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?

@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