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).
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).
Metastases to the lungs: any suggestions?
Options
Has anybody with metastases to the lungs (so automatically stage 4) had any successful responses with any particular chemo drugs? I know I'm terminal because my surprise ER diagnosis came so late, with lots of spread, including to the lungs and some surrounding lymph nodes. I've had a good abdominal response to my first 3 cycles (Carboplatin, Avastin. and Gem), but the lung metastases have barely budged, so I'm trying to find out if anybody else has had any success at all with this area (as my starting point, I'm just trying to beat the "best Before" dates of various items in my fridge)! I did see one personal story online of a music teacher in the States whose adventurous doctor tried a lung cancer drug "off-label" on her lung spread, and it did work for her, but I haven't yet been able to re-find the story from all my search history of the last 4 months.
0
Comments
-
@TotallySurprised I am saddened to hear this. What is your team saying? Have you looked into any trials that may be available?
How are you feeling in general currently?0 -
I live in NB, so in a small province and my hospital has only 4 oncologists covering all cancers, supported by a few GPs with a bit of oncology training They probably see only about 20 ovarian cancer cases a year, so everybody is very busy; I see the oncologist for about 15 minutes at the start of each chemo cycle and there is virtually no "talk time". As well, the whole Atlantic region has very little access to trials, so basically it is what it is. I've searched a lot of research databases on my own about lung metastases, and they all say the same thing, that this pattern has one of the worst prognoses among the already bad prognoses. I accept what is, but I will still try to track down that single person case I've read about that had a better than expected outcome with the off-label lung cancer drug. For the moment I feel very good most of the time and seem to be tolerating the chemo well, except for wrecked white and red blood cell counts, so I am just focusing on enjoying the time I have with my wonderful husband and affectionate cats. I have just started the 4th cycle of the next 3 I believe they have planned to see if any more cancer will agree to shrink, and I haven't entirely given up hope. I will try to live for as long as I can because I very much enjoy life, but I recognize the likely reality and am at peace with that recognition (despite being prepared to do everything I can to forestall it!
0 -
@TotallySurprised Thank you for sharing and your outlook on your own situation. It is tough to accept what is, carry on and advocate/research for oneself when you are still going through treatment yourself. It is inspiring to read your post and outlook. Thankful your husband is so supportive as well.
I will see if I can come up with any info. Difficult for you with the lack of Oncologists and some of their valuable knowledge
I have faith you will find that article.
Take care0
