Maintenance Therapy for Who?

Luci22

Hello everyone, wishing you a healthy 2019 and many great days to come.
I haven't posted in a while but I am sitting around and a question just popped into my head: "Why isn't my mom getting any maintenance therapy?" so I jumped on here to post and ask.

I ask this because I have been reading various stories of women with similar ovarian cancer diagnoses and treatments (successful surgery and chemo), and these women often tell about the maintenance drugs that they are on after initial cancer treatment (such as Avastin, or Lynparza).  The oncologist had told us that she did very well, it was all removed.  We assumed she would go on maintenance drugs to continue this positive outcome but he didn't jump on it and suggested we wait to use this [e.x. Avastin] IF it's needed down the road.  Has anyone had a similar suggestion from their onc?  Would anyone care to share if they are on maintenance (and what) or if just on the wait and see approach?   I know that the brca population tend to get Lynparza after firstline, which isn't happening for the non-brca population, but it still seems to vary for the different stories I read so am wondering and learning. 
Thanks.  

Flowergirl

Hello @Luci22 - Happy New Year!
Yes, so hard to figure it all out as it - this disease and treatment - it is so individual - many variables.
It helps to have those questions ready and ask the DR team for all the alternatives and options available.

Ingrid_Canon

Hi @Luci22 Happy New Year to you as well.  As Flowergirl suggested the approach for each individual is very specific to their circumstances.  I am a Stage 1 mucinous survivor and I only had surgery.  No adjuvant therapy was required on my part as the ONC was confident that they got 'it' all out.  Also I have been noting in some of my research that not all ovarian cancers respond the same way to chemo drugs.  With that in mind; the stage, type and age of patient are all taken into consideration.  For myself the current maintenance I am on is follow-up scans and doctors visits.  I am almost 18 months from diagnosis and going strong.  Hope this helps to address your query.  Wishing you and your mom well and good health ☺.

Luci22

Thanks for the responses.  It makes me wonder if she's getting the best follow up/ maintenance that she should. She gets visits every 4 months, checking CA125 but no scans. She had stage 3b high grade and responded very well to chemo and surgery took it all out.  I'll try to ask the DR again at the next follow up.  The simple go-to answer even from doctors seems to be that everyone is individual but that doesn't seem to be enough for me.  
Also, is there a website or resource that has information rating the Ontario cancer care? (such as best clinics and oncologists)

Flowergirl

Hello @Luci22 - it seems common to have that wonder about followups and monitoring. Again, each situation,  and treatment plan varies just as the individual impacted by it.

I found it really hard to wrap my mind around it all at first. It was reassuring for me to discuss the followup process and treatment plans with the NP or DR  and also have discussions with psychosocial support providers. 

Also, it helped to refer to the OCC resource booklet "By Your Side" - you can order from the main website above and  from there, I watched the recorded web series "Coping with Fear of Recurrence "  and the "Treatment / Living with Recurrence webinars"... they offer great information and can help you pose questions to your medical team. Wishing you and your mom all the best for sure.

 Not certain if this will help you or if you have it already
https://www.cancercareontario.ca/en/pathway-maps/ovarian-cancer
You can also ask if they have a Cancer Navigator team to help you with the process.

Hope that is of assistance for you and wishing you well.

Trinity

Hi Lucci22, just read your thread and concern. No, you are not alone. My Mum has had the same experience, but this is actually a good sign. Oncology won’t interfere if all is well. If your Mom is checked every 4-5 months and CA 125 marker is normal, they leave well enough alone. She should continue to enjoy life, keep track of any symptoms and go for check ups. If there is nothing to be concered about, she’s doing well. Don’t take it personally- they didn’t forget her- they just have to care for those in need. So, bravo to your Mom- she’S in recovery. 🙂

adfab

Hi @Luci22. I had the same concerns after my frontline chemo and wanted to be put on Avastin for maintenance after I was done. I was NED (no evidence of disease), stage 3C epithelial and non BRCA1/2. The idea of just “waiting” for a reoccurrence was hard to handle (especially at 80% chance of reoccurrence). However, my understanding from Onc was that frontline maintenance is not covered (I’m in Ontario) by OHIP for non BRCA1/2 and only offered for maintenance after second line chemo. Unfortunately, I recently reoccurred and am in second line chemo now and Avastin is now in discussions. Also if your NED, maintenance drugs and trial drugs tend to be offered later. This is my experience thus far but each treatment is unique to prognosis and response.