CA125 on the up, CT scan shows new growth in/on liver and a spot next to the spleen. No more Avastin - what next?

[Izzystep]

Hi ladies. Not posted for a while as I was, I thought, doing okay, but have been reading everyone else's news and replying where I can.

Diagnosed 3c ovarian cancer back in July 2012, had debulking November 2012, ended up with permenant colostomy

Started 2nd line gemcitabine/carboplatin plus the wonder drug Avastin, back in November 2013, after progression in the lymph nodes. I have been doing quite well, even had a holiday in Crete.

Routine CT shows new growth in the liver and spleen and the oncologist has now stopped the Avastin, just like that!!! She said it's obviously not working. I told her I was doing ok, that I was worried the others may grow in the lymph if it was stopped, but she wont give it to me anymore. As I am a-symptomatic she's going to let my body have a rest from drugs etc.

I have another appointment in 2 weeks time, but she suggested Caelyx and carboplatin as a possible treatment. Maybe there will be a trial in the way I can look at.

I left feeling devastated and downhearted and just need a bit of moral support. Was feeling so positive and this has hit me harder than I anticipated.

Love and good wishes to all you wonderful ladies, Irene xxxx

[passenger1]

Hi Irene sorry to hear your news it must be a blow especially if you are feeling well and you think that things are working OK.

If its any help I have started Caelyx and Carboplatin just had my 4th. I did pick up a few tips from the ladies on here. So that has helped me not to panic. I have had two delays as the bloods were too low, but as far as the CA125 it is going well. For me it is a marker. If you get a chance for a trial ask, check it all out before you start any new treatment because once you do you may lose you chance to go on it. Have a good look on the sites what is out there. No doubt there will be someone who can help on here.

Sending you a big hug.

Love Barbara.X

[Izzystep in reply to passenger1]

Thank you Barbara. I think my bloods are going to be a big problem. I was delayed quite a few times 1st line carbo/taxol and had to have a couple of blood transfusions and rehydration along the way. 2nd line gem/carb I missed out on the day 8 treatments due to low blood counts.

Can't believe I am having to face yet another round

I am going to fight this b*****d all the way xxxxx

[Veronique]

Hi, sorry to hear of your news. I know just how you feel and how it can hit you. I had my first double chemo (well it's about the 4th lot) of Caelyx/Carbo last week and apart from the usual nausea, feeling ok. I am struggling with having to put down my constant companion/"son" who is nearing 17 and whom the vet says has little renal capacity left.

I intend to ask my consultant for Avastin after I've finished. A friend of mine who was a chemo nurse strongly recommends vit E & Vit B6 to alleviate the side effects of Caelyx (Palmer Planter syndrome). I checked this out with the hospital pharmacy who ok'd it.

If my consultant wont prescribe Avastin I shall ask for a 2nd opinion. Think about doing the same. We really have to stand up for ourselves. Good luck

[Izzystep in reply to Veronique]

Thank you Veronique. The best thing about this site is that its users don't just say "I can imagine how you feel!" You ladies know exactly how each one of us feels.

Avastin, I know, doesn't work for everyone, let's hope you get it and it works for years and years.

Thanks for the tips. I will bear this in mind when I start xxxxxx

[Whippit]

Hi Irene

Sending big hugs in the hope of cheering you up a bit and you can have moral support by the bucketload. It is devastating when you see progression and frightening too when it's cropping up up in new places. I quite like your oncologist's 'take' giving you a drugs holiday and a break from so many hospital visits.

Avastin hasn't done the trick for me either and there seems to be something going on round the kidneys for me. I have a feeling the NCDF limit of 18 cycles will mean it won't give the same results as the trial where it was continued until there were adverse side-effects or disease progression. Presumably in the trial patients could be on it for a lot longer than 14 months.

We find ourselves in the same club again as I'll be having Caelyx and Carbo-platin for Christmas this year. I can't think of a better chemo-buddy! Apparently our Caelyx is psychedelic pink. It's disappointing to have such a short length of time in remission, but who knows, perhaps for us the pink stuff will be more effective than Avastin.

PARPs might be an option. There a trial, SOLO with Olaparib, and ARIEL3 testing Rucaparib where 2/3 patients will receive the trial drug.

Hope you feel a bit brighter soon. xxxx loads of love Annie

[Izzystep in reply to Whippit]

Thanks for all the support you give not only to me but to other ladies on HU.

I have spoken to a lady on the "pink stuff" and she said her wee was pink!!!! She said she was petrified and went to A & E, to be told perfectly normal.

Not sure if I can go on the PARP trial, my oncologist said that's only if your CA125 went to zero during or after treatment. Mine only fell as low as 63, before it climbed to the 6,000's, so I don't think that's for me.

I will speak to her about the SOLO and ARIEL3. She calls me Dr Google, so I will live up to my name and undertake a bit of research.

Take care dear Annie. With much love and hugs through the ...........Irene xxxx

[kazrazmataz]

Hello Irene, hope you are feeling a bit better and are starting to bounce back as we all try so hard to do. Like you I am a google queen so most of what I'm probably going to say is about sucking eggs so hope you don't mind.

First and foremost I would talk to your ONC about all the options and go armed with as many questions as you like, they should be open to this. As you will know Carboplatin is a platinum based chemo and is THE gold standard based on and if you've had good results before it is likely it will give good results again. As far as Caelyx is concerned I can speak from experience as I have just finished carbo/caelyx as they switched my chemo due to an allergy so have had last 3 cycles of Carbo/Caelyx. Honestly did not have ANY side effects to caelyx but did follow advice ie not to have really hot showers. Did not have pink wee but I drank a lot of fluids as its the norm for me even though I do have to pee a lot (Caelyx does have a redish tint which can turn urine pink for a day or two but is no need for alarm). I have felt well throughout energy levels good, been going to gym doing 10km on exercise bike alternating pace with short bursts of Bridgette Jones style (without the falling of the bike). My bloods throughout chemo were all within normal range and I did not have any problems Hair has grown back as not affected by Caelyx (not that that's of importance but thought I should mention this.

Finally as you know Avastin is a hot topic because of the funding issue but its not the only anti cancer drug However its probably the most well known because we all talk about it but I think talk to your ONC again, go armed with your questions and if you want to (as some of the ladies have done) you can always ask for a 2nd opinion.

Good luck and take care.

Karen x x x

[Izzystep in reply to kazrazmataz]

Wow Karen. It's 3.19 in the morning and my mind is reeling yet again. Looked at phone and saw your message. It's given me so much hope, thank you!!! Coming from someone who has had caelyx/carbo it's great to hear such positivity of the drug. I know everyone reacts differently to the dreaded chemo. I hope this regime is good for me. Paclitaxol nearly finished me off. Ok on gemcitabine and if I get carboplatin this will be the 3rd time.

Going to try to sleep thinking positive thoughts.

Goodnight and thanks again, irene xxxx

[sharonforce]

Hi Irene

I have also done the Carbo/Caelyx with good results and much fewer side effects than other chemo treatments. I have also been on two parp inhibitor trials and it is not true that your CA 125 has to go to zero during or after treatment - even someone without the disease does not have a zero CA125.

Sending you very best wishes

Sharon

xx

[Whippit in reply to sharonforce]

Hi Sharon, I was thinking the same thing about CA125. Mine went to 12 and they're talking about PARP. I think sometimes we get the wrong end of the stick - perhaps due to oncologists trying to simplify things too much. Even if we are on PARP trials with ARIEL and SOLO one-third of women will receive the placebo. Not such a bad thing given the trial is to assess the toxicity of the PARP inhibitors. What is good is the NCDF getting successful drugs out on to the market much quicker than the NICE process which takes years.

Two profs giving presentations recently said that PARP inhibitors will be on the market within 12 months (for England and Scotland). Boo hoo for the poor patients in Wales losing out yet again. x

Hope you're doing well. xxxx Annie

[sharonforce in reply to Whippit]

The parp inhibitor trials I have been on (BmN 673 and Compakt which is Olaparib plus another drug) have been ones where all patients receive the drug.

I am doing ok. The new antifolate trial drug i am on has caused no side effects for me so far, but it is too early to say whether it is doing any good yet!

Best wishes

Sharon

[Whippit in reply to sharonforce]

I've just looked up antifolate Sharon. Another interesting new avenue. I hope the trial works well for you. xxx Annie

[Izzystep in reply to sharonforce]

Thanks for that Sharon. At my last meeting with the oncologist I was so shocked and stunned by the news, all sense of reasoning went out the window. I couldn't think of questions. Next time we meet, 13th November, I shall be more prepared.

Glad the Caelyx mix gave good results and few side effects, especially as I was so poorly 1st time round.

Best wishes, with love from Irene xxx

[iamstillme]

Hi Irene and Annie Hope as I'm sure you both are bouncing back from your news . Hate this bloody illness . I think I am in the same boat . Last ct scan showed slightly enlarged lymph nodes and a slight pleural effusion . Two thoughts are it is an inflammatory issue as I also have severe joint pain or early recurrence . Plan for me is to continue with Avastin until January and then re scan .im lucky have my Avastin with private health insurance so there is no limit on number cycles I can have as long as it continues to be working. On a positive note my consultant feels PARP inhibitors will be licensed very soon but only for BRACA gene mutations and high grade serous and that there will be a lot more clinical trials available . His words are plenty more in the bag for me !!

Sending lots love

Ally xx

[Izzystep in reply to iamstillme]

Hi Ally. This is what I love about this site, so many ladies posting their stories, which gives hope to others. It's great to able to read other oncologists views in different treatments, this means we can go armed with a multitude of questions for our own consultations.

Good luck with the Avastin and let's hope you have an inflammatory issue that can be easily sorted.

Love and hugs over the waves, Irene xxxx

[thesilent1]

Hi Irene, so sorry you have had another recurrence. I understand from reading about Avastin that this drug gets stopped as soon as there is recurrence. Also it is licenced for 1st and 2nd line treatment only.

I am sure there are lots of other treatment options available so don't get disheartened. I am on watch and wait at the minute too. This is a 1st recurrence for me and it is in 3 lymph nodes in my pelvis..

Stay strong and keep in touch with us all.

Love and best wishes. Ann xo

[Izzystep in reply to thesilent1]

Thank you Ann. I'm sure my oncologist has plenty more in the pot for me, I just wish I wasn't having to go through it again. What's the saying? 3rd time lucky let's hope it's true.

Sending love n hugs, irene xxxxx

[Seachell]

Hello beautiful! My OC has returned the same way as yours in my liver and spleen! My oncologist is starting me on Carboplatin and Avastin! She also advised me to do a Living Will and an ordinary will! I wonder if that means I am that much closer to death? I will keep you in my prayers! Hang tough sweetie! Love always, Michelle

[Izzystep in reply to Seachell]

Hi Michelle. I've had my quota of Avastin .... its no longer working. Looks like caelyx and carbo will be next. If my oncologist said what your one said to you she certainly wouldn't be my oncologist anymore. Not much of a 'bedside manner' or tact there.

Hope it works for you.

Lots of love Irene xxxx

[kazrazmataz in reply to Izzystep]

Hi Irene, just to let you know no more nocturnal messages from me, no mobile signal where I live so forget people have their phone on and get email message alerts, felt v bad that I woke you up. Agree Michelle's ONC is totally tactless thankfully most are not like that but people skills are not part of their training (should be). My sister has some doctor friends (her son goes to school with their child) she is friends with the Mom who is a doctor and her husband is a Gastrology surgeon she said he is totally lacking in social skills and she thinks he has some form of autism but he is a very clever doctor.

Sleep well my lovely, sounds like you are getting your spirit back by the bag full which is what I like to see.

Karen xxxx

[Izzystep in reply to kazrazmataz]

You never woke me up Karen. At the moment my sleep pattern is all over the show so I often wake up at 'silly o'clock' and check my phone. I sometimes even send posts.

I agree some doctors have excellent bedside manners and like Michelle's some don't. I think an oncologists job is extremely hard, as they have to deliver very bad news (as well as sometimes good) to their patients. I agree they should have some sort of "how to deliver bad news" training.

I have met some wonderful doctors in the past and am grateful to them all (good and not so good).

Take care, love from Irene xxxxx

[kazrazmataz in reply to Izzystep]

Good Morning Irene, hope the sun is shining where you are, its lovely here, birds singing. I agree most doctors are exceptional I have met a few in my time. The NHS have kept me going 12 years past my sell by date (I am a young 56) and I have faith they will continue for a long time yet we are a statistic. Have a nice day going to go a walk take some nature photos on my phone like doing that!

[kazrazmataz in reply to kazrazmataz]

Irene Oops meant to type We are NOT statistics!!

[Izzystep in reply to kazrazmataz]

That's fantastic .... I hope the NHS can keep a young at heart 60 year old going for another 12 years!!!

Rotten weather here in London. Cold, raining, damp and miserable (suits my current mood).

I laughed at your typo and agree we are definitely NOT a statistic (maybe we are when on a trial) but I have always been treated like a person.

Enjoy your photo shoot, doing what you enjoy is good for you.

Take care, love from Irene xxxxx

[kazrazmataz in reply to Izzystep]

I'm sure we will both go on for a long time yet. Glad to hear I made you laugh, shame we don't live closer. My sister lives in Hythe on the Kent coast so I go past London on occasions - although lost my nerve at the moment to do the M25. We are driving down for Christmas on Christmas Eve and coming back day after Boxing day which will be lovely. Her house is always very Christmassy. Will go for the usual bracing walks along Hythe promenade and see if we can see France plus any nutters having a Christmas dip. Hope you feel better soon (don't let the B*** get you down) x x

[Hidden]

I am sorry to hear this, but it is a good thing your oncologist is looking at options, I have read in the previous blog of a lady who was indeed quite ill and is still around many years later. Was there another reason why they stopped Avastin, ie had you an allergy or reaction. I am surprised but then again Avastin is not freely available in the Uk and then it is only for a certain amount of time. I hope you get better news at your appointment, do write down any questions you think of to ask your oncologist as sometimes we get overwhelmed at consultations and go dumb as I do myself. Sending you kind thoughts and lots of hugs

[Izzystep in reply to Hidden]

Thanks for the hugs n kind thoughts, I could really do with them.

I normally go armed with a list of questions. This was the only time I never!!! I was feeling good and so positive that the CT scan was ok. How wrong was I. Hit me with a hammer straight on the head. Still can't get my head around it.

No allergic reaction to Avastin just a constant runny nose. BP okay and no protein in urine. I will ask again on the 13th November.

Love n hugs Irene xxxxx

[Hidden in reply to Izzystep]

Wishing you the best for your appointment very sincerely. Its a blow but maybe some other combo can help. I suppose in the end we rely on our doctors really dont we as they have the knowledge. I suppose so it wasnt the required reponse they would have wished for with the Avastin and that is why it is stopped. Enjoy the break for the few weeks and try and get a few days away before you start again. On my second recurrence, had spots in the tummy but they have disappeared with a Gemzar Carbo combo. They were indeed surprised at my response because things werent great before diagnosis, I had lost a lot of weight, had a lot of pain but I did respond better than anticipated but had more gem/avastin in past twelve months. In between I return to work, try and take breaks which makes it all worthwile and a distraction.

[Izzystep in reply to Hidden]

I am sure my oncologist gas something in mind for me. She did say that if Barts Hospial didn't have a suitable trial, she would refer me somewhere else ........ mmmmmm maybe she wants to get rid of her Dr Google I am sure that's not the case.

I've retired after 38 years in the Civil Service and cannot imagine going to work, but I truely admire those ladies that do.

Take care, Irene xxx

[Hidden in reply to Izzystep]

Its hard to know what to do about work but then again you have to make choice that is right for you. I wasnt going to go back in May but my gp said cut hours and see how I get on, so I do twelve hours a week now in three mornings but I find by the time my shift is done, my concentration has gone awol. I am a teller in a Credit Union so have to be careful I dont make huge mistakes. I am glad I am doing something so my gp knew me and that I would be killing myself if I didnt try. I retire next year anyway. So hopefully I can do some voluntary work at some stage then. That of course depends on my scans etc etc. It is awful because with our illness, our lives change and you have no control over life anymore. Not that I am a control freak but you understand what I mean.

[Izzystep in reply to Hidden]

Yes I know what you mean. I don't do any paid work but am Chair of Governors in a large inner city secondary school and am the Church treasurer. Having to learn excel spreadsheets at my age was somewhat daunting.

Both of these voluntary roles keep me busy.

Got to keep the brain active xxxxx

[vipervictoria]

I'm sorry this has happened. What is hopeful for me is that the PARP inhibitor olaparib is close to being approved by the European Medicines Agency as maintenance treatment for ovarian cancer in women with platinum treated relapsed disease who have a BRCA mutation. A trial showed a very significant advantage. Hopefully (sic) olaparib or another similar drug will have the same effect in women without these specific mutations. Small steps, one at a time. Best, Vx

[Izzystep in reply to vipervictoria]

Yes small steps indeed, that will lead to one big jump in the fight against OC.

I have been sending myself e-mails of all the trials and treatments that you lovely ladies have been posting. Roll on the 13th November, my oncologist had better have lots of time to listen and explain her next move.

Love n hugs Irene xxx

[ScardyCat40]

I only lasted a few months on Avastin but I wasn't sorry to stop tacking it as I felt so much better off it than on it. Latest scan showed stable disease and no new disease but CA125 is continuing to rise so will be having another scan next month. I think my next treatment option may be some sort of hormone therapy.

[Izzystep in reply to ScardyCat40]

Thanks ScardyCat40.

I was, I thought, doing so well on the Avastin. I honestly didn't have any side effects whatsoever, just a runny nose. I was praying that Avastin would keep the buggers at bay, but no, they decided to grow somewhere else.

Not sure of my next treatment, possible Caelyx and carboplatin (3rd time) I will be discussing options at my next appointment, which has been put back to 27th November. I really don't want to start a new chemo regime till 2015 xxxxxx