New to Forum

Tnowa850

I am joining for any advice for my mothers treatment. My moms name is Cheryl and I am her daughter, Tia. She was diagnosed with Stage 3B Uterine cancer in August of 2015. They started with a hysterectomy and removed 4-5 lymph nodes. Afterwards she did a sandwich of a total of 12 Taxol/Carbo treatments and 6 weeks of radiation. She did just fine with recovery however the cancer spread to a lymph node in her neck around March of 2016. They used Magaesteol from March until around August 2016 when they found the neck tumor had doubled in size. At this point the neck tumor is the only tumor she has but is located in a tricky spot to remove. They then started her on Doxil, but in November found that was not working either. They switched to radiation where she did 3 weeks and finished at the end of December 2016. In January 2017 we were told the tumor had shrunk back down and the radiation would continue to work for a few weeks in which they would then do a scan and expect to find nothing. We were very excited. Then at the end of January 2017 my mom showed signs of confusion and brought her into the hospital where they found it had spread to her brain. She had brain surgery to remove the tumor and had cyberknife radiation to that spot of the brain. She also started to take an oral Parp Inhibitor Chemo. On April 11th they found the neck tumor started to enlarge and feared it would start to invade the esophagus/trachea. She then started Keytruda and has had two treatments so far. Unfortunately, this past week we found she now has 5-6 brain tumors. She is now doing whole brain radiation to shrink the tumors and we will continue Keytruda. She has a BRCA mutation as well has Lynch Syndrome. She is only 55 and does not want to give up the fight but is getting increased week do to loss of appetite and nausea.  I am wondering it anyone has had any experience with Keytruda or if anyone who has Lynch Syndrome has found anything that worked particularly well for them. Also I am wondering if anyone has input on going to Mayo Clinic. My mom still has fight in her and I sometimes feel the doctors we are currently seeing may not have the right attitude to help her keep fighting. Also does anyone have any tips about increasing appetite or helping with nausea she has lost quite a lot of weight and we know she needs to get the nutrients in order to beat this. Any advice would be greatly appreciated. 

Sincerely,

A daughter despatate for help

NoTimeForCancer

Tia, I am so sorry to hear

Tia, I am so sorry to hear about what your mother is going through.

"We", and it is 'we' because we are quite the family here, do have some of the women on a variety of treatments.  Lou Ann, who is such an inspiration to us all, is on Keytruda and I am sure she will chime in.  

I think your statement at the end, "still has fight in her and I sometimes feel the doctors we are currently seeing may not have the right attitude to help her keep fighting" is very telling.  YOU are going to have to be your mom's advocate.  If she can't speak, you need to push for her so they help her.  

I know the other wonderful ladies will be along with lots of ideas.  You a clearly a wonderful daughter and your mother is very lucky to have you in her corner.

derMaus

Tumor Assay Testing

I'm so sorry to hear about your mother! Do you know what kind of uterine cancer it was, such as serous or MMMT? Depending on where you are, you may want to consider a tumor assay. This is where they take live tissue from a tumor and test it to see which chemo works the best (chemo sensitivity). It has to be done with a live tumor; it can't be done after the fact from slides in the way that pathology reports are. I live in Southern California and our local one is Rational Therapeutics, but I know there are others across the country. Cost is about $3-4k and not usually covered by insurance, although mine will bill your insurance to see if you can get a reimbursement. 

Nellasing

Welcome Tia,

My heart is breaking for you and your mom!  You surely have been going through it.  I will be praying for you both as you continue doing such an amazing job of advocating for your mom.

I like the others think there are other ladies who can respond to some of the questions better than I myself.  I do have some thoughts about nutrition- I did IV therapy around my treatments and saw a naturopath who specialized in oncology.  I also got accupuncture for neuropathy but also nausea and I feel it helped me.  I don't know if you can get medical marijuana- the edible kind can help with pain and nausea and it can increase the appetite.

I am the exact same age as your mom and I can only imagine how comforting it would be to have a wonderful daughter helping me.  She is in a tough place but there is ALWAYS HOPE.  I hope you have your faith to rely on and we are here to link arms and walk with you- any questions, any topics, to share your hopes and fears- whatever you need.   (((HUGS)))

Lou Ann M

Welcome Tia

No one wants to belong to this group, But you will find this a great group of ladies with much information to share.  Someone almost always has good answers.  My cancer also metastized to a lymph node in my neck amount other places.  That was 3 1/2 years ago.  I have had 5 different types of chemo and am have been on Keytruda for the last 10 months.  I have had two tumors grow quickly and have had a total of 28 radiation treatments to the two areas.  My oncologist was ready to take me off Keytruda, but decided that the radiation might jump start the Keytruda again so I am continuing with it.  It has given me a year that I don't think I would have had so I am happy with it.   I have few side effects.

i am also having a problem eating.  The radiation left me with a very touchy stomach, no appitite, me severe fatigue.  I have been trying to drink Breakfast Easentials once a day because it ha a lot of protein. I was also told of a drink called Premier protein that is supposed to be good.  Milk shakes and ice cream work for me once in awhile.  It is really hard to eat when nothing tastes good.  I have had to go in for IV hydration several times.  Drinking is also hard for me.

Never give up hope.  My last CT scan showed shrinkage and stability.

Hugs and prayers for your mom and you.  Lou Ann

Red Dahlia

I am sorry to hear about all

I am sorry to hear about all your mother is going through.  You asked about the Mayo Clinic.... that is where I received all of my treatment for Stage 3A endometrial cancer.  I have nothing but great things to say about the care I received there. 

Tnowa850

Thank You

Thank you everyone for such quick responses. Found out yesterday that they will be inserting a tube and am hopeful that it will help with her nutrition. Also she is going to be doing inpatient rehab to get a total of three hours of physical therapy a day to build back some muscle and hopefully stimulate an appetite. Medical Marijuana is not legal here, but I am working on getting cannabis oil for her to try. Also I will be calling around to other hospitals to find out if they feel there is more we can do. I have read such great things about Keytruda leading to NED in patients that it works for.  Especially in patients with High Mircosatellite Instability which my mom has. I keep praying that this will be the case for my mom and that we can get her to as many treatments as possible. I continue to stay hopeful that we will find something that will work. Thank you all again. 

Kvdyson

Tia, your mother is very

Tia, your mother is very lucky to have you by her side. I agree with what everyone has already posted. Hang in there and remember to take care of yourself, too. Please keep us posted on how your mother (and you) are doing. Kim