Hello 2018! anyone with stage 3c low grade serous carcinoma

[LDBottoms]

Hi my name is Lisa. I was diagnosed with stage 3c low grade serous carcinoma in 2015. Since then had my debunking surgery and 6 rounds of chemo my cancer returned with in three months. I have been on a study and different chemo .the last one was doxile and avastin . Well the doxil was to hard on my kidneys so I have taken 21 rounds of avastin. Well I started having horrible shoulder pain and losing use of my arms so they took me of putting me on letrozole. My Ca 125 jumped from 99.9 to 220 in a month. Yes I know we can't base everything of the test but I am having more pain also. They told me my cat scan showed my tumor pressing against my colon and surgery isn't an option. So I go to the doctor Jan. 8th to have them change my medicine. Any one have my kind of cancer? How long have you had it and how are you doing? I wish all the group a wonderful 2018! If we don't there are really amazing people who will help you through. Thanx Lisa

[CharlotteSo_UK]

Hi Lisa,

My mum was diagnosed with LGSOC in November 2010, stage 3. She had debulking, followed by taxol, carboplatin and then Caelyx before our local hospital decided they weren't quite sure why she wasn't following a 'normal' pattern and referred mum to the Marsden. Been there ever since, still stage 3. Letrozole and tamoxifen has kept it 'stable' all this time but there has been some growth. The tumour has recently been profiled so we now know it's a RAS mutation and the aim is now to try a targeted trial. As with these things, there are criteria to be met and they are not sure whether mum meets that criteria as yet.

So I guess what I'm saying is, this journey has been sometimes hard for Mum, with recurrent infections and some pain, but she is still active and living her life the way she wants to. She had a wobble recently so I sat down with all the photos from her holidays and adventures over the last few years to show her just what she has done despite this horrible disease.

Can I ask what hospital you are at?

Xx

[LDBottoms in reply to CharlotteSo_UK]

I am going to The Stephenson Cancer Center in Oklahoma city now. I am gonna get a second opinion at Cancer Treatments of America also in Oklahoma city. Thank you for your response I wish your mum lots of luck!

[CharlotteSo_UK in reply to LDBottoms]

All the best to you! X

[SuzanneKau in reply to LDBottoms]

Hi Lisa, i’m LG PPC IIIC. I went to Dr. Gershenson (world renowned expert in low grade ovarian/peritoneal) at MD Anderson for my second opinion. He’s great! He has a trial going for recurring low grade. You might want to check him out. Trial participation would be free which is always a plus!

[LDBottoms in reply to SuzanneKau]

I wish I could I am having problems with low platelets right now. They tell me I will not qualify for any drug trials unless they get over a 100. Mine are staying around 70. They are gonna send me to a hematologist to see if they can figure out how to get them up. Welcome to this group their are some wonderful ladies on here. They are always willing to help. I just joined about a month ago, but it's very helpful.

[SuzanneKau in reply to LDBottoms]

Thanks! I’ll be rooting for those platelets!

[Orsolini in reply to CharlotteSo_UK]

Hi Charlotte - very interesting as I was diagnosed a year before you Mum, same type. Pls do post if she goes on a trial. I am on a trial in Paris as I live in France. Nicola x

[Orsolini]

I am low grade, diagnosed in Jan 2009, chemo doesn’t work for me, i’m On a trial in Paris. Mostly living normally. Nicola

[LDBottoms in reply to Orsolini]

Hello Nicola, you have been fighting this for quite a long time! Living in Paris must be amazing! Glad you can live almost normal. What are you on in your trial? Thanks for responding looking for some friends on here. God Bless you! I hope the trial works for you. Lisa xx

[Babbey]

Hi there

I too low cease stage 3c, living in Canada. I was diagnosed last year , finished some chemo and now on letrozole. I go in for blood end jan. Fingers crossed everything is stable. Hugs.

[LDBottoms in reply to Babbey]

I wish you good luck on your results! Please keep us posted, hope it works for you. God Bless, Lisa xx

[Lizchips]

Lisa hi, my name is Liz, if they can't operate you might see if it is possible to have IP, intraperitoneal chemotherapy. To shrink tumor or get rid of. It's used a lot in the US. Might be an idea for you. Best wishes, Liz

[LDBottoms in reply to Lizchips]

Thank you I will ask my doctor tomorrow! That's a great idea. I appreciate it so much. Best wishes to you Liz I will keep you posted. Love Lisa xx

[Crickette]

I was diagnosed with stage 4 Peritoneal cancer Mar 11, 2006. I decided not to do the debulking surgery. I did decide to try doing chemo. I had 6 rounds of chemo every three weeks. I got stronger with each session. I have been on Avastin since, and will be...every three weeks for, forever. Until something changes. I have had a few problems with Avastin. My blood pressure went up and I started having problems with my finger nails...hair...etc. Really very minor things, concerning the alternative.

Oh I so hope all goes well for you. It is scary for sure...know you are not alone.

[Sherrym]

Diagnosed 3C June 2015. Ovaries, womb, as much of peritoneum as poss, cervix, omentum all removed but it was speckled everywhere including bowel.

Started on re-purposed drugs from Care Oncology in London within 3 weeks of surgery.

6 chemos & 5 Avastin.

Doing very well, though will be on re-purposed drugs for life. These drugs, metformin, statin, antibiotic & worming tablet dosages have been tweaked over the years but I am now v comfortable with them.

I hate pushing this if it’s annoying any of you, but my feeling was, & still is, what did I have to lose?

My CA125 is 9, lower than it was before I was sick. As a BRCA1, I have been tested for over 20years & even hit 17 back in 2002

[TinaB1 in reply to Sherrym]

I'm sorry for replying so late, but i wondered what the worming tablets are for? Xx

[Sherrym in reply to TinaB1]

Hmmmm..... I think it’s the ‘combination dynamic’ !!!??? Sort of working in synergy to block the pathways C creates to metastasise-that’s the way I understand it anyhow.

Whether it prevents or just delays is unknown.

Does the above make sense? Best you call COC & ask maybe?

[TinaB1 in reply to Sherrym]

Thanks for that.

I found this article from The Telegraph very interesting. It’s about the use of the drugs you mention.

I have psoriasis and my dermatologist recommended Acetretin, a Vitamin A derivative. I can’t take other regular psoriasis drugs because they generally lower the immune system. He says it may help with my cancer. It’s more toxic than the drugs used by the Care Oncology Clinic so I need three monthly blood tests. I’m also on statins.

How are you doing yourself on your regime?

Xx

[Sherrym in reply to TinaB1]

So far so good. U need to tell COC of other medications u are on, I am sure they can advise time of day to take each so as not to interfere with psoriasis meds.

Good luck

[ScardyCat40]

I was diagnosed Stage IV in 2011. Had the surgery, three lines of chemo, letrozole and currently on the LOGS trial. If you read my posts you can find more info

[SuzanneKau]

Diagnosed low grade IIIC PPC 1/17. (Had total hysterectomy including ovaries in 1990.). Debaulking and removal of omen gum 1/27/17. 6 rounds carboplatin and taxotere. Currently on letrozole with no side effects except hot flashes 😡. CT Scan 3 months after chemo ended was good. CA125 remains very low. So far, so good. Glad to see posts above. Very encouraging!

[SuzanneKau in reply to SuzanneKau]

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