Hello ladies.
Had anyone with Low Grade Serous Ovarian Cancer had oral chemotherapy called “Cyclophosphamide”.
It’s an old chemo drug that apparently works on slower growing cancer cells. My oncologist suggested it to me a while ago and said it had been trialed at some point in the past but not really gone any further. However, she said it did seem to have good results on low Grade. Now newer drugs have come on the scene so no further trials are likely for Cyclophosphamide.
Thank you
Diane x
Hi thete
Hi there Diane..
This treatment isn't the standard first line. I don't understand it though I don't discount it. I don't know about treatment. I'm told that there are other therapies. It might be a good idea to contact the Ovacome Helpline. Xxx
Thanks Tina. I’m on my third recurrence now and unfortunately I’m metastatic Low Grade . After nearly exhausting what’s available my oncologist suggested this but I wondered if anyone else had tried this. I’ve spoken with Anna before but it’s not part of the usual protocols used . It’s such a minefield isn’t it ? Xx
I’ve been on Letrozole but side effects were awful for me . However I developed Breast cancer whilst on them so they didn’t help protect me from that . I swapped to Exemestane which was working and keeping my ca125 down but still had awful side effects. Stopped them about a year ago and that’s when ca125 started rising again. At Easter of this year I had two cycles of Carboplatin but it flattened me so that was stopped. I chose to try Exemestane again as there isn’t much else out there for me right now. Hence asking about Cyclophosphamide. Xx
Hello Levanah, thank you for this I have never heard of it but it sounds like a possible alternative. I wonder if Prof Gourley in Edinburgh might be able to shed any light? I am now reading “the Journey” and doing more thinking on the mind-body perspective. Maybe it all helps? I’m selling my reference books to raise money for Low Grade research and came across an old one today acknowledging the connection and need to feel a sense of control. I can imagine that a new /old drug re-emerging together with a sense of being hopeful and less stressed might have much more positive results than the current situation where doctors tell you in advance how ineffective chemo can be for our cancer.
Love and light
Alex x
Good idea Alex. I’ll message Prof G about it and let you know on here what his thoughts are.
You’re right about the sense of control . In a world whereby we have no control over this disease,any control that we can reestablish has to be good for us.
Lots of love Sister xxx
Hi Levanah,
I'd also appreciate knowing what Prof.G thinks abt. cyclophosphamide. Also any other recommendations he can make for any type of treatment for low grade. Thanks for doing this. GwenXx
Please let us know what you find out about Cyclophosphamide and Low Grade. I see it used for ladies with High Grade who have exhausted other chemo options. I hadn't heard that it worked on slower growing cells. The other older drug that I have seen mentioned in relation to Low Grade treatment is oral Etoposide. However, my treatment centre doesn't use it. Does anyone have any more information on its use for Low Grade??
I’ve heard of Etoposide over the years (I was a Palliative Care CNS for many years before retiring) but not really much to say about its effectiveness in Low Grade . I think Cyclophosphamide in a small daily dose constantly supposedly will affect the slower growing cells. That’s the principle of it I’m led to believe. Once I’ve asked the question I’ll report back here Busbee3 xxx
I’ve just enquires re genomic testing of tumour tissue with Foundation One... it will cost £3,600 !!!!
That’s such a lot of money and could be a waste of time if there are no mutations or no treatment options for mutations that show up. How frustrating this is!!!!!
It's worth checking out the Foundation One folks closely. They rely on insurance paying their bill for people and I've heard that if your insurance doesn't cover it, they sometimes will reduce the bill. I haven't used them myself. I was fortunate to have my testing done through a trial. However, it's true that Low Grade tends to have a low tumour mutation burden. Having said that, if you have BRAF, KRAS, mutations, there are treatments that target these specifically. I don't have either. I felt it was definitely worth having tumour testing done and I'm glad I did it.
Thank you for that advice lovely. I’ll check with them about it and also discuss with my oncologist on Friday . Xx
My tumour profiling included checking for 600 various mutations and biomarkers. They did come up with three or four mutations, however, it isn't clear that any of them are the driver to my Low Grade. I am BRCA negative, but BRIP1 positive, which may give me an opportunity to try Olaparib (Lynparza), even though it's directed to those who are BRCA positive. Olaparib has been shown to be effective for some women that are BRCA negative, although they're not sure why. So...having the testing done has been useful in my case, giving me the chance to try the PARP inhibitor, Olaparib. This isn't covered by insurance so I'll have to pay for it myself. My oncologist thinks it will cost about $6000 per month. I'm not sure how I can swing this, but I'll will find a way. Wish I could find a trial that would cover this, but they don't do trials in my area.
Hi Diane - don’t know but interested in your post as I’m in last chance saloon, back on Letrozole for the sake of something and in hospital with bowel blockage but otherwise feeling quite well.
Nicola x
Hi Diane. I don't think it's very common here in Germany either. At least I couldn't find reference to it in the guidelines for OC (which doesn't say much as they hardly mention low grade), and was not offered the choice myself upon recurrence. Might be worth a shot? What about a trial e.g. for Mekinist or Ribociclib? Wishing you luck. Maus
Hi Levanah,
Have you heard back from Prof. Gourley re. options/treatments for low grade. Hope you ok. Best wishes. Gwen Xx
Hello Gwen, sorry for delay in reply.
Yes I did hear back from Prof Gourley and this is what he wrote
“I have heard of cyclophosphamide being used in other forms of ovarian cancer to some effect and to me Dr Greens thinking does make sense.
I can understand why you would like molecular testing and it is unfortunate that this is not routinely available on the NHS. I have to say that up here I have been able to sneak through some tests of the main genes of interest but really what is needed is comprehensive sequencing. That is what we are doing on the LOGS study that will report in just under 3 months time. That was a study of a new drug (trametinib) but all patients got biopsies for sequencing. My lab are sequencing other low grade serous ovarian cancer as well but our protocols are only allowed to be used for research purposes at this point in time (and any sequencing done for treatment decisions needs to be performed in an NHS lab). The problem is that at this point in time there is no treatment decision that relies on molecular testing (but this may well change after we report the LOGS trial).
Re a follow-up to the LOGS trial, we need to do some lab work first to establish the best agent and after that we are going to propose another trial.”
The results of the LOGS trial is due in a matter of weeks so that’ll be my next focus I think.
Lots of love xxx
Hi , Thanks for reporting back to us. Levanah is he saying that any molecular testing we might have would have to be through a NHS lab. as testing through a private lab. wouldn't count and the NHS couldn't action on it if this was the case. Best wishes. Gwen Xx
Prof Gourley has emailed me to say the results of the LOGS trial will be discussed at a conference in Barcelona at the end of September. The media and the public will have access to the info at that point but the proper report won’t be published for a few months after that.
I’ll post more when I know. X
Low grade serous carcinoma
Low grade Primary peritoneal cancer
cyclophosphamide
Trametinib low grade cancer
Change in low grade diagnosis -to high grade ovarian carcino sarcoma? 
