Treatment Question

[MJsHusband]

I would like some feedback on the treatment MJ has gotten since being diagnosed. Does the regimen listed in my signature seem in line with what most patients would get with this diagnosis? Does anyone think anything different should have been done or should be done going forward? Sometimes we just trust the oncologists to do the right thing. Thanks for any feedback on this. I appreciate the experience and knowledge of you all. I'm glad I found this site. ~Greg

[kk1]

Hi Greg;

Reading the signature, it seems like it has been a good plan and similar in many ways to my treatment. I am a strong supporter of the combination of chemo therapy and surgery to remove the tumor load and prevent reseeding when possible. In some cases I think it can even lead to cure. Mj is a responder, getting to NED and staying NED in the liver for 18+ months is a really good sign. The uterus mets is as you know a bit unusual but doing the surgery and then chemo seems a sound approach .

From my personal experience, you might want to discuss with the onc doing Tykerb and Herceptin as maintenance when the scans are clear in June. For me anyway, it seems to have work well as you can see from my signature.

[CoolBreeze]

They only thing that seems odd to me is that they discontinued chemo. I wasn't IV at initial dx, but was found to have mets to my liver after my original tx ended. I had a liver resection and am on chemo. I don't think the plan was for me to ever go off chemo, although I did because I got a colon infection.

A lot of oncology is guess-work and they probably thought herceptin would be all the maintenance she would need. For several of us, herceptin alone is not good enough (I am one of them) so combining it with a chemo is the plan. Sounds like that's what they are doing now.

It's great she has gotten to NED twice - many don't. And, congratulations on the wedding! :)

[Becky]

Xeloda is chemo and Tykerb is common with it but why don't they add the Herceptin into this mix?

[Unregistered]

@Coolbreeze - Thanks for the response. Her oncologist stopped chemo due to how well she responded to treatment and had clear scans. Is it common for someone to continue to be on chemo forever? I would think that would be harsh over the long term. She responded to the Herceptin for a year and a half without chemo. Has anyone on here continued chemo after getting to NED? ~Greg

[MJsHusband]

Ok, I really need to remember to logon before posting on here..... :)

@KK1 and Becky - Thanks for your response. The doctor stopped treating her with Herceptin due to it failing to stop the metastasis to the uterus. I believe he felt like there was no need to continue it due to that. Or, he wants may want to see how she responds to Tykerb/Xeloda and hold off on using Herceptin unless her June scans show progression. I'd appreciate any and all thoughts on this. We will meet with him again next week and I would like would like to suggest adding Herceptin again if there seems to be enough evidence that it would improve her response. I obviously need to ask him more questions about why he stopped the Herceptin. I believe he said that it was due to it not stopping recurrence, but not 100% sure. ~Greg

[Becky]

Herceptin tends to work synergistically with other agents better than working well on its own. I wouldn't give up on it.

[MJsHusband]

Thanks Becky, I will definitely bring it up in our next meeting.

[MJsHusband]

Also, I'm not really sure what to expect for the June CT/Pet scans. Her mastectomy removed all the visible tumors from her breast, the hysterectomy removed all visible tumors from that region. So, there is no known tumor or lesion that we will be checking to see if it shrinks or disappears. I guess to make sure the liver lesion doesn't reappear or anything new?

I still can't believe the October CT/Pet scans failed to detect the uterine tumors that were found in January. We only found those due to her bleeding excessively and going to the emergency room. They initially thought it was endometrial cancer and said it was Stage III 2c, which is just shy of Stage IV. I would think tumors that advanced should have shown up on a scan 2 months prior.

Of course, this experience makes me a little leery of trusting the CT/Pet scans. Was this an anomaly, much like the rarity of BC mets to urterus?

Thanks, ~Greg

[chrisy]

I was not stage 4 at diagnosis, (was stage 0!) but my case is similar in that my first chemo regimen was in response to my stage 4 dx of extensive liver mets.

My chemo combo was similar, taxol/carbo/herceptin for 6 cycles, then maintain on herceptin alone. I'd already had the mastectomy...
And of courses didn't get the wedding in Jamaica, but that's ok!
In my case, the Chemo put the liver tumors into complete remission, and I was able to maintain on every 3week herceptin for 2 years before things woke up, as they tend to do unfortunately.

I should mention tho, that it was always that plan to stop after no more than 6 months. (or one more cycle after "best response"). This was the shared opinion of both my Stanford associated local oncologist and my UCSF breast oncology guru. The thinking here is, you want maximum efficacy with minimal toxicity. TCH was hitting it hard - and worked - but it was important to conserve my body's resources for the future. The disease can be managed, sometimes for a long time, but there will likely be many more battles to be fought and won along the way as you are aware.

It seems your wife's treatment has been reasonablly aggressive - I like that they've gone after the recurrence surgically backing it up with chemo. I agree with becky, you might consider adding herceptin back into the mix. Sometimes the cancer finds a way to "escape" the herceptin alone, but there is abundant data that there can be continued synergy, with chemo as well as with tykerb. You always want to have a her2 targeting agent in the mix.

Take care,
Chris

[MJsHusband]

Thanks Chrisy for your insight. ~ Greg

[phil]

Tykerb xeloda is a standard tx for metastatic Her2 , my wife was on it twice, hard s/e . gave her about 6 months remission at one pt. Never did have it w/ herceptin. Probably a good idea to add it. That missed pet / ct is something to ask doc about , how could apet miss cancer in lower pelvis ? Either it grew real fast or the scans werent properly done. pets are very exact, looking for hot spots , cancer cells up-taking sugar, ( thts how i understand it. ) I put alot of faith in pet , plus new tumor marker blood tests. i like to ask doc what theyre thinking of in future , so , if needed , i already know a little about them. I would want scans very 3 months at least . We went on to various combos that didnt work after tyk/xel. carbo, w/ herc think, then abraxane/ avstin , etc. Some pts get a better run from tyk/xel. than we did.
finally got tdm-1 , which is the bomb for pts who strongly overexpress the her2 protein. Ask about it, it has great effect, w/ fewer s/e than other chemos. my wife is 18 months w/ steadily decreasing tumors , and no detectable cancer last 6 months , after being in constant tx , Stage IV for previous 4 + yrs.

[MJsHusband]

Thanks Phil. I'm hoping for a great response with Tykerb/Xeloda. If not I guess we may try adding Herceptin to that combo again and then if that doesn't help, I guess TDM-1 will be next if we can get access to it. I still don't understand how to enroll in clinical trials, but I'm sure if/when it comes to that I will be a quick learner. I'm glad your wife is having success with it and hope it is the next "miracle drug" for Her-2.
Yes, I'm thinking I will feel better with MJ getting scans every 3 months instead of the current 6 month schedule. The oncologist seems to be very optimistic at this point with the treatment. ~Greg

[Mandamoo]

There are many hopeful stories here - your wife has been NED at one point so that is great! I have never been NED and so far not had wonderful response to treatment but tykerb and xeloda is doinga good job for me at the moment and for the first time I have seen some regression of the cancer!

You asked about trials - you usuallyhave to have some measurable disease which it would seem I your wife's case currently she is NED so would therefore have some trouble getting onto most trials apart from perhaps some of the vaccine ones.

I wanted to ask Phil about tdm1 response - are they able to predict responders at all? I haven't had much luck with herceptin in combo with chemo but seem to be responding better to tykerb - are they predicting who may bettere respond to tdm1?

[Joan M]

Hi again, Greg,

I'm the person who started the discussion, why isn't your wife still on Herceptin? And I think you've gotten a lot of good responses from members of this board regarding their successful and unsuccessful treatments with and without Herceptin.

I had stage 2 breast cancer in 2003 which was treated with a mastectomy, adriamycin, cytoxin, taxol .... and Herceptin off label. Off label means that Herceptin had been approved for stage 4 breast cancer several years earlier but not for early stage breast cancer. At the time I took Herceptin it was in clinical trials for early stage, but I didn't want to go into a trial fearing that I would get randomized to the arm that didn't get Herceptin.

As it turned out, my oncologist gave me Herceptin each week for 1 year, anyway, since it was freely available having been already approved by the FDA for advanced breast cancer (stage 4).

Fast forward to 2007 when the breast cancer spread to my lung: one 1 cm nodule in the apex of my left lung that I had removed with a wedge resection (surgery). It recurred again in the lung in the same area a year later even though the margins were clean, and I had it ablated with radiofrequency ablation (RFA).

The ONLY drug that I've been on since January 2007 when my cancer became stage 4 has been Herceptin. So, needless to say, Go figure, since the drug obviously didn't work the first time. Since the tumor had been removed surgically initially and then via RFA, my oncologist offered to give me an "adjuvant" course of chemo (xeloda, tykerb, and herceptin), after each of these procedures but I declined since at the time I was working (adjuvant, meaning 3-6 months of the chemo drug, which is xeloda). (In 2008, the breast cancer spread to my brain and I had a craniotomy and targeted radiation to the tumor bed. But that tumor was HER2-).

Coolbreeze said it best above, "a lot of oncology is guess-work." I would add, a lot of it is a crap shoot. I've been NED since October 2008, or since the craniotomy. So I wouldn't hesitate to suggest to your oncologist to add back Herceptin if you feel your wife's cancer seems to be advancing again, because each patient is different and some treatments might work at different times or in combination with different drugs, which is what happened in my case. This weekend I went to an oncology conference in Philadelphia for women with metastatic breast cancer and several doctors there discussed sometimes using older drugs that may still work well but have been eclipsed by newer drugs.

Joan

[phil]

You both have had a lot going on , as many of us have/ had too. As I read it all, I keep thinking about an independent second opinion w/ a bc specialist at a top research hospital. is your onc and ob/gyn at that type of hospital, like johns hopkins.? I am always skeptical of a doc " consulting " w/ a " friend ". No scans . or other data is exchanged, etc. my wife was stage iv in 06 , w/ liver mets. Shes been on herceptin almost the whole time, incl herceptin t dm-1. had TAC , then herc, w/ navelbine, ( 9 mos of stability ), herc w/ gemzar, ( 18 months of good effect ), then went to tykerb/xel ( 6 months good effect , awful s/e, ) , back to herc / carbo , briefly tried abraxane avastin, then to herceptin t dm-1.
Stopping herc is a ?, no scan since Oct is a ?, mis -diagnosis is a ? - could a tissue biopsy have been done ? maybe not , surgery is done , have to move on, but... We are always politely assertive , asking ? , docs see 12 -18 pts a day, very busy,
We are very glad to be at MGH , we left the suburbs because we knew we had to be aggressive . The first suburban onc was going too conservative. He wasnt even a bc specialist ! MGH is a top research hospital with a BC specialist center .
T DM-1 seems to work best w/ over -expression of her2 , not as well w/ estrogen, other hormonal influences. My wife has high her2 , ( FISH scale of 6 , anything over 3 is significant for gageing t dm-1 effectiveness, in my opinion ) she has no other known hormonal factors . I think it should be tried w. Stage IV Her2 w/ ER , PR +, as well , and will probably be even more effective when approved , w/ those types ,it then can be given at low doses w/ a greater variety of other drugs . Right now its in trials, "Theresa ", w/ a 2 out of 3 chance to get it, and a great trial at Sloan in NYC, and Farber in Boston, , where its first paired w/ taxol, and pertuzumab, then taxol gets dropped, and lower dose t dm-1 is continued . That one has randomized pert , 50/50, but EVERYONE gets the real cancer killer , t dm-1. I know theres alot of hype this yr about pert,. and it appears good , hopefully beter than herc., but its genetic . probably neds chemo to work at stage iv level. genetic drugs like herc./ pert keep cancer cells from repairing htemselve. I think my wife and other s have yet un-discovered sub-types of her 2 , where even if herc blocks the receptor, the cancer finds other pathways. pert seems to block more receptors ,and thats progress, but i like t dm-1 just blowing it all up , to make sure !
My advice is go w/ tykerb/ xel. It will surprise the cancer , ( thats part of the basic tx. theory ) hopefully for a long while , but always look ahead, frequent scans, a second opinion, trials ... best wishes always

[Sheila]

Greg....I do think asking about the Herceptin is a valid option....you are getting alot of valuable information from alot of women who have been around the block more than once...often some of the best advice or questions to ask, come from other members. I would also ask the reasoning of the 6 versus 3 month scans, especially since the cancer seems to have a rapid growth for your wife.

Never feel bad about asking questions or making suggestions. An oncologist who isnt ready to explain or understand your suggestions and concerns, is not a good fit. You must be a team with that Dr., and make decisions with input from you and your wife.

There is hope...many of us have been waiting many years for that perfect combo...I call it my prince...I've kissed alot of frogs, but I am still waiting to find my prince!
Congratulations to you and your beautiful wife on your wedding....may your love always sustain you~~~

[phil]

I am not a doc, but I do have a lot of xperience from the caregiver perspective. my first wife had bc, 20 yrs ago, probably her2 , no dx for it at the time. We talkd our way into a trial way back then . She passed away in 92. I have seen alot of progress, especially in last 10 yrs or so.
But I am going to be honest, you can tell that I have questions about the tx plan, your wife was dx Stage IV last yr, but went w/o a scan since Oct. I dont have the whole post in front of me, w/ the hx., . she hasnt had ascan even now , in late April ? I think most experienced metatstatic her2 docs woyuld have had your wife on herc. since re-occurence, and would automatically do scans 3 months apart. You shouldnt even have to be asking ! I think 3 month scans should be in place for at least ayr after re-occurence , automatic. Maybe longer . Risks from cumulative radiation pales in comparison to risks from not making informed, quick tx decisions now. Again , tyk/ xel is a good tx, go w/ it for now , but this doc ...

[KDR]

Greg,
I second Phil's post. We have to be our own advocates, and sometimes be aggressive.

Jamaica, what a blessed place to be married. I spend many collective years there.

Please call on us when you believe we can help.

Karen
Who Believes In The Cure

[MJsHusband]

Thanks Phil and Karen. I appreciate the assistance. If anyone else has further opinions on this please let me know. Thanks. ~Greg

[Sheila]

Greg, Dont know if you read my last post, but depending on the results of the scan, I would still see about adding the Herceptin back into the mix...especially with the previous liver involvement...all things to discuss with the Dr.

[MJsHusband]

Hi Sheila, yes I got your message. Thank you. :)

[MJsHusband]

The responses I've received have been pretty positive for adding Herceptin back in the regimen with Tykerb and Xeloda. I discussed it with MJ last night and we are going to have it added back in June after the results of her Pet/CT scans.

I mentioned to MJ that many on here feel she should be getting scans every 3 months instead of 6. She's pushing back on that idea for now. She doesn't want to experience scanxiety that frequently. Of course I can't make her.

Are there any studies showing that finding something 1-3 months earlier makes a big difference in overall survivability? I know most of the articles I read about for new treatments make a big deal about adding 3 months to disease-free survival/progression-free survival, but not as much about overall survivability, which is the most important area to increase in my opinion (although I know it is the hardest to extend). I am new to all this but keep reading and learning so that I can be as helpful as I can. I'm having to learn all these new terms and concepts.

Again, thanks for the invaluable comments that everyone has posted. Every one of them has been helpful. And thanks for the congratulations comments concerning our wedding in Jamaica. It was amazing and so glad that we were able to go there and get married on the beach at this crazy point in our lives.

~Greg

[phil]

I dont know of studies about frequency of scans, but I know MGH's docs do them 3 months apart when cancer keeps coming back, as in your wifes case , since Jan. I think you will hear the same from others on this site who are being treated for Stage Iv at research hospitals. So our cumulative experience says scans every 3 months , for a good long while after re-occ. The tumor marker blood tests are good indicators too. Lorraine gets them every 2 months. Were up in 2010, before t dm-1 , have dropped to 14 since Sept , 2011. Lorraine has scanxiety every scan , but has seen the benefit of quick decision to drop txs not working ( abraxane after 2 months of no help ) and switching just in time to t dm-1. We are gearing up for her next scan May 15, which is 4 months after 18 months of every 3 months, because t dm-1 is working so well.
If i had a chance to get t dm-1 in those trials i talked about , i'd take it. In one everyone gets it, and the other, Theresa, 2 out of 3 get it, with the 3rd getting tyk/ xel. or other physicians choice. I hear that Theresa is nearly full, about 900, so 600 are getting the new super -herceptin.
W/in a yr, many researchers feel that t dm-1 will be " standard of care " for metastatic Her2, at varying dose levels, and combined w/ pertuzumab. When w/ in the next yr ? Well , thats up to our FDA, who knows ?? , it will be w-in a yr , but Sept ? Nov ? Jan ?? i say go for it if you can get it.
If your wife tolerates tyk/ xel., i would still strongly , strongly encourage frequent scans,blood marker tests. Just this yr . Those who know me know I can be a nag about this drug t dm-1 , and aggressive tx for an aggressive cancer, but theres very good reason , its life or death, and it works , esp. for those w/ liver mets, not too much bone involvement yet , like Loraine. Show this to your wife, and show her Lorraine on youtube " FDA Blocks Life Saving Cancer Drug Rally , Part 4. " Shes Living Proof . This is probably the best breast cancer drug for her2 in 15 yrs , since herceptin itself. Alright, done nagging , for now anyway...

[MJsHusband]

Thanks for "nagging" Phil. I appreciate your perspective and knowledge. I'll pass what you've said along to MJ. I have read about the Theresa trial but haven't considered it so far. I'm glad to know the T-DM1 drug is working for Lorraine and many others and glad that there is a backup in case the Tykerb/Xeloda/Herceptin combo doesn't pan out. I just wish the FDA would make it available sooner. I hate that some people don't have time to wait for this approval. I've read a few sad postings about that.
~Greg

[Adriana Mangus]

Hi Greg,

I agree with the other gals on the site, it appears MJ has received the appropriate treatment. She's fortunate to have you as her health advocate.

MJ will do well with the treatments, also there are countless clinical trials. You can check them out @ http://clinicaltrials.gov

Congratulations on the wedding.

Love,

Adriana

[MJsHusband]

Thanks Adriana. I will check out that clinical trials site. I see you have been in a TDM1 trial. Are you still involved in it? I don't see any update on your signature after August 2010 so not sure what your status might be these days. I hope things are going well for you. I guess TDM-1 is the great hope for everyone on this site. Hopefully it will perform better than Herceptin.

~Greg

[kk1]

Greg;

It's counter intuitive but please let MJ know that the scanxiety is actually much less when you are scanned more frequently. If you have or had mets and wait six month between scans it's REALLY scary, after a few months your mind starts to imagine tumors "going wild". When it's every 12 weeks the anxiety doesn't build up and your mind learns to think "well it hasn't been so long so how bad can it be---I can deal with what ever is coming". I have found 3 month scans build my confidence and let's me plan and live my life better, and as I said I think my key to longevity has been always catching a met when it is small.

Also Phil and Becky are on target, ask about always being on Herceptin as it works better synergistically. Just because she develops a met does not mean Herceptin is not working. My analogy is there are multiple doors and windows for the HER/NEU cancer to enter the cell. Just because it found a back door doesn't mean you should give up and throw open the front door by discontinuing Herceptin. If someone breaks a window and burglars your house don't you still keep the doors locked? You would not say the dead bolt failed lets remove all the locks.

And finally you might want to ask about routine CTC blood testing in between scans as part of the monitoring, and I don't see you mention the ER/PR receptor status of the mets or primary.

[phil]

Lots of wisdom inwhat kk1 is saying. hers another thought, if you are going to try tyk/ xel. anyway, why not take 2 out of 3 chance on getting t dm-1 , if you dont, your fallback is tyk./xel. Thats Theresa, its a big trial. If you look at its hx., and its "suspisciously unique " randomization of 2 to 3 , I think its the co's attempt to get as many on t dm-1 and still satisfy This FDA's forcing them to do trials . Most trials would have a 50/50 randomization, or maybe 3 ' arms ", . if my guess is corect, kudos to Genentech. They know, and we know that they have a breakthrough drug.
The main trial This FDA is forcing , EMILIA , is done, data will go to to FDA soon, next month ? Then This FDA typically will take 6 months to approve. It shows that t dm-1 is superior to tyk/xel. How superior ? I am betting a lot, in survivability, and in QOL. tyk/xel is notoriuos for dirrhea, and " hand/foot syndrome , my wife had it all, droppped 15 lbs off an already 4 yr battling thin frame, wore gloves w/ lotion to bed every night as her fingers cracked. Turned the palms of hands, soles of feet orange T dm-1 : platelets for some , that can be managed w forwarning , dose reduction.

[Mandamoo]

Phil - don't you have to have measurable disease to be eligible for any of the TDM1 trials - from what MJ'shusband has said, last scans showed no measurable disease. My understanding of measurable disease is a tumour of at least 2 cm measurable on standard CT with contrast, I think you can get in with a 1cm tumour using different 3d CT - it is usually according to RECIST criteria. I also believe to participate in theresa you have had to have tried Tykerb and xeloda combination to qualify.

Another consideration is that participation in a TDM1 trial - even if you draw the control arm and receive treatment of your physician's choice can exclude you from further TDM1 studies.

I recently participated in the Bolero 3 trial and we had to find something large enough to get me in (In the end we 'measured' an axilla node at 21mm) - my lung tumours were the concern - there were more than 40 but none over 1cm and not close to 2cm so ineligible by them when they are the life threatening ones.

For what it's worth - I am on Tykerb xeloda currently and have had a response when nothing else has reduced my lung tumours. I am managing side effects ok - with a slight dose reduction - every body is different. If I could I would have herceptin with the Tykerb but it is not funded in Australia to have the two combined and it would cost us $60 000 per annum to fund herceptin.

Let's hope the FDA approves TDM1 soon because we are usually about 3 years behind in approvals in Australia. Also want to see pertuzamab approved so there are more options to try.
Good luck,
Amanda

[phil]

Good points. I have not read up on theresa 's specifics exclusions , etc. Aggressive cancer calls for aggressive tx. I like that you and your docs looked for measurable disease. Our docs saw that Lorraine ws on adria again, awful drug. They said , " well, she could get more , but shes close to lifetime limit, so.. they let her in to t dm-1 access. We need to explore all options, ask all ? of our docs.
A very good point is that This FDAs' new OS stats mean that ,in theresa, if you progress on physicians "choice ', you cant get tdm-1. 2 out of 3 is better odds than usual trials. As i have said before, its gen .'s way of getting t dm-1 to the most , while satisfying This FDAs randomization rule. Theresa may close soon. So , no decision is easy.
Pert is coming soon, and t dm-1's big trial data ( EMILIA)is done, is going to FDA this month or next, so i think t dm-1 might get out before end of this yr. Then everyone here can get it.. So check all trials, the pert /tdm-1 in Ny, Boston gives everyone t dm-1. If your cancer strongly overexpresses her2 only, has come back on tac, and you cant get t dm-1 in any other trial, theresa might be a choice.
I sur eplan to turn the heat up on fda this yr. Our rally on youtube in Dec. made one big mistake : we thought our media contacts would come to us . Nope. So, we must go to them.
Anyone want to picket outside ASCO in June ? Copy our shirts, or if i can i'll send you Chicagoans some. Dont think i can swing it, but we will definitely be outside the Internatl BIO tech Convention in Boston June 18. In our pink Fix The FDA shirts. All you Bostonians , stay tuned !!

[phil]

Further thought , aggressive means Take Action ! < I mean interms of if you have strong her2 , metastasizing quickly, dont wait, look into t dm-1 trials. Ask gen for comp. use , they may be more flexible as pert nears app. and the main t dm-1 testing is done

[MJsHusband]

I'm hoping we are not at the point where we need to request compassionate use. Do you all think we are at that point where we are quickly running out of options? Should I lower my expectations for Tykerb/Xeloda? MJ started her second round of Xeloda this week in addition to the 5 daily Tykerb pills.

I am hoping TDM-1 is a game changer, like Herceptin was thought to be. It seems Herceptin doesn't work for everyone and for those who do respond, it stops working on it's own after a number of months/years. I am reading about the success some are having using Herceptin in combination with other chemo drugs and that's a good thing. I guess I'm a bit let down after Herceptin allowed the endometrial tumors to grow so quickly. To me, it's not the "game changer" that I first read about when MJ was diagnosed. I still remember the hope I had when I first read "Her2 had a poor prognosis before Herceptin". Now I can't help but think, what if it doesn't work in combination with other drugs for MJ? I saw a study that even when Herceptin is added to Tykerb, overall survival is only extended 4 months. Is it too much to want more than that?

Sorry for the "blah" posting today. It's just how I'm feeling.

~Greg

[phil]

We went to MGH, saw the Theresa criteria on the wall there, " at least 2 prior regimens of hre2 directed therapy ', Lorraine had had herc nav, herc / gemzar, herc / carbo, tyk/xel twice, i dont know if TAC counts . ( It should ! nasty ! )
We didnt get t dm-1 today, those plats mysteriuosly dropped ! , as they can do, to 56,000. Can get txed at 50,000, but doc wants to wait, try next wk. We are not concerned, but plats are fragile. Can jump, or drop 10,000 in a day. L's have been slowly climbing, to 82,000 last time. Like a step-ladder, but havent been as low as 56,000 in months. Our doc thinks we caught a little extra dip, says , " They probably would be up if we checked them later today. " Ahhh, just as I was talking like a little platelet " guru "...humbling. We still believe in the plt support measures we have mentioned before.

[phil]

greg, I posted about the theresa trial info , in response to kk1's input, then saw your post.
Having " Blah ' days is completely understandable, in fact , having raging mad days, crying days ... and laughing days, is part of the deal too. I'm looking at abeautiful pic on my desk of us in Naples , Fla. 2 yrs ago, and we had a great time in Aruba 3 yrs ago, even w/ nasty tyk/xel s/e. I hope you have great pics of jamaica. Good times are only sweeter , after hard ones.
Herceptin is a game-changer. As many as 20% of her2 pts need only herc. I know many others who got herc , w TAC, ( like taxotere, carbo , herc ) , and maybe f/u herc. Yrs NED now. Many do not post on the web, they are off living thier life, maybe doing a walk ix ayr. I greatly appreciate those who are NED who stay on the web, give us encouragment, advice.
They are discovering more and more genetic sub-types of bc, and probably will find sub-types w/in her2 +. Some her2 , like Lorraine, and yuor wife, probably have other mutations than her2 overexression, that havent been discovered yet. Some respond to tykerb, some have few s/e from tyk/ xel or tyk/herc. my wife had strong s/e but still toughed it out for months.
Whats encouraging about t dm-1 for strong overexpression of her2, is , even if there are other mutations in Lorraines cancer , T DM-1 doesnt care , it uses herc to home in on the mutated cells , and the dm-1 blows them up. End of story . Thats a game-changer.
I didnt know all this in the first 2yrs or so, but i ahve learned a swe go along. have you seen Lorraine ? On youtube ? If you want to see a " before T dm-1 " pic , go to southshoreexpress.com, type in " Lorraine heidke-mccartin ". You will see her in 2010, holding our newest granddau, w . a baseball cap hiding her wisps of hair from adria. Then watch her in the Rally video. She went SKIING last winter for the first time in 5 yrs ! Only 5 months on tdm-1, 4 months after that pic. I think some of my feedback to you has been really more about not being at a top research hosp., like Johns Hopkins , and not w/ a " friend of your onc ".
battling aggressive cancer is about being aggressive, " surprising the cancer " w/ new combos , You have many weapons left, many ! But research oncs know most about which , and when , to deploy.
Your wife had liver mets , like my wife, and had pretty quick progression after some months , on herc. Like Lorraine. But w/ L herc still worked , w. navelbine, then gemzar , for probably over 2 yrs. Tyk/xel works better for some than my wife.
Pertuzumab may be better than herc., and will be out very soon , June ? , t dm-1 i believe by end of yr. I think that anyone in a trial who progresses then , can drop out and get approved drugs like herc/ t dm-1.
This is going to be a historic yr for her2 bc tx, w/ pert and t dm-1 coming out . Thats why i wa sthrowing out looking into theresa, becuase 2 /3rds get t dm-1 . The others could ride tyk/xel or some other " physicians choice " as long as it works, or until progr. Then drop trial, go to combos w/ pert , t dm-1 later in yr.
Tyk /xel works !! Its a good tx to go w/ for aggressive her2 , But I strongly recommend moving tx to a top bc research hospital . No time to feel bad for docs, esp. ones w/ ? about overall tx planning .

[phil]

In the above post I meant pertuzumab will be available soon for those who progress in a trial and drop out, T DM-1 by end of yr. for those who have to drop out of trial w/ other drugs.

[phil]

Oh , yeah , you're nowhere near having to think about comp. use !

[chrisy]

Greg,

Phil said a lot. All true.

There are lots of options, and this should be a very exciting year for her2 agent approvals.

One word about trial stats....they represent data points over everyone in the trial. It is also the MEDIAN, half the people had pfs of less tha 4 months , half had longer pfs. The lower "half" includes people who did not respond at all, while the upper half usually includes responders who have much, much longer..

My point is, statistics do not reflect how any individual will respond. So don't get hung up on "this will only buy us 4 months". Picture yourself on the far right tail of the curve. If you have not read it, I highly recommend "the median is not the message". You can googl it easily

It's hard not to second guess and play "what if?". You just have to do the best you can to do the research, align yourself with a top cancer center (most local oncologists are happy to work and play with these top researchers) , fight for what you think is best, and make the best choices you can. Easy, huh?

But I really second Phil's recommendation of having a relationship with a top onc, at a top research hospital, with expertise in your situation. Phil's righ on in his comments there - they have access to all the research going on, even unreported stuff, and can offer many options that are not available except at a large research facility.

Hang in there.

[her2 newBEE]

Greg,

My wife is in a very similar situation... stage 4 at dx, strongly Her2+ by FISH, and relatively young (37). She's a little more than a year into this. I would really agree with the voices on this thread calling for Herceptin to be added back into the mix (or at least looking at this strongly). The data does show that there is statistical benefit. As targeted therapy, my wife has Tykerb + Herceptin right now along with a standard chemo agent. There were some recent reports out of the Chicago seminar as well as the SA Breast Cancer Symposium in 2009 suggesting that H+Tykerb > Tykerb alone --> http://www.rttnews.com/1154913/glaxosmithkline-says-tykerb-herceptin-combination-shows-positive-results-in-phase-iii-study-update.aspx. And, there are more and more studies emerging bearing out that combining multiple targeted agents in the treatment of metastatic Her2+ BC seems to be a favorable approach.

Also, agree that TDM-1 & Pertuzumab probably hold forth the most promise right now. And, there is definitely benefit from being close to a research hospital where you have access to clinical trials. However, one thing you should weigh is the balance between aggressive treatment and toxicity. By all accounts, Lord willing, these drugs will be available by the end of the year. It would make me think twice about jumping into a trial that would include a heavily toxic chemo alongside a drug like T-DM1.

As for scans, I'm not sure how critical 3 months vs. slightly longer interlude is in the overall picture (a clinical trial will require scans every 3 months or so), but I do think that it is important that you push for your wife to at least get fairly regular brain MRIs.

[phil]

greg, lots of good feedback, throwing lots of stuff at you, but , meant to be helpful. Chrisys point about statistics is right on,. In fact, when first dx, Lorraine did not want to know what stage she was, saying " I am not a statistic ". And it is true !
after reading all above, I still say go get tx at a research hospital, take tyk/xel and go .
We were in the suburbs at dx. , saw anice guy, but he was ageneralist , tx'ed many types of cancer, had trained at Farber, " talked " w/ farber all the time. But he wanted to be conservative, hold back on chemo. We just knew in our gut that this was an aggressive cancer, and went to MGH for second opinion. Our onc., was aggressive, and went for aggr. tx, which was taxotere, adria, cytoxan, w/ herceptin following. Scans every 3 months . 9 months ( NED) later liver met back, right to herc./ navelbine.9 months (NED) later, liver ablation to one tumor, herc / gemzar for 18 months of NED, tyk/xel , etc. to t dm-1.
Going to MGH flat out saved Lorraines life, and t dm-1 saved it again !

[pibikay]

Just see my signature.Hem's initial treatment was similar.