Please Help: continue Herceptin or stop completely

LLL-6500

Ladies,

I am going to Mayo for second opinions on whether to continue Herceptin and what the "right now" risks are and what the "long"term risks are.  My EF dropped from 77 to 55 but has gone up to 59 and then 61.  All within normal range, but the first huge drop was enough we had to stop for 3 months.  I got Herceptin last week for the first time since Sept.  According to the guidelines, after 2 months of stopping it, it is to stop completely.  I was not ok with this and asked for 2nd opinion.  I am being seen at the Mayo clinic, which is the place to go ...  but I'm trying to get my list of questions written down and it's so overwhelming, I don't know where to start.  While I'm there I want to ask EVERYTHING from what foods are good/bad, environmental factors, etc.  And specifics aboutHerceptin and maybe I have gotten enough already? How do they know a year is long enough ? Maybe 6 months of it is just as good?  I don't think they really know for sure.  And if my heart is going to be damaged permanenetly, that is worse than bv if they detect early enough and treat bc....   I am very anxious and want to ask the right questions.  Anyone been where I'm at?  Anyone who took Herceptin years ago with problems and are now just fine?  Thanks for any help.  Appt is 12/22

Omaz

I know of two studies that are ongoing that are looking at herceptin for 6 months vs. 12 months (Persephone and Phare). 

http://www2.warwick.ac.uk/fac/med/research/ctu/trials/cancer/persephone/ 

http://clinicaltrials.gov/ct2/show/NCT00381901?term=Trastuzumab&rank=155 

Omaz

LLL - I know of two studies that are ongoing that are looking at herceptin for 6 months vs. 12 months (Persephone and Phare). I have my first post TCH echo in a couple weeks and am very curious to see what my EF is.  I started at 73.  Did you have any symptoms from your drop?  Its another tough decision!!

http://www2.warwick.ac.uk/fac/med/research/ctu/trials/cancer/persephone/ 

http://clinicaltrials.gov/ct2/show/NCT00381901?term=Trastuzumab&rank=155 

Marybetz

My EF went from 57 to 30 after only three Herceptin doses.  Cardiologist believes the low EF was due to AC (chemo) that I had this past summer, probably not the Herceptin.  I will have another Echo the end of January to see if the EF damage has reversed itself. Meanwhile am on two heart meds.  To my knowledge the plan is to resume the Herceptin once EF gets back to normal and they will closely monitor me. 

Marybetz

Oop, forgot to ask you...after you've been to Mayo could you let me know what they have to say?  I'd really, really appreciate additional info for my arsnal too!!

Hugs, M.B.

lago

They still don't know how much Herceptin is enough. 6 months might be OK but they just don't know yet.

I have had 4 tx (with TC) so far. I had a MUGA before I started but they haven't done another yet. I think they may do one after chemo is over (2tx left).

Usually the heart issues with Herceptin resolve themselves once you stop but if you continue to have problems they shouldn't keep you on it from what I've been reading.

You are ER+/PR+ so I assume you will be getting hormone surpression therapy too. That also is a huge factor in reducing your recurrance risk.

Let us know what they say at the Mayo Clinic… Good luck

LLL-6500

Thanks!!

will definitely post what I find out at Mayo.    Marybetcz:   Where is Wind Lake??

waterlady

I have been on Herceptin for a year now, and my EF went from 65% to 70%, simply because I walk hills 4 times a week and give my heart a good work out.  I also know of a woman who was on Herceptin for 16 years, before eventually going off it.  It is the Adriamycin which damages our hearts more than anything. Having metastatic cancer, I know I will be on Herceptin forever, unless they learn that it is not necessary.   Hope this helps.

marciab

Herceptin can affect your heart. However Herceptin is not the wonder that they claim it to be. Herceptin affected my lungs after I stopped it. Herceptin can cause pulmonary fibrosis in 4% of the patients. It is irreversable. My lungs became toxic from the Hercepitn. I was on it for a year. If you develop a cough and it gets worse, please see your pulmonary doctor. Marcia B.

LLL-6500

Up and off to Mayo.  Wish me luck ladies.

 update when I can.

Omaz

marciab - Truely sorry that happened.  Thank you for the information, I hadn't heard that.

lago

If you check out the Herceptin site you will notice:

Infusion Reactions and Lung Problems

* Some patients have had serious infusion reactions and lung problems; infusion reactions leading to death have been reported.

* Symptoms usually happen during or within 24 hours of taking Herceptin.

* Your infusion should be temporarily stopped if you experience shortness of breath or very low blood pressure.

* Your doctor should monitor you until these symptoms completely go away.

* Your doctor may have you completely stop Herceptin treatment if you have:
o A severe allergic reaction
o Swelling
o Lung problems
o Swelling of the lungs
o Severe shortness of breath

 Patient Counseling Information

* You should contact your doctor immediately for any of the following:
o New onset or worsening shortness of breath
o Cough
o Swelling of the ankles/legs
o Swelling of the face
o Palpitations
o Weight gain of more than 5 pounds in 24 hours
o Dizziness or loss of consciousness

 Source:  http://alturl.com/chsy4 

Omaz

marciab - did you develop the cough while still getting the herceptin infusions or did it start after you were done?

LLL-6500

Hi Ladies,

Have meant to post earlier... but time has gotten away from me.  Am getting ready and more anxious for surgery next week and should be doing other things right now, but wanted to check in with those of you who expressed interest in my appt at Mayo.

In a nutshell.... I am continuing Herceptin and will continue to get MUGA scans frequently.  For me, Herceptin is needed this first year to prevent recurrence.  The  benefits from this definitely outweigh the POSSIBLE risks.  My heart is functioning normal, and better than some people who have not gone through chemo, etc.  I saw 2 onc at Mayo, and they also took me off the Coreg, (heart medicine) as they said this is not proven to be effective.  I thought this was interesting as  a U of M onc prescribed this medicine to me.  Just goes to show that even the elite doctors are not on the same page with all this stuff.  ----  I was very impressed with everyone and everything at Mayo.  They know what they are doing there.... from check in and registrsation, lab work, everything was on time, everyone was knowledgeable and friendly.  

I don't have my notes with me, but I asked a lot of other questions about food, environmental stuff and basically they said - moderation.  There are so many theories out there... and we all need to do what we feel is best, but I am not going to give up ALL sugar, for instance.  Organic foods is another choice we need to make.  I am trying to buy more organic, they said that is fine, but they certainly didn't say it was necessary.  Alcohol for ER + is not recommended, however, a glass of wine once in a while is just fine.  I think our outlook and attitude plays a huge role too.  

They said an ECHO and MUGA are both acceptable tests.  I was told MUGA gives an exact number while ECHO gives more of an estimate.  They said, whatever you start having, continue with that test.  They did not feel I needed to see a cardiologist or have further testing.  My last MUGA was 61.  I had a jump from 77 to 55 tho, and that was the concern that stopped my Herceptin in Sept.  As far as Adrimycin affecting heart.  Yes, that's a SE, however, they really don't know.  Everyone is so different.  Our bodies, makeup, tumor, etc.  

They are not in favor of PET scans-- in my case anyway or the test to see if your metablozing tamox.

Sorry that this is just random thoughts- have to make notes for my PS appt tomorrow.

.  And remember, we are all different.  I know some of you have other ideas and different advice given.  This is what was told to me, for my case.

If anyone wants more specific info.  Feel free to PM me.  Hope this helps some of you.  

Hope you all have a safe and peaceful new year.

hugs.

carcharm

I started at EF 69% and my last echo was at 50%. It was 3 months prior to my last infusion that I was at 50% so they just kept going. I am do for an echo now. I have felt SOB alot lately and my legs carried alot of fluid but they just kept going. I am done now and the fluid in my legs in subsiding but I still have minor sob.

lago

LLL-6500 thanks for the update. It sounds like the Mayo people make lots of sense. I also agree in moderation. I think the key for all of us is to keep our weight healthy as well as eat right. The more we eat things that aren't packed the better. If you don't buy organic fruits and vegetables at a minimum you must wash them well to get the pesticides off them. Limiting red meat will also limit the crap they feed the animals from getting in your system.

And we all know one of the most important things we can do is exercise every day. None of this is a guarantee but it does put the odds in our favor… and also prevents us from getting other diseases/conditions other than just cancer.

nora_az

Laurie,

I go to the Mayo here in Phoenix and I couldn't be happier. I was told in regards to Herceptin that they keep it going no matter what. They will treat SE with medcine to keep it going. The only reason they would stop would be the hardening of the valves (I think that is how she explained it)

I feel I am in very good hands and I am sure you are too.