Hi I was diagnosed at 49 with stage 3c LGSOC. I've had debulking surgery ( full hysterectomy, and removing lining of liver and bladder, omentum, appendix, spleen and sigmoid colon). Currently ca 125 of 12 and no disease. I'm trying to decide whether to continue with avastin as maintainence therapy. Apparently I need maintainence cos I'm stage 3c. The problem is that Avastin is not so effective if there is no residual disease and in low grade it may only extend remission. The alternative is letrozole a hormone therapy. There is suggestion from retrospective studies in the USA (gerhenson from md Anderson) that it extend remission and survival.
Has any low grader had good results with Avastin or hormone, any advice in my decision and experiences very welcome. This is my first post. It will be great to connect with other low grade people.
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Thanks Clare. I will investigate Inspire - sadly though the USA don't use Avastin in first line therapy and maintenance like the uk. It's all so imperfect isn't it. You have to go with your gut much more than expected.
Hi there - I was diagnosed with early stage Fallopian Tube cancer in 2014 at the age of 54, and had standard carbo/taxol regime as a prophylactic measure, after which I was in remission.
A year ago, my oncologist suggested trying Letrozole after rising CA125 readings for 3 months suggested that all was not well, and I was really not ready for chemo again. I was up for an alternative, and so I was prescribed Letrozole for 3 months. Unfortunately this was stopped after a scan showed definite recurrence. I believe it works well with some people however - and for me, there were relatively few side effects. I've not had Avastin (yet) so can't comment on the difference.
Hi I'm sorry that you have the recurrence. Sadly it's the nature of this type of cancer. Thank you for your reply. You have confirmed what I was told, hormone therapy has less side effects.
I also have low grade serous and at this point in time I'm on both Avastin and a hormone blocker, for me Tamoxifen. I have only 3 more Avastins left. I recently moved back to the UK from Norway and was not expecting to receive Avastin here but I have been offered to complete the treatment. As I have very little side effects I thought I would. My new oncologist referred me to his colleague in Edinburgh who has a interest in low grade and is leading the LOGS trial. I met with him and he was very enthusiastic about Avastin and low grade and was talking about some recent info that showed it was very positive for low grade. I haven't seen that info myself yet.
I also read about the info about hormone blockers and pushed my Norwegian doctor to prescribe it. The special oncologist here said he would agree with me being on it and the retrospective study in Houston showed taking it reduces your recurrence by 70%!!!! Huge amount.
I was however started on Letrozole but I struggled with it. It caused arthritis in my wrists so I was changed to Tamoxifen and very little side effects with that (so far)
It's far too early days to know if it works as it's only been over a year since I was diagnosed but I feel I well and enjoying life so that's all I can ask you.
There is a few low grade serous on this site but as Claire said the Inspire page has a special subsection for low grade. It was from the group I found the info about Dr Gersheron and the hormone blockers.
Happy to talk about anything just give me a shout.
Michelle this is amazing. I have been asking why I can't take both avastin and the letrozole concurrently and you have been doing just that. I wonder if it's because you started treatment in Norway.
I know of the person that you have seen in Edinburgh I have been wondering whether I should see him I think I will now. I knew he was a fan of avastin but not the hormone. My oncologist keeps dismissing the hormone work.
I am having the arthritis like symptoms on avastin. Some younger women develop these symptoms 2-3 months post chemo anyhow but mine is linked to avastin. So I might as well try the hormone.
Do you mind if I ask? Do you have disease at the moment i.e. Recurrence. One medic said they wanted to hold back the hormone til I relapsed - that's why I ask
I must say I do get a little bit of arthritis with Avastin, on my ankles of all places but as long as I'm exercising it's fine. I find when I stop exercise the problem increases.
I was in Norway with my husbands work and had health insurance and was allowed a 2nd opinion . The company sent all my info off to America and they also said to start the hormone blockers while on Avastin.
I'm not sure what i class myself as. I had a clear scan last June (post chemo) but my ca125 was still high at 58 however it has slowly fallen since then, last figure was 32. (Interestingly in Norway 50 and under is seen as normal for ca125). Always nervous to whisper the letters NED. I'm happy with the numbers falling long may it continue.
The data suggests that your less likely to have a reoccurrence if you take the hormones. I would rather try to prevent it than wait to fight it. I posted a link to the research on here. Look at my posts you'll see it.
I also do the COC protocol which is something else. It's a private London clinic that uses drugs that currently being used to treat other diseases like diabetes for cancer treatment. I'm going for a multi pronged attack and hitting it from all angles. My oncologist is very supportive and says there's some very good evidence with these drugs, however the Edinburgh guy less so but he said they won't do me any harm so happy for me to be on them.
Dr Gourley was saying that because low grade serous is still a relatively new disease they are still learning about it. I'm sure there will be lots of changes to treatment over the coming years as the data from these studies start coming in. Dr Gourley is participating in a trial using hormones instead of chemo on diagnosis and first line treatment. If that's positive then chemo would not be the front line treatment.
He said if I was to reoccur my options would be further surgery (if appropriate), more Avastin (I have private health insurance that would allow this i would not get it on the nhs), changing the hormone (a few to choose from) or taking part in the LOGS trial.
As a weird side info my youngest daughter was diagnosed with a brain tumour 7 months before I was diagnosed. Hers was a benign tumour that we were lucky enough to get totally removed. However I'm on a support group for parents with low grade BTs and there are a number of kids on the same drug as the LOGS trial as the structure of their BTs and low grade OC is the same, or very similar. Because both of us had unusual cancers with a short time we have now been referred to genetics to investigate further. It will be interesting to see if they find anything out.
Thank you so much for your reply. I was so excited to find someone in a very similar situation who is being proactive about their treatment. You posts have really helped me. You have really been through the mill with your daughters tumour too and I agree it is strange that there has been two low grade tumours.
Like you, Ive started on Avastin privately. I had USA reviews to help me understand I was gettign the global gold standard recommendations for this stage of my illness and because I wanted to speak with a low grade specialist. So Prof Gerhenson has been a godsend for peace of mind. Its also how I knew of Gourley and that he is the best low grade specialist in the UK.
I agree a multipronged approach . Whilst I have no evident disease (although I'm sure its there at the cellular level), I tackle this cancer through exercise, weight control, stress management and good nutrition with the conventional treatment. I believe this can prolong remission and life. I'm still settling into this DIY integrated approach to my cancer.
IM going to look over your old posts and find more about the COC protocol. I already tap into a London based nutritionist who is also a qualified dietician.
As an aside whilst there is no point in sequencing our tumours now because there are no treatments (if we are BRCA negative), I'm about to do that because when it comes back, if you test again - you see how it has mutated. Also it might throw up a treatment that is now appropriate but wasn't before. Ive also have a panel done on my blood.
Thank you again for responding to my post. I feel less alone. I'm delighted to find someone taking avastin at the same time as hormone therapy as I was asked to take them sequentially. I see the merits but like you like the idea of tackling the cancer on more than one front at a time to hopefully stop it getting a hold again. So I will speak to them again and may now get the referral to Charlie Gourley that I was holding on until I had something meaningful for him to advise on.
Hi there - I am a fellow low-grader, diagnosed in Jan 2009. I took Letrozole and thought it was great, no side effects whatsoever and it did slow down growth. I wish I was back on it now. I have not had Avastin and not been offered it so interested to read from anyone else here with feedback. I seem to only read about the negative side effects of Avastin and not the good bits. I am about to start more chemo but then keen to find another hormone blocker afterwards. Best - Nicola
Hi Thanks. I guess we all respond differently to the drugs but least but sharing our experiences, we are better prepared for what happens. It's nice to hear that hormones are effective in practice with people as there are so few of us that the large trials haven't happened yet and they will struggle to get enough of us to do them, so all we have is our doctors experience with the bits of imperfect evidence that's around.
I hope your chemo goes well. I feel heartened that you were diagnosed in 2009 have had effective therapies albeit you now need chemo. I had a low response to chemo but was grateful that it at least held my disease stable until I had surgery. Good luck. Ps I don't know enough about how effective they are but I have heard mek inhibitors are in trial for recurrent disease...a low grade specialist mentioned them as a possibility later down the line
Hi I was very interested in Dr Gerhensan study on Letrozole as well but when I asked them about it the Marsden they said they would only use as treatment not as maintainence. At the time there argument persuaded me but I'm uncertain now as really welcome having a maintenance drug. I'm possibly going on the LOGS trial, is anyone having good results on this? Tracey
HI Tracey It's clear that there is a difference in the use of therapies between the UK and the USA. Some because of regulatory issues eg Avastin isn't licensed for first line use by the FDA; others by funding, again Avastin funding isn't easy.
All I can tell you is that Gerhenson himself recommended me to have 2.5mg letrozole per day indefinitely as maintenance after my primary chemotherapy. So there seems to be a difference for you to discuss with your clinicians.
Be aware though that my UK oncologist who is in the Christie/Marsden network says I have been offered maintenance after my first treatment (I'm in my first remission) because I was IIIc at diagnosis. He wouldn't offer it if I wasnt so advanced.
The Marsden who are my UK second opinion people, have told me the aim is serial remissions which is why they sometimes, 'save therapies til later'. IM still exploring this as I think it could be better to tackle the cancer with Avastin and Letrozole concurrently.
Hope this helps although I know nothing about the LOGS trial
Thanks Agility I'm going to bring it with them when I see them next week. I'm 3b and just been told I've recurred for the 2 nd time so am just having to look at treatments now only anyway. I keep hoping there's some amazing drug out there that I don't know about ! Tracey xx
Hi Agility. This post had been interesting and informative reading. Can you explain to me why the Marsden would "save therapies for later" ? Is it because chemo is more "tried & true" and therefore more likely to produce effective results, whereas therapies are for after, when they're running out of ideas? Thanks. Pauline
Hi nice to hear from you. The Marsden comment was more positive than you think.
It was given in the context that our disease is like having a chronic disease. They manage it and keep us well over a long period of time. In part this is because it usually is relatively slow growing compared to high grade. Some of us will never be disease free but they will use various therapies to keep it under control, others it will return and they will try to regress it again. So the medic at the Marsden was saying when there are two therapies eg like Avastin and letrozole that could help, rather than give them together, they give them separately and give us serial remissions.
If Im honest, im still discussing this with my lead oncologist. I think if each works on a different pathway, given together, they could enhance the chance of prolonging disease free remission. I think its a risk, because they dont never it will lengthen, and once you give a drug the mutating cancer cells can start to become resistant, so overall it may have not prolonged overall survival.
I have low grade serous carcinoma diagnosed in 2012 grade 3b at 40 years old, I'm now 44 and on my second recurrence and have never been offered avastin or letrozole interestingly, I wonder why this is. I have never mentioned them to my onc but also he hasn't mentioned it to me? I've heard so many people on here mention them but I don't know anything about them . I had a full hysterectomy inc omentum and appendix and then 6 carboplatin. In 2015 had my first recurrence in abdomen like spotting so had 6 more carboplatin. I was just diagnosed again on 4th Jan in same place again so now on weekly taxol 18 treatments over 24 weeks, have had 5 so far and no side effects which is good, trying cold cap as have never lost my hair before (carbo doesn't cause hair loss) so far no hair loss but a way to go.
Sorry I can't help but you might be able to shed some light on these treatments and for what reason some are put on it and some aren't.
Obviously I'm no expert but I can tell you what I know. I don't know if avastin was being used in ovarian cancer when you were first diagnosed. I can tell you that I have access like other because I got it privately.
Avastin is a monoclonal antibody that blocks angiogenesis. Its used at stage IIIb onwards in ovarian cancer but you have to meet certain health criteria eg no uncontrolled blood pressure or bowel complications. It was too risky for me to have it presurgery as teh risk of bowel perforation was too high in me.....
It is used here to in addition to chemo in first line treatment and maintenance alone and in recurrent disease. As you probably have read people seem to tolerate it rather well but a 1/3 get high blood pressure, it can cause bowel perforations, and you can get joint pain. Mine is not insignificant.
Avastin is no longer freely available in the UK. Since 2016 oncologists have found it harder to get access. It was withdrawn from the cancer fund. Its why my oncologist for now suggested I went private.
I only heard about hormone therapy in ovarian cancer and low grade subtype from the USA, specifically David Gerhenson - head of gyae oncol at MD Anderson. He is a low grade specialist. He recommended Letrozole to me as maintenance and he has now published his Letrozole study suggesting it can prolong our remission and survival. (In his state they cant get Avastin for first line treatment and maintenance....He has published though this year about Avastin being affective with low grader ovarian carcinoma in combination with chemo in recurrent disease.). Its meant to have a lower side effect profile than Avastin and its a tablet rather than an infusion like avastin. Some believe that for hormone therapy to work you need to express oestrogen/progesterone receptors - but the evidence shows that this isn't certain and people with low expressions get benefit.
Hope this helps. And one more thing. Don't think people going private might use these in your situation. My oncologist talks about chemo or hormone on relapse - so I wonder if you haven't been offered these because they aren't right for you. I suppose you will only know for sure by asking your oncologist.
Good luck. Hope some of the above is helpful and not just repeating what you already know x
I would concur with Agility - you may not have been offered because they didn't think it right for you. My oncologist at MDA works with/for Dr. Gerhenson, I'm not doing any maintenance (stage 3b) - we're just monitoring my CA125. We discussed Avastin prior to my completing chemo - an 18 week dose dense paclitaxel/carbo in 2013, but she didn't think it necessary.
Hi I was diagnosed with low grade serous 6 yrs ago. I had avastin as part of second line treatment but it did not work for me so it was stopped after a couple of months. After that I did try letrozole but my CA125 continued to rise quite sharply so I opted for weekly taxol which did lower my CA125 and I managed to stay off treatment for about 12 months. I am currently on the LOGS trial.
Hi Scardycat. I hope that you are doing welll with Caelyx. I remember you started it shortly after I did. Unfortunately, I just found out that Caelyx didn't work for me and they're suggesting I start single agent weekly taxol. I see you had weekly taxol previously. Could you tell me how long you were on it and if it worked for you? I'm platinum resistant. Is this your situation also? Any insight and information you can share would be greatly appreciated!
I was in hospital at the start of the year with pneumonia and a PE. Treatment was stopped as I am too unwell. I had weekly taxol in 2015 I had about 16/17 treatments and I did respond.
I'm sorry to hear that you aren't feeling well and that treatment was stopped as a result. I was in the hospital for 15 days just before Christmas with pancreatitis, but was still on Caelyx at the time. I'm glad the taxol worked for you. I hope and pray it will work for me too.
I may be a little late to the party, but I am 49, in the US, and was diagnosed with low grade serous ovarian carcinoma 3C back in 2007 (although it didn't get it's low grade status until a few years ago).
My original treatment was debulking surgery followed by 6 rounds of Carboplatin and Taxol. After that remission for 7 years. Next was debulking surgery followed by 2 years of tamoxifen and remission.
Now on round 3, I'm eight months into Avastin every 3 weeks and on my second week of Letrozole 2.5mg. I was on daily Cytoxan for 7 months, but it effectivity has seemed to diminish as my CA125 has been creeping up.
So far, the Avastin doesn't have too many side effects for me except easy bruising and slow healing. It's too soon to notice side effects, but my energy is up since stopping the Cytoxan.
I would say ...late but great. Thanks for your reply. I hope my body responds like yours. Very interested that you are on both Avastin and letrozole. I've been talking about that with my onc but he says clot risk too great if I take both at once. Was that mentioned to you? I'm going with him for now as I'm flying a lot but after the summer will reflect again ....or if ca 125 creeps up.
That was not mentioned. And I think because these are all second string therapies, they are a little more ambitious. I know there have been several studies with Avastin and Letrozole, and the side effects vary. The Letrozole is very new for me. I'm also on Norvasc (bp meds as my bp went up soon after the Avastin treatment started.) I will definitely ask about the increased blood clot risk.
On a side note - One thing that has seemed to help me a lot is as far as feeling better is swimming and water aerobics. It makes me feel more energetic and is absolutely a mood lifter.
Yes exercise is key for me. Lots of yoga and walking cycling each day too. Did you take any supplements especially ones that reduce local inflammation, are 'anti cancer' or the like?
Probiotics every other day...that's about it. I try to eat well and I'm a vegetarian so my diet is pretty colorful.
So you're CA125 is 12 and there is no evidence of disease but you are on the avastin?
I'm slightly symptomatic and have some small nodules here and there - mostly abdominal/pelvic area and some trace ascites. When I was NED and my CA125 was that low, I wasn't on anything. Avastin is really expensive and hard to get unless you can make a case for it.
Thank you that's useful. I eat a Mediterranean/ rainbow diet. Haven't quite given up the occasional drink. I'm starting to take a few supplements, in part cos I still have an ileostomy & get full easily so can't eat all the nutrients needed.
I got Avastin cos onc said I needed maintainence. I'm still not sure if I should av gone for letrozole. Avastin is less effective in low grade compared to high & less effective on NED people but by the time I had my op I had deposits everywhere. I now have symptoms developing and ca125 creeping up but in normal range. They say it could me tumours that aren't yet visible on ct or side effects of Avastin.
Anyhow I still love the fact that you are doing so well. Really heartening. My oncologist says getting to two years without relapse will be a great sign for me.
Just stay upbeat, I've found that the language I use when I talk about it really affects the way I think about it. And frankly, the whole time I was in remission, I never even considered the chance of recurrence. I just went on with my life.
The good news for us is that there are some trials going on and new ones coming up and lgsc is a slow progressing cancer. We're very lucky, all things considered, and really do have time on our side.
Haven't heard from my team yet, they are still discussing. As soon as I know the plan, I'll clue you in.
Oh, and after searching for drug interactions between Avastin and Letrozole - I couldn't really find anything referring to increased blood clots. I will say, Avastin, all by itself has some unsavory side effects, blot clots being one of them.
I agree about positivity. Inwas just feeling like myself again when symptoms started and it was a shock. Hence my checking that I'm happy with everything I'm doing. Exercise, good diet and key supplements mainly to cover potential issues cause by the stoma,
I've asked about the clot risk....onc said both carry a clot risk, so taking them together doubles the risk. I've had a splenectomy & have raised platelets as a norm. So I ask what caused the clot risk and he just said the history of cancer. Think the other things must contribute. Anyhow I will heed your wise words. I'm off to NYC Sunday to help my sis & will keep adding letrozole under review. It's just a leading onc in USA for our type recommended it over Avastin..anyhow running around after my toddler nephew will put all of this out of my mind for now And yes I agree about positivity.
OK, so I spoke with my doc and here's where I am: right now I'm stable even though my CA125 is climbing a little bit. The scans show that the tumors (equal or less than 4mm) have not changed since February. He said that he'd like to see how I respond to the Letrozole (and continued Avastin) and we will check back in late August. He's also approved a low dose of Ibuprofen for cramps and abdominal pains that have started since the Letrozole.
He said at this point, stabilizing the cancer is what we want.
I agree with him. Stable is good. I'd happily go with that. Sounds like a good consultation. I hope adding in Letrozole makes an impact. NY Is good, 6.30 starts with my nephew not so good - ha ha. I plan to get a consultation while I'm hear another view on combining Avastin and letrozole now or if mine continues to creep up albeit in normal range. Looking forward to to hearing the impact of letrozole.
I have just come across your posts and really feel inspired by your positivity. I am about 9 months since finishing frontline chemo and a over a year since diagnosis - the clinical trial I was on for avelumab has been stopped so I am now on ‘watch and wait’ my CA125 is 12 and I feel well but mentally fearful for the road ahead - any tips ? Thank you
Well, I can't help you much with the decision on the Avastin, but I can connect. I'm coming up on the 4 year anniversary of my diagnosis of stage 3b LGSOC. I had a full hysterectomy and did an 18 week dose dense schedule of carbo/paclitaxel. My oncologist felt we got all of the cancer with the hysterectomy, so the chemo was primarily just to be sure. We thought I'd have to go on Avastin post chemo, but she made the determination that it wasn't necessary, apparently the difference in the 3b and 3c was the dividing line for that. I'm at Md Anderson and I've been pretty impressed with their clinic. I think highly enough of them that I'd try to follow up on the letrozole and learn more. I was in clinic two days ago for my every 6 mo. check up (CA125 a stable 8, thank you very much). I wish I'd come across your post sooner as I could have asked about the letrozole.
I'm even later to the party and in the UK. Diagnosed a month ago with 3a Low Grade Serous Tumours. Doing carbo/taxol (3 weekly and weekly respectively) post radical hysterectomy etc. Scary but grateful it is a low grade diagnosis. I'm told there is nothing other that chemo available on the NHS but that the tissue will be tested for oestrogen receptors. Possibly Letrozole or Arimidex after chemo ( even though the chemo it is less effective for LGOC) to prevent recurrence.
I'm trying to eat healthily but the steroids during chemo are making me hungry! I've put on the weight I lost during and post op. I'm also trying to see it holistically . I'm more than a body, and trying to manage stress and fear is important.
I'll let you know how things go and I do hope you are all in good places.
I have LGSOC late stage too. Had all the surgeries, small intestine resection with liver and bile duct involved and chemo for 8 rounds. I have horrendous menopausal symptoms like sweating so much that my hair is constantly wet, having to sleep on a beach towel and voilent nausea. I made the choice to use h.r.t. because without it, my life is so miserable. I know it increases the risk of new tumours but my menopause symptoms are so extreme that it was the lesser of two evils
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