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Lani · 04-13-2006, 07:49 PM

where are you located? If the Xeloda is too much for your mom consider looking up the trials of metronomic chemotherapy. They use tiny amounts of oral medications (cyclophosphamide or methotrexate) given daily. It works on the weakest link, the cells lining the new blood vessel the tumor recruits, and starves the tumor of a blood supply. The dose is so low other normal cells are virtually unaffected. Rheumatoid arthritics take low dose methotrexate for years without problems.

Was her tumor estrogen receptor positive?...lt is felt that Herceptin resistance develops due to ER pathway cross talk with her2 pathway (just as vice-versa the hormonal resistance develops due to her2 pathway crosstalk).

Faslodex (a simple injection once a month with less side effects than AIs or tamoxifen) is felt best in metastatic her2+er+ breast cancer. It is usually given to those who fail tamoxifen or an AI but I know in England it is given as part of a compassionate use program.

BEFORE YOU DO ALL THAT BE AWARE--all that lights up on PET is NOT NECESSARILY cancer. Any tissue that uses more glucose (has a higher metabolism than normal) than others lights up--so it could be an infection (colon abscess especially if she could have diverticulitis), a stress fracture of her hip and maybe a new (and hopefully less malignant tumor in her other breast--if it were an abscess or rib fracture I think she would have let you know it hurt there.

If you can get a PET/CT (simultaneous PET and CT) it can localize the problem in 3 dimensions--similarly a bone scan might localize if the problem is really in the chest wall or a rib.

Does your mom have regular Medicare or is she in an HMO? Regular Medicare will pay for all the testing needed. If she is on an HMO the doctor may not want to expend money that otherwise goes to his yearly salary in order to try to find out what is going on in someone he has probably "written off"

Now is the time to take all the energy you have spent trying to supplement your mom's Herceptin with all the things you could think of and use that energy to try to get the medical establishment to do what they would want done for their own mothers.

First be sure with testing that what they see truly is mets and not diverticulitis, and stress fractures of the hip (doesn't take much in an older lady to get one) or a rib fracture (can occur with coughing at her age). My 85 year old father had two pelvic stress fractures caused just by the dog pulling too hard.

A CT of the hip and chest can determine whether there was a regular fracture through normal but osteoporotic bone or whether it was a pathologic fracture through bone weakened by metastasis.

I am not certain what would be the easiest study to rule out diverticulitis ie, you don't want to so dehydrate your mom with a preparation for the test with things which cause diarrhea that she DOES fall and fracture her hip--a choice would have to be made between a CT scan, a barium study of the intestines etc. Unfortunately a virtual colonoscopy is not yet covered by insurance.

Virtually all doctors who lecture on metastatic breast cancer keep their patients on Herceptin once it "fails" and just add something. Look at the interview of many leading oncologists in "breast cancer update" and you can see that is the concensus.

If your mom is in an HMO, you don't have to wait until January. You can change her to regular Medicare AT ANY TIME and there is NO SUCH THING AS A PREEXISTING CONDITION--she cannot be refused. It takes 30 days or so for the paperwork to go through if you keep on them.

I helped someone with a terrible lymphoma and he was able to get out of the HMO and onto regular Medicare which allows you to see any doctor abd get any treatment Medicare has deemed non-experimental and reimburseable.

04-13-2006, 07:49 PM	#10
Lani Senior Member Join Date: Mar 2006 Posts: 4,783	Tom where are you located? If the Xeloda is too much for your mom consider looking up the trials of metronomic chemotherapy. They use tiny amounts of oral medications (cyclophosphamide or methotrexate) given daily. It works on the weakest link, the cells lining the new blood vessel the tumor recruits, and starves the tumor of a blood supply. The dose is so low other normal cells are virtually unaffected. Rheumatoid arthritics take low dose methotrexate for years without problems. Was her tumor estrogen receptor positive?...lt is felt that Herceptin resistance develops due to ER pathway cross talk with her2 pathway (just as vice-versa the hormonal resistance develops due to her2 pathway crosstalk). Faslodex (a simple injection once a month with less side effects than AIs or tamoxifen) is felt best in metastatic her2+er+ breast cancer. It is usually given to those who fail tamoxifen or an AI but I know in England it is given as part of a compassionate use program. BEFORE YOU DO ALL THAT BE AWARE--all that lights up on PET is NOT NECESSARILY cancer. Any tissue that uses more glucose (has a higher metabolism than normal) than others lights up--so it could be an infection (colon abscess especially if she could have diverticulitis), a stress fracture of her hip and maybe a new (and hopefully less malignant tumor in her other breast--if it were an abscess or rib fracture I think she would have let you know it hurt there. If you can get a PET/CT (simultaneous PET and CT) it can localize the problem in 3 dimensions--similarly a bone scan might localize if the problem is really in the chest wall or a rib. Does your mom have regular Medicare or is she in an HMO? Regular Medicare will pay for all the testing needed. If she is on an HMO the doctor may not want to expend money that otherwise goes to his yearly salary in order to try to find out what is going on in someone he has probably "written off" Now is the time to take all the energy you have spent trying to supplement your mom's Herceptin with all the things you could think of and use that energy to try to get the medical establishment to do what they would want done for their own mothers. First be sure with testing that what they see truly is mets and not diverticulitis, and stress fractures of the hip (doesn't take much in an older lady to get one) or a rib fracture (can occur with coughing at her age). My 85 year old father had two pelvic stress fractures caused just by the dog pulling too hard. A CT of the hip and chest can determine whether there was a regular fracture through normal but osteoporotic bone or whether it was a pathologic fracture through bone weakened by metastasis. I am not certain what would be the easiest study to rule out diverticulitis ie, you don't want to so dehydrate your mom with a preparation for the test with things which cause diarrhea that she DOES fall and fracture her hip--a choice would have to be made between a CT scan, a barium study of the intestines etc. Unfortunately a virtual colonoscopy is not yet covered by insurance. Virtually all doctors who lecture on metastatic breast cancer keep their patients on Herceptin once it "fails" and just add something. Look at the interview of many leading oncologists in "breast cancer update" and you can see that is the concensus. If your mom is in an HMO, you don't have to wait until January. You can change her to regular Medicare AT ANY TIME and there is NO SUCH THING AS A PREEXISTING CONDITION--she cannot be refused. It takes 30 days or so for the paperwork to go through if you keep on them. I helped someone with a terrible lymphoma and he was able to get out of the HMO and onto regular Medicare which allows you to see any doctor abd get any treatment Medicare has deemed non-experimental and reimburseable.