Help Me Understand Please

Mary Jo · 03-13-2007, 06:47 PM

Help me understand please. After reading about the Tykerb approval and how it is to be used etc. I became confused. I was diagnosed with stage 2. Had Pet/Ct, MRI of both breasts and chest x-ray after diagnosis and had no mets. Just my 4.5 cm tumor in right breast and 1 microscopic cell in 1st sent. node. I received 4 dose dense A/C and 4 dose dense Taxol with herceptin (herceptin received every 3 weeks for 1 year). Now my question and confusion...........................hypothetically now (smile) IF (and that's a HUGE If) I would have a recurrence (which I am not - smile) would that mean that herceptin didn't work for me? Does that mean that I now have metastatic breast cancer? Would I then be given Tykerb and Xoleda (spelling?) Just curious and happy to hear that we now have yet another weapon in are arsenal against this disease. Praise God.

Thanks for your help in understanding this.

Mary Jo

Bev · 03-13-2007, 07:56 PM

Hi Mary Jo,

I'll just hazard a few guesses until someone comes to our rescue.

If you were to get another breast tumor it would be a recurrence and not a met. This newbie would be tested and you would be treated almost as if you never had the first cancer. Almost in that they don't do rads to the same place twice, etc. It could even be HER2-, in which case you wouldn't do H or Tykerb.

If you have HER2+ BC show up in your brain, bone, liver or lungs soon, that would be a met. I think we could say the Herceptin failed and Tykerb could be useful for further treatment.

It's too late for us I think, but they may eventually use Tykerb and H as adjuvant treatment for early stage. The Tykerb would help prevent brain mets as Herceptin may not be able to do this.

Good question. Curious as to how others interpret this. Bev

jessica · 03-14-2007, 07:19 AM

Just want to help clarify...
A recurrence can be LOCAL or DISTAL
A DISTAL recurrence is considered metastasis - this is Stage IV disease.
This disease can be really unpredictable & unfortunately, it is possible to have a distal recurrence (mets to bone, lung, liver or brain) w/o a local recurrence.
You'll find stories here of women dx'd w/Early stage disease, completed all treatments(surgery, chemo, rads), only later to discover mets elsewhere.
Also, it may be a matter or semantics, but I would consider Herceptin successful if even just slowing or controlling disease, not necessarily just preventing progression.
I've had multiple (

) recurrences while on Herceptin. From Stage IV@ primary dx, to NED & herceptin only, then single met recurrence in liver, then 2 new malignancies @the site of original, after lumpectomy & excisional biopsy. BUT I've always liked to think that Herceptin was helping control the disease.
Herceptin itself is still too "new" a drug to have true LONG TERM data on the full range of it effects. Regardless, Thank God w/Tykerb we do have another wonderful drug on the shelf!

Keep the Faith~

atdec05 · 03-14-2007, 09:18 AM

Hi Jessica,

Do I understand correctly that you have had recurrences while on Herceptin, but have still continued with herceptin?

I had a local recurrence after mastectomy, and will be having rads since I didn't before. My onc. is saying no additional chemo, even though my LR happened during Herceptin. I asked about PTEN testing or other testing to see why/if the Herceptin failed. She said she would try another drug if there was progression.

- Anna

Becky · 03-16-2007, 02:11 PM

Jessica explained things very well in regard to local versus distant recurrence. A local recurrence does NOT mean you are Stage 4 but a distal recurrence does (ie: mets to bone, lung, liver etc).

Also, another lump in either breast could be a recurrence or a brand new cancer therefore pathology testing is very important. In a local recurrence, it does not mean Herceptin (or chemo for that matter) did not work. Most local recurrence occur at or near the scar. Scar tissue does not have very good circulation and IV drugs usually do not penetrate well at these sites.

If one progresses to Stage 4 or progresses while stage 4 and has used Herceptin, it does not mean that Herceptin does not work in some regard. Herceptin is a magic bullet - in some cases that bullet kills and in others it wounds but does not kill. I think Herceptin always helps but in some of us, there are other receptors that are also active in our cancers but not blocked because no one has discovered them to come up with a drug for that receptor yet. That is why research is so important to all of us.

Tykerb not only works differently but it also works on the Her1 pathway (although the drug does not work well on women who are only Her1 and not Her2 as well. That is why the criteria for using Tykerb is that you are Her2+) so there is that added benefit of blocking Her1 (which many of us don't even know if we are positive or not).

If you did recur, your oncologist might try something else with Herceptin first and see if you progressed before trying Tykerb (making an assumption based on real time not years in the future because there could be a zillion other choices then). Because Herceptin mixed with a different chemo might just do the trick and you might want to save Tykerb for later or see what other drugs and combos work best with Tykerb (via all the trials they will be combining the drug with to see what works best).

Have a nice weekend

atdec05 · 03-16-2007, 02:44 PM

Hi Becky,

Thanks for the explanation. I'm a little frustrated because there are tests available that could determine whether the Herceptin could work with another drug, but my onc. isn't doing them.

I know my recurrence is local, but statistics are that 50-75% of women with local recurrence after mastectomy become metastatic.

My onc. & radiologist also gave the same explanation of how IV drugs don't reach the scar site...yet I guess the cancer cells got enough blood to grow!

Well, I had my wide excision yesterday as well as 3 biopsies for growths that have appeared in the last few weeks. So I'm waiting for my pathology report now.

I will also get a 2nd & 3rd opinion to see if there's anything else I can do other than radiation. I took a look at some of the Herceptin & Tykerb trials, and many (all)? of them state you have to have done Taxol, which I didn't do.

- Anna

hutchibk · 03-19-2007, 04:50 PM

Hi - I too have had recurrance while on Herceptin. I did not get Herceptin until my first recurrance (small metatstatic spots in lungs, chest nodes, and one under arm node - Sept 05)

At that time my doc put me on Herceptin/Taxol/Carbo, every 3 weeks until NED. (about 7 or 8 cycles) Then he left me on Herceptin alone, every 3 weeks. I did very well, until July 06 when we saw the tumor markers start to inch up. PET revealed that the chest nodes were shining again and he immediately added Taxol back to the mix in August 06. At that time, he shared with me that Herceptin alone does not always do the trick for some, that often Herceptin is more effective in combo with chemo. So that is where I am today. I will find out more next week, but last check 3 weeks ago, my markers were still stable and CT and bone scans showed nuttin' new. We will schedule a PET soon to make sure all is still quiet.

suzan w · 03-20-2007, 08:47 AM

Here is a loaded question...!!! Does anyone think that tykerb should/could be used BEFORE a recurrence or met??? In a preventative setting??? As you can see by my signature...am so far NED...since my herceptin ended I have sort of felt like I am free-falling without a safety net. I see my oncologist next month and will ask her this. Thanks!

Sherryg683 · 03-20-2007, 09:08 AM

Susan, I know they are using Tykerb with Hercepin in a trial right now. You have to be stage I or II but what I can read from it you can not have taken any other chemos to qualify. So I guess that's for those with active cancer. What I really want to know is also about preventative. I am really leaning towards telling my Oncologist to put me on Tykerb with my Herceptin to help keep it away. I just feel this cancer is so agressive that we have to be agressive in keeping it away. Since Tykerb is a pill, easy to take with little side effects, I am sure we will start seeing it being given as Herceptin is now..sherryg683

hutchibk · 03-20-2007, 09:19 AM

Sherry, I was reading somewhere last month (will try to find it) - that the side effects of combining Tykerb with Herceptin can be a bit nasty, at least from what they were seeing in the trials, so just be prepared for that possibility. I don't remember the specifics... I will try and find the study I was reading.