Treatment Question

phil · 04-30-2012, 08:16 AM

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 · 04-30-2012, 10:17 AM

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 · 04-30-2012, 11:21 AM

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 ...