2 month update on my mom

Yikes!  Can I ask where you live?  I think you are right to seek a second opinion.  Please let us know how it goes.

So glad your mom found someone who is giving her options and that she has such a great daughter to look into all of this!   I too am from the Pittsburgh area.   My best to you and your mom.

I was told about Foundation One when I was diagnosed with cancer again earlier this year (my first bout with  uterine cancer was in 2010).  I had to apply for financing so they could see if there's anything I can do to keep my cancer from coming back.  I was told that nothing could be done until two complete batches (in my case, two different sets of 6 rounds of chemo lasting three weeks each) of chemo have been done, and even then, my GYN/onc wasn't sure if the genomic testing would be approved for uterine cancer as it's normally done only for ovarian cancer in his very busy office.   I was supposed to be the guinea pig to see if  the genomic testing for uterine cancer would be approved, and I still don't know whether it has been approved for that or not, as I didn't see the GYN/onc at my last appointment.  I just saw his PA, and I'm having an oncologist at another hospital (where I used to work) do my chemo.   I was, however, approved for 100% financing, which made me very happy.  The normal cost is $5,800, and I figured that having a decent retirement income, I would have to pay a good part of it, so I was very happy to hear it would all be covered if I am able to get it approved.   

My oncologist told me that this testing would look for both defective genes that came down through the family which might have caused my cancer plus ones that were in the tumor itself that spontaneously mutated to cause my cancer. I hope I'm saying this the correct way.  I think the idea is to look for the ideal treatment for my cancer, whether it's  chemo, immunotherapy, or whatever will work to keep it from coming back a third time. I'm in week two of my fourth round of chemo, so it will be about a month and a half before I can even find out if it will be done.  My mother, grandmother, and cousin have all had breast cancer.  My cousin recently had genetic testing which came out negative.  When I told my oncologist about that, he told me about the genetics in the tumor itself which might have caused her cancer.  I have been tested with a negative result for Lynch syndrome, but have never been tested for the breast cancer genes.  My last insurance company wouldn't approve the testing for genetic breast cancer as I didn't have enough "first degree" relatives with a history of it.  My cousin was found to have breast cancer this June, but even  she  wouldn't be considered a first degree relative.

There is a website for the foundation.  It's www.foundationmedicine.com in case you want to check it out. Good luck to your Mom.  Let us know what they find if the testing is done. 

takingcontrol58 said:

The Foundation

Pinky,
I had my tumor profiled through Foundation One in Jan 2015.  I don't know why there is a question for getting approval for uterine cancer testing.
Foundation One tests 315 genes- it is one of the most comprehensive testing organizations out there- they work with the National Institutes of Health. Many
insurance companies consider them experimental. 

Lynch syndrome only accounts for a small fraction of endometrial cancers- and inherited mutations only account for 5-10% of all mutations. Most 
of the genomic testing companies only test for a few mutations and not all the important genes tied to many cancers, especially endometrial
cancer.  Foundation One tests for all the important genes tied to EC, and will include the genes for Lynch Syndrome as well as breast cancer. 
Also, there are many other genes tied to breast cancer other than the BRCA genes, some tied to EC.

A good article to read at www.pubmed.gov is entitled "The emergine Genomic Landscape of Endometrial Cancer." Oct 2013.  It details  the gene
mutations  (found with the different forms of endometrial cancer. It is an excellent article.  Once you get your F! results, you can compare it to this
article.  If you have mutations on the P13K pathway ( a few of the genes on this pathway are tied to USPC), metformin targets the pathway, and it
could be an option for you.  Most oncologist just don't study all the mutations tied to the cancers they treat and if they don't have a "cancer" drug
don't offer any alternative, when there are other options like metformin.

Takingcontrol58

I'm glad to hear that you've already been through this and you're so knowledgeable about it.  I did mention both Metformin and Keytruda to the female PA at my oncologist's office, saying that I'd read on this site about how some of these other treatments had been working for our cancer.  The PA didn't seem to know about the Metformin being used for this purpose.  I'm sure my oncologist (and my GYN/onc at another hospital who did my surgery) are much better informed, although I'm happy with the PA otherwise.  She's been very thorough and answers questions well.  There is a huge amount of cancer in our area and my male oncologist is often pressed to get on to the next patient, although he's a hell of a nice guy.  I find the PA's spend more time discussing everything with me. Thanks for sharing all your knowledge with me.  It's really good to know!

NoTimeForCancer said:

Pinky, my gyn onc was always

Pinky, my gyn onc was always late to the appointment, which I hated, and at a certain stage in my follow up I switched to the onc in the office.  Like you with your PA, I love having conversations with her and chatting about the things I read here.  I had asked the onc about metformin.  She said there were some interesting studies being done and it does seem to have some qualities to help fighting cancer that they are really just finding out.  

With that said though, it probably is not the 'wonder drug' for everyone as some of the ladies said it had no effect on their cancer.  Maybe it is like aspirin and how it helps with heart attacks, etc. I told a friend who had Stage 3 UPSC about metformin (she does not visit this page) and it did nothing for her when it was prescribed. 

In the end, we all need to be happy with our doctors, not be afraid to bring forward what we read (and see) and hope they are open to listening.  

 

Yes, because we are all different, maybe whether it works or not just depends upon our genetics or other physical factors like our weight or maybe even if we are diabetic or prediabetic, although I know that's not always the case for when it actually works.  Some take it without that kind of status and it works for them.  Who knows, maybe some day someone will figure it all out. 

Being tired and weak is a very common side effect of chemo. And so is not being able to eat very much. For me, the things that I enjoyed the most were watermelon, baked potatos and black eyed peas. Sometimes a Frosty tasted amazing too. Don't be too concerned because chemo does a number to our digestive systems.  Your Mom's appetite may return a couple of weeks after each treatment. Mine did and boy did I make up for the times when I couldn't eat.

I hope this helps!

Love and Hugs,

Cindi

PS - Don't hesitate to call her doctor if anything seems off. They can give you ideas on things to help and also determine if she needs to come in.

My aunt is suffering with ovarian cancer stage III-C.  She underwent three chemos and surgery scheduled on 28.7.2017 subject to respnse of disease to the chemos.  If the response is not as expected, surgery will be after 4th chemo.  If the response is satisfactory, surgery will be on 28.9.2017.  her report shows

Multiple Extensive variable sized solid cyctic lesions with calcifications in peritoneal cavity in omentum and pelvis

s/o.Disseminated peritoneal mets? ovarian

Metastatic deposits of papillary serous adenocarcinoma.

This is my aunt's status.  I am very much worried. Clinically she is responding well to chemos.  What will be her condition.