A Few Misc Questions on what's next?

[PatriceH]

I've already been through chemo (carboplatin, Taxotere, herceptin) for 6 cycles. Lumpectomy, radiation.

My first onc moved away so I switched to another at the same office. The first onc said I would get "time served" for the herceptin I had during the touch chemo. Which would put me at the end around June (treatment every 3 weeks)

We stopped during the surgery and radiation phases because he wanted each step to be pure on it's own merits.

Started back on herceptin in November. Onc #2 says I have to start the year in November and No, I don't get to count "time served"...which puts me into November 2010! Yuck! That we have to start over because the break was too long. Anyone else experience this?

Onc #1 said I would have mammogram or MRI alternating each every 6 months. Onc #2 says, no just Mammorgrams once a year. This scares me to death! Anyone else heard of this "plan?"

I asked about PET Scans and bone scans. Onc #2 said they don't prove much, you just end up with a bunch of tests in the end. That he monitors via thorough physical and reports from me about pain. Onc #2 says I would see him and surgeon alternating every 6 months. ANyone else heard of this "plan?"

How could doctors at the same facility be so different in their approach?

Despite the fact that Onc#2 is so businesslike and clinical and Onc#1 was friendly and made me feel comfortable. Onc#2 made me cry...but did losen up a little when I told him I wanted to make sure he was treating a person and not a national standard...the term he used to respond to all my questions.

I won't see him for another 12 weeks, although herceptin treatments continue...so at least I have 12 weeks to gather my courage to face him again and clarify these questions after input from the real experts...people who have lived through it.

Thanks for you input!

[Jackie07]

Patrice,

Congratulations on completing your surgery and radiation. Herceptin is generally recommended to be given for 1 year after surgery. Judging the fact that you've had some unpleasant side effect from the treatment, I can understand why you are trying to determine what the 'standard' time frame is for Herceptin.

I remember one posting mentioning that Dr. Slamon - the Father of Herceptin - had stated that he's not sure if Herceptin has any benefit to the patient after being administered for one year. A British study had concluded that 11 weeks worth of Herceptin has similar result (98% of the effect) as the 1 year treatment.

In my own case, I had to stop Herceptin after a total of 22 weeks (counting the 18 weeks of TCH after radiation) because of reduced Heart function. There are a couple of long-time survivors here that stayed on Herceptin for over 8, 9 years until they had to quit because of reduced heart function. Many of them just used it for maintenance even when there's already 'no evidence of disease'.

So there's a lot of flexibility and individual situation here. I hope you will be able to reduce your side effect and get as much benefit you can from this miracle drug. Take it easy and smooth sail...

[Jean]

Hi Patrice,
Good for you finishing TC...you are now on the easier part of treatment. Herceptin evey 3 wks goes pretty easy without the side effects like TC.

The study trials are not out yet (we had expected ) to hear the result between 12 months of herceptin verses 24 months..but the results have been postponed.
The study is expected ...but the feelings are leaning in towards 12 months of herceptin. The trial is still assess the comparison.

My thoughts are if you are getting a few extra treatments of Herceptin..I would not be concerned.
Take the additonal herceptin treatments as onc. #2 is suggesting.

As far as check ups. This is what I do but it does not mean it is protocol...but my rad dr. who found my very small tumor and I have worked out a system of the following.
I have a digital mammo then 6 months later I have a breast MRI then next 6 months back to digital mammo.

This works for me and I have peace of mind. I had a mammo in Sept. 04 and all was fine..but just 5 months later I felt an ache deep in my arm pit did not feel any lump...I insisted on another mammo even though the dr. was telling me "breast cancer does not hurt"....a 6 MM (very small ) was found.

You have to do what works for you it is your body and life. Dr. follow a standard of care. Everyones body is different and unique. While stats are used (Dr. have to use them) if you are not comfortable go with your gut.

I don't understand why your onc. #2 would not be seeing you for 3 months...you have not completed treatment. You are supposed to see your dr. before each and every treatment. Blood is drawn and until it comes back you do not start treatment. I would ask him why before herceptin every 3 weeks he is not checking you?

As a base line in the begining I think it is wise to have scans...but most dr's for early stage patients will say it is not needed and they present more problems and issues.
I do understand this..but I needed to have the scans to be sure nothing else was going on. Just remember there are false positives and this is why the Dr. are not eager to order them for early stage patients without having a symptom.

In my first scans a nodule was found on my lung. We watched it closely for 2 yrs. it has not grown or changed. It could have been there for years who knows. But I would rather know what is going on.

I also did have a MRI of the brain also to have a base line.

Just tell your onc.#2 that you want to have your mammo
every other 6 months...and thats that. Just make sure you have digital mammos....which have much less raditaion involved. Do what makes you feel comfortable, it is your body.

I wish you the very best during your herceptin treatments.

Kind regards,
jean

[Lori R]

Patrice,
Congrats on making it well down the road to recovery....a few thoughts from someone with a Stage IV point of view.

*Be aggressive with your treatment. Has Herceptin caused you significant side effects that could cause you to need to not go the extra few miles of this journey? You would never want to look back and think that you didn't do everything in your power to prevent a recurrance. My vote...take the extra herceptin.

*Find a Dr. you love. At this stage consistent follow up is critical. If you don't like your Dr. I would bet that you would delay making appointments. The timespan could inadvertently grow longer and longer. Do you have other options? It will be time well spent to find that perfect match.

* Push for the level of testing you are comfortable with. I've had liver mets twice and I've NEVER "felt" a thing...no symptoms...nadda. So please, do not go to a Dr. that uses the approach of all is well until it hurts. Believe me ...I know first hand.

I fully understand that you want to be FREE...never having to think about cancer again. But...the best thing you can do for yourself is receive adequte follow up and celebrate each and every time you pass your tests.

Carolyn suggests purchasing a new Coach bag...sounds like a good idea to me. And of course, there is the fall back of chocolate and lots of it.

DEMAND what is best for you.....Lori

[Becky]

Hi

Your question is difficult to answer because normal protocol for Herceptin is 12 continuous months. Most oncs would NOT stop the Herceptin during surgery or rads (Herceptin has been shown to be synergistic with rads). That said, if you had 12 weeks of Herceptin and stopped, you would need the loading dose to resume and then continue for 40 weeks to make it a full 52 weeks.

Your new onc wants you to have one full sequential year (meaning 64 weeks - the 12 you had plus another yr). This regime, although unproven to be extra beneficial, would be entirely up to you (and if your insurance will pay for the extra).

For the record, I had 16 months of Herceptin instead of 12. There was only one reason for this. I did not have Herceptin during chemo because it wasn't available then. I started 4 months after chemo was completed. When I reached my year my onc said, "if your insurance will pay for 5 more triple doses, you will reach your 2 yr survivor mark (when the chance of recurrence is highest). Let's do it". This approach made sense to me. Unfortunately, hitting the 2 yr mark now that it is approved means 9 more months of Herceptin and that is not protocol.

Your new onc's approach is your call. Either method will be fine (52 weeks period or another full yr).

[weety]

Hi Becky, I'm curious about the comment you made about herceptin having a synergistic effect with rads. My onc has suspended my herceptin treatments during rads (and this of course makes me nervous) and I'm just wondering if you have any links to the info so that I can show her or at least have my arguments ready!

[Becky]

http://www.stormingmedia.us/09/0992/A099283.html

http://www.sciencedaily.com/releases/2009/11/091103102242.htm

[Rich66]

Me thinks the extra Herceptin is a bonus. Me thinks the yearly mammo is bogus. Sure...concern over false positives. Ask him what the false negative rate is. See if he maintains eye contact. MRIs appear to be better at detecting some things, mammos other things (calcifications). Alternating gives you the benefit of each. MRI has no radiation issues. Of course, a local recurrence is not the biggest deal. I wonder if it wouldn't be smart to angle for an abdominal CT from time to time. Even if you have to use plastic to get it. A very early liver met can be removed by surgery or ablated. That is definitely not "national standard"...just what I would consider if my life depended on it. You will meet huge resitanvce on it. But I see how willing they are to use CT when someone has some pain in the ER. Not that I would suggest.......