Contralateral/Bilateral Tumor while on Herceptin?

My 35 yr old wife has developed a contralateral ER+/PR+ HER2+ tumor in her remaining breast while on Herceptin and being in chemo induced menopause.

Has anyone developed a contralateral/bilateral HER+ tumor while on Herceptin?

Her oncologist seems stumped as to what the next approach should be.



Here is a summary of events:
5/12/04- Original Diagnosis Core Biopsy - Right Breast Infiltrating Ductal Carcinoma, ER+/PR+, HER2 3+, Estimated at least 2.3cm.

5/24/04- Lumpectomy - Actual tumor size 6.5 cm, margins not clear, 14/15 nodes positive, Bloom-Richardson 7/9, grade 2. Bone & CT Scans clear.

6/12/04 Started Chemo- 4 Rounds AC (Dose Dense) + 4 Rounds Taxotere (Dose Dense)
Two Staff infections in right breast. One was MRSA.

9/04 BRAC testing negative / MRI of Left Breast Clear

10/21/04 Mastectomy Right Breast- found 2 multicentric IDC’s 2 mm & 1 mm Margins Clear.

12/23/04 Completed Chest, Neck & Axillary Radiation

1/05 Started 1yr Herceptin regimen and 6 rounds of Navelbine

7/21/05- had small lump in left breast removed.
Infiltrating Ductal Carcinoma, ER+/PR+, HER2+, Size 2.8 cm
Bloom-Richardson 7-8/9, grade 2-3, Extensive Lymphovascular Invasion present. Positive Margins. Has In-Situ component present, which means it is a new independent tumor.

8/8/05- Full PET Scan was clear other than hot area in left breast.

8/10/05- Left Breast Mastectomy with sentinel node biopsy. Waiting on path Results.

Give your wife a big hug. She's going through a lot. I believe having Infiltrating Ductal Carcinoma in both breasts is not typical.

As far as having a recurrence or mets while on chemo/Herceptin, yes, that is more common. Not common, I suppose, but it does happen. In the past 2 years, I have been on chemo almost constantly, when I wasn't having whole brain radiation.

From Herceptin/Navelbine to Herceptin/Taxol and now Herceptin/Gemzar, I seem to reduce one metastasis only to have another appear elsewhere. I do think the Herceptin is helping keep me around, but unfortunately, I'm part of the 1/3 HER2+ survivors who don't respond as well to the drug as others.

I'm sorry you and your wife have joined us on this roller-coaster. But I'm glad you've found us. You'll get support and information here that you can't find elsewhere. Several husbands are also active on the Board.

So please keep us posted.

Love and light to you both,

Lisa

[Lolly]

Boy, you two have been through the mill, give yourselves a HUGE pat on the back. Once the pathology comes back on the left mastectomy, your onc should have a clearer idea of the next step. If the pathology is the same on the left as the right, remaining on Herceptin while adding a hormone inhibitor plus a new chemo would seem to be logical. I myself am ER/PR- but I know many here are positive and will weigh in with their experiences with the different hormone inhibitors. I do know from reading their posts that Tamoxifen is not necessarily a good choice with HER2+ cancers, but again I'm not an expert there. BUT, there are many more chemos out there that are synergistic with Herceptin, as opposed to simply additive, or even antagonistic, so be sure to do some research on that angle so you will be prepared when you meet with the onc. BIG HUGS, and keep us posted.

<3,
Lolly

My cancer progressed while I was on Herceptin. I, too ,have had constant chemo since 12/02 in one form or another. I'm Stage IV Her2+/er- I was disappointed that Herceptin didn't work, but I'm still here. I have never been NED. You will find wonderful support on this board and hang in there with your wife. Never give up and never give in!!

Mike, Wow!! What an interesting case. I have been around the BC world for about 8 years and have not heard of anything exactly like it. I am ER-/PR- her-2 3+ and have no hormonal involvement so the bulk of my research has not focused on the hormonal components. So, most likely, I won't be much help. The reason I am responding, however, is I was VERY interested in your mention of MRSA. I do a lot of research with her-2 mediated cancers in relation to bacteriology. Just curious, did she get this particular STAPH infection from a surgery, an implant, or from a PORT??? Also, do any of her cancer episodes coincide or follow various bacterial infections to the best of your knowledge? Was she ever an oncology nurse?? (The one case I saw somewhat like this, ironically, happened to my oncology nurse about 6 years ago, she didn't make it...sighhhh, but that was before Herceptin was really accessible...) When reviewing your wife's bloodwork do you again and again note high Grans/low lymphs/ low platelets and high liver enzymes such as GGT, ALT, etc, or low bile???? Is your wife's bloodtype A negative??? Are you aware of the research going on which is linking her-2 elements in hormonal NEGATIVE cases to a root bacterial element? Again, I am only familar with it as it relates more specifically to the ER-/PR- her-2 mediated tumors, but I would be interested if you have any comments as it seems you are very knowledgeable about your wife's case. She is very lucky. I have been a single parent going through all of this alone with no family nearby for 8 years, raising a small son. My heart goes out to your both. Best of luck, Gina

Her first Staph infection occurred in July 04 which was 9 weeks after her lumpectomy but between AC Chemo #3 & #4. She got the MRSA infection about 5 weeks later during Taxotere. Her cancer did not seem related to any infections. She is not a nurse. Blood is O+. Her enzymes were all fine. All counts were low during chemo, but Neulasta helped. I am not familiar with the research about bacterial elements, but I am interested in reading more.

We now have the final path back.
Looks like the new cancer was ER- (only 3%) / PR+ (22%); Her2+: 2.9
Her surgeon initally said it was ER+. I think it is only positive if over 5%.

Her first cancer was ER+ (>50%) / PR+ (20-30%); Her2: 3+

The new cancer was larger than thought as there was a 1.0 x 2.5cm section found in the removed breast around the lumpectomy cavity. The mastectomy had clean margins, but the sentinel node showed minute foci of metastatic carcinoma with greatest diameter of 0.84MM.

Her Oncologist is seeking out other opinions from breast cancer specialists. Does anyone have any recommendations for good second opinions?

very, very interesting...

very complex as well, I'll bet. Thanks for supplying me with the additional information. That was very kind of you, but again, my main area of focus is ER-/PR- Her-2 3+. I wish I could recommend a GOOD onc but I really don't know any...that is supposed to be a bad joke..smile.

Sometimes humor helps. Let me see if I got this right. Your wife got a second, unrelated but somewhat her-2 involved tumor in her other breast WHILE TAKING HERCEPTIN???!!!! Incredible. No need to respond as I do not wish to trouble you unless you want to continue this thread, but I was wondering aloud, were you able to be seeing her tumor markers on a regular basis, at least the CA 27/29 which is often involved in her-2 cases? The one way I can think this could have happened is if her markers weren't being regularly checked and if somehow, she was not getting the right dosing of herceptin. When you are her-2, especially +++, as was her first tumor, you really REALLY have to stay ahead of the disease by dosing sufficiently with Herceptin. Sufficiently to me means using as much as frequently as YOU need to keep ahead of the the numbers, to keep them in range. [you have to wrap your head around the fact that MANY of us who are her-2 positive have serum her-2 levels that will rise continuously and exponentially if we do nothing...that is why with her-2 involvement you can literally die in a few months if you get right on it....sigh] You also have to be sure that should you gain weight while being treated--as often happens to many of us, that your herceptin is ajusted appropriately. It is surprising what as little as 7 pounds off can do to spoil the pie. Also, if her case was terribly agressive, the usual loading dose of 4mg per Kg of body weight followed by weekly doses of 2mg may have never been sufficient to slow the original cancer. So the her-2 could have still have had some role in promoting the growth of the second tumor, even though the tumor itself has some different characteristics. Of course, with her ALSO being so highy ER positive on the first tumor, you have to accept that besides her-2 promoting stuff, estrogen OR progesterone could have been at work behind the scenes as well.... Keep in mind that MANY of us with her-2 +++ have tumors form in other places...usually called "mets" while on the drug...and have to adjust our dosage or add chemo to get back to NED..., but it is usually possible. The problem is one has to be so on top of her own case, constantly monitoring the tumor markers and scanning and constantly taking Herceptin, no matter what schedule you're on. I am really lucky right now...after 8 years wrestling with this disease I am taking herceptin alone only every 6 weeks and feel like I have gotten my life back. I have experienced mets in many places, but so far, not the other breast...hmmmmm....and of course, her doctors are NOT reading this as mets but as a new PRIMARY, I think. hmmm. Thanks for the info about the MRSA...doesn't sound related to the original cancer...I have been toying with it and other bacterial elements as possible mets promoters...a bit complicated, highly controversial. I would be interested to know --again, only if you and your wife are comfortable sharing, if prior to the FIRST tumor, did either of you experience stomach troubles, especially ulcers, or did EITHER of you have a bout of pneumonia that you can vividly recall, even a few years prior to diagnosis. I am also studying tuberculosis bac and Legionaire's disease in relation to certain cancers...did either of you ever live with or where a bird was or had been in the home, especially an African grey or other type of large parrot?? for any extended time (avian bac/ c. pneumonia). I am especially worried about the role of ports and other inserts in promoting the role of infections during treatements as while on chemo, counts go very low, as you duly noted. Also, there is always the body's tendency to try to reject foreign objects (ports) and breast implants...which contributes to gumming up the way the immune system functions, preventing it from working at optimum) Again, I think your wife is lucky to have you on her team. I will check in now and again to see how you are doing.

As far as treatment options--you could at least run some of these by several oncs, one of the first things I would try, but remember I am NO onc and can not prescribe would be...smile...

1. FIRST, find out how bad her CA 27/29 markers are in conjunction with her serum Her-2 levels...these are both simple, cheap blood tests...but sometimes you have to force the oncs to let her take them.

2. IF and only if it was for certain, she had out of range CA 27/29 and serum Her-2, here is what I would do if it were me:

3. First, I would have the onc prescribe for her a Z-pak just as a precaution to kill out any lingering bac she may have had or have picked up with all that surgery and chemo.

4. Once she completed the z-pak, I would start her IMMEDIATELY on a NEW LOADING DOSE of 8mg/per kilo of her current weight of herceptin, but VERY IMPORTANT, DON'T let her take ANY pre-meds with any herceptin. Another common reason herceptin fails is because oncs unknowingly continue administering the Benadryl prior to each Herceptin dose, week after week after week. Using it the first time somebody takes Herceptin is fine, just to avoid any chance of allergic reaction to the drug...but once it has been established that one is NOT allegic to herceptin (almost nobody is) Benadryl or other IMMUNE - suppressing drugs should NEVER be used in conjunction with Herceptin. This has to do with the way the herceptin works...it locks on to the her-2 receptors, but then one's immune system has to come along and clean up all the tumor debris, a very immuno- intense process which is hampered considerably by drugs like Benadryl suppressing the immune system when the body needs it fully functioning the most. When Herceptin was first released, Benadryl was never intended to be used with it at all..you can read all about it in the great book, THE MAKING of HERCEPTIN..., it was an afterthought of an onc --not a herceptin researcher...that added it to the pre-meds...Likewise, I highly discourage the use of Tylenol or other pain meds with Herceptin for liver reasons too lengthy to go into here. Important to keep the liver clean, strong and fully functioning.

5. The next week, move down to the 6mg per current body weight and administer Herceptin weekly thereafter at 6mg or 4mg or 2mg to keep the numbers down and in check. Ideally, keep the Ca 27/29 around 10 or so and the serum her-2 under 12. Use the amount and dosing frequency necessary to maintain this. At the very least, this should help reign in the her-2 promotion side of the primary cancers...obviously you are a bright man and it is not lost on you, that if now she has had two primaries, mets is a REAL concern.

6. Somehow, then, the ER+ first tumor and ER - second tumor needs to be addressed...perhaps the best way is to forget about the ER part and just go after the PR + part. I do not know what the protocol is when someone is PR +, but whatever it is, she should follow it...sounds like she may have been taking Tamoxifen or something for the first primary that apparently may have kept the estrogen in check as the second primary, does not seem to have the full-blown estrogen component...Perhaps she should continue whatever she was doing to address the estrogen part as a continued precaution. Interestly, the her-2 component was a little less...one has to ask if the Herceptin she was taking had ANYTHING to do with that??? Puzzling...this case is...smile....

7. Even though no one gives much credence any more to bacteria as fundamental cancer roots..., it has been my observation over the years, that folks who treat their breast cancer (regardless of type) more as an infection, than a "typical cancer" live longer...what I mean by that is those who eat immune -boosting things, walk or take other exercise, get plenty of sunshine for vitamin D, drink clean water, and in general, refuse (as much as possible) pain and other non-essential meds which can, like Benadryl dampen the immune response...well, those folks just do better and have a higher QOL, in general... a great sense of humor and a Candide-like sense of NAIVE optimism (of which I am blessed in abundance...smile) doesn't hurt either...smile.

Seriously, if it were me lying where she is, these are definitely things I would at least consider. Best of luck to you, keep us all posted...we do care. Gina

Her CA27/29 levels have been checked regularly with no notable changes. I also had her Onc check the levels as soon as we found the 2nd cancer. Levels were normal. It is my understanding that these levels usually only rise during mets.

She has not had her serum HER2 levels checked. Her Onc said the test was only usefull to diagnose HER status when tumor tissue was not available for testing. I will ask him to test and monitoring this level.

Speaking of infections, she has developed a Pseudomonas infection around her drain. She had the drain removed and is being treated by oral antibiotics and this seems to be working.

Her Onc wants her to do a combonation chemo of Herceptin / Taxotere / Carboplatin every three weeks for six treatments then radiation.

She had no unusual diseases or infections prior to her cancer and we have not been around any birds.

Thanks for your thoughts and I hope things go well for you. Mike

Mike,

Thanks for the info...just want to make you aware of ONE very important detail. In nearly 3 years of testing the CA 27/29 side by side the Serum Her-2, I have found that the CA 27/29 can be within NORMAL range, aka, less that 38, while the serum her-2 is much higher and out of control. If I were you, I would not rest until I knew for certain where the Serum her-2 was. In the grand scheme of things...thank god she did get the antibiotics...overall, that can be a big help, if for nothing else but to start her out on a clean path.

That said, as we suspected...this case is tricky. It may turn out that the her-2 is not the driving force behind this second tumor, but I would definitely USE the HERCEPTIN in any treatment regimen...actually, the one you mention, doesn't sound too bad...certainly a good one to start with...sorry you are having to go through this...is your wife A negative blood by any chance...If she is negative of any type, it may cause her to be slightly more susceptible to infections. Also, as silly as it sounds...putting baby desitin on her feet every night (the original with 40 per cent zinc oxide as the active ingredient) will boost her Lymphs and thus raise her immune function and energy level...plus, it is a nice thing you can do for her...I feel so sorry for caregivers sometimes...in so many ways, watching is worse than experiencing. That is why for years, I tended to push so many people AWAY from me, but now, as you can see with some of my postings on this site, I am trying to resocialize once again. Godspeed to you both, Gina