Insight on Recurrence under 6 months - please share your experience with me

Hi

New to the site as of last week and you ladies have been helpful with my previous questions. I would like anyone's story that they can share re: recurring within 6 months!! I'm trying very hard to stay off google because it is not healthy since I'm not a doctor and we each write our own story. With that being said, can anyone share their story on recurring early after doing incredible on first line. Some days I do well and other days my head is full of craziness. Since this is all still new to me, I'm seeking personal experience from my teal sisters. Many thanks!!! Nancy

23 Replies

oldestnewest
  • 4c hi grade here. i did reccur after a six months hiatus. am currently in the midst of a second round of chemo...every month for six months. have pain, some peripheral edema, profound fatigue. however am trying to remain hopeful. i do find that i sleep much more, have no energy. but i can and do eat. i become discouraged at times, but am not prepared to give up. although i can see where that might come. and have every respect for those who do not choose to continue what is a very uneven struggle after all.

  • Hi Nancy, I'm 3c, high grade, and my cancer keeps coming back within six months. I'm currently on my third lot of chemo, and have been allergic in the past, to paclitaxel and caelyx, so not very lucky! I'm tired, and don't do a lot, but medication keeps sickness and pain at bay, so I actually feel fine. It's not great, and the prognosis isn't wonderful, I suppose, but like you, I stay away from Google, and just enjoy myself as much as possible! Take care, have a big hug, Eileen

  • Hello Nancy, welcome to the merry go round of OC . That's how I manage my life some bad days but lots of good times. Diagnosed Aug 2012 high grade serous 3 OC, surgery then 6rounds chemo. Recurrence within 6 months further treatment . Had 16 months remission after 3rd round now on 4th round of carbo/paclitaxel so lost hair for the2nd time. This site and the help of all the lovely ladies and gentlemen has been fantastic , day by day is the best way to live on the good days I do what ever I want, on the not so good days keep taking the tabs. watch tv and try to have a good laugh about something. I count my blessings, I have a wonderful husband and family and friends . I think I have learnt to change the way I think so this has made me feel better. Lots of love Bridie xx

  • Well Nancy we can all relate to what you are saying, we all have good days mentally and physically but sometimes we go the other way. Finishing treatment you feel so much out of the routine of the past six months. I would suggest that you find a Macmillan Centre or Cancer Support Group with a counsellor who will guide you to a better focus. Mindfulness is also good you learn to put the negative thoughts away for longer. We are all different and we all react differently to treatments, This current treatment may put you back into remission for a long period

  • Thank you. I actually have a two hour session with my therapist tomorrow!! I find it very helpful opening up to him!!! I appreciate your response and you are correct with what you are saying. 😉

  • Hi Nancy, I'm in a similar situation to you. Felt great after completing IV & IP Cisplatin & Taxol. Declared to be in remission but "something" on CT - possibly scar tissue had me worried. I'm now in recurrence barely 4 months after finishing frontline. Devastated and discouraged doesn't even begin to describe it. Like everyone else, I was hoping to beat the odds: well known cancer center, great surgeon, aggressive chemo. Now I'm considered platinum resistant and just started Doxil and Avastin. I'm also in the US.

    As I process this I have a lot of anger - at the pain this is causing my family, at the lack of funding and awareness of OC, at how OC seems to be the last thing doctors suspect when confronted with these vague symptoms. Anyway I digress...

    I'm sending very best wishes for success with the next treatment option

    D

  • Where are you in the states? I'm in New Jersey!!! I wish you the best of luck too!!! Stay in touch and BIG hugs your way. 😘😘

  • Hi Nancy.....I'm in the US, too. I'm in southern NH, so I have the benefit of Massachusetts General near by. Also, the oncology center in our smaller hospital here in NH is affiliated with Mass General. I was diagnosed in Sept.2014 with stage 4a. I've been very lucky......after my surgery and 18 weeks of carbo/taxol, I have been in remission for 20 months . My ca125 is starting to rise now, so they are expecting that I'll have a recurrence. This disease is so unpredictable. I try to enjoy each day with the knowledge that I'll do whatever I can to beat the beast back when I have to. I feel it's all in God's hands, so I try not to waste my time worrying.

    I found this site, and I like it more than the site I found in the US. The ladies here are so lovely. I know you'll find it beneficial, and you'll be able to share some of your experiences and help some of us out as well.

    I'm thinking of you and your family. Best to all of you......JudyV

  • Hi Judy. I'm in central NJ. I go to MD Anderson (part of MD Anderson Houston TX) in Canden NJ. I was diagnosed Feb of this year and did great first line but recurred within 6 months so unsure if resistant from Cisplatin or taxol. Changing up to Doxil starting Monday. I'm Fallopian tube serous IIIC. They said this happens and we need to find a chemo that works better for you. The goal is to kill the cells or at least keep it controlled. Hence is why it's called chronic. Yes I like this site too. All have been so nice Nd helpful. I'm learning as I go and appreciating and respecting life so much more. We are all guilty of taking life for granted. Unfortunately it takes something tragic for us to all realize how precious life really is whether it is cancer an accident another disease whatever the case may be but at the end of the day the width of our life matters and that is why I try to enjoy things so much more. Wishing you the best and look forward to hearing from you. XO

  • Hi Nancy......My cancer started in the fallopian tube, too. Damn tube!

    Anyway, as so many of these lovely ladies have already told you, this disease is treated as chronic these days. With every day/week/month that goes by, they discover new treatments. So, my advise would be to live every day with as much joy and gratitude for what you do have. That's what I learned such a long time ago.....long before oc.

    Who are the beautiful babies with you in the photo? And, the three lovely ladies in the larger photo? I'm sending hugs from rainy NH down to NJ! Best to you and your family. I'm thinking of you, and praying for much success with your second round of chemo.......JudyV

  • Hi Judy. The beautiful babies are my grandbabies and the three beauties are my daughters. Thank you for all your kind words!!! We had another warm day in Jersey but that is suppose to change tonight. Reality check of cooler air!!! I hope we stay in touch and continue to support each other and the other wonderful ladies on this sight. XO

  • You've got it. Will be thinking of you as you start your next treatment. Positive thoughts coming your way!

  • I was in NJ and just moved to Virginia. I first had my treatment at Englewood Hospital. Where are you getting treated? If you don't mind we can chat to support each other.

  • Those beautiful babies you see with me are my grand kids. They live in VA too. My son in law is VA STATE TROOPER. I live in Jackson. Right and I mean right near Six Flags. We hear the coasters swooshing. LOL. My treatment is at MD ANDERSON in CAMDEN. They are the same MD based out of Houston TX. WHAT PART OF VA? My daughter is near Manassas.

  • Hi Nancy, I'm in the Washington DC area. Will definitely stay in touch. Sending big hugs to you also!

  • That is awesome!!! My daughter is near Manassas. Only 35 min to DC no traffic BUT there's always traffic. That Rt 66 is such a joy. LOL

  • I have Peritaneal Carcinomatosis . Treatment given is the same as OC. I relapsed 10 months in. I am stable again.I have a scan in Dec.That would make this time 9 months..Hoping everything is clear.If it's back again I will be devastated but I will deal with it..It's the loss of hair that is the hardest to go through..but I have awesome wigs to throw back on. Will do some travelling if all is clear.I exercise and stay as positive as I can..I to stay away from the Internet (now) . New drugs coming out all the time.So as long as there is treatment I'm good and live my life and stay as active as I can..Best wishes....Lynn in Canada

  • I feel so much for you... I have had all the first treatments ie 3 chemo then debulking then more chemo and was fine for 10 weeks. CA125 came down to 15 from 490. Then gradual increase to 30, then 50, then 90, then 150 now 190. I urge you to stay positive as I am trying my best to be as we have to face an uncertain future with this condition. Best wishes xxx

  • Yes I hear you. Positivity is key. I'm reading a book by Dr Bernie Siegel called Love Medicine and Miracles. Definitely recommend. Let us know how you do. BIG HUGS!!!!

  • Dear Heart... I would welcome a miracle!!! I am having another CT scan in about 2 weeks but wonder what this is all about. Do I need further chemotherapy or are they ( medical team) wanting me to be symptomatic before they step in? Which is the best option - demand aggressive treatment on a rising CA`125 or not?? Any advice??

    Keep smilingXXX

  • What is your current CA125 and where has your count been? The minute mine went out of range we did a cat scan showing two small markers in my left pelvis region. Starting new regiment tomorrow.

  • Hi there ....my ca125 was 490 on diagnosis then after 6 chemos went down to 12. Been rising ever since from 12 to 36, then 55, then 91, 148 now 194. Oncologist keeps asking if I feel well (asymptomatic) which I am. But I worry that I should be having repeat chemo not simply avastin. What's your view?

    best wishes

  • Hi katiekay8. The minute mine went out of range I was in for a CT scan. When was your last scan?? Once I had my scan and they saw i recurred, we set up a new game plan. I started Doxil this week. So far so good. Do you have a plan in place ?

You may also like...