Hello
Asking for my mum.
2 years ago Mum had a full debulking after being diagnosed with Stage 3b low grade serous ovarian cancer and has taken letrozole since the operation. We are now waiting to hear back from a biopsy from a large cyst that has appeared in her peritoneum cavity.
Before going ahead with anymore treatments Mum is thinking about asking for a second opinion with Dr Charley Gorley at Edinburgh. Has anyone had experience of this process ?
Thank you
Catherine
When I did it my oncologist made the referral on my request. There’s information on the Ovacome website I believe xx
Hi Lyndy - Thank you for your reply - hope your treatment is going well x Yes the info on ovacome is really helpful.
Hi
I know a few people in the UK with LGOC have successfully got second opinions with Dr (Prof?) Gourley. As LGOC can differ to HGOC, including the recommended treatment, it should be acceptable to ask for the second opinion from someone working specifically with LGOC.
Your oncologist should be able to arrange it for you. I think some oncologists also consult with Dr Gourley for advice on LGOC.
I have LGOC, am currently stable, but have in my plans that I would ask for his opinion when needed.
So far everyone I know who has asked for it has got the second opinion with him.
Good luck
Hi Koffekat - thank you so much for your helpful reply. And yes it is Professor Gourley :).I am happy that you are currently stable and I hope this continues for you x. It is comforting to know that Professor Gourley does accept second opinions. Once we have Mum's results from the biopsy I feel our next step is to ask for a referral for a second opinion.
Catherine xx
There is also Dr Banerjee from the Royal Marsden who specialises in low grade. I’ve recently been referred to her for a second opinion. I asked my Onc to refer me which she did.
She's my oncologist and is excellent
I had a meeting with her last month and she was brilliant. I’m lucky if I get five mins with my Onc as she can’t get me out of the door quick enough but Dr Banerjee and her colleagues had time to sit and listen and answer my questions which was very reassuring.
HI doodoolatrice,As another low grader - 8 yrs on from diagnosis - non on a clinical trial at the Christie Hospital. Can I ask I anything Dr. Banerjee said would be useful for all us low graders to know/act on! ?Thannks. Gwen x
Hi Gwen, I’m nine years in and I’ve been on trametinib for the last year. I’ve had some minimal growth recently and stability on other modules but as my CA125 has increased my Onc wants to put me back on chemo. I wanted a second opinion on chemo as I’m not sure it’s right for me as it hasn’t worked before and I would prefer to continue with trametinib. Dr Banerjee has ordered a scan and I’m due to see her again in a couple of weeks for her opinion based on the scan results. She is doing a trial which you will consider me for if necessary.
Hi again doodoolatric,Thanks for your reply. So pleased you are 9 yrs in - keep it up. The Clinical Trial I'm on at the Christie is FRAME - a phase 1 - combo of Defactinib (FAK Inhibitor) and a dual RAF/MEK inhibitor. I have just completed my 10th month 3 weeks on treatment 1 week off treatment. The Christie really look after you well. There are side effects that are listed. Perhaps It's worth talking to Charley Gourley about a Trial - there is a new one - similar I think - one of the hospitals is the Royal Marsden - called RAMP which is probably the one Dr.Banerjee mentioned to you. I asked to go on the FRAME trial - my lesions reduced by about 22% plus at last scan. I believe FRAME is still recruiting at the Christie - I think these 2 Trials are similar. Like you Chemo didn't do much for me although it wasn't totally negative but ended up with Sepsis and hospitalised for a week. Let us know how you go on please. Best wishes. Gwen x
Hi Gwen yes it’s the Frame Trial she might put me on if she decides Trametinib isn’t working for me. I’m going to see her again at the Royal Marsden next month. I hope it continues to work well for you.
Hi again doodoolatrice,
Please keep us updated. It's interesting and very useful to know how we are faring and how we can keep moving forward. Being low graders not many of us about as we know. Best wishes. Gwennx
Yes of course, will do. How have you found the side effects ?
Hi again doodoolatrice,Side effects for me - mainly full body red rash that was incredibly itchy/scratchy. It wasn't on my face though. I was told that it was showing mainly on patients faces. I was given Betnovate steroid cream which I had to apply every day. The team had to reduce my drugs slightly because of the severity of the rash. Also some patchy hair loss for which I was also given a steroid scalp/hair wash. This has all now improved but I am still getting a body rash but much reduced. The other symptom for me has been a very dry mouth (when I have dry skin/mouth anyway) but again was given a mouth spray which helped. I did however resort to chewing sugar free chewing gum which really stimulates saliva production - again due to reduction in my drugs this symptom has also reduced but I still have to use the mouth spray at times and I keep up with the chewing gum regardless. If you go on the Trial you will be given a list of possible side effects to look out for - some will only show in blood tests - the Trial Drugs team see you weekly initialy for first couple of months for regular bloods, weight urine and review with Dr. Also regular CT scans. After first couple of months the appointments tend to be once monthly unless you have a problem. I have an allocated nurse who I can e-mail/ring if I have any problems/queries, etc. The Team look after you very well. Initially, it is quite demanding of your time but as I say after first couple of months visits tend to be once monthly. Other than this - you will probably have a CT scan every two months. It also takes a little time to get your head around the tablet schedule. The FAK/MEK tablets (4 off) you take twice weekly once a day after fasting so I take them at 7 am upon rising. They have to be kept refrigerated. The other tablet Defactinib |(FAK) is one tablet taken twice a day every day of the week. This has to be taken after food so I take few mins past 8 am and same in the evening. You have to be consistent. You are given a diary card for recording and you have to take it back to the Trials Team each month along with remaining tablets. It does take some time to get your head around things and your routine going but then it's straight forward. There are people with other cancers on this Trial. Hope this information makes sense and is helpful to you. Best wishes. Gwen x
Thanks for this Gwen. The side effects sound similar to the ones I get on trametinib so hopefully they will be manageable. I am concerned about the travelling, as it takes us 3 hours to get to the RM and I work part time as well, but you’ve got to do what you’ve go to do 😆. I’ll keep you posted. Regards Kerry (doodoolatrice is some silly pet name hubby came up with years ago 🙄)
Hi Kerry (doodoolatrice), I really like your pet name - it's obviously stuck!I have to travel from one side of the Pennines to the other (From Yorkshire over to Lancashire (1.1/2hrs minimum each way) ) and I always have an early appointment at the Christie i.e. 8 or 9 am. I could ask for a later time but it does suit me as not much traffic on roads at 6.30 am. Maybe you can work around your hospital visits re timing. I'm sure the hospital will accommodate you as best they can. Yes initially you spend quite a lot of time at the hospital - a lot of waiting for different things to take place - and it is quite tiring but I am 72 yrs old so only to be expected. Also maybe the RM operates a different regime re Trial schedule so it is a "wait and see|" thing. Take care and have a nice day. Gwen x
Hi Thank you that’s comforting to know - I read some of the great work she is doing
My mum also has Low Grade and has been at the Marsden for just over 10 years. It was her 11 year diagnosis anniversary yesterday!! Mum was initially under a local oncologist but they referred her to the Marsden as they couldn’t quite work out what was happening. It was then at the RM we understood mum has low grade. Ive posted a bit on here as mum is on a clinical trial which has had some great results. Happy to answer any questions though if you have any. I know there is also one other lady on this site on the same trial xx
Hi Charlotte - that’s great news your mum is responding to the clinical trials. I have read some the the work Dr Banerjee is doing. Since Mum’s diagnosis I think I have read everything I can about this LGSOC - presently we are waiting to find out if it’s cyst is malignant or benign- then will look at maybe a second opinion.Can I ask what is the criteria to be accepted into the clinical trail Charlotte ?
Catherine x
It’s the Frame study. I think they may be running it in the Christie now (I could be wrong). The key thing I remember is that the tumour had to have a K-RAS defect/mutation.
Just had a quick look and it is on the clinical trials website now - clinicaltrials.gov/ct2/show...
Good luck with your mums results. If you have any questions, you can always drop me a message. X
Thank you so much Charlotte - will have a look xx
Catherine - I think Gwen, who responded above, is also on the same trial as mum. X
Hi Charlotte, Great 11 years on - so pleased for her and the family. Yes I'd think she's on FRAME trial - RAMP is too new - how long has she been on the Trial and results? Best wishes. Gwen x
Hi cath-koala,Good luck with referral to Charlie Gourley - I've spoken to him over the phone in recent years - he's lovely and so willing to give you his time. \Other names in keep in your armoury for possible future use if required - a Clinical Trial as I've written above to doodoolatrice - but also, as happened to me, my onc and team refused a 2nd op for me as said they couldn't do it, so I consulted with the brill surgeon, whose name you may be aware of, Cristina Foutopoulu working in Queen Charlotte's - London. She's brilliant. But as I say just to give you information in case you might need it for your mum. Please keep us updated - not many low graders about! Gwen x
Hi Gwen - thank you so much - yes that’s a good name to keep in mind too. We had to find out so much about LGSOC on our own when mum had the initial diagnosis - yea it’s very rare so I’m pleased to have found you.Mum’s was actually in the Fallopian tube. This cyst that has been found in her peritoneum cavity apparently is quite rare too - it measures 15 cm by 10 cm. I will definitely stay intouch to find how you all are doing and to keep you up dated with mum.
Take care x
Catherine
Hi again cath-koala,
You will need to find out if her cyst is also LGOC or if, something else, what it is!
Gwen x
Thank you 🙏 - yes we waiting for the pathology report- it’s the waiting which seems forever that’s gets me. Xx and thank you so pleased to have connected with you x
Hi cath_koala,Always the waiting!! I feel that because LG is a rare type of OC we need to keep sharing information when we have it. So, it is lovely to connect. Best wishes to your mum and yourself. Gwen Xx
HI for you low graders info. Just picked up an article in today's Sunday Mail. It was reporting on current Trials combining 2 drugs targetting specific cancer cells in low grade oc - using a MEK Inhibitor and the drug Defactinib. It's success in keeping tumours at bay is causing experts to say this dual treatment could soon become the "routine standard of care". As you know I am on the FRAME trial and have seen my tumour burden reduce. Gwen Xx
Experiences with caelyx / carboplatin as second line treatment (for a 70 year old lady)?
Continuing my PPC journey and getting a second opinion
Going for second opinion at Royal Marsden
Help needed!!!! Ovarian cancer Reacurrance treatment
carbo/ caelyx rising ca125
