Hi lovely ladies just a update on my tumor testing and Caelyx as maintenance

Hi all, I've had a very interesting week yesterday had a meeting with a research coordinator for genetic testing on my tumor very informative. She said their hoping to improve the outcome for women with ovarian cancer by tailoring treatments to suite the individual based on their characteristics of the cancer cells. I signed up as this could help me in the future with more options.

My other update is about Caelyx as maintenance I still have one more Carb/Caelyx to go and then will go on maintenance Caelyx .

Caelyx seems to be the best chemo FOR ME, I will have had 12 treatment when I finished next week, the first treatment was 3rd line single Caelyx for 6 treatment and was quite hard with most side effects but I manage the whole 6.

I had a break but my history is as soon as I stop chemo my 125 goes up so after my break, the next treatment was a sister chemo of taxol this did not help at all, after only 5 treatment my 125 jump up to 1300 so my oncologist put me on Carbo/ Caelyx with great results in 4 treatment it's down to 106 I have two more blood results to see before going on maintenance.

Before I decided if this would be suitable for me my oncologist sent me for a second opinion with one of our top prof of oncology at our largest womens hospital, he is the head of oncology so this help my oncologist Amanda to agree as she said he is one of the top prof here and overseas.

He just come back from US conference on ovarian cancer so I"m really interested in talking to him in the near future.

He advice Amanda that he have ladies on Maintenance Caelyx from 1 year to 18 month with no problems it will be a reduced dose I'm not sure yet what.

I don't have too many option Carbo/ Caelyx was my 5 line treatment in 3 years so I'm glad Amanda has agreed, I have so much respect for her she has kepted me alive for the last 3 years and I know she will keep a close eye on me. When I was diagnose my family was told I would not see the year out.

One last thing ladies never take NO always ask questions and have a second or 3rd opinions. Sadly I think a lot of oncologist are still finding their way in this treatment .

My heart felt best wishes to you all Lorraine 💙💙

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19 Replies

  • Fabulous news Lorraine, could I ask which hospital is treating you??

  • Hi Joanie, Thank you for your reply I go to my local hospital Penrith for my chemo but have had visit to the two largest hospital on oncology for other options as I said my oncologist is happy for me to do that I always go back to her .

    I went to Westmead public hospital for one opinion and then to see the prof at Randwick Women's Hospital he was good.

    I don't know of this helps as I live in Australia.....I would like to say to you go for as many second options as possible then you can some input into how you are treated...all the best for the future..Lorraine💙💙

  • Great news Lorraine and thank you for sharing . Gives us all some hope for the future .

    Yes if you could send me details of which hospital and oncologist , that would be great as I want to seek a second opinion about staying on Avastin and am also realistic that being diagnosed stage 4 a recurrence is likely in the not too distant future ! As I know we are not meant to post names on here you can either send a private message or email me at kimigray@sky.com

    Thanks again and sending you best wishes for your future treatment Kim x

  • Hi Kim. Thank you , yes we need hope and we do need to take some control on the treatments we are offered so by going having other opinions this give as the information to help.

    As my daughter said if you were going to a a tradesman give you a quote on a job you would always get a second quote, she is my full glass person.

    Kim I live in Australia and If I'm not right you are in USA I will still email the information to you,

    I know that the prof from Randwick Women's hospital is well known in the USA and has just returned from there I will give you his name and you can google maybe he has posted some information ......do push for that second opinion ..best wishes Lorraine💙💙

  • Thanks Lorraine . I am in the UK being treated at Guys and St Thomas London and have had great care so far but am collecting info incase I need a second opinion in the future. Although you are in Australia would still be grateful if you could send me the info . Your daugher is so right .

    Thanks and best wishes . Love Kim x

  • Lorraine, Thank you for such an informative an up beat post. Your oncologist seems great exploring all the options for you. Hope all goes well with the treatment and the maintenance Caelyx. I had my 6th dose Carboplatin and caelyx yesterday and cross fingers it seems to be working for me with very few side effects. Phew I FEEL VERY LUCKY. My CA125 is now in the normal range and the midway scan showed all the tumors have shrunk enormously.Love Chris

  • Fantastic news Chris best wishes for the rest of your treatment love Kim x

  • Hi Chris, Great news that the Caelyx is working for you also we both are very lucky as it's not suitable for everyone. it's turned out to be the best one for me. as I said my history is as soon as I go off chemo my 125 will go up Caelyx has always brings it down so hoping the maintenance works,

    I don't like the idea of being on chemo for the near future but at the moment do not have many oinions, hoping some good news will come from my tumor testing or a break in treatments that is all we hope for, Best wishes Chris and hope that your treatment keeps going in the right direction

  • Hear hear, a second opinion is worth it's weight in gold. You are indeed lucky to have a proactive and open oncologist

  • Hi Suzuki, Thank you for your reply I totally agree it is worth it's weight in gold and if you have a proactive oncologist like mine then you are in good hands, that is why if you feel your oncologist is not then try and change to one you feel good about.

    I joke with Amanda my oncologist that she has to get me to 80 I'm 73 I'm sure she will try. Sending you my best wishes Suzuki ...Lorraine💙💙

  • Hi Lorraine what a brave story. You are right that the oncologists are finding their way - and we have to trust them and look after/out for ourselves at the same time. Wishing you all the best with your future treatment x

  • Hi Elizabethe, Sadly my story is all too familer on this site so many lovely ladies are fighting this beast and we rely on our oncologist to find the answers, it must be hard for them to have our life's in there hands, so you can understand when some are more pro active and some will only stay in the safe zone, it is up to us in some degree to take control on how we would like to go forwards,

    Thank you Elizabethe for your best wishes and I wish you the same for the future..Lorraine💙💙

  • I too have found Caelyx to be the only chemo that has worked for me. I have just had my third infusion second time around with Caelyx. I have had Gemzar in between which didn't work at all. They have told me I am on my last line with Caelyx as I am reaching my lifetime dose. So I guess I am at an end with chemo. My CA 125 has halved in two treatments. My side effects have been rugged. I write this from my bed as I had the treatment on Wednesday. I also live in Australia so I am on board with second opinions. Hope your treatment works for you. Sharon

  • Hi Sharon, Glad that Caelyx is working for you, Like you it has been the best treatment for me and I do understand when oncologist are being careful about the amount we can handle, my original oncologist, Amanda was at first not in favor of me going on it as maintenance , but she has a lot of respect for the information from the prof, she is now on board with the idea, it will be a low dose.

    Best wishes Sharon hope the treatment just keeps on improving ...Lorraine💙💙

  • Hi Lorraine, thank you for such detail in your history. I find it very interesting to know what treatments others are having. It helps us to make choices if we know what others are doing or have done.

    It sounds as if they are looking after you. The fact you are having the chance at seeing the top dog in oc is brilliant. I am going to ask my onc about using Caelyx as a maintenance drug if I need more chemo. I have done well on Caelyx with less side effects than other chemo.

    In the UK gene testing the tumour is not the norm yet. I strongly believe that's the answer for many of us. I constantly bring gene testing & other gene questions to my onc. I never get a clear answer it can be very frustrating.

    I know I was only given 6 months that was with treatment. I have made 2 years & 6 months. Like you I believe we have to keep asking questions & if the answer is NO ask why. I feel if we keep pushing for answers it can make those caring for us question their own ansewers. With some luck they can offer us more treatment they didn't think of that might work well for us.

    I am so happy you are doing well. I often think of you I have a picture of you in my mind of a very brave stronge person with a very warm heart. Take care Lorraine love Cindyxx

  • Hi Cindy, Yes it help a lot to correspond with other ladies on this site, like you I have been on this here for just over 2 years and the support and encouragement has help me through.

    I'm not brave or strong I have my days when I think why bother I have no future then I read some of the post from ladies like, Clare and other ladies and it does give me the strength to go for the second opinions and not always take No that is all we can do.

    I was reading again the post that Callemum sent a while back about Caelyx as a maintenance drug it was interesting.

    I'm sitting in my back garden I live in the Blue mountains and to-day is the second day of spring and a beautiful day and tomorrow will be better so I hope this will be the same for you and all our ladies ..Lorraine xx

  • Hi Lorraine, the support & information on here is excellent I try to visit every day.

    As I have already mention I am going to ask my onc about having Caelyx as a maintenance drug but so far what ever I ask for I receive a No or some other excuse. It doesn't stop me from asking over & over again. As for Niraparib my daughter in law & I kept bringing it up till they were able to offer it.

    Here in Southampton UK the weather has been ok a few wet days but looks nice to day. I want to go out to day but I am suffering with a vertigo attack till it passes I am in doors. Hope you carry on with the lovely weather😎 Take care love Cindyxx

  • Glad your tumour count has dropped.

  • Sounds like you're getting the best treatment possible, Lorraine. Where you live sounds beautiful. Can you put a picture on?

    Best wishes, Zena xx

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