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My journey, Second Opinion, New York

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We had a good appointment with Sloan-Kettering Dr. Jason Konner & Dr. Jae Park (Fellow) –

We met with both doctors for a long time on Wednesday. They were both very nice and

supportive. Dr. Konner reviewed Sarah Liz’s situation to be a low grade cancer which is

less aggressive but also responds less well to chemo. He then outlined several options he

would recommend…

• If considering a chemo route, he would recommend considering another version of

taxil which is taxiteer. Taxil is the drug that Sarah Liz had a big negative reaction to,

but per Dr. Konner, taxiteer is is made from a plant, but is not put in the nasty solvent

that taxil is. A number of patients who have had bad reactions to taxil do not have a

reaction to taxiteer.

• Avastin – this is treatment which targets the blood supply to the cancer. It cuts

off the blood supply. Dr. Konner has seen this treatment work and he prefers to combine

avastin with another chemo such as avastin and taxiteer or avastin and cytoxin plust

avastin. We shared with Dr. Konner that Dr. Berchuck at Duke had recommended avastin and

doxil combination. Dr. Konner was not supportive of that combination. He said they had

some bad experiences with that combo and their center did not use that regime. Avastin has

some side effects such as high blood pressure, mild nose bleeds and occasional headaches.

The biggest side effect that has been noted is that in 4 % of the patients there has been

bowel perforation. The other side effects can be treated more easily.

• Hormonal treatment – He asked if anyone had tested Sarah’s tumor cells to see if

they were estrogen receptor ER/EP negative or positive. No one has done that. With this

testing, they would have a better indication of whether the cells were hormonally

sensitive and whether hormonal treatment would be effective. He said that if her cells

were. If her cells are hormonally positive, trying the hormonal treatment would be a good

option. If they are negative for sensitivity, he would lean to the avastin route. The side

effects of the hormone Arumitex is arthritis symptoms in the hands. (Dr. Gershenson in

Texas also recommended hormone treatment). Dr. Konner thinks it will take more than 6

weeks to know whether the hormone treatment is effective. He thinks it will take 12 weeks

to know. He also thinks that by taking Sarah Liz off the birth control which was given so

she would not go into menopause, plus adding the arumitex treatment, she may have a good

response and her CA125 levels will come down.

• GOG 239 clinical trial – Per Dr. Konner, this is a good option. (Same clinical

trial that Duke and MD Anderson recommended).

Plan: After discussing the above options, Sarah Liz decided to go ahead and try the

hormone treatment. Dr. Konner wrote her a prescription and she had it filled at the

pharmacy there. Dr. Konner will write a detailed plan and send that to Dr. Berchuck at

Duke who he feels would be willing to continue to follow Sarah Liz. He said he had seen

patients do well on this type of treatment for a good while. He also said he thought the

GOG study was a good option as well as the avastin treatment along with taxiteer or

cytoxin. He said that a combination of avastin/cytoxin would have less side effects. She

would not lose her hair and would be able to work. With avastin/taxiteer there would be

more side effects, she would lose her hair and might not be able to work. This would be a

good option for summertime. Dr. Konner offered to see Sarah Liz again in the future. She

can come to Sloan for treatment or see her periodically. We asked if Dr. Konner had other

patients with a similar medical profile as Sarah Liz. He said that he had seen a 28 year

old woman the day before and he would call her and see if she would be willing to talk

with Sarah Liz. That was really nice to hear.

Explore topics in this journal entry and replies:

Taxotere Cancer Taxol Arthritis Menopause Avastin

9 replies

Thank you so much for sharing all this information. I of course have heard about Sloan Kettering and MD Anderson and am happy to know they are receptive to giving 2nd opinions. I'm curious if you contacted these specific doctors on your own, or did your Duke physician arrange the introductions for you? Dr. Gershenson is very well known. Was it easy to get the appointment with him?

Hi,

Dr. Konner in my oncologist and he is a wonderful caring person. What I really like about him is that when I encountered some problems with my originial chemo treatment which was the IP regime, he changed the treatment plan and while it took longer I was able to successfully complete it. I was stage IIIb, my operation was 2/06 and so far everything is fine.

I wish Sarah Liz the best of luck with her fight.

Katie

Thank you for sharing all this important information. There is always something that the rest of us can use for reference.

You certainly went to the right place for an opinion. I live in NYC and while I don't get my treatment at Sloan, I'm happy to know it is right here if I need it.

I'm not sure if you meant "taxotere" as the alternative for taxol. If so, I was on that and the effects were better than the ones for taxol. The only thing I found worse was the nausea (but Emend helped that) and some fluid retention in the lower legs ("transient" and it goes away).

All the best to Sarah Liz, and to you.

It sounds like you have gotten alot of useful information for a very knowledgeable caring doctor. I also think it is wonderful that he was willing to ask another patient if they could talk about their similar situation. That was awesome. Good Luck

It was easy for me to see him because I have the rare type of cancer that he specializes in. I contacted all these doctors not Duke!

I am interested in what kind of cancer you have.

I have low grade serous ovarian carcanoma (I don't think I spelled that right) 3A.

Sarah

i had a different type of ovarian at 26, immature teratoma grade 3 stage 1c. We also got second opinions from both sloan and md. if you'd like to talk about this with me feel free to email me at sarah.hey dinger @gmail.com (spaces removed of course:)

Sarah

It sounds like we have similar diseases. I am 38 years old. I also have low grade serous ovarian carcinoma. I was in remission for about a year. I am now doing a trial at M.D. Anderson for low grade. I was wondering if you know anything about this trial?

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