I was diagnosed with stage 1 fallopian tube carcinosarcoma last fall, 2017.I had hysterectomy for PM bleeding and this is how the cancer was found. I then had staging surgery a few weeks later. No lymph node involvement. No spread to anywhere else. I was advised to go thru chemo. I had 6 rounds from Dec. 2017 thru April 2018. My hair is now growing back. I feel so grateful this was caught so early. My gyn oncologist and my gynecological surgical oncologist have only seen one or two cases their whole careers and both advised chemo. I live in LA. I am so glad i saw a specialist. My last Lab was normal. Good luck.

Hi Michelle and Janet,

Janet, I'm happy to hear that you are doing well! Thank you for sharing your experiences with Michele. Your advice to see a specialist is so important. I recall that early on you were having some trouble finding a gyn surgical oncologist. Where did you go for treatment?

Michele, as Janet said, please seek the care of an expert in GCS/MMMT. There is useful information under the Resource tab that can help you as you are trying to deal with this horrid diagnosis. One item that Diane pulled together is, "Newly Diagnosed, What to Do?" The Resource page also has interviews with our experts. Video #4 with Dr. Growden discusses treatment recommendations depending on stage. (You will find the video and the transcript here: http://gcsproject.org/diagnosis-treatment-gyn-carcinosarcoma-mmmt-dr-whitfield-growden-part-4-video/

All the best to you. Keep in touch.
Kathy

Michelle, I was diagnosed at stage 1A also. The cancer appeared to be contained in the uterus. I had a total hysterectomy. I also went through 6 weeks of chemo. The information I read said the cancer could come back if I did not receive the chemo. That was also the advice of my local doctor. I completed treatment in September of 2017. Thus far the cancer has not returned. I go for a one year checkup in October. Dr. Birrer, whom I was able to see, recommended CT scans the first two 3-month checkups and then go for every six months. I chose to do scans every 3 months for this first year to be sure we caught it early if came back. I know it is an aggressive cancer. I wanted to catch it early again!

Please feel free to contact me if I can be of help to you.

Ann

Janet,

So glad to hear of your good news! Still a scary prospect! I was diagnosed stage 1A of uterine cancer. I, too, took the six rounds of chemo - I made that decision on what I had read and on the advice of my local doctor. I did not take any radiation. My last treatment was September of 2017. I will go in October for my year checkup. I went for checkups every three months for the first year. I had scans done. I want to catch this cancer early again should it return!

Ann

Michelle,

I was just reading again your note and was noticing your interest in holistic options. I researched some of that, but the people I was researching were not dealing with this type of cancer. I decided that I did not want to risk the quick return of the cancer so opted for the chemo. It is no fun, and losing my hair was one of the worst parts, but I wanted to give myself the best chance I thought possible to survive this cancer.

Ann

Thank you!

Unfortunately I live in Pittsburgh PA so Alabama is far away. I might try Dr Santin at Yale. It's still a hike.I'm still not sold on western treatment after a bunch of research. Sometimes I wish I didn't know about alternative treatments s my decision would be easier.

I still haven't made a decision to do chemo. My oncologist said that if it were to come back, it would be untreatable.

Initially he wanted to use carboplatinum and paclitaxel. I was very concerned about the possibility of developing neuropathy. I'm a veterinarian and acupuncturist so tingling or loss of feeling in my fingers would mean I couldn't work. I'm only 49.
He is now suggesting Ifosfamide. The side effects don't sound any better, just different. the one that concerns me the most is: Changes in your central nervous system can happen. The central nervous system is made up of your brain and spinal cord. You could have extreme tiredness, agitation, confusion, hallucinations (see or hear things that are not there), trouble understanding or speaking, loss of control of your bowels or bladder, eyesight changes, numbness or lack of strength to your arms, legs, face, or body, and coma.

I have an appointment with a naturopath next week.

Hi Michelle,

Determining the treatment protocol will be the most important decision you will make. I cannot offer medical advice, but I'd like to share some resources for you. You'll find videos from our experts discussing the best treatments available, which I encourage you to watch (there are also transcripts included).

The information you shared on Ifosfamide seems to come from the UPMC/Hillman Cancer Center. I'm including some additional information from the NCI. Neither Hillman nor the Natl Library of Medicine, however, lists the frequency of which the side effects occur.
On ifosfamide:
https://medlineplus.gov/druginfo/meds/a695023.html

On carboplatin:
https://medlineplus.gov/druginfo/meds/a695017.html

On Taxol (paclitaxol):
https://medlineplus.gov/druginfo/meds/a607070.html

I encourage you to ask your physician for more specific information on the frequency and severity of the side effects as well as therapies to minimize the CNS symptoms, including neuropathy. The drug inserts for ifosfamide and the other recommended treatments list the frequency in which the side effects have occurred in clinical trials. This is available online. I've included the insert for ifosfamide below, which is found by googling "FDA ifosfamide." You can get this for the other drugs by searching "fda carboplatin," etc.

https://www.accessdata.fda.gov/drugsatfda_docs/label/2015/076657s017s021s025lbl.pdf

As I mentioned, I cannot provide medical advice, but I have my own opinions based on my education, work history and experiences with Diane, whose vision and hard work created this website and initiated research on gyn carcinosarcoma. I think naturopathic/alternative treatments can compliment recommended medical or conventional therapies, but I do not agree that they are a substitute - especially when treating carcinosarcoma.

The following article from the National Cancer Institute, "Forgoing Conventional Cancer Treatments for Alternative Medicine Increases Risk of Death," discusses this:
https://www.cancer.gov/news-events/cancer-currents-blog/2017/alternative-medicine-cancer-survival
https://academic.oup.com/jnci/article/110/1/121/4064136

I'm a fellow Pittsburgher and would be happy to talk to you about your concerns.

All the best,
Kathy

Hi Michelle:

My mother had neuropathy with some of her treatments (I'd have to look at her records to see if she kept track of which ones). Some treatments side effects were more severe than others. There was a time when she couldn't use her hands because they were incredibly sensitive. Other times, just numbness in her legs. I'm not sure how often it was, as she was always so positive and rarely complained.

However, based only on what I saw my mother go through, and the reality of the disease, I would agree with Kathy that holistic measures should be a compliment to chemo treatment, not a treatment by itself. Like most cancers, but even more so with GCS, it is incredibly important to be diagnosed early, and to treat aggressively as soon as possible. Realistically, there will be changes in your life because of this diagnosis, physically, and to your daily routine (such as work), but hopefully it will be a while before that happens. In my opinion, your odds will be better the sooner you receive medical (chemo) treatment.

Best of luck to you. I'm glad you are doing research and reaching out on this forum. It is a small community, but we are all here to help and support. Stay connected and stay positive! Hugs from NY. 🙂

Alicia

Hello to all... its good to be back on the site.

Michelle, I swear that you asked me how my treatment was ( and is) on ifex.
Now I can't find the question again!
But I will give you my thoughts anyway, as I have been on both protocols. I started with carboplatin/taxol... had the usual side effects but generally did very well on these drugs. I understand that taxol is an important component to the treatment and I would check with your doctor as to whether he plans at add this even if you choose Ifex. I believe that the neuropathy is more common with the taxol. I was no exception but in my case, the S&S were not intolerable and were temporary. I absolutely did have hand tremors during this treatment and that could have been the carbo but they also subsided after treatment.
Unfortunately, it was found (and not anticipated) that I had metastatic disease while on the carboplatin/taxol. This should not be a factor in your decision as both ifex and carbo/taxol are standard treatments and it's a bit of a crap shoot for this cancer.
I have tolerated ifex for the 6 rounds and the cancer has been punched in the face, significantly reducing the tumors in my lungs. Again, side effects for me, were doable... not always the case for others. Ifex, a 3 day infusion, with mesna, keeps bladder side effects to the minimum. No hallucinations, encephalopathy or bleeding from the bladder, but enough neuro symptoms that I do not like it!
I read myself going on and on...

both: hair loss, worse with carboplatin/taxol. who cares?
both: can be tolerated short term and s&s are mostly temporary
taxol: most symptoms are temporary but you will be monitored for these effects and dose adjusted.
stage 1A : a gift...some protocols do not incl chemo for this stage... you are 49 and should recover fully... my advice is to do either chemo but go to war with this mmmt. You are in a position to cure!!!

also:
I saw Dr Santin. He was a wonderful and expensive consult... but clearly said to follow the protocol which is always done first. carboplatin, taxol, ifex. You should be cured with this protocol. May the universe bless. Go for cure! then worry!
sincerely,
Lina

Hi Linda,
It's so good to hear from you! And such great news that the Ifos is reducing the lung tumors! Thanks so much for sharing your first-hand experience with chemo and Dr. Santin.
Stay well! Keep in touch.
Kathy

Hi Linda,
It's so good to hear from you! And such great news that the Ifos is reducing the lung tumors! Thanks so much for sharing your first-hand experience with chemo and Dr. Santin.
Stay well! Keep in touch.
Kathy

Thanks for the responses everyone!

Kathy, I would love to talk with you. You can email me at michelle@a440.org and we can set up a time.

I've been reading a lot on the Truth About Cancer site. I admit that I'm am a little bias against Big Pharma.