I'm a bit concerned about the latest reports of my mom's tests. She's a stage 3 CA ovary patient. She got treated 3 years back and it again recurred and this time on colon. She's gone through the treatment and currently on avastin drug . All reports are normal .. her CA 125 is back to 6.5. but her CT scan showed some lymph node inflammation. Doctors have kept her under observation for 2 months and would see it's behaviour. Should we also wait or should we get a second opinion ? Has anyone over here went through same thing ?
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I can sympathise, I have about 5 lymph nodes showing as inflamed on my scans. The first time was 2 years ago ... although everyone expected recurrence it didn’t happen. The worst thing is not knowing if you can plan forward or whether to prepare for more treatment. I would suggest that you do give it a little time before making any decisions xx
Hi there. I don't think you need a 2nd opinion at this stage. Sounds as if your Mum is being monitored. Also, 6.5 is a very good number for her CA125. Many of us would love a number that low. I am 3c, diagnosed 8.5 years ago. My OC made itself known to me initially with swollen lymph nodes in my groin and it was the same for my recurrence. If you know where the swollen lymph nodes are, they may be in a place that she can monitor them herself.
I have been on avastin for 6 years and it's worked very well for me. It is capable of reversing new growths if they are tiny and not growing aggressively. Best wishes. Pauline.
Hi Pauline, can you please tell us the dose of avastin you are getting from last 6 years and good to know the 8.5 years figure.. wish you all luck and many more healthy years to come in your life.
Hi Tanvi. Sorry for the delay in replying. I sent an email to my onc's secretary to ask her to have a look at my file & let me know my Avastin dose, but haven't had a reply. Another doctor had typed on a letter to me a while back that my dose is 150mg per 3 weeks. I don't know how he knows this as he's not from the hospital I attend. Maybe it's available to medical folk on the internet. Anyway, I can't guarantee it's correct but it's the best I can do. Best wishes. Pauline.
Back again Tanvi. I asked the chemo nurses at the hospital to have a look at my file. They tell me that my Avastin dose is 765mg. This would depend on my weight I'm certain. That hovers around 52kg - 52.5kg. My infusions are 3-weekly. Must say, I'm baffled by the other Doc saying my dose is 150mg per 3 weeks. Sorry for the mixed messages. Pauline.
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PS Tanvi. I became curious & Googled it. The Avastin dose is calculated at 15mg per 1kg body weight. So for me : 15mg multiplied by 52 (kg) = 780mg. So now we both know! Pauline.
Hi Pauline , I currently hve 3 lymph nodes enlarged they think its recurrence, had a CT scan. now due for a PET scan to confirm. Diagnosed with serous 3C OC sep 18, had 3 rounds of chemo carbo and taxol and then radical debulking surgery, speen, omentum , gall bladder and lymph nodes taken aaway, plus some lower bowel, hence stoma. May i ask you did you have surgery when you has recurrence and did you have chemo again. My enlarged lymph nodes are near the back but the surgery said he is confident he can take them out, I am not braca1/2.
Hi Win. I had surgery initially, on diagnosis, then 3 months of chemo, then another op, then another 3 months of chemo. The surgeon listed a lot of my 'bits' that he would remove but he didn't remove all the extras. Cancer returned 18 months later. I was told then that it was now inoperable but not untreatable. So it seems no further surgery for me. But for the recurrence I had carbo/caelyx. Caelyx I found to be a difficult drug, side-effect wise and so my onc gave me a 10% reduction after the 2nd infusion. It's a little slow to act sometimes but is usually very effective. Good luck with your next surgery & probably chemo to follow. Pauline.
Hi Pauline, thank you so much for your reply, I really appreciate it. I'm not very good at putting my feelings down in words, but I just want to say that teal sisters like you instill me with so much inspiration and motivation, I dreaded the thought of recurrence, but always knew/know that it is likely to come back, and I can't fall apart at the first hurdle, just want to kick this beast into touch. Just going through so many emotions and dread at the moment.... The bowel surgeon said that he will fix my hernia at the same time I will have the lymph nodes taken out - he said its very likely that it is recurrence and if it has I'm up fot the fight - just wait and see what the PET scan reveals. My oncologist said that it would be carbo/caelyx - 6 cycles, one every 4 weeks. I will know more in a few weeks after my scan, once again thanks for your reply and I wish you evey luck with your treatment going forward. June (UK) XX
Hi again June. Just one more thing I wanted to say. If your surgeon uses the scar he left previously to get access this time, there is less pain after, as the scar tissue lacks nerve endings that were there in the first place. I only know this as when my 2nd debulking op was done, the surgeon also made an incision about 10cm (4") long to take a kind of port that was popular at the time. A nurse asked me when recovering how the pain was & I told her that strangely the smaller incision for the port was more painful than the "boob to pube". She then explained why.
I think you have the right spirit to get thru this splendidly. The bugger's got into your body but don't let it get into your head. You need some time to feel sorry for yourself but then you have to get tough with yourself. Never be a victim. I know you can do this. Best wishes. Pauline.
Pauline, thank you for yourlovely kind and inspitational words. I have toughened up the past few days, done all the crying i'm going to do, I'm done with that! You are so right, I'm not going to let this beast get the better of me, I am still going out and enjoying my life. You did this and I can do this too, your kind words have really picked me up and I'm so glad that I found you on here, thank you so very much. xx
Hi Pauline just thought i'd let you know that they have decided not to start me on any treatment yet or operation now to remove the lymph nodes. They said at the moment the cancer in the lymphs is miniscal and they have caught it very early and the don't yet want to go in "all guns blazing" was there words, which i have to say i was a bit surprised, but they decided this Friday at the MDT meeting. They said they want to re scan me in 6 weeks time and that the recurrence is very early stages. I was rather upset when they told me this but they said that this is the best course of action at the moment and I have to trust them. My CA125 was 3.4. The reason I had the scan in the first place was because i had a bit of low back pain, and that has been resolved weeks again and they said they seeing these slightly enlarged lymph nodes was just incidental and we would never have known about these until the scan. I guess they know whats best and will just have to trust they know what they are doing by delaying treatment
Hi again June. I'm sure this is the best decision. Oncs usually want to watch & wait, whereas we are worried that the little nasties are growing away in there & we wonder what will be the consequences if they're not removed immediately. My onc said to me that the chemo will be just as effective later and leaves him with more weapons in his armoury to fight it with further down the track. I was doubtful at the time. I thought that it would give the cancer more time to spread. Well, it did begin to spread but the fact that I'm still here 5.5 years after that recurrence, means I can't help but respect his decisions.
Your CA125 is brilliant at 3.4, mine is 40 and my onc still isn't concerned, so I'm fairly relaxed about it too, it's been hovering there for a while (I've been on this tread-mill a long time now). I'm on Avastin & it seems able to fight off new non-aggressive growths. Thanks for the up-date. Good luck with it all. Best wishes. Pauline.
Thanks Pauline feel rather reassured now after your comments and yes I just want them to get in there and blast this beast but have to trust they know what they are doing is on my best interests. When this episode is over my hubby and I are planning a long trip to OZ to see my friend whom lives in Armidale NSW. Haven't been over for 17 years although she's been back here many times the UK. Something to look forward too😎
Once again thanks for your reply and support it really means s lot to me
Wish you all the best too and so glad you're still in remission and stay that way.x
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