Option for recurence ?

Sandrine04 said:

Nobody?

Nobody?

Dear Sandrine, I am not sure if things are getting lost in translation, but there have been quite a few replies by the ladies here who care about you.

First, for your anxiety, you may want to ask your doctor for lorazapam.  It may help you find a little peace so you can continue your search.  As for your search, maybe you can ask about Keytruda. (may be considered experimental for gyn cancers)  Some of the ladies have had success with it, but as for topotecan - two reported it did not do anything for their cancer.

I know you had written about hormone therapy.  Was that tried?  I know you said a doctor had suggested it but I am not sure if you started it.  

Also, takingcontrol58 had written the following on metformin:

Sandrine,

Metformin was approved in 1995 in the US for the treatment of diabetes and insulin resistance (prediabetes).
Gynecologists also prescribe it for patients with PCOS (polycystic ovary syndrome) which is usually caused by
insulin resistance.  In 2005, researchers learned of its many anti-cancer benefits.  It is an inexpensive, generic
medication and is considered one of the 100 most essential medicines by the World Health Organization because of
its safey, effectiveness and low cost. Metformin has been used in Europe for over 50 years.

It has been shown to be partularly effective for endometrial cancer because endometrial cancer cells have alot of
insulin receptors on their surface.  I was insulin resistant (pre-diabetic).I had borderline high glucose levels and
high IGF-1 (insulin growth factor-1), which is a hormone usually raised before the diagnosis of endometrial cancer.  I don't
understand why most doctors don't test for this hormone.  If you are diabetic and taking another diabetes medication, you
should switch to metformin because it is the only diabetes drug proven to have anti-cancer beneficts.  If you are overweight or have
borderline high glucose levels or high levels of IGF-1 or are insulin resistant, you should ask your doctor to put you on this
drug.   All these are risk factors for endometrial cancer.  Metformin has many other benefits that target the processes that cause
cancer cells to grow and metastasize and become immune to chemotherapy. Since there are no effective cancer treatments
that cure metastatic cancer, I would suggest you try metformin.  All 34cm of my metastases disappeared when I started taking
metformin, without cutting out any organs or getting additional surgery. You have nothing to lose. 

If you have had surgery, you should ask to get genomic testing on the tumor they removed.  If you did not have surgery,
you can request Circulating Tumor Cell testing, which will identify gene mutations through a blood test.  Metformin also 
targets a mutated pathway found in 80% of all endometrial cancers, the P13K/Akt/Mtor pathway.  This pathway regulates insulin.  
If you have a mutation on this pathway, metformin might be of even more benefit to you.  I had a mutation on this pathway.

Let me know if you have any more questions.

Taking control58

For all of us based in the U.S., we just don't know the best clinic or cancer centers in France or Europe.  (Traveling in Europe is different than the U.S. - traveling 6 hours in one state in the U.S. can take you through several countries in Europe).  Although two of the ladies have gone to Dr. Herzog's clinic in Germany - daylady and editgrl.  

The lack of response is not that the ladies don't care - we do.  I hope this wrap up of some of the notes I have found on the chat helps.  Unfortunately, everyone is different, so what works for some of the ladies may not work for you - they just keep throwing things at it...I pray they find a cure.

Dear Sandrine, I am so sorry you are struggling, I don't have anything else to add though and hope this does not come off mean-spirited in any way - I just have search the boards for some of the responses.  

Hugs dear one.

Oh dear, Sandrine.  Of course you are distressed - it is completely understandable.  None of us really know how much time we have with the ones we love.  I think those of us who have/had cancer realize how precious it really is, which is why my chemo nurse told me, "Go out and LIVE!"  I am sure you are spending all the time you can with your husband and children and making so many wonderful memories that even if you lived 100 years they will always treasure them close. 

Sandrine, I had a recurrence in my right middle lobe of my lung. I had only one nodule which is odd to only get one, but they surgically removed it and then I had the 6 treatments of carboplatin and pacilitaxol. I will get catscans every 4 months to check and see if any other cancer occurs. I can sense your fear and anxiety and will be praying for you.

Sandrine,

Eight months after finishing frontline treatment (paclitaxel/carboplatin and brachytherapy), a CT scan showed multiple (never did get a count...2, 3 50??) peritoneal tumors and mets to my liver. Lymph nodes were enlarged. No biopsy, the assumption was that it was from my original cancer. I have been on once-a-month (every 28 days) chemo of liposomal doxirubicin/carboplatin, starting last December. I've had a nearly 4-week delay back in March/April due to a low absolute neutrophil count. In fact, my sixth chemo was supposed to be this morning, but my ANC is too low. Very disappointing. We will give it another go next week. A CT scan in March showed that I was having a significant response (no radiographic evidence of the liver mets or lymphadenopathy, and the main tumor in in peritoneal area had shrunk by over 50%. I will request that my 3-month CT be moved up into June (instead of early July). Better to know now if the chemo is continuing to work, or if my cancer has progressed and it is time to move onto something else! 

I feel great, always have, so that is an enormous advantage in setting my emotional tone for the day. Things to help limit the anxiety/sadness spiral: step outside and breath the air. Listen to birds chirping, traffic going by...go to the farmer's market, call your best friend and ask how their day is going. And, IMHO, be joyful that Emmanuel Marcon is your president! I sure am.

Beebster