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Question re: Second opinion at Memorial Sloan Kettering

SUNGRANNY
Posts: 81
Joined: Dec 2012

Hello,
I'm new to the boards and find the posts quite helpful. Recuperating well from abdominal full hysterectomy at Duke Medical Center. I was diagnosed with Stage 4 Serous Adenocarcinoma. This has been hard for me and my family, as the doctor doesn't sound too encouraging.
Recommendation is for 6 treatments of Carbo & Taxol, starting in January.

I am considering contacting Memorial Sloan Kettering for a second opinion. I looked at the website, and didn't find an answer. My question is, if I go to NY for a second opinion, can I then get their recommended chemo treatments in North Carolina, or would I have to go to NY for each treatment? (Not feasible in my situation.)

I am scared of the chemo, and encouraged to read that many of you have made it through and still able to have many normal days and experiences. Sounds like diet and exercise are crucial.

Appreciate any feedback re:second opinions.
Thanks,
Sungranny

Lovekitties's picture
Lovekitties
Posts: 2990
Joined: Jan 2010

While Sloan Kettering is an excellent hospital so is Duke from all I have read.

That being said, yes you can get a treatment plan from Kettering and have it implemented at Duke. I have heard of a number of such instances involving other facilities.

Stage 4 is always tough to hear. That is my sister's. When you say the doctor is not too encouraging, what did he/she say? It is not uncommn for them to say...we can't cure you but we can extend your life for Stage 4 diagnosis. It does not mean that there is no hope. There always is to the last breath. The longer one lives the more chance there is for new treatments to come out or, one day we all pray, that a cure is found.

The Carbo & Taxol chemo combo seems to be what they call the "gold standard". This is the treatment my sister will start this next Friday.

If getting a second opinion will make you and your family more confident about your treatment, then by all means do it. If it is only your doctor's manner of dealing with you, then perhaps you can find another at Duke who can provide better interaction.

Wishing you many years.

Marie who loves kitties

SUNGRANNY
Posts: 81
Joined: Dec 2012

I appreciate your response. My doctor has treated me respectfully and thoughtfully. I'm the one who pushed the issue by asking "what if" and survival stats for the chemo, so don't fault her honest and careful responses.
They are hoping the lymph nodes would get better or be stable as a result of the chemo.
I do best with information, so I need this to get my affairs and life in order before starting chemo.
If I go through chemo, then I need to be able to go into it with the attitude - mind, body,and spirit, to do all and can, whatever comes. That was my attitude preparing for surgery, and being able to hear the results.
I saw a post from a 4 year survivor of stage 4 Adenocarcinoma, and I'm thinking, "why not me also?"
Peace,

paris11
Posts: 132
Joined: Oct 2010

Into the storm - It can be you. Expectation determines outcome. "All healing is self-healing." Schweitzer

I have been living with Stage 4 EC (2 recurrences) for 6 years. For me, exercise is KEY.

I am being cared for at Lurie Cancer Center in Chicago. But I would have absolute trust in Duke.

Best to you.

Connie

artist49
Posts: 54
Joined: Oct 2011

I got the same diagnosis as you in September 2010 and have been on a clinical trial at Sloan
since then. So far, still NED. In my opinion you should go for a second opinion at Sloan. My oncologist there mentioned recently that they have just opened new clinical trials that
include standard chemo drugs plus parp inhibitors for endometrial cancer patients. Why not
try the newer drugs in addition to the Gold Standard from the past? You might have better results! I was offered that choice in October 2010 - carbo plus taxol or the clinical trial
which included two standard drugs plus avastin (which I'm still on as maintenance). Believe me,the choice was scary but I felt, given my advanced stage, that I had nothing to lose.
Good luck and please, please don't despair. There is much more hope than you think.

beila
Posts: 97
Joined: Sep 2012

Hi Artist 49

I just started a regimen of Doxil and Avastin,$$$$, partly due to your positive influence, and partly from speaking to a NYU Gyn Oncologist who recommended this
My 6 rounds of Taxol/Carboplatin were not effective

So hopefully this WILL be effective

Out of curiousity, did you have to go and live in New York during your clinical trial?

So glad you are one of our NED role models & that you are feeling well

Beila

artist49
Posts: 54
Joined: Oct 2011

Hi Beila! Hoping you will do well on your new regimen. In answer to your question, I've been a resident of NYC for the past 47 years and just recently moved to NJ just 1 1/2 hours
from Sloan. Clinical trials are offered at many major cancer hospitals around the country.

SUNGRANNY
Posts: 81
Joined: Dec 2012

Hearing from other Stage 4 survivors is wonderful. Thank you.
I may be eligible for a clinical trial at Duke for Serous Endometrial Cancers, I'll know if I fit the critergia soon. The breast cancer chemo drug Herceptin is added to the Carbo/Taxol combo. The problem is, you receive the Carbo/Taxol combo or Carbo/Taxol/Herceptin by a random selection. Is that how it is with your clinical trial at MSK?

Taking life day by day.
Sungranny

artist49
Posts: 54
Joined: Oct 2011

There were three arms in my clinical trial and which arm a person ended up in was determined by computer. Each arm had two standard drugs and one newer drug, so everyone ended up with something a little novel. They were trying out different combinations to
achieve better results because carbo/taxol alone has limited success with UPSC.

laura25's picture
laura25
Posts: 160
Joined: Mar 2011

I also when to Sloan for a 2nd opinion. My situation was a alittle different bc my cancer was found by accident during a partial hysterectomy. I went there b4 my total hysterectomy so I didn't have a complete picture. I was told Carbo/Taxol were the gold standard drugs.
I stayed with my local Dr since he was going to use the same treatment plan as Sloan. He also did a fellowship through Sloan and works with them regularly.
I was told that with advance stage cancer (mine was 3c) that Sloan has many clinical trials. For me and my family, getting a second opinion gave us peace of mind. I found it, and still do so horrible that you have to make such a life and death decisions at your absolute worse. But getting as much info as possible helped make the decisions easier.

SUNGRANNY
Posts: 81
Joined: Dec 2012

Thank you all for your feedback and support. I contacted Sloan, had my records faxed, and heard back from them that after reviewing my records I am not eligible for any clinical trials. They would recommend the Carbo/Taxol combo with radiation, same as the Oncologist at Duke.
Now - onward to Chemo! I'm passing into a new phase of adjusting to having cancer. The acupuncturist that helps with pain and constipation suggested that I think of the process as disease management - similar to those who live with diabetes. Use all the tools available - chemo, nutrition and diet, exercise, meditation, and focusing on finding contentment in everyday life. This makes more sense to me than worrying about a "stage number."
The support program gave us the book FINDING THE CAN IN CANCER, by 4 10+ year, stage 4 survivors. My new mantra - "So can I."
Support is SOOO helpful.
Thanks,
Sungranny

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

You said it -- SUPPORT IS SOOOO HELPFUL!!! We can't do this journey without some hand holding from lots of people.

One week before I started chemo, I started a personal therapy group with other women. This was one of the best things I could have done at the beginning of the journey. These women held my hand, gave me some guidance from their cancer experiences and were there for me from day one. We tend to feel like fish out of water, and when we open our thoughts and hearts to others who've been there, sure does make the journey easier.

Today, most all of these women are still with me, even after 4 years. We have a very close bond and tell each other things many of our husbands simply wouldn't care or understand.

You talk about worrying about a "stage number"...I can relate. Don't think about the "unknowns", simply try to gain as much insight on the cancer and know YOU HAVE CONTROL to think POSITIVE thoughts. Who has time to waddle in the mess, get up and think about living a long life. Not always easy, but sure worth a try each and every day.

Plaque on my oncologist's office --

~~YOU ARE A STATISTIC OF ONE~~

We're here for you, so plse keep us posted on your progress, as we care
Jan

Teamkelly's picture
Teamkelly
Posts: 55
Joined: Sep 2012

You did not say what kind of cancer you have, my sister in law has carcinomasarcoma MMT, her stage is 3CA she was diagnosed in September of this year and we went to MSK in October for a second opinion. we met with Dr. Hyman, he and one of his partners wrote the protocol for the current clinical trials for this cancer, which is in the final stage of trials. Ifosamide (sp) with taxol is what the trial is. My SIL decided to do carbo/taxol and just had her 3rd treatment , she works out twice a week with a trainer (she was doing this before diagnosis) and walks everyday, she has never had nausea, continues to eat fine, she is halfway thru her treatment. The doctor at MSK re-did pathology from surgery and found it was more advanced than original pathology which showed it was thru the uterine wall, in 1 lymph node. MSK found it in 1 ovary and 2 lymph nodes, it gave us all peace of mind to get the 2nd opinion and she is being treated by her doctor in California.

Nicki

forida
Posts: 3
Joined: Feb 2013

Hi Teamkelly,

My mom just had surgery for UPSC last week. She's currently awaiting her pathology report. How was the doctor at MSK able to re-do pathology? Did he require the original material from surgery? Is it practical to transfer this from one hospital to another?

I'm making an appointment for my mom today to see someone at MSK. The pathology lab in NJ told us their report won't be ready for another 4 days. I'm trying to coordinate everything such that she get seen at Sloan asap.

Best wishes,

Forida

 

nancibee's picture
nancibee
Posts: 50
Joined: Sep 2012

I don't know if it is true in every state but I was told by the Kaiser genetics lab in California (who performed Lynch syndrome testing on my tumor a couple of months after surgery) that tumors must be saved for seven years. No idea about rest of removed organs.

Teamkelly's picture
Teamkelly
Posts: 55
Joined: Sep 2012

We picked up a box, which included slides from pathologist in CA and overnighted it to MSK before our apptmt, they also asked For the pathology reports and CD of CAT scan.  Hope this helps. The box was sealed when we picked it up so I do not know what was inside.  By the way Kelly is having her last chemo treatment today and is doing great, never had any nausea has not lost any weight biggest problem is some neuropathy continues to work out with personal trainer and walks daily next CAT scan will be before March 27 that's when her doctors appointment is.

 

 

 

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Was inNY on holiday, live in Israel, when Dx, was July 4th weekend 2010.  Did research and surgery done by Dr Peter Dottino gyn Onc

at Mt Sinai.Removed whole nine yards. Dx stage IV grade III Adenocarcinoma clear and mixed. Waited ten days had path slides taken by hand, my husbands, to MSK for second opinion. 

Was shoved release for joining experimental group under nose to sign. I asked after I finished rounds of tax Carbo and whatever when could I go back home. Could I go between TxS? Resounding No! Kinda we own u!

took next plane back home after visiting rabbit warren area for chemo. Also felt that stats so awful only thing that would get me thru at least On some level , was my attitude. That environment ,sans family and work would kill my soul if not my body.

took next flight out, figuring chemo in bag is chemo in bag. Had Tx in Israel then added Doxil to carbo esp when I began to have neuropathy In feet.

tumor returned within eight months, beginning of it probably while I was still on chemo.stats said if tumor returns in under year, life expectancy 18 months, Max.

so much for stats!

8cm tumor oct 2011. Many places in Ny and Israel wanted to do chemo to shrink then operate. I couldn't see sense of weakening me and my immune system before surgery. Went back to Mt Sinai where Dottino operated and removed tumor and resected colon which tumor oohing onto. Put me on Gemzar and went back to Israel to continue Gemzr. Body couldn't tolerate it, needed blood transfusions and still couldn't tolerate and white and red bloods very low. Stopped. New tumors appeared. Began radiation to zap. Success. Next pet three months later showed new tumors three places. More rads. Then pet three months ago clear. Need pet in month and half, ct and bloods and markers always great, go know!

Thank God, traveled to Australia, and other places in between. Grandsons wedding this coming Thursday. Looking forward to another grandson's Bar Mitzva. Taking each quark of time as it comes.

Servan Schreiber Anti Cancer Mediterranian

diet and excersizeing on treadmill and or pool daily. Bought Far Infa Red Sauna, go in after excersizeing. Then go to,wo.rk. Living is best revenge. Pray, Live, love, hope!! Sara

Roena's picture
Roena
Posts: 20
Joined: Dec 2012

Sara - mazel tov on the upcoming wedding of your grandson.  It sounds like we are neck and neck in the war!  Fortunately, I have had almost zero side effects from all the chemo although I did develop neuropathy in my feet from the Taxol.  I get Decadron before infusions and it seems to work well to keep side effects at bay.  Also get zofran and benadryl.  Genzar has been a snap although since the beginning of this journey I've had 6 transfusions - two in conjunction with pulmonary embolisms.  Neulasta starts tomorrow to boost my white cell count (neutrofils).  You are well on target with the Mediterranean Diet and exercise.  Enjoy EVERYTHING, even treatments and tests.  You are so right, living and living well is the best revenge.  Yesterday can't be recalled or repaired, tomorrow is always a question so why worry?  Today is all any of us have.

L'chaim and Shalom

Roena

 

SUNGRANNY
Posts: 81
Joined: Dec 2012

Roena,

I love your teal wig so much that I ordered one online and wore it to the Cancer Center.  Fun to watch the reactions, and the Smiles on the chemo nurses.  Thanks for sharing your great attitude.

Sungranny

Roena's picture
Roena
Posts: 20
Joined: Dec 2012

Hi,

I recently had a second opinion at Duke.  I'm currently being treated for the same condition in LCCI in Charlotte.  Did the 6 rounds of carbo/Taxol, was in remission for less than 3 months (sucks).  Now on Carbo and Gemzar on an extended schedule due to a big drop in WBC and Platelets.  Neulasta starts tomorrow.  I know that a lot of people have great faith in Sloan.  My personal opinion is that you get just as good treatment at Duke.  Clinical trials are available at all the major cancer treatment centers (Sloan, Duke, Anderson, etc.).  Not all trials are available at each location and each location has specific trials only.  You also have to qualify for trials and each center has different qualifications.  I met with the Director of GYN Oncology as well as the Director for Clinical trials.  Both assured me that the protocol I am receiving is appropriate for my situation.  I was ready to fly to NY or Texas but feel very confident in the information I got at Duke.  Several of my friends have had their various treatments at Duke and wouldn't go anywhere else.  Duke is ranked very highly as a major cancer treatment center.  Of course, you need to make your decision based on your particular situation.  For myself, I'm satisfied with  LCCI and Duke.

SUNGRANNY
Posts: 81
Joined: Dec 2012

Roena,

Hello fellow Carolinian.  Thinking of you and your treatments in Charlotte.  I have just gotten through recup from my second of 6 chemo treatments.  After that a scan and evaluation to decide about radiation.  After research and discussion I stayed with Duke and am glad I did.  I feel comfortable here, and with my oncologist. 

Thanks,  Sungranny

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