Reassurance advice needed please

[Billwill]

Hi there, I have been a member of this site for over a year but have never posted before. My mum was diagnosed stage 3c January 2014 and had carboplatin/taxol, TAH June 2014 followed by 3 more courses of carbo/taxol. Chemo completed in August 2014 with positive results. Scan in Jan 2015 showed no visible trace of cancer apart from an enlarged lymph node. We took this as a huge positive but had a phone call 1 week later to say that CA125 had risen to 200. My mum was very weak last year and lost a lot of weight following draining if fluid on her lungs and hospitalisation due to severe gastritis. However, since completing chemo she had gained weight and is feeling incredibly well. She is my world and I am very concerned at a recurrence just 6-8 months after completing first line chemo. We have a scan booked in and an appt with oncologist on 14th April. Need some positive stories please about recurrence and long remission periods following 2nd line treatment. We are based in S Wales and therefore don't think avastin will be an option. Many thanks in advance ladies xxx

[JanePW50]

Hello there. My Mum was diagnosed with 3c on Christmas Eve 2013! Same treatment - 3 carbo/tax, debulking op in April, 4 more carbo/tax. Last chemo in July 2014. I took Mum for her first three month check on 7 Oct 2014 and the oncologist said her cancer cell count was 'back to normal'. Mum was so positive and so happy. But then in Jan this year a friend took her for the 2nd three month check and a recurrence was confirmed. I just couldn't believe how that could have happened in just three months. Her CA125 went up to around 355. So, a HUGE blow. Anyway, she has had one 2nd line Caelix and saw the oncologist today but he said she would have to have three before they could tell whether it is working. Anyway, we are all keeping positive. I have read a lot of positive stories on Ovacome about people living for years, managing their cancer. I find Ovacome so useful and it's always useful to compare stories with people who are going through similar experiences.

Tell your Mum to keep positive. I've read a couple of comments from ladies saying don't let the cancer rule you. Tell it to go away and I think that's so positive and I know there are side effects but I think there are lots of good days and the patterns pan out after a while. The fact that your Mum has put on weight and is feeling much better is great and my Mum is also strong and active and the oncologist said this is very positive. My Mum is 78 and is amazing for her age. Such a shame this disease invaded her life but she is coping admirably. I live over 200 miles away which is difficult but I'm going down for a long weekend on Thursday.

Well, thinking about you and love to you and your Mum.

Jane X

[Billwill]

Thanks for your reply Jane- shocked how similar our stories are. My mum's oncologist also believes that how she is feeling is a huge indicator and because she is feeling well that is a big positive. Didn't expect to be facing a recurrence so soon following such an encouraging scan result in January. We are focusing on staying strong and positive and we will wait and see what the latest scan reveals. My mum is 65 and is a very determined lady with lots to keep her focused including a longed for 2 year old grandson!! Wishing you and your mum lots of luck and love on this journey- so lovely to speak to someone going through the same experience. Please keep me updated Xx

[Hidden in reply to Billwill]

Hi there - my Mum is in a similar situation. She was diagnosed in June 2012 stage 3c. She had carbo taxol and surgery for the first round followed by 12 months remission. She had second treatment (can't remember the name of that one) starting in December 2013. She had 8 months remission and has now started her 3rd line (carbo/caelyx) and is having her 4th out of 6 sessions today. We saw the Onc yesterday and it seems the treatment is working and her CA125 has gone down - it takes 3/4 sessions for it to start showing with caelyx apparantly so thats good.

Throughout the treatment Mum has remained really positive - she's 72 but at times runs around like someone half her age! We have had some bad times obviously but she gets through those with a lot of support from friends and family. We're hoping for a long period of remission at the end of this line and have lots of things planned for the summer. It certainly helps to hear of stories similar to our own - a lady we met at the beginning of Mum's treatment (who was diagnosed 8 years previously at stage 3c) was on her 7th line of chemo and still really positive about life.

Hope this helps

Lisa x

[JanePW50 in reply to Hidden]

Hi Lisa. Gosh your Mum has been having long remissions. It must have been such a shock when she had a recurrence after 12 months. It sounds as though she is managing the cancer really well. It's interesting to hear that it takes 3/4 sessions for anything to show with the Caelyx.

She sounds so positive and it's really encouraging to hear stories like this. Although my Mum is 78 she's a really strong and active 78 year old. I'm so glad summer is coming. It's good to look forward to going out and about and doing as much as possible.

Gosh the lady on 7th line chemo is an inspiration!!

Love to you and your Mum and let me know how things go.

Jane X

[JanePW50 in reply to Billwill]

Gosh, yes our stories are SO similar. I know what you mean about being shocked about the recurrence. We've all been numb. Gosh your Mum is young. It's so great that she's so determined. I drove down from Carlisle this afternoon for a long weekend with Mum. She's really tired as she's missed her afternoon nap two days running plus the chemo is tiring isn't it and the whole thing must be so mentally draining too. We know that the cancer is there but the hope is that the chemo can just control it and Mum can lead a relatively normal life in between side effects!! I'm hoping she sleeps well tonight because she is so shattered.

Lots of love to you and your Mum and keep positive and let me know how things go. Jane XX