MY TIME AT COMMMONWEAL CANCER HELP PROGRAM IN BOLINAS, CA

A1pena

maggie_wilson said:

amanda
no problem saying who the doctors are at u.c.s.f.: dr. john chan and dr. i chow hsu. i was also given a name of a doctor at stanford, who i think i'll be seeing in january. thanx for possible recommendations. would be interested in your medical oncologist's name, if that's ok.
sisterhood,
maggie

Thanks for the info! My moms
Thanks for the info! My moms doc at ucsf is dr lee may chen- amazing gyno surgical oncologist- I believe she is also a professor there... her medical oncologist is dr garrett smith- amazing, smart, positive man. Great credentials and also believes in treating the whole patient so in his office there is also a fabulous nutritionist, massage therapist and an accupuncurist. They also have a wonderful nursing staff- honestly can't say enough good things about them. The chemo room overlooks the water and the bay bridge- beautiful. His office is affiliated with ucsf so whatever tests that are done- they both have access to. Dr smith has some reviews written about him on yelp too if you want to do a lil more research.

Kind regards,

Amanda

bots

A1pena said:

Thanks for the info! My moms
Thanks for the info! My moms doc at ucsf is dr lee may chen- amazing gyno surgical oncologist- I believe she is also a professor there... her medical oncologist is dr garrett smith- amazing, smart, positive man. Great credentials and also believes in treating the whole patient so in his office there is also a fabulous nutritionist, massage therapist and an accupuncurist. They also have a wonderful nursing staff- honestly can't say enough good things about them. The chemo room overlooks the water and the bay bridge- beautiful. His office is affiliated with ucsf so whatever tests that are done- they both have access to. Dr smith has some reviews written about him on yelp too if you want to do a lil more research.

Kind regards,

Amanda

Soy
Maggie, do you know why "very little soy?" I have been substituting soy milk for cow's milk as I read a study from Sweden that indicated that cow's milk was somewhat implicated in the serous pap carcinoma.

maggie_wilson

bots said:

Soy
Maggie, do you know why "very little soy?" I have been substituting soy milk for cow's milk as I read a study from Sweden that indicated that cow's milk was somewhat implicated in the serous pap carcinoma.

soy milk
actually, i don't think i know for sure; i've been assuming because it's linked to hormones, and we don't know the implication of more hormones on cancer. i wonder if we can google it and get a better answer.
m

nempark

maggie_wilson said:

soy milk
actually, i don't think i know for sure; i've been assuming because it's linked to hormones, and we don't know the implication of more hormones on cancer. i wonder if we can google it and get a better answer.
m

Maggie thank you
Thanks for sharing your experience with all of us. It's amazing how the sisters can take the time to share good things with us. God bless all of you on this board. j

Double Whammy

nempark said:

Maggie thank you
Thanks for sharing your experience with all of us. It's amazing how the sisters can take the time to share good things with us. God bless all of you on this board. j

Thank you Maggie
for the thorough description of your week at Commonweal. It sounds fascinating. There is so much more involved in living with cancer than chemo, radiation, and tests afterall. Hope your appointment in 2011 at Stanford provides you with more medical information to use in your decisions.

Suzanne

patsplace

Thanks for the review! I've
Thanks for the review! I've known of Lerner's work for a number of years and applied to attend the Commonweal retreat in November. From your description, it sounds like just the ticket! Only wish I could go sooner.

patsplace

maggie_wilson said:

soy milk
actually, i don't think i know for sure; i've been assuming because it's linked to hormones, and we don't know the implication of more hormones on cancer. i wonder if we can google it and get a better answer.
m

Just read the rest of the
Just read the rest of the discussion...My understanding is that the recommendation on minimizing soy is that it has estrogenic effects; estrogen feeds breast, uterine, and other reproductive cancers. The problem is in the total estrogen load, and there are MANY unavoidable circumstances that contribute false estrogens to the body--the chemicals in plastic food or beverage containers are a big one (the chemicals leach into the food...) If you are using soy milk in your coffee or tea daily, you are not only repeatedly taking in estrogenics from the soy, but also those caused by the plastic container the soy milk is stored in--a double whammy, every day. Also check your supplements and prepared foods for soy--it's added to lots of stuff; lecithin is a soy-based preservative found in many many many foods. So anywhere you can minimize intake of potentially estrogenic foods, the better. My naturopath recommends (and my fast & dirty internet research supports this) soy (in any form) at no more than 1 meal per week, or no more than a pound (fresh/raw) of tofu per month. I also understand that consuming fish or fish oil help to alleviate soy's impact (I haven't explored this in any detail as I don't eat fish).

The good news about the plastic thing is that the estrogenic chemicals for the most part dissipate within 24 hours, so if you transfer your foods to glass or ceramic containers as soon as you get them home from the grocery, you will minimize your exposure. Also note that cartons and cans are all lined with plastic, so are no better than plastic bags or bottles. You should NEVER cook food using plastic, avoid plastic or foam hot-drink cups, and plastic dishes (including water bottles) should not be put through the dishwasher--heating plastic increases its chemical off-gassing & leaching, even after it has cooled.

maggie_wilson

patsplace said:

Thanks for the review! I've
Thanks for the review! I've known of Lerner's work for a number of years and applied to attend the Commonweal retreat in November. From your description, it sounds like just the ticket! Only wish I could go sooner.

patsplace
if you haven't already done so, let commonweal know that you could be available sooner than november if an opening occurs, as they sometimes do. if you can, you may need to be ready to go in a week or so. another suggestion is attending commonweal and healing yoga one day retreat; it's also well worth it--you could call commonweal and ask when the next day-long retreat is happening. my partner and i attended one, and i believe (just a guess, no proof) we got in earlier than expected (april) because we got to know some of the commonweal people who were there and remembered us, and when space opened for two, they thought of us. just an idea.....
sisterhood,
maggie

patsplace

maggie_wilson said:

patsplace
if you haven't already done so, let commonweal know that you could be available sooner than november if an opening occurs, as they sometimes do. if you can, you may need to be ready to go in a week or so. another suggestion is attending commonweal and healing yoga one day retreat; it's also well worth it--you could call commonweal and ask when the next day-long retreat is happening. my partner and i attended one, and i believe (just a guess, no proof) we got in earlier than expected (april) because we got to know some of the commonweal people who were there and remembered us, and when space opened for two, they thought of us. just an idea.....
sisterhood,
maggie

Thanks! I did indicate on
Thanks! I did indicate on the application that I could attend at the last minute should there be a cancellation. I live in Montana, so a one-day retreat there is probably not feasible. But there are several awesome hot springs near by that make for a immensely restorative weekend retreat. (If anyone is interested, my favorite of the developed hot springs in Montana is Boulder--check it out at boulderhotsprings.com.) Water is hottest at this time of year...:)

zarkapopovic

Bay Area Doctors
Dear Maggie,

I have been reading some of your posts and would like to learn more about the doctors you have tried in the Bay Area. I am considering switching from the Palo Alto Medical Foundation in Mountain View to UCSF but see you have some reservations about UCSF. Would you be willing to share your thoughts directly with me? Let me know and I can pass on my phone or email to you.

Best,

Zarka

maggie_wilson

zarkapopovic said:

Bay Area Doctors
Dear Maggie,

I have been reading some of your posts and would like to learn more about the doctors you have tried in the Bay Area. I am considering switching from the Palo Alto Medical Foundation in Mountain View to UCSF but see you have some reservations about UCSF. Would you be willing to share your thoughts directly with me? Let me know and I can pass on my phone or email to you.

Best,

Zarka

zarka
actually, i haven't tried many doctors in the bay area, and don't really know enough to have reservations about doctors at ucsf. all my doctors are in the walnut creek/concord area. are you looking for a gyn-onc, or medical oncologist, because i have two excellent ones--but again, in the walnut creek/concord area. (although we live in berkeley, i followed my primary doctor from berkeley to orinda, then got an hmo, and had to see doctors in her cachement area. i really lucked out with my two doctors: i honestly feel my gynonc is the best surgeon in the world, but not the greatest bedside manner. my medical oncologist is a young, very smart woman, who i'd definitely recommend. . i did see a gyn-onc in atherton for a second opinion-- who has an excellent reputation, but i wouldn't recommend her. i've actually heard good things about some doctors at ucsf, so not sure why or where i would have expressed reservations. i had a doctor recommended to me, who i have yet to see, who's at stanford, and who came highly recommeded. his name is b sikic, goes by the first name brandy! i hear dr. chan at ucsf is excellent. that's about it.

sisterhood,
maggie

zarkapopovic

maggie_wilson said:

zarka
actually, i haven't tried many doctors in the bay area, and don't really know enough to have reservations about doctors at ucsf. all my doctors are in the walnut creek/concord area. are you looking for a gyn-onc, or medical oncologist, because i have two excellent ones--but again, in the walnut creek/concord area. (although we live in berkeley, i followed my primary doctor from berkeley to orinda, then got an hmo, and had to see doctors in her cachement area. i really lucked out with my two doctors: i honestly feel my gynonc is the best surgeon in the world, but not the greatest bedside manner. my medical oncologist is a young, very smart woman, who i'd definitely recommend. . i did see a gyn-onc in atherton for a second opinion-- who has an excellent reputation, but i wouldn't recommend her. i've actually heard good things about some doctors at ucsf, so not sure why or where i would have expressed reservations. i had a doctor recommended to me, who i have yet to see, who's at stanford, and who came highly recommeded. his name is b sikic, goes by the first name brandy! i hear dr. chan at ucsf is excellent. that's about it.

sisterhood,
maggie

Bay Area Doctors
Hi Maggie,

Thanks for your reply. Branimir (Brandy) is a researcher not practioner, why were you recommended to him?

May I ask who your doctors are? I may want second opinions on my entering a clinic trial before I sign away!

Best,

Zarka

maggie_wilson

zarkapopovic said:

Bay Area Doctors
Hi Maggie,

Thanks for your reply. Branimir (Brandy) is a researcher not practioner, why were you recommended to him?

May I ask who your doctors are? I may want second opinions on my entering a clinic trial before I sign away!

Best,

Zarka

zarka
sikic was recommended because he could know research, trials, etc. that i could be interested in, though didn't know he wasn't a practioner, especially because he asked for all my medical records, etc. are you sure about this?

surgeon (gyn onc) is babak edraki: 925-627-3440; medical oncologist is: lesley martin, 925-674-2100. what clinical trial are you considering?

good luck,
maggie

maggie_wilson

maggie_wilson said:

zarka
sikic was recommended because he could know research, trials, etc. that i could be interested in, though didn't know he wasn't a practioner, especially because he asked for all my medical records, etc. are you sure about this?

surgeon (gyn onc) is babak edraki: 925-627-3440; medical oncologist is: lesley martin, 925-674-2100. what clinical trial are you considering?

good luck,
maggie

zarka addendum
do you have upsc? i'd be interested, especially if you do, if the clinical trial you're considering is for upsc, since it's so rare.

thanx,
maggie

zarkapopovic

maggie_wilson said:

zarka addendum
do you have upsc? i'd be interested, especially if you do, if the clinical trial you're considering is for upsc, since it's so rare.

thanx,
maggie

UPSC
Hi Maggie,

I do not have UPSC but when I went to the clinicaltrials.gov site it showed two trials that are open for your disease depending on your stage.

I do not know for sure that Sikic is only a researcher but when I looked him up at Stanford that is how it appeared from the website. It is wonderful that he has shown an interest in your case; I would think that the larger research institutions would be interested in you.

Best of luck to you and thanks for the info.

Zarka

zarkapopovic

maggie_wilson said:

zarka addendum
do you have upsc? i'd be interested, especially if you do, if the clinical trial you're considering is for upsc, since it's so rare.

thanx,
maggie

More on Sikic
I did more research after the last mail I sent see: http://waatp.com/people/branimir-sikic/9530946/

It does look like Sikic practices as he is one of the main clinical trial folks at Stanford. I wrote to him today to see if we could talk. I will let you know if I hear from him.

Zarka

zarkapopovic

maggie_wilson said:

zarka addendum
do you have upsc? i'd be interested, especially if you do, if the clinical trial you're considering is for upsc, since it's so rare.

thanx,
maggie

Brandy
He was kind enough to email me back yesterday morning and give me his opinion regarding my situation. Thanks for the lead.

Zarka

maggie_wilson

zarkapopovic said:

Brandy
He was kind enough to email me back yesterday morning and give me his opinion regarding my situation. Thanks for the lead.

Zarka

brandy
that's great! hope it helped. i may yet see him at some point. you're welcome.
maggie

maggie_wilson

zarkapopovic said:

Brandy
He was kind enough to email me back yesterday morning and give me his opinion regarding my situation. Thanks for the lead.

Zarka

brandy
that's great! hope it helped. i may yet see him at some point. you're welcome.
maggie