No good news

Hello ladies, I wish I had something positive to report, but no good news from me. I'm on my 5th line of chemo, with Topotecan, having passed through taxol+ carbo (twice), Caelyx, then more taxol-carbo (weekly), and this has been going on for almost 4 years. It's now clear that my tumour is platinum resistant, and that is why I moved to Topotecan. But last week's scan shows that it's not working, the existing tumours have grown, and more small ones around the abdomen have come up. It seems that there is nothing else left to try, so my oncologist has put me on Tamoxifen, in the hope of slowing things down. Has anybody had any experience of this?

Am 49 years old, and I've now realised that I probably only have a few months left to live. I am hoping to have at least another summer, but this might be wishful thinking.

Thank you for your help and support.

Francesca

39 Replies

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  • Hi Francesca

    Sorry to hear your news. There is a lady on the American site Inspire who I think was in a similar position to you who has had good results from tamoxifen - might be worth you looking there.

    All the best, Monique x

  • Hi Francesca,

    I am so sorry to hear your news, I do hope the tamoxifen works.

    thinking of you best wishes love x G x

  • Hi Francesca

    I am so terribly sorry to hear this , I have been thinking about you. Please bear in mind that tamoxifen works for lots of people.

    Much love

    Charlie xxx

  • Good luck with the tamoxifen - dont give up hope yet -your in my prayers xxxxxxxxx

  • Sorry to hear this. Has the Rotterdam regime been considered? It's very tough but effective on platinum resistant disease. Would you consider going for a second opinion? I really hope the tamoxifen works, I know it does work for some people. Please keep in touch, I am thinking of you. Cx

  • Dear Francesca,

    I have been on tamoxifen since January after my fifth lot of chemo doxirubican failed to work. My scan which I had about a month showed no visible change only some fluid in my right lung. I didn't have my CA125 tested. My GP has left me a just in case bag!!!!! aren't I the lucky one.

    I went into hospital last thursday for five days they thought I had a blockage which fortunately I hadn't but I was very dehydrated and constipated. Please don't let yourself get dehydrated.

    I really hope the tamoxifen works for you.

    love Marilyn

  • Hi Marilyn,

    Thinking of you love x G x

  • Thanks Gwyneth love Marilyn xxx

  • Hi Francesca,

    I really hope and pray the Tamoxifen works for you, please don't give up the fight,

    love

    Jan x

  • Hi Francesca, So sorry to hear that but please don't give up. A big virtual hug coming your way. Love Kerry xx

  • Hi,

    I couldn't just read your post and not reply, as I feel what you are going through as my scan result was the same. But i've thought about this long and hard, and I believe that as long as there are other treatments to try, there will always be hope. So keep up the fight, be positive, stay strong and look forward to the spring and summer...

    I pray with all my heart you will be one of the lucky ones!!

    Take care of yourself and kick ass!! ;)

    Jules xx

  • Wishing you all the luck in the world. Hope the Tamoxifen works. Ask about the Rotterdam, I am on it at the moment, extreme tiredness seems to be the main side effect. Keep strong and don't give up.

    Lots of love and hugs coming your way.

    Hilary xxxxxx

  • Sandra started her 5th line chemo (all differant regimens). I mentioned tamoxifen to the onc and he said it did have enough potency for her. As I understand it this drug is hormonal rather than chemo hence few side effects and works well on cancers that are oestregen fuelled for slowing down the progression. I hope it goes well for you. Ref Cisplatin, I understand this to be a platinum based chemo like carboplatin and therefore unlikely to help your cause.

  • Sending you all my love Francesca. I so hope the tamoxifen will work for you.

    xxxxx

  • Sending you love n hugs and posivibes. Its good to have hope and dreams, don't give up on them. I hope the new idea for treatment works for you.

    Love Wendy xx

  • Dear Francesca

    I don't know exactly what your oncologist has said to you but don't assume its the end of the line in terms of treatment after tamoxifen. It is down to how you are feeling as to whether you want to push for second opinions and further options - like a drugs trial. All of this is a very personal thing. We will give you all the combined advice we can over those options if you want it.

    I am 49, I'm just coming to the end of 6th line treatment (although I lose count). Its been gemicitabine/carbo which has apparently worked on all the tumours except one - which has grown. I will not accept its the end until someone tells me categorically that it really is. That may be sooner than I want to imagine. But hope is a wonderful thing. Don't let them take it away from you until you are ready.

    I've been thinking of you a lot today.

    Love Sarah

  • Hi, Sandra just started 5th line with gem/carbo. What side effects did you experience,Sandra has come out with an itchy rash today after her 1st cycle of treatment.

  • No serious side effects. Usual things like tiredness, aching and spots! It is common to need a blood transfusion and I am definitely borderline now and that affects energy levels and makes your legs ache. I have the last gem dose tomorrow so 'hello' from the other side of this particular tunnel.

    My best to both you and Sandra - you can do it!

    Love Sarah

  • Hi Francesca

    I am so sorry to hear this but the power of positive thinking, determination and sheer bloody mindedness can sometimes make all the difference. Like all our other friends above, I say don't you dare give up. Keep fighting and give the tamoxifen a chance. Huge hug, we will be thinking of you and wishing you well

    Love

    Sue xxx

  • Hi Francesca am saddened to hear your news and can only imagine how you feel right now, you have been so positive in the past - it is hard to keep the faith but you are not at the end of the line yet and if all the love from us all gives you some hope to fight strongly then we have achieved something for you. There have been good results from tamoxifen so I am sure it will work for you.

    All the love and hugs in the world Amanda xx

  • Hi, Francesca.

    Very sorry to hear about the bad news. Well, I also have a platinum resistant cancer - clear cell carcinoma, stage IV - and my oncologist added avastin to the chemo. This is due to a phase III clinical trial called Aurelia published last year at American Society of Clinical Oncology that showed improvement of progression free survival in platinum resistant pacients treated with the combination of Avastin with any medication used in second line chemo. Avastin almost double the progression free survival when compared with the use of any chemo alone. You can find the Aurelia study at the site oncologystat.com.

    My oncologist also recomended to take every day 8 grams of curcumin cause many scientific studies showed it has anti cancer activity. Just have to look for a brand with curcumin and bioperine because without the pepper our body can't absorb the curcumin. And he recomended too to take 6 capsules of fish oil and 15 grams of glutamin every day because they enhance immune system.

    At the site oncologystat.com you can read about the results of some clinical trials where women with no more standard options of treatment reached complete response.

    So, don't loose your faith and hope. There's still other options of treatment but I hope Tamoxifen will work for you.

    Hugs,

    Fernanda

  • Dear Fernanda, thank you for your very helpful suggestions. I was due to start Avastin, but as it has to be given in combination with a chemo drug, my oncologist wanted to try Topotecan on its own first, to see if it worked. But as it didn't, and there isn't another chemo I can have, we decided that there was no point, as we'd have to pay for the Avastin ourselves (as I don't qualify for free Avastin, being on 5th line treatment). I'll look at the site you suggested.

    Good luck with your treatment.

    Francesca

  • Hi Fernanda, it's me again. Where do you buy the curcumin-bioperine pills? I've looked online but what I found has quite low doses, I've have to take 16 pills every day to get to 8 grams!

    Francesca

  • Hi, Francesca!

    I remmembered my oncologist said if the chemo fails he intended to ask for a complete DNA screening of my tumor. In Brazil this thing is just beggining, but in USA there are some labs where they perform genetic screening of cancer samples for clinical purposes, not only research. As result, they send a list of the mutations and the avaliable drugs or clinical trials to overcome these mutations. He said the genetic testing may point out a drug that is not used in ovarian cancer, but may be helpfull. Well, he also said the test may show the cancer has some mutations with no drug to treat it.

    The oncologist said the test costs about US$ 4.000,00 (four thousand dollars).

    As my chemo is working, my oncologist decided not to do the test. But it might be an idea to you.

    Hugs,

    Fernanda

  • Hi Francesca

    Sorry to hear your news.Good luck with the Tamoxifen.

    If you want to explore other possibilities... Have you asked about a parp inhibitor trial? I was in a trial for 10 months last year and although my cancer has now recurred I had a good year last year with no side effects. The parp inhibitors are most effective for hereditary BRCA mutated cancers (which accounts for between 10 and 15% of ovarian cancers) or cancers with a 'BRCAness' about them (which could be up to 50% of ovarian cancers) but they will test you if you haven't already been tested. To see all the current clinical trials just go to clinicaltrials.gov/.

    A recent study based in the US reported that "Patients with concomitantly high levels of PARP, FANCD2 and P53 protein expression are at increased risk of early ovarian cancer recurrence and platinum resistance." See the report here: plosone.org/article/fetchAr...

    sending you very best wishes

    Sharon

  • Dear Francesca

    So sorry to hear your news, but please don't give up. You are in my thoughts.

    Hugs Chris x x

  • Keep positive Francesca. You have the love of us all.

    Much love and cwtches ((Welsh for hugs)

    Jean. Xxxxx

  • Dear francesca... I am so sorry to hear your news. you are in my prayers. I hope that the tamoxifen slows things down for you. We can only imagine what you must be going through. I am so sorry.. I hope you get the summer you wish for..

    Lots and lots of love

    Suzanne. Xxxx

  • Dear Francesca

    Sorry to hear this. Hoping that the tamoxifen works for you.

    Sending you my love and best wishes.

    Mary xxx

  • Francesca - very sorry to hear your news but don't give up hope. This site and the American 'Inspire' site are full of messages from women who have overcome problems with medications etc and we must all stay positive. Being positive is one of our strongest medicines that we all have at our disposal. I know sometimes it's hard and you have already had a long journey, a journey I am hopefully only at the beginning of as I face the end of first line treatment next month.

    I really hope the tamoxifen works for you and you are around for many more summers to come.

    Love Annette xxx

  • Hi, Francesca.

    I live in Brazil and I have a brother who lives in the USA so he buys 1 gram curcumin-bioperine pills at local pharmacy and sends to me here in Brazil...

    He said to me he once bought the pills at Amazon site and they delivered very fast at his house in Dallas. I looked in the Amazon site and there are many brands with 1 gram of curcumin in each pill.

    My oncologist recomended to take the 8 pills this way: 3 after breakfast, 3 after lunch and 2 after dinner.

    Hope Amazon site deliver your pills fastly in UK.

    Hugs,

    Fernanda.

  • Hi, Francesca.

    Why don't you hire a lawyer to obligate your health insurance to pay the Avastin? My health insurance denied my Avastin treatment so I've got a justice decision and now they are paying for it.

    The judges here in Brazil always grant when people are asking for medicines to prolong life or face serious diseases.

    I think judges in UK will be the same way because it's a request founded in the most importat right: the right for life and without this right all the others are useless.

    Good luck with your treatment.

    Fernanda

  • I think health works rather differently in the UK, so litigation isn't an option for us. It is a bit of a post code lottery re Avastin but there is so much helpful advice on this thread it should really help Francesca. Xxx

  • Hi

    Please do not give up hope. I have also been on continous chemo for 4+ years. Most schemes have not worked for me. I have been to and fro carbo taxol 4 times and i have had at least 4-5 orthers plus hormone. Still there are more options.

    Stay strong anf all the best

    GEPI

  • Dear Francesca, I was really sad to read your blog but there have been so many good wishes and upbeat, helpful posts I'm hoping they've cheered you up and put you back on course to keep on fighting.xxxxx Thinking of you and hoping for a happy outcome. Love Annie

  • Hi Francesca.

    Keep fighting. Tamoxifen may do very well, and new treatments may appear.

    Lots of love,

    Eileen xxx

  • Francesca - I'm sending you every bit of strength I can down the wires. Please keep strong. Would you consider your diet. Thanks to advice on this forum I'm now trying to follow a no sugar and no grain diet so no starch /sugar for the cancer to feed off. If you want info email me. I'm 44 so very close to you in age and so want to help. Try to be strong, strong, strong. - Nicola xx

  • hi Francesca, I have already replied to your question, but DO NOT GIVE UP YOUR FIGHT! I am also 49, and that is just too young to let this despicable illness get the better of you. While there is an option go for it. Try anything that might help! There is a lot of useful information and support to drive you on! Good luck and enjoy the summer when it arrives ;-) xxxxxxxxx

  • Hi Francesca

    I felt so moved when I read your message and I wish I could wave a magic wand for you. My dear sister was diagnosed with OC quite recently (Jan) and I joined this site for advice and support. One of the ladies on here (Angelag) recommended a book called Anti-cancer by Dr David Servan-Schreiber which I have read from cover to cover. You may already be aware of it as I'm a newcomer to this horrid disease and still at the beginning of what's out there in terms of advice. But just in case you aren't aware of it, the book is written by a man who has kept his cancer at bay for 18 years by eating anti-cancer foods and foods that can stop cancer cells growing. There are some stories in there about people (feeling like there is nothing left to try) who have slowed things down significantly by eating the right foods and introducing exercise and meditation into their lives. It's not weird food either but normal everyday stuff like brocolli and tomatoes and the right way to cook them to get the best benefit. It also describes how your body physically responds to positivity (ie. it fights back) The book is available on Amazon. If you haven't the energy to read it ask someone else to for you. Reviewers of the book have commented that it has given them back control of their bodies.

    Please don't feel hopeless Francesca - I need you to inspire my sister and all like her.

    Sending love and I am thinking of you.

    Mel

    x

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