Hello Teal Sisters.
I’m very keen to connect with others diagnosed with Low Grade Serous Ovarian Cancer. Please would you let me know if you have this rare sub-type of Ovarian Cancer?
I’m currently on my third recurrence and having more chemo. I’m anxious about what is next and wondered what treatments you are having for metastatic disease.
Thank you xx
Hello Levanah. I've been originally diagnosed with stage 3a borderline & low grade serous OC, and have since recurred once as low grade serous OC, in my pelvic lymph nodes. Only had chemo once (after recurrence), but surgery twice. Am currently on Letrozole and Avastin.
Sorry you're experiencing another recurrence. Which chemo are you having?
Fingers crossed it works. All the best. Maus
Hello Maus123 .. I’m having Carboplatin alone for four or five cycles if I can get through them. My ca125 rose from 167 three weeks ago to 201 this week despite first chemo.
I’m interested you’re having Avastin. Prof Gourley whom I spoke to this week advised me that that drug is having good results with Low Grade. I love in Hampshire though and not Scotland so that means I might not get Avastin on NHS. I certainly can’t pay privately for it though so hoping I can obtain under compassionate grounds. Lots of love to you Maus and thank you for your reply xxxx
Actually it's not yet confirmed whether my insurance will continue to pay for Avastin past the 22 doses which are part of the OC guidelines here in Germany. I will procure a recommendation from my oncologist next month (or hope so, at any rate), and see what they say. Like yourself, I couldn't pay for it on my own. Fingers crossed. Xx. Maus
Thanks for sharing! I am really interested in the Avastin/Letrozole combo. I read your profile and saw that your CA125 continues to drop- that's wonderful! I hope it continues to help. My friend has been on that same combination and steadily reached NED from Stage 4. They don't seem to be commonly used in combination, so it is very curios! x
That"s interesting to know indeed. Let"s see how it works out for us. 
xx. Maus
Hi - I am low grade, history in my profile. There is a specific low-grade group on FB but you will quickly learn who the low graders are on this site- Nicola
Hello Nicola. I’m an Admin on the biggest Low Grade Group so hopefully that’s the one you’re talking about. I mentioned it to Anna one of the Ovacome team a few days ago .
I’m trying to get the Low Grade ladies to show their presence because at the moment Ovacome don’t know how many of us there are, plus what our specific issues are. I’m kind of trying to instigate that. We need to put Low Grade in the subject box every time we write on the forum so that they are better able to monitor things.
It’s good to see you on here Nicola. Lots of love 💗 Diane xxxx
Hello Diane - I hadn’t made the connection, sorry!! I have just seen the matching photos. We spoke via that site last week. I have been on Ovacome for many years and like it a lot, only recently joined the LG group which is fantastic of course. I had a difficult winter so bit cheesed off with this disease, having managed to live relatively normally for 10 years. Look forward to staying in touch. Will add LG when I post, good idea. Thank you for raising this, it’s a really good idea. Nicola x
Glad you recognised me. Our fb group is brilliant but for the cancer charities to help us and know what our issues are, we need a presence here. After speaking to them I vowed to join this forum and will encourage all Low Graders to use the subject box to identify us from other ovarian cancers. I think Alex Coppick had started the ball rolling so this is really credit to her for identifying a way of sifting Low Grade out. Much love to you Nicola xxx
Levanah, could you let me know privately where I can find the LG facebook site? I'm nt sure I recognize this reference! Thanks.
Hello Levanah I was diagnosed with 2a low grade serous in Oct last year and just finished 6 rounds of carbol/Taxol its in my bio. So sorry you are going through another reccurance.
Best wishes and hugs x
Lesley
Hello Levanah, I was diagnosed in October 2018, had a course of carboplatin and am now on Letrozole for 2 months. Check up next week and am feeling anxious but what will be will be. Sorry you are having a recurrence, it's the not knowing that is the problem with this disease. Best wishes x
Hello newfoundland.. it’s good to meet you here . Good luck with Letrozole which I know has excellent results for many including me. I only stopped it due to side effect profile .. mainly severe joint pains . Good luck with your checkup. Let us know how you’re doing .. if you write in the subject box low Grade Serous Ov Ca we will be identifiable to the ovacome team . They want to monitor the specific issue of Low Graders . Much love 💗Diane xxxx
Thank you Levanah and all the other friends, it is good to know I am not alone in this battle. I am full of ascites at the moment and finding it hard to get about, but hopefully his will be sorted at my clinic appointment next week. It seems to me to be one step forward and two back. Will keep in touch xx
Oh newfoundland I’m so sorry to read this. Are they going to drain the ascites for you ? Try if you can to make sure you eat enough protein in your diet, even if it means having fortified protein drinks . Ascites fluid contains nutrients that are removed when the fluid is drained. It can result in low albumen levels and swollen legs. Also gently massaging your Lymph nodes in your groin in an upwards direction can help keep the lymphatic fluid moving to prevent swollen legs from lymphoedema .
I’m holding you in my thoughts .. please keep in touch . Don’t forget to write Low Grade Ov Ca in the subject box first . Big love to you xxxx
Hi I’m Amanda I am also low grade 3c had surgery , chemo and immunotherapy now just waiting on my 3 monthly scan result - diagnosed 2017
Hi Amanda.. are you having immunotherapy as part of a trial? What is the drug you're on?
Hello Amanda. I’m glad to meet you here xx Good luck with your scan results .. could you let us know how you get on on here. If you write Low Grade Ov Ca in the subject box we will all start to be more identifiable to the Ovacome team who want to know more about our specific issues.
Lots of love 💗Diane xxx
Also Low Grade serous, 3C. I had frontline carbo/taxol, and was found to be platinum resistant. I was put on an estrogen blocker, Tamoxifen, and then aromatase inhibitors Letrozole and after that, Exemestane because I was ER positive. Each of these worked for several months to a year. When progression was identified, they switched to Caelyx (Doxil) which didn't work for me. Now I'm on weekly taxol. Initial CA125 marker dropped significantly after first cycle. Hoping this one is the charm. Good luck with your treatments and keep us in the loop on how you're doing.
Hello Busbee3. It’s lovely to meet you here. Sounds like you and I have followed a similar treatment plan... where do you live? I’m in Hampshire. I spoke to Prof Gourley and he suggested weekly Taxol with Avastin so that might be an option for you? Good luck with it all my lovely. Much love 💗Diane xxxx
Hi Levanah. So glad you started this thread! I'm located in Canada. Avastin isn't a good fit for me due to bowel involvement. The risks of a bowel perforation would be high for me, so my oncologist isn't pushing Avastin for me. Maybe later when all else fails...this is a difficult decision for me. There aren't a lot of treatment options for LGSC, and chemo works for some, but not all, and not always really well. I'm praying for something new for all of us! Tumour profiling is very important to have done to find any mutations related to low grade. If you can get it done, it's worth the money to have this information. It can open up treatment options for you that you might not know you have!
Hey there, Levanah.
I have LGSOC. Diagnosed in 2007. first 7 years in remission. In 2014 I had my first recurrence and had debulking surgery and went on Tamoxifen. That bought me about a year and a half. Since then I have been on a lot of different drugs and regimens. I think I'm on my 4th recurrence now (I've lost track).
I was in the middle of 6 cycles of Cis/Gem/Avastin when my CA125 spiked. Right now I am taking a 2 week break and then starting Doxil/Avastin at the end of the month.
Overall, aside from the cancer, I'm pretty healthy. I work full time and make sure I keep to a normal routine.
I do actually keep track of everything and if you want the whole breakdown I can provide it. My cancer did metastasize a couple of years ago to the plural fluid around my lungs so I'm right there with ya sister.
Hang in there,
Superkim
Oh Superkim, thank you so much for reaching out to me. We certainly have been down a similar path.
There is talk about me possibly have Doxil but as yet Avastin has not been confirmed. Where do you live? I’m in Hampshire and deemed not to be eligible for Avastin but Prof Gourley suggested applying through compassionate grounds.
I’m so pleased to meet you here. Lots of love and good luck with your next steps 💜 Diane xxx
Hi Diane,
I am in North Carolina in the US. I have been on Avastin a few times before. Once on it's own, twice with other drugs (Carbo Taxotere and Gemcitabine Cisplatin). It has been a little tricky to get as it's ridiculously expensive, but my docs and I have managed to get it - this last time directly from the manufacturer. Good luck to you too!
Hugs,
Kim
Thank you for your encouragement Kim. Fingers crossed I can get access to it then after all. Sending you masses of hugs 💜 xx
Hey Kim, I am in NC, too! Get treated in London, but live in Asheville.
Hi Levanah. My mum has LG, ER positive, RAS mutation. Diagnosed 3c in November 2010. Had 9 cycles of chemo, followed by 5 years letrozole, followed by tamoxifen. Been on a phase 1 trial at the Royal Marsden since January 2018 which has seen a reduction of 57%. Charlotte xx
Hello Charlotte xx I’ve heard of trials at Royal Marsden but I wasn’t eligible as I’ve had a new primary breast cancer in 2018 on top of everything. Did your mum have genetic tissue testing on the NHS ? I’ve been very interested in having it done as I know that there’s often mutations in KRAS, BRAF and so on. They routinely check for genetic mutations in the US.
Regardless though, I am so happy to read how well your Mum is doing on this trial. It’s is wonderful xx
Much love to you and your Mum,
Diane xxx
Hi Diane. I'm sorry to hear about the breast cancer too. Its not linked to the OC?
Mum is under the Drug Development Unit in the Sutton Royal Marsden. She used to be under Prof Gore at the Chelsea/Fulham Royal Marsden and they tried to get her on the LOGS trial only for the pathologists to be undecided as to whether Mum's cancer is low grade or not! Anyway, we were then referred to the DDU. The trial drug is targeted at the mutation, not the primary site, which was why the testing was done.
Are you at the Marsden? xx
Yes that’s what I was interested in when I went to the Marsden earlier this year. I went there for a second opinion but am in Southampton. I would’ve had genomic tumour testing and entered into an appropriate trial but due to a recent second primary I was excluded. I’m glad your Mum is able to access a trial for the target drug. Good luck 💜 xxx
Hi Levanah,
I have low grade serous - diag. 2014 so 5 years plus on. Have had 2 surgeries, 1 round of chemo - taxol/platin and 2 lots of hormone inhibitors- currently on Exemastane (Aromasin). My cells are oestrogen positive/progesterone negative. Feeling very well currently and hoping this continues. Gwen xx
Hi Levanah,
I was also diagnosed with LGSOC. However, due to the low response rate to chemo I opted for surgery only and now take Letrozole. Marsden was not a good fit for me (told me I was inoperable - and wanted to do chemo, which the studies don't support, in my opinion). My surgeon was Christina Fotopoulou - Professor at Imperial and oncologist is Jonathan Ledermann - Professor at UCL. Both are thought leaders in LGSOC. I have been NED since September 2016. I went from "inoperable" to disease free thanks to my surgeon.
Feel free to message privately.
Best wishes,
Millie
Thanks Millie.
No, the Marsden didn’t do me any favours really and sent me away to wait for six months with a view to second debaulking . I was happy to leave it and luckily I didn’t. I’m having Carboplatin now on it own and then after that? I hope for Avastin. It’s so good to meet you here. I’m sure we’ll chat again soon. 💜 Much Love xxx
Hi. Diagnosed LGSOC 3b in 2014. Had surgery but residual disease remained. Recommended no chemo and I agreed. Been on watch and wait ever since.
X
Hi again Levanah and CharlotteSo_UK
Am interesting in what trials are or may be available at the Royal Marsden (or other). Can you offer me any information please. Best wishes. Gwen x
I really only know of Royal Marsden or Edinburgh University . If an admin or if a nurse on here could answer that any more fully that would be good. I don’t think there are any specific trials until Professor Charlie Gourley in Edinburgh launches his two trials.... one for new diagnosed Low Grade and one for recurrent Low Grade disease .. x
Hi Gwen. Mums trial is not specific to ovarian cancer but is targeted at the mutation. We found out about it as mum was an outpatient at the Royal Marsden anyway. I’ve never seen it ‘advertised’ on the trials websites anywhere. We’ve no idea what the drugs are - only that they are a FAK and MEK inhibitor. Xx
Hi Levanah, Thanks for your info. It's good to be aware of names and trial possibilities (if and whenrequired) for ladies with low grade. Do u know when Charlie Gourley is going to launch his 2 trials?
Hi CharlotteSo_UK, Thanks for the info. I am aware of MEK inhibitors for ladies with low grade but not heard of FAK. Even though I am currently NED I like to keep up with up with things relating to low grade.
Best wishes to you both. Gwen xx
Hi Levanah, it is good to be in contact with you on this forum too. I hope things are improving for you. I thought I’d let you know that I am trying to find out more about a trial for LGSOC which was mentioned to me on another forum using CDK4 inhibitors. I keep chasing them but not having much success. My onc is interested if I do get more info. If I get further I will let you know.
Thank you for starting this thread. I’m also grateful for the mention earlier . I’m a bit scatterbrained with where I am and don’t always see the best way to make progress but you did. Bless you.
Love Alex x
Hello lovely. It’s good to see you on the other side haha .
Thank you for the info Alex . I will await any info you can find out . Having Low Grade is like having a full time job. We are always having to research everything just to find a way through. That all takes time.
I’m still undecided on the COC regime . I just don’t know what’s best anymore.
Big love to you Sister xxx
Hi Levanah. Only just joined this forum and reading through some of the posts. I am a low grader. Diagnosed December 2019 with 1c1. Had already had my surgery in October 2019 and currently having regular screening with my oncologist. Know I shouldn't but I do worry a lot of the time about recurrence, manage to convince myself it's come back. Suppose too much time on my hands during lockdown!
Hello Jannibags. I’m sorry that you found yourself in this situation. I do understand the worry . We tend to live between three month follow up intervals don’t we? I’m glad you’ve joined the forum. If you’re on Facebook we have a group for Low Grade for which I’m one of the Admins. Also my friend in NZ founded a charity specifically for Low Grade awareness and research funds worldwide. If you’re interested let me know and I’ll send you details. Stay safe and well honey. Much love, Diane xx
Hi Diane! Thank for your reply and encouragement and, yes please, I would be interested in both of those.Hope you're staying safe and well too. Jan. xxx
Here you are Jan... both are Facebook links . The Cure our Ovarian Cancer has a website with some excellent research resources. Hope they are helpful
facebook.com/CureOurOvarian...
facebook.com/groups/1007723...
Much love
Diane xx
Hi Levanah, I have just joined this forum and am trying to navigate my way around. I have been on the Facebook page. Will try to add to my bio if I can work out how to. I am LGSOC, first diagnosed 1994, recurrence in 2017 and just entered 2nd recurrence, have started Trametinib and it’s been a real struggle with the horrendous face rash. On a 2 week break to heal before I restart on a lower dose this week. Dreading the side effects but I am reading positive responses to this drug so fingers and everything crossed.
Glad to have found this forum, I’m already reading experiences I can really relate to, initially on first recurrence I felt like I was the only one and a very rare case but sadly this isn’t the case.
I hope you are well, look forward to chatting, Anne xx
Hello Anne, it’s Diane here. I’m so pleased you found the forum and the fb page. Have you found the Low Grade support group fb page? I’m an admin for that . If you’re interested, I’d be happy to post details for you.
Also my Podcast “Living with Ovarian Cancer “ is available on all podcast places. I’m in the process of getting Trametinib myself. I had a bowel obstruction 3 weeks ago that was so painful. My ca125 went up too so my oncologist is thinking Trametinib whilst it’s still available for us (because of covid). I hope that your facial rash heals up so that you can restart Trametinib.
Much love to you and thank you for replying xxx
Hi Diane, I’ll look out for your podcast, I think I’m on the fb page, there’s a couple I found. I met a few ladies at an ovacome day and they kindly joined me up to their whats app group so I’ve had some great support. My local cancer support centre are amazing and now I’m back in treatment they’ve offered some therapies to help deal with the latest side effects.
I’ve had a 2 week break from Trametinib and will restart on Tuesday, my reaction was more harsh than most my team have seen, I’m hoping the lower dose is more tolerable.
Thanks for the warm welcome DIANE xx
I’m so so happy that you’ve got such good support. I’ve found Ovacome to be so very supportive abs helpful. I would recommend always to contact them if ever you get stuck. I promise they will help.
I do hope that you’ll be better with a modified dose of Trametinib Anne. We’ll be Trametinib buddies soon as I’m due to start too .
Big love to you Teal Sister xxx
Stage 2 low grade serous ovarian cancer
HIGH GRADE SEROUS OVARIAN CANCER
Trametinib low grade cancer
