Petrolhead6 years ago

Hi Anna

I had been hoping to attend but I do not think I will be able to now.

I was very interested in the genetic testing talk and depending on what was in the talk maybe ask a question.

I was interested in the genetic testing for those ladies with mucinous OC. In particular my question would have been -about the KRAS mutation and if there were any plans to start testing or if it was done anywhere. The BRCA mutations now seem to be almost routine for testing but not other mutations. It would also be nice to know if mucinous ladies could have the test done anywhere (be it private or otherwise)

Would it be possible to pass my question on to the speaker that she may include something about in her talk or answer the question after the talk.

Many thanks

Fay

OvacomeSupportPartner in reply to Petrolhead6 years ago

Hi Fay

I'm sorry you won't be able to make it. I'll take your question to Members Day and ask Dr Angela George for you.

Best wishes

Anna

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Petrolhead in reply to OvacomeSupport6 years ago

Appreciate that. Thanks very much.

Regards Fay

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OvacomeSupportPartner in reply to Petrolhead6 years ago

Hello Fay

Further to your question, you'll be able to hear Dr Angela George's response when the recordings are up, but I just wanted to let you know what she said.

I asked about KRAS and BRAF mutations (which Gwen had asked about) and Dr George explained that these are somatic rather than germline mutations. This means they arise in the tumour, and they are not inherited gene mutations. KRAS and BRAF mutations cannot be passed on to children.

BRCA mutations can be measured in blood as inherited mutations or in the tumour as a somatic mutation, so this is why there is blood testing for BRCA.

I hope this answer is helpful. Do let me know if you have any further questions.

Best wishes

Anna

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Petrolhead in reply to OvacomeSupport6 years ago

Hi Anna

Many thanks for this. It does answer what I wanted to know as it has not been clear to me in the literature. I am now waiting for the online video to appear so I can see all the sessions.

Thanks once again

regards Fay

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85live4ev6 years ago

Hi there, thanks for that,, Cindyxx

Choski6 years ago

I'll definitely try to live stream however in the deepest country we have rubbish rubbish broadband! It's a real shame this fab event is just the week before Tea with Ovacome which I'd already committed to.

Thanks for also putting out the talks etc

Hope there will be something to address the 1 minute BBC 'news' just reported now about research saying women could benefit from having a regular blood test to check for ovarian cancer. No details given, what's that then? Is it the (not 100% accurate) CA125?

Clare

OvacomeSupportPartner in reply to Choski6 years ago

Hi Clare

I hope your broadband enables you to live stream, but if not the recordings might be easier to view and they'll stay on the YouTube channel so you can catch them anytime. Unfortunately I can't make Tea with Ovacome this year but I'm sure it will be a great day.

The BBC report is regarding the UK Familial Ovarian Cancer Screening Study (UKFOCSS). An article has been published in the Journal of Clinical Oncology which is available in full at the following link:

ascopubs.org/doi/full/10.12...

More details about UKFOCSS are available on the UCL website at the following link:

instituteforwomenshealth.uc...

The screening was a four monthly CA125 blood test and a yearly transvaginal ultrasound. The information on the UCL page states a secondary objective is to collect blood samples which can be reviewed to try an identify new tumour markers (ie not only CA125).

Best wishes

Anna

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Choski in reply to OvacomeSupport6 years ago

Thank you for the link and your reply. Great explanation which beat the one I saw on the news!

I'm one of the presenters at Tea with OvaCome and am looking forward to it but can't quite get up to London for both unfortunately.

Sure Members Day will be fab

Clare

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Teresa_K6 years ago

Thank you Anna.

Not sure I will be able to make it but will watch on the link you have sent.

I have a question - my friend who I met through chemo has had dreadful foot pain since completing chemo. She has just been told at a foot clinic that taxol can remove fatty tissue on the ball of the feet. This does not repair itself and is thus permanent. Is this true and is there anything that we as patients can do to help prevent this?

Hope the day goes well - it looks as if it will be great. Thank you so much for organising this.

Best wishes

Teresa

OvacomeSupportPartner in reply to Teresa_K6 years ago

Hello Teresa

Taxol can cause peripheral neuropathy, which is damage to the nerves in the hands and feet. This can cause numbness, tingling and pain. Your friend needs to tell her medical team about this symptom so they can help manage it.

Most people find peripheral neuropathy improves once treatment is over (sometimes it does worsen at first, then improves). For some people the symptoms are permanent but there are ways to manage this with help from pain teams, physio and occupational therapy and other support.

Macmillan have useful information on peripheral neuropathy on their website at the following link:

macmillan.org.uk/informatio...

I hope this information is helpful.

Best wishes

Anna

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Teresa_K in reply to OvacomeSupport6 years ago

Hi Anna

This is separate from nerve damage. It is a different side effect as I understand it. She has the peripheral nerve problem as well. But the fatty tissue has been greatly reduced. Her medical team are aware of the neuropathy, does this term also cover fatty tissue loss.

Best wishes

Teresa

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OvacomeSupportPartner in reply to Teresa_K6 years ago

Hi Teresa

I'm sorry for misunderstanding and not answering your question fully.

I've not heard of taxol being associated with fat pad atrophy on the feet. (Diabetics can experience neuropathy and reduced fat pads on their feet, but this can be part of a complex situation due to their diabetes.)

I will take your question to Members Day and come back to you - it may not come up in the videos if its not directly related to the topic under discussion but I'm sure I'll be able to raise it at some point and I will let you know the answer.

With regard to prevention, I've found this article by an American non-profit organisation which lists some preventative strategies.

ipfh.org/foot-care-essentia...

Your medical team will be able to give you specialist advice specific to you and can refer to a podiatrist for further assessment of your feet if you are concerned.

Best wishes

Anna

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Teresa_K in reply to OvacomeSupport6 years ago

Perfect thank you Anna. I think it must have been the podiatrist she was referred to who said it can be caused by taxol.

Good lock for Saturday.

T

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OvacomeSupportPartner in reply to Teresa_K6 years ago

Hi Teresa

Just to let you know I've contacted the College of Podiatry with the query as well, they are kindly looking into it and I will let you know their feedback.

Best wishes

Anna

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Teresa_K in reply to OvacomeSupport6 years ago

Hi Anna

Thank you so much for asking. It will be interesting to see what they come back with.

It is very kind of you to take the time and trouble to ask

Best wishes

Teresa

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OvacomeSupportPartner in reply to Teresa_K6 years ago

Dear Teresa

I received a reply from the College of Podiatry today. They apologised for the delay in replying - please let your friend know I'm really sorry for the time it's taken.

Their response was that they hadn't found a direct link between taxol and fat pad atrophy. However, because taxol can cause peripheral neuropathy, this could predispose someone to fat pat atrophy. Also, because taxol can be given alongside steroids, the steroids could also predispose a person to fat pad atrophy.

I hope this information is helpful. Please do get in touch if there's anything further I can help with.

Best wishes

Anna

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Teresa_K in reply to OvacomeSupport6 years ago

Thank you Anna. That is very interesting and helpful.

Are the talks on YouTube now?

Have a good weekend

Best

Teresa

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OvacomeSupportPartner in reply to Teresa_K6 years ago

Dear Teresa

Unfortunately there was a delay editing the videos due to unforeseen circumstances for the editor. They are really close to completion and I'm sure they'll be available next week. I'll post in the forum to let everyone know when they're up on the YouTube channel. I'm really sorry for the delay.

I hope you have a good weekend too!

Best wishes

Anna

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Teresa_K in reply to OvacomeSupport6 years ago

Thank you Anna - I thought I was being a bit dim in not finding them.

Best

T

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OvacomeSupportPartner in reply to Teresa_K6 years ago

Hello Teresa

Just to let you know I asked Professor Gordon Jayson about fat pad atrophy on the feet from taxol at our Members Day but he hadn't heard of it. I'm awaiting the response from the College of Podiatry so I'll let you know when I've heard back from them. I'm sorry this question is taking time to answer but hopefully I'll have further information soon.

Best wishes

Anna

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thomas626 years ago

Hi Anna,

Petrolhead mentions KRAS mutation - can I also add the BRAF mutation, and possible testing.

Best wishes.

Gwen

OvacomeSupportPartner in reply to thomas626 years ago

Hi Gwen

Yes of course, I'll add that to the question.

Best wishes

Anna

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OvacomeSupportPartner in reply to thomas626 years ago

Hello Gwen

Just to let you know I've answered yours and Fay's question above to let you know what Dr Angela George said. You'll be able to see Dr George's full response when the recordings are up on our YouTube channel later in the week.

Do get in touch with me if you have any further questions.

Best wishes

Anna

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thomas62 in reply to OvacomeSupport6 years ago

Thanks Anna.

Gwen

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Choski6 years ago

QUESTION FOR EXPERTS PLEASE:

CLEAR CELL OVARIAN CANCER

My background :

I have clear cell and was staged as 1C last year - previous rupture, inter operative rupture and cells in abdominal fluid. Finished chemo 29th July 2016 and recurred in early Jan this year. Now have metastastic disease in peritoneal and lesser Omentum, malignant Ascites and blood clots on aorta to both lungs, am Platinum Resistent am I awaiting to see if I'm eligible for specific clear cell trial.

My question:

I communicate with ladies in Canada and the US where radiation is being used for Clear Cell especially stage 1C., chemo given THEN 20 to 25 targeted abdominal radiation sessions. Plus interperitoneal chemo is also being used for stage 3 clear cell.

When I raised this with my Onc last year - before end of first line treatment, radiation was dismissed as 'something tried in the 80s/90s which gave side effects and hasn't been revisited again, Not recommended'

Are we (UK) behind the times.? Is there any liaison with Canada ? If not why not?

Thank you

Clare Hoskins

OvacomeSupportPartner in reply to Choski6 years ago

Hi Clare

Thank you for your question. I will take this to Member's Day.

Best wishes

Anna

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Choski in reply to OvacomeSupport6 years ago

Thank you Anna

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OvacomeSupportPartner in reply to Choski6 years ago

Dear Clare

You'll be able to see Professor Jayson's full answer to your question when the recordings go up but I just wanted to give you an idea of his answer to your question.

I didn't read out your full history as I was concerned it was too identifiable and the video was going on the internet. I apologise for not reading out all you said - next year I'll know to check in advance for permission if there's a detailed history. I explained you had clear cell 1c and had finished chemo in July, had experienced recurrence in January and were platinum resistant and waiting to see if you were eligible for a trial. I read your question in full.

Professor Jayson explained that he felt you had been given correct advice by your oncologist. Radiotherapy had been tried for ovarian cancer but was not thought to be effective. He wondered if the radiation being used with your contacts was associated with endometrial disease which could explain the difference in approach.

He explained that some people having intraperitoneal chemotherapy had experienced significant toxicity from the chemotherapy, but that the PETROC clinical trial was looking at intraperitoneal chemotherapy effectiveness again and the results are pending.

Professor Jayson's answer was fuller than this and I hope you find the recording helpful but I wanted to let you know now that he felt the advice you had been given was correct.

Best wishes

Anna

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Choski in reply to OvacomeSupport6 years ago

Thank you, interesting response. Good re my current treatment and my contacts are both clear cell too so not endometrial.

Thanks again

Clare

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Choski6 years ago

We need to have access to the videos as the live stream was patchy and couldn't hear the audience questions

Plus you will be aware that Professir Jaysons presentations are most interesting and there is a LOT of interest in these in particular. Please put these up ASAP.

Very interesting results presentation, .I completed the survey and give full permission for my responses to be shared to allow my area, hospital to improve its service. I applaud Professir Jayson wanting to improve his area and hope the Trustees agree too.

I'm going to post this separately too

Thank you again for the live stream and to all the presenters even if I didn't manage to see them all due to issues.

Clare

Cropcrop6 years ago

Thank you for streaming the meeting via YouTube. Unfortunately the stream kept buffering I have really good broadband speeds and still lost large parts of the event in particular when the stats were being quoted for clear cell which has particular interest to me as I was diagnosed clear cell.

I was unable to to received the initial part of the sessions and totally missed prof. Jaysons initial contribution, I know other ladies too were struggling to access the YouTube stream. I was able to catch the second part of his second presentation, he was miked but I was unable to hear anything and just got white noise but then was able to hear part of his answers and questions session but was only able to hear the answers so the information was unclear as the questions were not heard and the relevance of the answers confusing.

Would it be possible for the whole meeting to be streamed again and would it also be possible for a transcript to be made available to us.

I would dearly have loved to attend but London is such a long way to travel for lots of us, is there any possibility that future events could be held in other parts of the country so we 'northerners' could also take part?

Many thanks for the opportunity to take part albeit via the interweb and I look forward to being able to access future events. Jane