Meeting with oncologist quick update: Hi lovely... - My Ovacome

My Ovacome
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Meeting with oncologist quick update

Hi lovely ladies,

I wanted to let you know I had a meeting on Thursday with my oncologist re having caelyx or tamoxifen as Carbo didn’t seem to be working for me. Well I don’t know if he’d bumped his head or something but it was like talking to a different man from the week before. He was very patient and listened to all my questions regarding treatment options and also about clinical trials and getting a second opinion.

To cut a long story short we decided between us to give tamoxifen a try, I have six weeks supply then a return clinic visit to see how things are doing and blood tests. If for any reason I decide it’s not for me I can change my mind and try the caelyx. If this then doesn’t work he will happily sort out my referral to the Christie. He made a point of telling me it seemed early days to be looking at trials when there were still tried and tested methods to try first. His whole manner seemed more positive, my poor body has been feeling completely battered and I have lost so much weight which is why I decided to give the tamoxifen a try first. I have taken my first dose today and feel ok so far. I want to feed myself up after having 7 litres of fluid drained on Monday which has made moving about a lot easier. I hope I have made the right decision for now. Fingers and paws crossed that something goes right for me soon.

Love and hugs to all ladies fighting

Diana x

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Dear Diana,

Thank goodness that your Oncologist had had a brain transplant.

Still, I am not satisfied with your choices. Is it not possible to operate first?

And then, I think I would opt for Caelyx over Tamoxifen, but I guess you can wait 6 weeks to change.

However, he does sound like he is kinder and gentler now, but with your ascites and new growth, I think you should gently ask for that referral now.

I don’t think you should wait.

Like so many ladies have suggested, Taxol can be infused with special precautions and very very slowly.

The Christie might have the wherewithal to offer you better options now, including surgery.

I am sorry that I am not more supportive, I just feel that Tamoxifen is more of a maintenance treatment and not really a match for Ovarian cancer.

Best wishes,

Laura

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Thank you for your reply Laura,

Your post did get me thinking, I have been reading up so much on different treatments and sadly feel as if I’m been given a pretty poor deal despite onc change of character. Feels like I’m being brushed aside?

After talking it through with my darling kids I am going to push for the Christie second opinion sooner rather than later. I feel a lot stronger in the last few days just being able to eat more and moving about has given me more energy. I would never forgive myself if I hadn’t explored the chances of getting a decent shot at life and I don’t want to lose that window.

Thank you so much for your support it means a lot.

Diana x

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Dear Diana,

I am so glad to hear that your kids are so supportive of this decision.

Go girl!

Hugs,

Laura

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That sounds really hopeful & positive Diana!

I wonder if the Cons had bumped his head 😂

Build yourself up with some lovely food now xx

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Hoping that this works for you and glad your oncologist has come round- perhaps he had had a bad day before.

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Hi Diana,

I was on tamoxifen for 2 years, but as maintenance only. I have had taxol as well but switched over to taxotere witch gave me much less side effects.

My last regimen of carbo/tax didn't take for long and I just started gem/cis which is supposed to be effective in reversing platinum resistance.

I agree with Laura that you may want to ask about the efficacy of tamoxifen in your situation and other possible options.

And I always say that second opinions are golden. Your body is precious, it deserves the best onc you can find.

Hugs,

Superkim

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Well done! It’s great to have a decision made. 🤗

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Fingers and toes crossed with you Diana. Sounds like the options are out there and good to know if one doesn't work, your doc is on board to work WITH you on other thoughts. I like any doctor who suggests 2nd opinions as I think its great to have other perspectives when dealing with life matters. Wishing you luck and hoping the Tamoxifen works well!

oxoxoxo Judy

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Thank you ladies for your replies and good wishes, I’ve decided to push for the second opinion now rather than later. The fight is back on 🥰.

Diana x

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I saw my oncologist on Thursday after my CA125 had risen. He told me last blood test was inconclusive and he had me do another one there and then. However the scan was conclusive - two very small tumors can be seen and the ascites is to the point where I will probably need to drain it. He is of the opinion that I have the chemos I had in 2013, Carboplatin and Pactitaxol, which worked and give me 4 years, but was very unwell, with lots of horrible side effects and did only 5 cycles in the end instead of 6. In March 2018 it returned and I then was put on Carboplatin and Caelyx, which gave me a life, but did not work completely so I was put on Niraparib which has worked for 9 months. I am delighted from one side, because I was awaiting a death sentence and thought he would say there was nothing else to do, but going through what I went through in 2013 doesn't fill me with joy. On the other side, I have another chance. He was going to put me a immunotherapy trial, but obviously not possible now. Being followed by a nutritionist who is going to try and keep my immune system working through all of this and help me with the side effects.

All the very best TeamTerrier with whatever you choose. Anne xx

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That all sounds promising!! And doesn’t it make such a difference when the Drs actually listen to you and genuinely seem to care and want to be an advocate for you. Best wishes in the new meds .. hugs

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Wishing you the best of luck!

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