My mom was diagnosed October 2018 with Stage 4 and recently learned she is having her first reoccurance in her stomach lining. Two small spots- They offered surgery, the doxil/cabo + avastin. has anyone had this combination for a reoccurance? What is the prognosis between the next reoccurance?
I hate this disease, truly is just awful. She never drank, smoked, ate anything other than organic. Truly is horrible.
You sound like how I feel. So unfair isn’t it.
I don’t have any advice but just that I’m also a daughter in her talking with these wonderful ladies to gain advice!
How’s your mom doing today?
I see we are in a very similar boat going through Ivf too
She is ok, had her bloods done this PM. It jumped from 19 to 27 last month and the scan showed a marginally bigger nodule. The onc told us to prepare for more chemo. The blood results we get tomorrow/Wednesday will tell us more. We are hoping that the rise was because of the Covid jab!!
I’ll message you separately about the ivf!
Yes you can…. that’s the good news. I had a really nasty first recurrence last year but survived to tell the tale. Now on Olaparib maintenance treatment. The less good news is that once you have recurred your disease is classed as incurable which sounds awful but just means that it’s likely to try to come back again.
Since I was diagnosed better treatment has become available to keep us going and keep the cancer at bay. I’ve met many women who are living with cancer and having a good life, which is encouraging. Best of luck to you and your Mum as you negotiate this new phase…hopefully she will do very well xx
Hello, Lind58, I'm sorry to hear about your mother's recurrence.
I wanted to tell you to keep your head up and never lose hope. My mum was diagnosed with Stage 4 in December 2020. She's on Olaparib and luckily, she's feeling good. Since I joined this amazing forum, I've read many stories about women who'd had one and more recurrences and continue to live their life.
In my first post, some ladies shared their positive outcomes and they helped me a lot. You can check it out.
Wish you and your mother well! You're not alone!
Hi I have had 2 recurrences and currently nearly 8 years NED on Olaparib. So yes you can survive a recurrence. I was diagnosed 3b in 2007 so am in 14th year. It maybe worth yr mum asking about a parp inhibitor after treatment. I wish u both well. Kathy xx
Your amazing Kathy,thank you for sharing your wonderful positive post. I for one need to hear such positive news. I am incurable and was toldthat just over 2 years ago. But l picked myself up put my positive head on and hopefully l will survive like you. I will try anything to survive
Sending my usual love & hugs to everyone we can do it. SheilaFxxx
Hi Sheila... as an aside, when I was diagnosed in October 2007 my surgeon said 'yr prognosis is not good' my Macmillan nurse said 'you have a couple of years' my trial nurse (I was on a trial for Avastin) said 'you have a couple of years, it will come back and shorten yr life' but my 2 chemo nurses said to me 'what do they know... you can show em' and here I am. Ive been on 3 trials and still here! I would love those ppl to see me now x keep those positive thoughts at the forefront of everything you do! As my late boss once said 'Dont let the b*****ds grind you down Kathy' x
Kathy your so right, and your living proof l myself have a brain tumour as well as ovarian cancer the tumour lve had for 14 years and its managed with a programmable valve in my head, and after 3 major surgeries lm almost perfect on that score. Then the ovarian cancer well its not going to win. My husband beat pancreatic cancer after being given 3 months nearly 30 yrs ago and thank goodness he helping me in my battle so l know they can never say actually how long we have. Just worries me never actually seeing a consultant for far too long
I did see a junior doctor in Feb after raising my concerns of never seeing anyone.
But with this when its spread like mine and being classed as incurable l feel l need checking properly every 3 months am l being selfish do you think. Its just when they call it the silent killer l feel it needs checking regularly the only problems l have are with my bowels. Kathy your so inspirational keep doing what your doing you give us all hope. Love & hugs SheilaFxxx
Wow Shiela! You call me inspirational yet your story is one of strength and survival. I dont think you are being selfish at all wanting to be monitored more closely. Have you thought of asking PALS to help on that front? I wish you nothing but the very best please keep in touch xx Kathy
No l havent to be honest, and really l dont like moaning about things. But feel things could be much better,l know we all feel vulnerable at times & its my blood tests next week then phone call next day. It will give me the opportunity to say something. But if l still feel the way l do l will take your advice and contact pals thank you for advice. Keep doing what your doing & keep well SheilaFxxx
Hello Sheila, just to say your not being selfish wishing to have face to face meetings with your onc. My team have been told me if I want to have face to face then it can be arranged.( I think maybe not every time, )but when you feel you need to see them or they need to see you. Do ask hospitals seem to have differing protocols sadly.
Thank you Casamimosa, deep down you know a lot of people are suffering anxiety Because of just telephone calls . Reallyl need too say something on my next telephone call on Thursday hopefully my results will be good. Although my bowels aren't doing what they should. But l really appreciate your kindness like you say different hospitals different protocals. Keep well
SheilaFxxx
Hello again, do ask for a face to face if you need one for your mental and general health. My bowels have their moments since my surgery but I'm sort of managing it. I'm also on olaparib now which seems to be working. Keep strong but ask for what you need you know your body. Much love take care
Will do, so good to be able to message girls that truly understand how l feel at the moment, just on a wee bit of a downer at the moment with my husband not being so well, and daughter in law being diagnosed with breast cancer. Normally so positive need to get my positive head, and practice what l preach. And thanks so much for your kindness & advice. Love & hope SheilaFxxx
You can do this but don't be too brave sometimes you have to let go for a little while then get those big girls pants back on and deal with what's to come. Always here if you need a rant or a cry. Linda x
Thanks Linda l really appreciate your kindness. Xxxx
Kathy,
I am having chemo now for my third recurrence. I was originally diagnosed in 2017. I had surgery to remove tumors, Carbo/taxol in 2018. Recurred in January 2019 and did 2 successful years of avastin, but had kidney issues so had to stop. Tumors started to grow in March of 2021 so I started on Carbo/taxol but had an allergic reaction to Carbo. Now doing cisplatin/taxol. Ca125 dropped from 700 to 37 after 3 treatments. Have 2 more chemo treatments to reduce tumor size. Dr wants to start me on olaparib as well.
It is encouraging to hear that you are doing well on it for so long. I am braca negative. Are you braca negative or positive? What side effects have you had if any?
Hi. I am BRAC2 positive. I have very minor side effects, dizzyness sometimes on standing or moving too quickly which is caused by sudden drop in bp. I have some bowel issues but Ive figured out those tend to be related to certain foods which can cause and urgency and loose motions (prob TMI, sorry) . I understand from my onc that BRAC negative ladies are having some success on Olaparib, I wish u well xx
HI KATHY- FROM WHAT I'M TOLD, ALTHOUGH SOME ARE BRCA NEGATIVE THEIR TUMORS CAN BE BRCA POSITIVE. THEY ARE USING PARPS FOR THEM.
I TOO HAVE BALANCE AND DIZZINESS ISSUES. IT ALSO HAS EFFECTED BP.
HOPE YOU FINALLY GOT THE VACCINE AND ARE DOING WELL.
LEE
Thank you!! Keep up the positive vibes.
I don't know about the specific regime your mum is on but my mum was diagnosed stage 4 in july 2016. She is still here, think we are just at the end of chemo for reoccurance number 4 or even 5! She has been relatively well for all of it. X
Hi Linda, I'm sorry your Mum has recurred. Surgery is considered to be the best option to get rid of the beast but you need to talk it over with your CNS or someone who understands the situation. You can recur many times and be treated for it. All the best Sue xx
Hi, I was diagnosed in 2017 with 3C, full debulking surgery followed by packitaxol/carboplatinChemo and 1 year of Bevacuzimab every 3 weeks. and it returned in the form of a 9cm tumour between my stomach and pancreas in 2019 with 18 weekly Chemo. It looks like it’s back again so I have another battle. This disease is cruel but I’m still looking for a cure or even a few years remission would be good. I like your mum have never smoked drank abused my body in any way. This disease is truly evil it has no respect. Your mum is fortunate to have you by her side. She can beat this again and hopefully another 4 years break. Best wishes.
Hi Linda, I feel for you I really do. I am on 4th recurrence, just finishing an 18 weekly programme of paclataxol. The only advice that I can offer you to give to your mum as I am also not curable is to NEVER give in to this vile disease, remain positive and upbeat difficult as it is. I will accept every treatment offered to me no matter how many times IT comes back, I will never give up on living my life. Stay strong and stay positive. X
Im absolutely with you on your positive attitudeAnd your right it is absolutely vile, and like you l will give up anything to keep me alive. And l will never ever give up . Nothing easy when your fighting incurable OC , but want to enjoy life for a long long time yet. So keep well, stay positive
And get the best treatments you can. Love & hugs SheilaFxxx
Thank you so much Shiela, tried chasing high risk MRI and mammogram today again, tried last week as well. I explained my situation but hot the most unhelpful person on the telephone that would only send a "generic" email. Don't hold out much hope of getting scans done before I speak with my consultant on the 22nd!!! Will just have to hope he gets the email and acts on it but won't hold my breath. I hope you are ok, stay strong and yes let's never ever give up, life is so precious. Xx
You know not all are unhelpful but sometimes you do feel like your talking to a machine thats programmed to say no. Think they forget that its your life and very important. For example my husbands bowel test came back needs investigations after waiting a month for results then got a letter saying would get in touch within 2 wks ref appointment he then had letter telling him to ring and was told 18...20 wks before hes put down for appointment because of backlogs baring in mind my husband previous history of pancreatic cancer and my history very worrying situation, really feel we have enough to worry about. Hope you get something sorted out before you see your consultant. Sending love SheilaFxxx
Dear me Shiela that's terrible, 18 - 20 weeks is completely unacceptable, did you complain to PALS? The constant worry is so exhausting, what do we have to do to make these people realise how difficult this is for us. Take care Shiela I shall let you know how I get on. My thoughts and love are with you. Xxx
Bless you, think were all going through it at the moment, but l know for a fact l couldnt cope without my darling husbands help. Just hope & pray for you that you get to your MRI & mammogram before you see your consultant on 22nd you know its nice to talk to others that really understand your frustrations isnt it. Pleaae take care stay positive. Love SheilaFxxx
You to Sheila, bless you. Xxx
Welll first sorry she is going thru this but this is how it goes with ovarian and the protocol is a good one. We on this site have had recurrences and lived to tell the tale. Hugs from paris
Diagnosed stage 4 in 2000 my millennium present! Four recurrences between then and2011 then clear for approaching 10 years.This is exceptional and I have to live with 2 stomas and peripheral neuropathy but I am still here and just bought my first leather jacket for my 70 th birthday.Vivxx
Inspiring x
Happy 70th birthday, Viv, and here is to many happy and cancer free returns.
Your a little star Viv and by coincidence l did the same, your only young once aren't you😅🤣 sounds like you've done amazing with your battle gives me real hope. Happy birthday Viv what are we going to buy ourselves for our 80ths your just fantastic and fill me with such positivity. Stay well & lots of love SheilaFxxx
I believe that was my chemo cocktail when I had my second reoccurrence of OVCA. It kept me in remission from 2014 to 2019. I am now on Avastin infusions only and my CA 125 is staying low. Recurrences are very mentally depressing but I encourage Your mom to fight aggressively. I’ll be praying for her
Hi Leniko, what was the chemo you received before 2014? Thanks x
Paclitaxel and Carboplatin in 2008Doxil , cisplatin and and Avastin in 2014.
There is a lady who posts as Helenstandsforhope on the American Inspire forum. She was first diagnosed over 30 years ago originally. She had a recurrence a couple of years later but has been NED since. She posts regularly to inspire others. Remarkable
Fay
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