Any Maintenance Available after Frontline Chemo

collegal

Does anyone know of a maintenance treatment after frontline Chemo.  I am Stage 1C, High Grade Serous Ovarian Cancer, and am also BRCA 1 Positive.   Ive asked my Oncologist about Lynparza, but apparently it's only prescribed after a recurrence.   Being that my cancer is Grade 3 (aggressive), I don't want to just sit around and wait for a recurrence that could spread quickly.  

Are there any options after Frontline, other than CA125 and imaging?  

beachgirl

Hi there - it's Beach girl.   That is a great question.  I am almost 3 years post chemo (Jan 2020) NED I was a stage 1C, High Grade Serous Carcinoma grade 3 as well.  Surgery and then 6 rounds of Chemo and Carboplatin.  If anyone knows the answer to this question please share.  If you ever want to chat by phone let me know … I hope your felling well - I will keep you in my prayers as I understand your concerns.      

Flowergirl

Hello @collegal and @beachgirl -on this topic,  it really just depends. There are so many variables for everyone's situation and condition, pre and post treatment. Your DR / medical team should be able to have those discussions with you and present options based on what may be available and best for you. Ask about clinical trials also and know that things are always changing. 

collegal

@beachgirl  and @Flowergirl

I seen my Oncologist this past week and proposed this question.  I specifically asked about doing Parb inhibitors after frontline for Stage 1C.  He said there is no recommended maintenance after Stage 1C, after first frontline treatment, but he was going to send out feelers to several of his Canadian contacts to see if they agreed.  He said there is no research to show that the newest Parbs (make breakthrough progress in advanced disease) are doing anything prevent a first recurrence.  He said medicines like Lynparza are specified for use in Stages 3 and 4 only.  

At this point, monitoring my CA-125, and imagining are the best followup maintenance going forwards to me it seems.  I will definable let you ladies know if I received any further information once I hear back from him.  

beachgirl

Hi Collegal, I was just reading your post and hope that you are doing well.  I started taking CBT therapy Mindfulness and it does help with the (anxiety that one has with this disease).  I just wanted to see if this is something you may want to talk to your family Dr about - it has helped me I say JUST BREATHE! it will relax you mind, body and soul.  Meditation is wonderful. Stay Well.

turtles2

Hi beachgirl,  I am very interested in this CBT therapy Mindfulness.  Have you been doing it long?  Do you have any idea how I find a center here in Edmonton Alberta?
Thanks so much and take good care.

Flowergirl

Hello @collegal - hope you are feeling well and have been able to get some answers. 
There seem to be so many promising changes in the works for treatments and new protocols coming in for this disease.

Flowergirl

Hello @beachgirl - Yes, I agree... it helps to create a sense of calm

Flowergirl

Hello @turtles2... hoping your Cancer Centre will be able to direct you to the support services you need.
You can also try some online services - https://cancerchat.desouzainstitute.com/ 
The offerings change depending on their schedule / availability.
Sometimes, depending on your employer or insurance services, you may also be able to access that way.
Good luck and let us know what you discover. 

collegal

Hi @Flowergirl! I am doing well thank you for asking. I finished my Frontline chemo treatments in September and although I am struggling with some joint and muscle pain, I’m fighting my way back to health one day at a time. We think the chemo may have started a fibromyalgia or arthritis condition, but I am determined to get back to my old self again. 

I contacted my Oncologist, and Ovarian Cancer Canada to see about a PARB maintenance like Lymparza, but it is not indicated for treatment after stage 1c,  front line. The drug company advised them it is for advanced cancer,  stages three or four. My Dr said that’s a good thing, because we can keep it in our “back pocket‘ should a recurrence ever happen. For now my maintenance is CA 125 blood test and  CT at my 6 month mark.  

Flowergirl

Good to hear you are doing well @collegal

danidelbiondo

Hi Collegal. After front line chemo look into maintenance therapy with Avastin. I've also heard of something called Parp. Perhaps by now you already found something, but just in case...

danidelbiondo

Hi Collegal, I have advanced HGSOC and started on Avastin 21 weeks ago. I'm thinking at stage 1 it may not be available to you. Happy to hear you are feeling stronger.

Bluebird

Hi @turtles2..this is late into the conversation...but...you can contact the spiritual and Psycology centre that's part of the cross cancer institute...they have group therapy sessions for mindfulness...it might be on hold because of covid..but they even have drop in sessions as well i believe under normal circumstances...as well I think Wellspring centre has mindfulness programs..all of the programs are free to cancer patients.  

angel27

DeSouza has a lot of great programmes. I did one for insomnia, art therapy and one esp for OV survivors