Hi, I was diagnosed grade 4 (lung mets) Feb 2007. Had 4 chemo of carbo/taxol, then interval pelvic clearance, and then 2 more chemo. Original ca125 of 6500, after all treatment stayed around 16 for 4 years. Started to move up slowly a year ago to 20, then 27 in November, 33 in March and today 108. Ct scan last October showed new peritoneal met of 12mm, increasing to 16mm in January. As sympton free just observed but as ca125 has increased in 3 months from 33 to 108, I am to have another ct scan, review then start chemo, presumably of the same regime. Having once been given a very poor prognosis and come to terms with it, then been so well for so long, it has been like a 2nd whammy. I do appreciate that I have been so lucky compared to so many of you amazing ladies out there but I would appreciate any experience anyone would be kind enough to share with me that might lift my spirits.
so sorry to hear this news. I have only recently been diagnosed so cant advice but offer hopefully words of encouragement and hope . You have came through this once and had a long time in oc recurrence terms . You can beat this again and hope look forward to a long remission . Wish you well
Love
Ally
Hi Northerngirl
Sorry to hear your news. I also have a dx of Stage 4 and know how hard it is to build up hope with that diagnosis. As Ally says, though, in oc terms almost 5 years is a long remission, and from what I have read, the longer the remission the better the chance of successfully treating the recurrence. I really hope it will all go well for you.
I am sure that you will soon be back in remission. It worked five years ago so should work just as well now. I know it must be a shock to find it back again but you have beaten it into submission once and can again.
When I was first diagnosed you answered some questions I had and held out a hand of friendship when I needed it. I hope I can do the same for you.
I remember our previous blogs and I thank you for your kind words and value your friendship . I know this is silly but I feel like I have let everyone down, I have this guilt that I am once again in this position and the upset to my family especially my lovely husband who is much older than me and not well himself. No logic for this and and as I say I do know how much lucky I have been for so long but I am very down even though I was expecting this.
I can relate to what you say about blaming yourself. When my cancer recurred so soon after my first treatment I thought it was my fault for not trying hard enough. If only I had lost more weight, relaxed more, exercised more, taken a countless amount of supplements.
But I now just get on with it. I know that whatever I do it is not my fault it is just b****y bad luck. I am enjoying myself with my children having experiences that I am sure I would never have done if I didn't have cancer.
It is my birthday in three weeks and I am going to be 50 so I decided to have some fun. My husband is having to work that day so myself and the boys are off to Milton Keynes to go indoor skydiving in the morning and sledging down the artificial ski slope in the afternoon.
I hope those feelings soon pass. You have done wonderfully well to keep well so long and you will again.
i just wanted to say i understand about the feeling like you have let everyone down emotions i was the same.. I felt like id done it to myself and that now everyone had to suffer because of me.. But this is not your fault and you truly do not have anything to feel guilty about.. Cancer is a cruel heartless disease and there is no logic or sense to it at all.. it unfair on everyone that has any kind of cancer... please try not to feel down and guilty (im a fine one to talk) but please try and lift your head and fight like you did five years ago.. I am sure you will beat this once more..
I think sometimes it is harder for us to tell others than deal with the situation ourselves . Feeling guilty etc . Know it is not logical but we cannot help it . I do hope your husband is ok
But you will beat this . Did it before and you can do it again
Sorry the b***** has started to play up again. Know what you mean about feeling guilty though- my husband was great last year but has recently had to have an angioplasty[ two stents put in his arteries] and I feel partly to blame with the stress of last year, which realistically probably had nothing to do with it as I think his problem has been building up for years.
I do hope your husband will get better.
Love and prayers
Anne
Hi Northern Girl
I am also a stage 4 'girl'. Almost 2 years into remission. I also have been told the longer the remission the easier it is to treat if it reoccurs. I am sending lots of hugs and my special angels (if you believe in such things!). You've done it once you can do it again.
You asked us to lift your spirits, so I shall focus on the positives:
Your tumor is growing slowly and even now is less than the size of a 1p.
You responded well to Carbo/Taxol so likely will again.
You had a 4 year remission before, so once the nasty blighter is knocked into touch again, it is likely you will get another long remission.
I can certainly empathise with your situation as I had a 5 year remission before my 1st recurrence and even the doctors were disappointed as we all thought that I had beaten it. Its so difficult to come to terms with the fact it is back because you think you will never overcome it, but you can. I had another 4 years remission after 2nd recurrence, so again, thought I had beaten it only to have my hopes dashed again with a 3rd recurrence.
I have had to move my goal posts somewhat, and now instead of hoping to be free of this disease, I hope to stay fit, healthy and symptom free for as long a period as possible. It has been 13 years since my initial diagnosis, so this little wotsit is definitely not an immediate death sentance.
Hi there, I can appreciate how you must be feeling. I am about to start gem/carbo for 2nd line cancer. Mine has shown up in the peritonium. Was supposed to have op for Hartmans reversal but they scuppered it after opening me up! Keeping positive and having 2nd opinion, but I am sure I will just go with the flow and have the chemo regime and fingers crossed that it does the trick? Great that you had 4 years free of it - bugger it has returned but keep positive. Mind strength is so important!! Good luck.
I know it 's awful when it comes back, in fact for me, and my family it felt worse than the original cancer diagnosis, so I can empathise with how you feel. However, life goes on. Family milestones, holidays ,whatever is good in your life, will carry on.
As you had such a long remission, the 2nd line is likely to work very well. Once you get started and know its working ,it will seem easier than it does now.
Wishing you another lengthy remission,
Juliex
Hi Julie...
I don't think you have to apologise for being well for so long. Everyone's journey is different. It's brilliant that you've responded as you have. I know you'll be anxious but very often when the disease is advanced, symptoms begin to reappear in the long run. In my own experience, I know that it will come back. Mine is slower growing it seems than yours, but it is active and, like you, my oncologist said to wait for symptoms to appear. Having mine in that state again is not to me a second blow because after the first blow hit, I knew what to expect and I don't want to be in a position where I feel I'm fighting all the time. I know it's there and the way I look at it at the moment, I live with it more than it lives with me. You had a very good first response and it's a long time since you took the drug. I know that you'll have a good chance of the drugs being effective in beating it all back. There are new drugs too and lots of women are being help as I type by these. There is no really effective drug for my type of the disease because my cell type is a relatively rare one. I can totally understand your anxieties and I send you my heartfelt hugs.
Hi Northen Girl,
I am so sorry you have a recurrence.. it is good that you had a long remission though as the chemo is likely to be successful again.. I had a recurrence after two and a half years..and then had palliative chemo carb/ taxol again.. even though the oncologist didn't think I would go in remission..I am in remission.. so there is a lot of hope as you can see by all the other stories on here.. I am thinking of you and send you love and best wishes x G x
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CA125 increasing, no symptoms, 7 years remission
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