Second line treatment - advice please!

[Alifit]

Morning all,

My diagnosis of PPC Stage 3c was treated with six rounds of carbo/taxol with sub optimal debulking in the middle. I’ve got two treatments of Avastin out of eighteen left to go, but my CA125 has gone up from 33 to 193 in the last few weeks. I’ve had one scan which came back as ‘stable’ and I’m having the results of another scan on Wednesday.

I wonder if some of you in a similar posiotion would be happy to share your experiences of which second line treatment you had and how it made you feel.

I hope any information I can gather will help me make an informed decision if the consultant feels I need further treatment.

I hope you can enjoy the sunshine today, but stay warm!

Much love and gratitude in advance, Ali x

[Suzanne333]

Hi Ali.

First line I had carbo and taxol and avastin. My CA125 rise slowly but steadily once chemo finished. Avastin was stopped after number 13.

Im on second line now and I’m having carbo and taxol again. Every three weeks again.

It’s going ok. I’m not as exhausted as I was first line. I’m carrying on working two weeks out of three.

My friend who I met on the trial has a recurrence too and she’s on carbo and caelyx. Every four weeks. She’s finding it a bit tough. She has the same consultant as me so I don’t know why we are having different treatments.

I hope you get on ok. Hugs. Xxx

[Alifit in reply to Suzanne333]

Thanks for that Suzanne, it’s useful to have other opinions.. I may be jumping the gun ,of course, but forearmed is forewarned! (I think I got that right!!)

Thanks for the hugs, they always help!

Ali x

[Maxjor]

Hi Ali--I had 6 cycles of Carbo Taxol for Frontline and did get to NED. Relapsed 7 months later and did immunotherapy which did not work (4 times in 8 weeks). Now on Carbo/Caelyx (Doxil in the US) and had a big reduction in ca125 after the first one. (I have had two treatments now but don't know my ca125 yet after #2). Its easier in one respect as only every 4 weeks, not every week, but days 2 and 3 post-treatment are tough (nausea, achy, and bad chemo brain) when I had no reaction with Frontline. After that, its 3.5 weeks of "normal", that is, I feel like my old self--full of energy and feeling fine.

If you didn't reach NED with Frontline, you might want to look into at least one new agent in the mix.

My onc was vacillating between the Carbo Caelyx and Carbo Gemzar so that could be another option to look into. The pattern of treatment is different with that one (more than once every four weeks) but it's another thing in the arsenal.

Good Luck and keep us posted! oxox

[Alifit in reply to Maxjor]

Thanks lovely,

I wasn’t completely NED. I found carbo/taxol hard going - I had it every three weeks and had badly aching legs and neuropathy. Taxol was reduced then left out of the last cycle, but that’s when I went onto Avastin.

I’m grateful to you for your response - I’ll repost when I know what’s happening

Best wishes, Ali x

[Gleedy]

Very similar to me. I have PPC 3C. My CA started to rise in the 17th infusion of Avastin. I was on watch and wait for 6months as my scan was clear at the beginning of CA rising. I had no symptoms. I started carbo/caelyx 3 weeks ago and coping well apart from headaches. I was being tested for PSHARROW trial but results from biopsy still not back to see if I qualified so I started chemo anyway. I made that decision as the oncologist said she didn't think I would qualify and CA was way higher than at diagnosis so wanted to get going. It's really really disappointing when recurrence happens. Try to stay positive as there are still options open to us. Good luck. Xx

[Alifit in reply to Gleedy]

Hi, I have some symptoms - mostly abdominal discomfort and pain in my ribs, but the may be completely unrelated! I would like to be told to watch and wait, I’ve a holiday booked in March and would like our new bathroom to be done before any more chemo - our kitchen was done when I had the last lot of chemo - camping gas stove, a microwave, slow cooker and no hot running water don’t make for good health at the best of times. The thought of having to use the downstairs toilet whilst on chemo doesn’t bear thinking about!

I couldn’t find the trial you mentioned - where is the info please?

Thanks for your kind and encouraging words, best wars, Ali x

[SarahsJourney]

Sounds a bit like me mine PPC 4, CA125 rose while on Avastin and scan showed ‘low volume’ recurrence. However my tumour tested positive for BRCA1 gene so I was started on Olaparib in Sept. sorry to say though CA125 still rising and am having scan Monday so will have to wait and see for me...

Just out of interest have you been tested for BRCA gene? It gives you addition options of parp inhibitors

Good luck xxx

[Alifit in reply to SarahsJourney]

Hi, yes I have had the blood test - BRCA negative, but have read quite a lot lately about having the tumour tested and that this may show different results. I’ll look into it and add it to my extensive list of questions for my consultant on Wednesday!

I hope all goes well with your scan, Ali x

[SarahsJourney in reply to Alifit]

Worth doing. For some reason mine was tested the other way round tumour showed positive, but when I had the blood test it was negative! Don’t really understand the how’s and why’s but apparently it is possible to have it in the tumour and not the Blood? X

[Gleedy in reply to Alifit]

I'm BRCA negative too. The info I was given reads as follows PiSARRO P.53 Suppressor activation in recurrent high grade serous ovarian cancer. It is offered at Royal Marsden so may be listed in their trials. I was only started on treatment once disease showed in a scan. I had 6 well months of no treatment.

[January-2016-UK in reply to Gleedy]

Hello Ali, the Pissarro trial is for platinum sensitive only Here’s a link clinicaltrials.gov/ct2/show...

My treatment after recurrence was an immunotherapy trial, Javelin 200 for platinum resistant folks, which is now closed. Not sure if that’s counted as second line as not chemo. Stayed on the trial for over six months until progression, still less of a burden than before starting on the trial. Was watch and wait all summer, until slowly increasing CA-125 and the absence of any suitable trial, indicated I should go on weekly Taxol. I think this is what would be described as second line. Not sure.

Good luck with your consultation on Wednesday.

Helen

[Alifit in reply to January-2016-UK]

Thanks Helen. How is weekly Taxol? I had shocking neuropathy when I had it three weekly with Carboplatin, but I guess you have a lower dose? Not sure I could be doing with going in every week, although the Chemo ward at my hospital is like a second home with an extra family!!

Best wishes to you, Ali x

[January-2016-UK in reply to Alifit]

I hade grade 2 neuropathy and my last two doses Taxol was reduced by 20%. This seems easier to bear than Carbo /Taxol so far. Fingers are more tingly and feet more numb tan when started but nothing painful yet. Had six doses. Every week for three weeks then one week off. Janet is also on weekly Taxol but has it every week. Harpist is due to, or already has, started. Have an upset digestive system right now but I’m assuming that’s the antibiotics from my recent escapade at A&E. Taking yoghurt and kefir in hope of alleviating things.

Dropped my 2-pint budding basin (chemo fingers) and broke it. Everything’s gone metric. Only plastic 2-pints now. Still, not dropped too many things yet. Unlike first line.

[Alifit in reply to January-2016-UK]

Oh what a pain (!) it’s a shame that they are hard to get now - do we go back to imperial when we leave Europe?! 😏

I was very frustrated with neuropathy because I couldn’t knit or sew. My feet hurt so much that we had to change to a really light duvet - our feather 13 tog seemed to weigh about 100 tons (or do I mean tonnes?) - not a side effect I expected!

I hope your infection is now a thing of the past, take care and thanks for your advice, Ali x

[January-2016-UK in reply to Alifit]

It would be rather good for old folks like me if we did go back to imperial. I know calculating is much easier in metric but the individual measurements lack real meaning for me. Especially cooking. Don't suppose it would happen as young people would find it just as difficult.

However, maybe we might change some silly laws. Such as honey labels, we have special dispensation to sell in 1lb or 8oz jars, similar to our ability to sell milk in pints and also serve beer in half and pint measures. However the labels also have to state 454g or 227g. Fair enough you might think but the metric measurement has to be in bigger type. Weights and measures can take action against you if you don't get it right.

I had the same problem with the duvet. I moved into another bedroom so I could pop them out the bottom wth something light weight to keep them warm. Had to hang onto supermarket trolley otherwise felt I'd fall down; went downstairs like a child. Didn't mind so much about my hands. Initial advice that I might find it difficult to do up buttons didn't faze me at all. I'm happily thinking, most of my stuff's got zips, not going to bother me. Little did I realise I would end up being unable to open jars, make-up pots, drop so many things. Luckily I stopped dropping the milk because I ended up being unable to put my hands into the cold fridge. A glass of red wine, dropped in the pub despite using both hands, makes an extraordinary mess.

So far I'm thinking the carbo may exacerbate the taxol effect, or maybe it is because it's a lower weekly dose.

Cancer Research UK website says PAZOFOSS is on hold.

[Alifit in reply to January-2016-UK]

Thanks for the info about the trial.

I have always thought it would be lovely to keep bees - it seems such a civilised thing to do! Not sure that deisel flavoured honey would be very popular - I live near the middle of Birmingham!

Love to you, Ali x

[Alifit in reply to Gleedy]

Thanks, I’ve found the trial and will speak to my consultant about it. There’s another one called PAZOFOS which looks like I may be eligible for too.

Thanks for your advice Ali x

[dryden1]

Hi Ali, Hope it is not a reoccurence but if it is it is as well to be prepared. I had 6months of Carboplatin and caelyx for my second line finished in Sept. I WAS VERY, VERY LUCKY AND HAD FEW PROBLEMS WITH THE REGIME. I did have a bit of constipation which was quickly cleared up with Movicol which I highly recommend and towards the end my magnesium levels were low and had to have oral supplements for that. HOPE YOU DON,T NEED THE ADVICE. Love Chris

[Alifit in reply to dryden1]

Thanks for the advice Chris. Aah yes the lovely Movicol - it was part of my first regime after the first cycle which landed me in A&E with extreme constipation. I learned quickly when to take it and of course, when to stop when my body decided to reverse the process!!

I’m so grateful for your positivity and good wishes.

All the best to you, Ali x

[Katiebairdie]

I wa stage 3 at the beginning and on carbo/taxol. Taxol was stoped fierce two sessions. A year later it was carbo/ calyx. Now after 18 months I am told probably carbo/ gem. From previous posts I don't like the sound of avastin. We are all different. Good luck.

[Alifit in reply to Katiebairdie]

Hi Katie,

I know what you mean about Avastin, I was very sceptical and rather scared after reading about the side effects, but was lucky.

It sounds like you are heading for a second recurrence - has it been confirmed? I hope everything goes well. Thanks for responding, best wishes, Ali x

[Katiebairdie in reply to Alifit]

My ca125 is rising slowly but steady. Been advised that it will be more chemo in February. In the me time enjoying xmas and a holiday in January. Have to keep cheerful

[Alifit in reply to Katiebairdie]

Indeed! Have a great Christmas and holiday x