceptins? 

 Thanks,

tuckertwo

sheila888

Tucker... I meant the heart numbers i think they were something like 60 or 62. No problems with kidneys. In my case everything went back to normal. Even cholesterol level was effected at some point. Chemo messes up everything. If it was me for my piece of mind I would've finished it.

But you're not me . Listen to your gut and your DR. You will be fine at the end.

bluedasher

Where did you see that Herceptin can cause kidney function problems? My creatinine has been elevated and my GFR is lower than yours (high 40s in the latest test) but I thought that was due to the bisphosphonate trial I was on. I quit the trial about 3 weeks ago on the advice of my nephrologist and I'm waiting for the numbers to get better. I have two more Herceptin treatments, but my onc doesn't count - she goes by the calendar so I'm scheduled to have 18.  At least my creatinine hasn't been going down and the nephrologist did a urine test for things like protein in the urine. I also had a kidney ultrasound (ordered by my PCP before I was referred to the nephrologist). The results of that are all fine so she says that there probably isn't any permanent damage at this point.

My LVEF numbers started at 65 before treatment and have only declined slightly to 62 at the last test (up a little from my previous test at 61 but that may all be just variation in the test). 

I'm slightly anemic and the onc says that may be due to the Herceptin. At least the anemia and the creatinine seem to have been stable for all my Herceptin treatments. I get number 17 today and then the last one in 3 weeks.

The only thing magic about 17 is that the largest studies for adjuvant Herceptin treatment all used a year of treatment. I don't think there have been any studies that had arms with 1 year vs a shorter time period (or there may be one I've seen mentioned but it was a very small study). There was the FinHer study which tested 9 weeks of Herceptin and it got good results but it was a small study and didn't have a longer Herceptin control arm so one can't tell from it whether there would have been benefit from longer treatment. 

My onc said that in Europe they often give Herceptin for 18 weeks for adjuvant treatment and that I shouldn't worry if I had to stop early. 

noellech

tuckertwo,

I had a slight decline in heart function after 14 treatments and I skipped the last three. Both onc and cardiologist decided I had had enough and should not risk my heart. Losing heart function scares me even more than cancer. So I stopped and haven't looked back. Good luck with your decision.

rosemary-b

I had less than the scheduled 17 Herceptin treatments and the onc would have had to tie me up and knock me out for me to have more.I was scheduled for 2 more herceptin treatments when 5 weeks after my last MUGA scan my LVEF went from 50 to 15. It is rare for this to happen late in Herceptin treatment but it does happen. Heart failure has been a horrible experience.

You need to decide what your priorities are and how much risk you want to take. There are studies that show that a shorter course of Herceptin is effective. My experience is unusual and I don't know if I would choose to have Herceptin if I had known I would have so much trouble, but it was unusual and unexpected. I would advise anyone on Herceptin to watch for serious side effects and quit if they occur.

Herceptin heart damage reverses itself in 50% of cases and my heart continues to improve 17 months later. LVEF is now around 35%. I will be on heart medication for the rest of my life no matter how much my heart improves.

Once again I want to say this is rare and you have to follow what your instincts tell you..

mmm5

Noelle and rosmary

I am curious did you have ACTH or TCH?

swimangel72

tuckertwo - I skipped my last scheduled Herceptin treatment because for some weird reason, my insurance company wouldn't pay for it. I figured "enough is enough" - and my onc agreed, it wouldn't matter. However, I was getting Herceptin every TWO weeks for a year - so my dosing was very different from yours. If you haven't yet done so, visit another web site dedicated to women with Her2+ BC for more information:   www.her2support.org

rosemary-b

mmm

ACTH which was what they used "way back" in 2007. Isn't it amazing how quickly things change. That always gives me hope for the future.

mmm5

You are right Rosemary and my Onc wanted to do ACTH and I was stage 1 too. I refused as I had done some reading and the recent study was out on TCH. But even with that data out there now ONC's are still recommending ACTH today especially on East Coast

 I am glad you are doing well on your BC and you are coming close to your 3 year mark which is huge for HER2 I am very happy for you.

It is good to tell your story on these boards as the same thing happened to a good friend of mine and she had CHF as well. She is young and much fuction has come back after 5 years  but like you, will be on meds forever. I am very happy that you see yours returning as well.
Be Well

noellech

I was on TCH but want to emphasize that my heart function decline was minor. Nothing drastic and I am not considered in heart failure although my cardiologist is pushing me to go on Coreg. Most people do very well on TCH with no problems.

weety

Bluedasher,

I'm not sure if it is the Herceptin or one of the chemo meds (taxotere & carboplatin) that affects kidney function.  But my onc has tested my kidney function eeach week so far with a Creatinine blood level test.  I'm already starting to get alarmed at it because each week it has gone up another point!  1st week-.5mg, 2nd week-.6mg, 3rd week .7mg.  Do you know if this is bad?

weety

Hopefully someone can answer this for me as well.  With Herceptin, does the lack of side effects mean it's not working in your body?  I know, probably a dumb question, but when you are diagnosed with BC at a young age (or any age for that matter) you start worrying about everything that could possibly happen!  I have only had 5 weekly treatments so far, but no side effects that I can notice.  No chills, fever, etc...  Just worried that I might be one of the ones who the "silver bullet" doesn't have a response in since my immune system doesn't seem to notice it!

Anonymous

weety,

 not having symptoms from herceptin doesn't mean anything.  they may just be too subtle for you to notice.  i had runny eyes, nose and a bit of a cough - some chilliness and fatigue.  If you got herceptin after chemo or during you may not notice that the fatigue you have is from the herceptin too. 

 tuckertwo

weety

Thanks tuckertwo,

I am now wondering if my shortness of breath might be from the herceptin.  I hope it is not my heart, though. I really can't tell if it is my lungs or my heart. I need the herceptin!  It is sort of like a pounding heart feeling, but I can't really feel the heart beating any harder or faster.  I think it is just a sensation.  It feels like I can't quite exhale all of my air, but the inhale is fine.  I don't know, it is a weird sensation.  I am going to bring it up on Monday when I go for treatment #3.

LibraLady59

I've been on Herceptin since about Mid April 2017. Before I started Taxol/Herceptin, I already had kidney function issues, however, after chemo but still on Herceptin, my kidney function has dropped to a bad level. Not terrible, but bad. I previously had a GFR (non African) bouncing back and forth between 44 & 33, but currently, it is 23. When GFR reaches 10 or below, that's when they start dialysis. I sure don't want that. A GFR of 50 is not bad and why your DR told you to not worry about it. However, I would also consider your age as there is always some loss of some organs' functions as you get older. I am 58 so ......

I have not had very many side effects from chemo or Herceptin. I feel blessed but I have felt for at least 6 yrs that my immune system is on overdrive, as I have not been sick with anything since I got the H1N1 Oct 28, 2009, so I sort of feel like my body needed to be immunosuppressed.

I got shortness of breath from decreased ejection fraction (EF) on cardiac echo, common with Herceptin use, so echos should be done every 3 months (as my dr as ordered).

As far as skipping the last 2 Herceptin, hell, you gone that far, why not just finish. Then you will see numbers return to somewhat normal. It should be remembered that any drug could potentially affect anything in your body. Dr will hold Herceptin though if your cardiac EJ drops too low. He skipped 2 of my treatments, which is 6 wks (as I go every 3 wks for tx).

Each med out there affects different people differently and everyone has a different medical history so don't rely mostly on what someone else has experienced. I have come down with a host of additional autoimmune diseases (including Sarcoidosis, mostly in lymphatic system but it is in my eyes also) during tx but who knows what the cause is, if I had it before and chemo might have triggered the show, or what. We will never know!! Once I finish my Herceptin, which will be sometime in June 2017, I will then hope that most functions return to a somewhat normal state.

I'm just rolling with the punches and strengthening my faith and trust in GOD!!

Bless all!!! Sher