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Please share your experiences with MMMT/Carcinosarcoma

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(@Anonymous)
Posts: 0
New Member Guest
 

Hi Diane-

That would be wonderful. Alexei (Dr. Wright) is young super engaged in her practice. The nurse practitioner that worked with Alexei and I was Anne Stewart. At DF you get dedicated chemo nurses ( which is really wonderful) I can give you these names as well.

Dr. Berkowitz has been working in this field since he began working in medicine. He is truly a remarkable man, so warm, unusual for a surgeon.

Let me know how I can be helpful. I know Dr. Matulonis is the department head for GYN Cancers at DF. Alexei is warmer and kinder in my experience. However, Dr. Matulonis has an interest in new therapies. I believe you have my email, please feel free to contact me directly. I would love to hear about how you started this. I have started non-profits before, I'm looking into a clearinghouse/website that will provide information on Cancer friendly employers and businesses, resources/workshops on work during treatment, for both cancer patients but again a focus on employers that are willing to say, yes, this is not an obstacle for me. Employee rights. ETC. I was relieved of my job during treatment, it was completely illegal, however, I saw many, many other patients at DF in my shoes. I found this troubling. I would like to help change the stigma that goes with cancer.

Best wishes,

Andrea

 
Posted : 23/12/2017 1:58 pm
(@dmred52)
Posts: 1
New Member
 

I was diagnosed with Stage 4b GCS in April of 2015. Surgery was not an option for me. I consulted with 6 major cancer centers with varied results. I was treated at 2 Cancer Centers before I found a knowledgeable and compassionate physician at Mass General Cancer Center with expertise in my diagnosis. My disease has been stable since August 2015 and I am taking Cyclophosfamide 50mg every day and receive an infusion of Avastin every 3 weeks. I am scanned every 3 months. With every scan, I hold my breath and hope for stability. I do not have remission but my cancer and I are co-existing.

This is a rotten cancer and some women do better than others. No one knows why. That is why I started the GCS Project. It is my hope that as a community of GCS Women, we can find solutions to enable us to live longer. Please share your stories here. What has worked for you? Where have you been treated? If you believe that your experience will help others, please share. I look forward to hearing from you.

 
Posted : 07/08/2017 4:34 pm
(@brenda-r)
Posts: 14
Active Member
 

Diagnosed Jan 2017. Full hysterectomy, with removal of ovaries, tubes, and omentum. Stage 3C2. Positive pelvic and para aortic nodes. 6 rounds of chemo. Opted out of Radiation. Just had a clean CT scan. Now we wait.

 
Posted : 08/08/2017 1:25 pm
(@diane)
Posts: 31
Member Moderator
 

Was your cancer uterine?

Congratulations on the clean scan.

Where were you treated?

Thanks for posting

 
Posted : 08/08/2017 1:41 pm
(@dewey)
Posts: 2
New Member
 

I was diagnosed in late February 2017 with carcinosarcoma stage 4b. One week later I had a radical hysterectomy and a laparotomy, followed by 8 weeks of carbo/taxol dose dense chemo. My second surgery to debulk the tumor(s) was on May 30 and am now receiving carbo/taxol every three weeks. My chemo was delayed after the 2nd surgery related to an infection - it looks like a hematoma (fluid collection) in my left peritoneal cavity which became infected with MRSA resulting in the placement of a series of drains. We are still battling the MRSA, but we forge ahead. I am being treated by Dr. Sue Davidson (surgeon) at Denver Health Medical Center and I receive my chemo at the University of Colorado Caner Center, Dr. Carolyn Lefkowits - the docs have been great including the gyn/onc residents and fellows. I am very thankful for this website, thank you for your efforts to connect us in this challenging journey.

 
Posted : 09/08/2017 7:33 am
(@azkathy)
Posts: 1
New Member
 

I had my hysterectomy March 3, 2017 and they took all my lady parts. Diagnosed 1a. Finished 6 rounds of carbo-taxol on July 17. Chose the chemo because this cancer is so sneaky and unpredictable. I am having a PET scan on August 28. I feel fantastic and tolerated the chemo better than many. The hardest part is that life will never be the same.

 
Posted : 09/08/2017 9:56 am
(@diane)
Posts: 31
Member Moderator
 

Hello Allie,

Thanks for sharing your story. I think your treatment speaks to the variation of treatment for this cancer. I was also diagnosed at Stage 4b. I was advised that I was not a surgical candidate at stage 4b. How are you doing now?

 
Posted : 09/08/2017 5:57 pm
 kip
(@kip)
Posts: 2
New Member
 

Brenda thank you for sharing your story. May I ask why you opted out of radiation?

 
Posted : 10/08/2017 6:54 pm
 kip
(@kip)
Posts: 2
New Member
 

I was diagnosed with stage 1a in April 2017 following a total hysterectomy with both ovaries removed. Presently on round 5 chemo carbo/taxol, having moved from a 3 week interval to a 4 week interval due to low neutrophils. My onco doctor is Anna Tinker at BCCA in Vancouver, BC. I'm scheduled for a radiation consult, but am hesitant because of the risk/reward with radiation. I would love to hear others' opinions on radiation and also, I'm searching for a flow chart I saw on this site earlier re: staging and treatment.

Thank you everyone for sharing your stories. Thank you Diane for putting this site together.

 
Posted : 11/08/2017 7:02 am
(@stephanie)
Posts: 7
Active Member
 

Diane,

Bless you for starting this project since it has been a godsend of information for me as I help my life partner (Karin) navigate her treatment options. She had a tumor removed last week in her left pelvis that developed towards the end of of 18 weeks of Carbo/Taxol after a full Hysterectomy in early February 2017 (we will share her full story soon).

She is currently being treated at Mayo Clinic Jacksonville and her tumor samples are being sent today to Foundation Medicine for Genetic Testing. While we wait on the testing results (I've been told 4-5 weeks), we are aggressively seeking second opinions for her next treatment options. We are scheduled to see Dr. Robert Coleman at MD Anderson in Houston next week and I contacted UAB this morning to schedule an appointment with Dr. Birrer that is pending.

Based on your experience and clinical knowledge can you offer any other opinions/options that we should consider? Also, I just posted information about using IBM Watson for treatment planning and I am curious of your thoughts on that as well since what I have read so far is encouraging.

I hope that you continue to feel and do well. I can not thank you and your family enough for starting this initiative. Moving forward, I am committed to help drive our friends and family to the GCS Project for donations to this research on GCS.

Thank you, Stephanie and Karin

 
Posted : 14/08/2017 6:33 pm
(@dewey)
Posts: 2
New Member
 

I was diagnosed in late February 2017 with carcinosarcoma stage 4b. One week later I had a radical hysterectomy and a laparotomy, followed by 8 weeks of carbo/taxol dose dense chemo. My second surgery to debulk the tumor(s) was on May 30 and am now receiving carbo/taxol every three weeks. My chemo was delayed after the 2nd surgery related to an infection - it looks like a hematoma (fluid collection) in my left peritoneal cavity which became infected with MRSA resulting in the placement of a series of drains. We are still battling the MRSA, but we forge ahead. I am being treated by Dr. Sue Davidson (surgeon) at Denver Health Medical Center and I receive my chemo at the University of Colorado Caner Center, Dr. Carolyn Lefkowits - the docs have been great including the gyn/onc residents and fellows. I am very thankful for this website, thank you for your efforts to connect us in this challenging journey.

 
Posted : 15/08/2017 5:15 pm
(@stephanie)
Posts: 7
Active Member
 

Hi Allie,

I am sorry to hear about you challenges. Hang in there and so happy the blood cultures were negative:) Karin had 18 weeks of Chemo and developed some neuropathy in the bottom of her feet near her toes towards the end of treatment. Gentle foot massage (I use peppermint foot lotion) appears to give her relief and I think keeping her body moving helps as well. I think there are some precautions with massage while you are on chemo so please check with your clinical team first.

I hope this helps and your will be done with chemo before you know it, Steph

 
Posted : 16/08/2017 6:48 am
(@wiltke)
Posts: 42
Eminent Member
 

Hi Kip,

I'm a friend of Diane's (40+ years) and have been working with her from the beginning to fight this disease. I am a member of the board of directors for the GCS Project, attend her medical visits as often possible and help with the science and medical aspects of this work (my background is in health care).

I saw that you were looking for the flow chart on staging and treatments that you found on this website. It's under the "What is GCS?" tab that has facts about MMMT, etc. Scroll down the page and you'll find the flow chart.

http://gcsproject.org/carcinosarcoma-facts/

There are also video interviews on this website that you might find helpful. Here is one with Dr. Marcella del Carmen in which she discusses treatments for GCS:

http://gcsproject.org/diagnosis-treatment-dr-marcela-del-carmen-part-7-video/

There is a transcript of the video available also (the link to the transcript is on the page).

All the best to you,

Kathy

 
Posted : 07/09/2017 12:52 pm
(@brenda-r)
Posts: 14
Active Member
 

yes, it was Uterine. I was treated at The Springfield Clinic cancer Center, in Springfield, IL.

 
Posted : 08/09/2017 11:50 am
(@Anonymous)
Posts: 0
New Member Guest
 

Diane,

Thanks so much for your time and effort with this initiative. Unfortunately, I too was recently diagnosed (8/17/17) with Uterine MMMT (at age 56). I was initially diagnosed with cancer at the emergency room and learned only after my full hysterectomy surgery (8/30/17) that there was both cervical and peri lymph node involvement. My treatment has been a whirlwind. I feel things have moved so quickly that I really should have anticipated how rare and aggressive this cancer is. I am trying to stay focused but have been just devastated by how little positive information there is out there. I am blessed with the best possible medical team I could hope for (Dr. Victoria Bae-Jump, UNC Gyn/Oncology Womens Hosp in NC) and am 100% confident in their treatment plan. I begin 6 rounds of Taxol/Carboplatin chemotherapy on 9/28 and I believe they want to follow that with some type of radiation. I know treatment has come a long way I just wish there was more "recent" info and stats on MMMT. This initiative is a really good place to share our experiences, successes and even failures in hopes of helping everyone get the best possible treatment and outcome available at this time! Thanks again! Susan

 
Posted : 16/09/2017 9:00 am
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