Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?

OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).

Maintenance treatments

Just curious to know what maintenance treatments or drugs you are on? And if it was reliant upon BRCA mutation? Trial basis? Many thanks

Comments

  • AndreaB
    edited November 2017
    I am now on Olaparib   started Nov 1.  I am a BR CA 1 .  I had my 3rd surgery and 3rd go round with chemo hoping this keeps it away
  • Hi @gail13081968.  Welcome to OVdialogue and thanks for posting this new discussion.   Are there specific drugs that your doctor is recommending for you?

    There are a few women that may be on different drugs and/or BRCA positive so I am @mentioning them here to see if they have anything they might like to share with you.... @goodday @zephyr @vivig @meganG @birdee @AmandaRoseRebs @Bishop21 @NighthawkSharon @Courtenay @PrincessFiona @CurlyHair


  • I've been on olaparib since March 2016. Although there are some side effects, it still much easier than chemo. 
  • I'm not on any yet. I've heard of Avastin and was going to mention to my Oncologist. I'm not BRCA positive...so I know that rules me out for some of the drugs...
  • Jackie
    Jackie Peer Support Vol

    I was diagnosed with the endometroid type of ovarian cancer in November 2011. My oncologists diagnosed me as stage IIIC endometrial adenocarcinoma of the uterus and stage IC endometroid adenocarcinoma of the ovary. Following active treatment, I was prescribed a pill. The medication is called Megace (the generic form that I take is actually known as Megestrol) and I’ve been taking it for five years now.

  • Is anyone taking Metformin and Simvastatin to prevent cancer recurrence? Metformin is a known diabetes drug, and Simvastatin is for high cholesterol. I've been taking these for about 3 months. One of the doctors on my team says that by taking these, I reduce by 50% the chances of cancer recurrence.  I don't think that's true.  The big double blind study has not been done. But for now, I'll continue taking these, in case they are helping. 
  • Hello @Elsie13 - thank you for sharing about this. I'm curious - did they provide you with some studies or medical information to support why they have prescribed these? There seems to be some investigations into other known drugs to see if they are effective on diseases that normally those drugs wouldn't be prescribed for. 
  • @Flowergirl, No. What happened was that in Sept,'17 my family doctor discovered that my cholesterol was rather high:
    4.7 I think for the bad cholesterol. So I thought the cancer clinic could arrange for an appointment with the nutritionist. But instead they referred me to an endocrinologist.  I thought it was a big mix-up, why would I see an endocrinologist?  So the endocrinologist prescribed those 2 drugs for me. I suppose the Simvastatin makes sense, for cholesterol problems. 
           I asked the endocrinologist, is there an article I can read that will explain all this, and he said to just google metformin for cancer. So then all I found was that the big double blind study to see if these drugs prevent cancer has never been done, so someone in my situation is taking the meds OFF LABEL!
  • hi @Elsie13 and @Flowergirl. I wanted to chime in because my oncologist is also recommending the use of metformin during maintenance. I spoke to an endocrinologist yesterday who told me that he is treating over 200 OC survivor who are not diabetic with metformin. He maintains that it’s effects on glucose metabolism and insulin resistance reduce inflammation, a root cause of cancer. I wonder if others on this site are using metformin or have information they could share. 
  • I am at the end of chemo and am starting the maintenance phase In 3 weeks. I was diagnosed with stage 3c high grade serous ovarian cancer in June 202. I am on a clinical trial in Montreal at the Royal Victoria hospital. The trial is called FIRST. Through it I will get Niraparib in maintenance and I have been getting either placebo or immunotherapy since cycle 2
    of chemo. This will continue every six weeks during maintenance. My oncologist is also recommending metformin during maintenance, which I am considering. 
  • Thanks, @nadiaC .  Very interesting.  My endocrinologist said that although the big double blind drug study hasn't been done, a large number of small studies show that metformin and simvastatin help to keep the cancer from returning. 
  • Hi @Elsie13. Since your post was from 2 years ago I’m curious to know if you took these medications and if yes, how you tolerated them. I hear metformin can be tough on the GI system. 
  • @nadiaC  I've been taking the two meds for two years. I have a bit of diarrhea  now and then, but that could be long term effects from hysterectomy, chemo and radiation??  I take one simvastatin per day = 10mg and for the metformin, they are 500mg tabs and I take half with breakfast and half with supper.  I will likely keep taking these meds. 
  • Thanks @Elsie13! Very helpful. 
  • I go to the Victoria Glen Site also - we probably have the same doctors! @nadiaC

  • I’m thrilled to ‘meet’ another Teal warrior in Montreal. Would love to connect on the phone one day if you’re interested. @Elsie13