Is anyone on maintenance therapy?

I am new to this site. I was diagnosed with Ovarian( PPC) cancer in July 2009.I am BRCA2+ I am now on carboplatin in my 5th of 6 treatments for my 2nd recurrence. I respond very well to carbo but seem to relapse at about 6 months. I am trying to find out if there are any maintenance trials or suitable treatments that I can ask my Oncologist about. Would be gratefull if anyone who is on, or has had, carry on treatment could respond.

Best wishes to all

42 Replies

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  • Hi Nandi,

    Welcome to the site. I am a relatively new member but find the site very helpful and informative.

    I was diagnosed late stage 3c in Sept 2006 I am on maintenance chemo, have been now for 3 years and 8 months. My cancer is classed as a chronic disease and if you look for my name in the name directory you will be able to see all the chemo's I have been through, rather than repeat it all over again.

    I have been fortunate to have had Avastin for almost 3 years, but unfortunately the cancer marker has been going up during the past year so my treatment has been changed.

    I am always amazed as to how my body is able to deal with this constant onslaught of drugs, but I do look after myself. Take extra supplements agreed by the Dr and the Oncologist to boost my immune system and Tincture of Milk Thistle to protect my liver.

    Other than my cancer I can honesty say I have never been healthier, my GP says that is because I do look after myself and also I am very careful about what I eat and drink. Don't get me wrong, I am not a diet fanatic, I just keep the sugar to a minimum and red meat once a week. Also fruits juices have to be drunk with care when you have your chemo day.

    I live in Spain so I am not in a position to know where trials are being held, but there are plenty of ladies on this site on trials. Where do you live in the UK ?

    Good luck with your treatment.

    Anna xx

  • Anna, Thank you very much for your encouraging reply. I will definitely look up your treatments.

    I live in Cheltenham and although I am very grateful for the treatment I have recieved here, my oncology team are not keen on giving me a maintenance therapy.

    Milk thistle sounds a good idea for liver protection, I have already started making veg. juices.

    I hope your new treatment works very well for you.

  • Hi Nandi,

    I came to the Colbalt centre in Cheltenham on 15/12/2011 for my PET scan! I am based in Worcestershire. QE in Birmingham and also Warwick may be places I will consider in future if my local hospital will not treat me.

    Love Lizzie

    X

  • Lizzie we are neighbours! We live in Bishops Cleeve just north of the race course. I saw the PARP team in the QE and was very impressed. Cheltenham oncology is fine but it serves such a huge area and is so busy that you only see the consultant occasionally and the other doctors are different each time and seem unable to answer any questions not actually related to current treatment. My oncologist has written to the lead researcher of a trial in Oxford( 6MP BRCA) before Christmas, still no reply. Maybe I will take your earlier advice and see if I can phone their secretary to see if they have recieved it. This would not be maintenance but maybe useful in the future

    There are so many chemos that I feel sure they will get one for you. There is a Dr. Bosanquet in Bath who does assays if you have enough tumour and it is possible to get a biopsy. They test which chemo or combination works best for you. That way you do not have to suffer needlessly with chemos that have a small chance of working I have not tried this, as so far carbo works well for me and also I was told it would be too difficult to get a biopsy because of the way it comes bask as small spots.

    Best of luck, positive thoughts and love

    dorothy

  • Hi Nandi,

    How interesting! Thank you very much for that name. I have already been in contact with Prof Ian Cree who was doing something similar in Portsmouth (and now Warwick). He does it with other cancers but not oc. He thinks if they get extra funding it may be avaialble for oc too in a few years. I have looked up Dr. Bosanquet on the web and am curious if he thinks he has already cracked this, so will contact him too.

    This is a description of Ian Cree's work:

    "For the last 20 years, Ian has been involved in developing predictive methods to allow individualised therapy of cancer. New diagnostic technologies are now set to deliver better individual outcomes and improved cost effectiveness for the NHS across a wide range of diseases. Ian leads the EME programme team which is tasked with ensuring that scientific advances get the support they need to translate into real health benefits for patients. He took up the post of Yvonne Carter Professor of Pathology at the University of Warwick in January 2012."

    I did ask Prefessor McNeish about Ian Cree.

    Love Lizzie

    X

  • Hi anna, when you ca125 while on avastin maintenance, what happened next... r u on another maintenance

  • Hi Daisy

    Sadly, this is such an old post that some of those involved, Anna and Lizzie, are no longer with us. If you write a new post asking your question, I am sure there will be someone who has an answer for you. I hope you don't mind me pointing this out to you; you are far from the first person to fall into this trap!!

    Best wishes, Millie xx

  • Thanks for telling me, gosh I feel so sad hearing this x

  • Hi Nandi,

    My understanding is if you have BRCA1 or BRCA2 alterartion then PARP inhibitors are a recent breakthrough treatment. I am not sure if the trial is still running, but definitely something I would explore with your onoclogist.

    I have just come through first line chemo (carboplatin/taxol) but had no remission at all. I am therefore classed as platinum resistant. My next chemo (so I guess that is maintenance therapy) is caeylx but because of the history to-date it seems I have about a 14% chance of any response. Next chemo I would like to try is weekly taxol (14% chance also). Here in the UK there is currently a SAPROC trial that is still recruiting. As Anna says though, it depends on where you are located as to whether it is practical for you. It is weekly taxol with another drug added. I had a second opinion about my caeylx last week, and saw Professor Iain McNeish at Barts in London (2.5 hours away from me) and it is his trial. He says he plans to roll it out later this year to more sites, but currently there were very few places which are holding the plan. Plan D for me topetecan (slightly less than 14% chance of a response).

    I am hoping all these 14% chances are cumulative so I have a 14+14+14 chance of something working. Hey, I know, re-arrange staw and grasping into a popular phrase, but I have to have some hope ;-)

    Love Lizzie

    X

  • Thank you Lizzie for your advice. I have already noted down all the details you previously posted about your trip to Barts and how to go about getting a 2nd opinion. I have a wonderful GP,who I see once a month, for, as she puts it a catch up. I see her on the 18th and will definitely bring up the 2nd opinion angle. I also live 2.5 hours from London.

    I did try to get onto a PARP trial in Birmingham at the beginning of this recurrence. Saw Dr. Rea and his team. They were great, but unfortunately my disease returned as numerous small spots and they require at least 1cm showing on the scan. PPC tends to recur as spots and stranding.

    I look forward to hearing that you have good results with your new treatment.

    All the best

    Dorothy

  • Nandi, if your team in Cheltenham are not keen on maintenance therapy I should jolly well go else where and get a second opinion. I don't know Cheltenham all that well, my son was living and working there until last summer, so I have only visited once but loved the town. I really don't know what other large hospital would be good for you for trials.

    Lizzie appears to travel great distances for her treatment and I think it is something many of us are prepared to do to get the best out of what life has thrown at us - although this morning I could cheerfully curl up and die as I feel awful after no sleep and my chemo on Wed - but I laugh and carry on !!

    I also take Spirulina tablets, they contain everything that my body needs to try and support it with my appetite being bad with this chemo. My GP has also told me to take Echinecea and a good multi vitamin. Yes I eat fruit and veg, but when we are receiving chemotherapy it destroys so many good cells, we do have to try and replace those with more than a normal healthy person would need.

    Anna xx

  • Thanks again Anna. Our son and daughter in law are both drs. of biochemistry, unfortunately they live in the US, however we speak every day. They both work in cancer research, Mike, blood cancers and Jenn mostly in breast cancer. They were very disappointed I did not qualify for PARP.They are both keen for me to do maintenance possibly with low dose alkylating chemos such as melphalan.

    I know how you feel,I had chemo yesterday and it is just starting to get to me!!! Do you take multivits and spirulina all the way through chemo?

    Hope you feel better soon.

    Best wishes and love

    Dorothy

  • Dorothy, well you certainly have the best people behind you with the family working in cancer research. My daughter works for a pharmaceutical company and can give me info and help that I wouldn't normally be able to find myself.

    Avastin to me was a miracle treatment for just two months short of 3 years. I had it initially with Cyclophosmide, my Oncologist is a research Professor and was running trials out of Malaga in conjunction with hospitals in Salamanca and Madrid. I then went onto it with Carboplatin, but the cancer marker was still rising although no sign of new tumours. He is saying that hopefully if we can get the tumour marker down again there is no reason why I shouldn't go back on Avastin. I have his trial papers and he has done this with success with other patients.

    I am into my 6th year of fighting o/c and in all that time have only had about 8 months or so free of chemo, so yes I take these supplements through the chemo just to put back into my body what the chemo is destroying. It is all done with the agreement of my GP and my Oncologist. Although my Oncologist, The Prof as I call him, does think I am a bit crazy with the extra supplements I take. So many Drs are solely into medication and no alternative or complementary therapies, thankfully my GP does advise on complementary things.

    My problem are the anti nausea pills, the two types I have both have lousy side effects, guess I will have to ask for an alternative when I go to hospital again on Wed. I am keeping my tummy pains at bay with pain killers, the theory with the pains is that the disease may be trying to progress to the abdomen but the chemo is trying to stop that.

    Keep us posted on how things go with you.

    Anna xx

  • Anna It sounds as if they are way more on top of treatment for ovarian cancer in Spain than here in UK. I asked about Avastin and was told it was not approved for use here. They have never mentioned that it can be treated as a chronic disease, but I get the feeling that because I recurred at 6 months, they have given up on me!! Yet my 2nd remission was also 6 months. This is why I would like to take Lizzies advice and get a 2nd opinion on maintenance.

    I hope you find a better anti nausea pill. I find I get sick for 3 days whatever I take, but then bounce back quite quickly and feel OK. I do have abdomen pains, Like to think its the chemo doing its job.

    I so appreciate being able to compare notes with others going through the same thing.

    Take care,

    love Dorothy

  • Hi Dorothy,

    Avastin is another reason I wanted a second opinion. I am getting so many mixed messages about this drug.

    I know it has now been licensed for use with oc. It was licensed for use this Christmas Eve just gone. However, it is not on the NICE list and so you are not likely to be prescribed it!

    It seems it's effectiveness is not very clear. I know Anna swears by it. My proper onclogist told me he thinks since I have private health cover we may try using it to get some for me later down the line. Well he is now on his jollies and the bloating and signal for new treatment started while he was away. His regaistrar says they have now read a new report and it is very disappointing. I rang ovacome about this, and they disagreed it was so disappointing, and said I should challenge the registrar for references. Since doubts were creeping in about everything, I opted to go to Barts as you know and asked the Professor there. He said on the whole there was some benefit, but the subgroups were ananlyzed and it tended to be for women who had bulky disease where it could not be initially operated on. He stressed due to the cost you were not likely to get a sniff of it on the NHS. BUT there is the cancer drugs fund (although he seemed to think that was not likely to cough up).

    So I shall talk to my actual oncologist about it on 20th Jan which is my next appointment. Even if they fob me off with the registrar I shall ask to see him for a couple of minutes.

    Love Lizzie

    X

  • I am glad you have private Ins. I don't. Did you have to pay to see the Prof. at Barts? I was hoping that it was possible on the NHS. I think the crux of the matter with Avastin is the cost, neither insurance companies or national heath schemes consider it worth the cost! There are other antiangios out there but all in trials I think.

    Have they taken care of the fluid problem for you? I hope so as it is so awfull, I have had it 3 times, at the start and at the beginning of both recurrences.

    Keep positive,

    Dorothy x

  • Hi Dorothy,

    I saw the Prof at Barts on the NHS, don't worry. All my treatment has been on the NHS so far. I did explore with my GP at the beginning and surgeon and oncologist private health insurance, but they all believe my treatment will be more seamless on the NHS. I have always made it clear though that if there is anything that would improve my chances, it is is there to ask privately. They may say no - but at least I will have tried. Avastin was the first time they thought it may be worth dipping in to the private health. I need more input from my real oncologist though as he would need to write a letter requesting it.

    The professor and my own onc's registrar think the fluid is not enough to drain yet. However, cos I am only small it has a big effect on me. The registrar even said it could puncture my bowel if they tried as there is so little.

    I will confirm with my specialist nurse and onc before I decide how long to leave it. I hate the bloating. It is the worst part.

    Love Lizzie

    X

  • Ladies,, Yes I do swear by Avastin, it has been amazing for me and the trials my Oncologist has published papers on prove the drug, in combination with another chemo drug, does work for many people.I think there is a lot of negativity in the UK to the drug because of the expense. 3 years ago I was given months to live by the Royal Marsden, today thanks to Avastin I am still here, struggling, but still here.

    Lizzie the Insurance Company wouldn't pay for my Avastin treatment as it wasn't then registered by The European Medicines Agency for o/c so my Oncologist took me on as a state patient. I had to have 2 sessions done privately until they got registered me as a state patient and I think each 30min session cost about 2,5000€.

    I have a friend at The Royal Marsden on trials with Avastin and Ombraulin and she is having success with both drugs, side effects yes, but the tumours are shrinking and the cancer marker is going down.

    I think you just have to keep pushing and pushing for these life extending drugs, as I understand some health authorities will pay for them. I have to say as Avastin isn't chemotherapy you do feel so much better on the drug.

    Love Anna x

  • Hi Anna,

    Thanks for that. I think though the approval for Avastin on 24th December is a step forward. I will ask my oncologist is opinion when I see him, and see if he can get me on any Avastin trials.

    Love Lizzie

    X

  • I wish you luck Lizzie, I personally can't wait to get this blasted Cisplatin and Gemcitibane over and done with and get back on it again. I feel s...t !!!!!!!!

    Love Anna xx

  • British private health insurance does in general pay for Avastin - it depends on the policy wording. Most policies pay for a year of Avastin, some for three years. The problem is that it's not suitable for everyone and will not help some women at all.

  • Hi Chris,

    This is my understanding also talking to the Professor McNeish. He said there were subgroups which it works for, which skews how effective it seems. Interestingly though he seemed to think it worked best on bluky disease and I get the impression Anna does not have that.

    Love Lizzie

    X

  • Lizzie, I have disease all over the place. Had everything removed including the spleen, part of the cervix and also a tiny bit of bowel I had secondary lung, lymph node, liver, kidney and abdominal tumours when I was put onto Avastin. There are cancer cells circulating throughout my body trying to find somewhere to 'settle', but the chemo is preventing this I gather.

    I rave about Avastin so much as it put the lungs and lymph nodes into remission and shrunk all the other tumours by well over 50%. Technically shrinkage only generally happens during the first 6 months of treatment, but mine kept shrinking which was amazing.

    However I think the Insurance companies will only recognise payments for this drug when it has passed the final trial phase, as I mentioned earlier they told me they will not pay for treatments that are at trial stage and not registered by the European Medicines Agency. But forgive me as I am out of touch with what is going on in the UK, this is why I depend on you ladies to keep me up to date !!

    Love Anna xx

  • Thanks for the update Anna. Sorry about the typo I meant bulky not bluky disease. So perhaps you do fit the profile (without meaning to be impersonal) that Prof McNeish describes. Nobody I have spoken to yet thinks it is appropiate for my disaese profile, even knowing I would ask private health insurance if they would cover it.

    I have a couple of irons in the fire if caeylx is not working for me. This is going to be a race against time for me now though. I am bloating and CA125 doubling every 4 weeks, so I need something to slow it all down before I run out of time. Caeylx looks like it is going to take 2 months before I get a snifter of whether it is working, so I need to move on quickly to plans C and/or D if it does not. I have had 2 indpendant opinions so far from teams other than my own oncologist who say do caeylx while you can as it is in such short supply, so whilst the course of the 7 next weeks is clear, I need to have a quick reaction after that.

    Hope you are feeling a little less sh*tty now. Our poor, poor little bodies.

    Love Lizzie

    X

  • Lizzie, I knew the spelling was incorrect, we all do it at times. Yes I am sure I had plenty of 'bulk' removed at surgery lol

    I am amazed there are the problems with Caelyx, as a friend of mine receiving Caelyx from a hospital in the Liverpool area is still getting hers. We have enough to cope with our cancer without having the worry as to whether or not the chemo drug will be available.

    I am giving you a list below of all the chemos I have had, I know not all chemos react the same for everyone, but I am surprised they have put you on Caelyx so quickly. I will reply to your other posts later in the day.

    Dec 6th 2006/March 2007 Carboplatin/Paclitaxol

    Sept 2007/ Jan 2008 Paclitaxol/Gemcitibane

    May 2008 Caelyx thro to

    Sept 2008 Topotecan thro to

    Jan 2009/ June 2011 Avastin/Cyclophosmide

    June 2011 Avastin/Carboplatin

    Dec1 2011 Cisplatin/Gemcitibane

    Love Anna xx

  • Hi Anna,

    Thanks for the list - I have it carefully noted in my note book! You stayed off chemo for 6 months after first line chemo. Did your CA125 return to normal after first line chemo? I think the difference is mine actually was rising during the end of chemo, I only stayed off for 2.5 months. I don't think Gemcitibane is as popular here for second line treatment, was it given with taxol _weekly_ in your second line treatment? With the lack of caeylx that is standard second line treatment here now - weekly taxol. I am just having caeylx while I can, I might not get another chance. If you have already started with caeylx you are fine. They keep it for 'named' patients, but do not generally subscribe it to those who have not started a regime yet. That is why I have to grab this chance. With a race against time to find something which slows down my disease, I may not have until next year to wait to see if it comes online again. The prof I went to see at Barts, described it as an unforgivable worldwide c@ck-up!

    I didn't want you to think I had a new oc sub-type - bluky tumours ;-)

    Love Lizzie

    X

  • Sorry Dorothy it looks as though Lizzie and I have hijacked your thread.

    Lizzie yes my CA 125 did go down to normal after first line treatment, but to be truthful I can't remember how often I had my second line treatment. It was a while ago now and have gone through so much, I really can't remember, sorry.

    When I saw Prof Alba in Malaga on Wed I did mention to him about Prof McNeish at Barts.The Prof is always interested in what is going on in the UK. He sends some of his Oncologists to the Royal Marsden to work under Prof Kaye. He did imply he either knows or knows of Prof McNeish.

    Prof Alba attends oncology conferences in Europe and some in the States and is the President of the Spanish Oncology, so is a well know guy in the Oncology circle.

    I really wish you luck with your on going treatment and hope that Avastin may be available and suitable for you.

    Love Anna x

  • Sorry Dorothy. I am a serial hijacker and blogger :-)

    Thanks Anna. Big problem brewing. I need Margaret's dynarod soon. No movement for 2 days. Bloating, blocked bowel, chemo/anti-sickness drugs? Take your pick. Will need to ring my emergency number tomorrow unless I have 'inspiration' over night :-)

    X

  • Lizzie I am so sorry but you have really made me laugh this morning. It is so uncomfortable I really feel for you. I have been laxative free for a few days now and am getting the bloated feeling, so took some last night. Good luck for us both today.

    I have had long chats with my GP re laxatives and most of them cause bloating. She has prescribed drops for me called EVACUOL, what that would be in the UK I have no idea. But I take 5 drops in water at night and what it does it moves the faeces through the bowel, but doesn't soften it unlike other laxatives. She tells me it is the softening and the swelling of the faeces that can cause wind and bloating.

    Sorry to be so descriptive but I think we all need to share with each other as much as we can. EVACUOL is made here in Spain by a company called Almirall and the generic name is picosulfate sodium. Believe me it is the best one I have ever taken. Just Googled it and there are English websites for it.

    Happy movements lol

    Love Anna xx

    PS my GP said to be worry if you haven't had a movement for 5 days !!!!!!

  • Fancy laughing at my expense ;-) Seriously, if we can't smile sometimes about this fix we are in, then we truly are lost. I did have a bit of a 'break through' 2-3 times today, so will save the heavy guns for now.

    Love Lizzie

    X

  • Hi Anna and Lizzie,

    I am very interested in your posts and feel you answered my question very well so pleased do not feel you have hijacked me.

    I too have suffered with constipation on this journey but since my Onc. prescribed Laxodol have had no problems. It is also known as Movecol I think.

    So hope you will get some resolvment soon for all you discomfort Lizzie, I really feel for you.

    my problem is horrid pain from the tummy button down to the pelvic bone. Its also tender to touch, wondering if it is an irritated bladder, will mention it at clinic a week tomorrow.

    Take care both of you,

    love from Dorothy

  • Hi Dorothy,

    Thanks for being understanding. You may see above I told Anna I had a few break through moments today. I have been given the name of something to try by my supporting out of ours oncology team, so will pick some of that up at the next sign of stopping. Laxtulose is the name of it I believe.

    The pain from tummy button down sounds like another burden to bare. Are you taking any pain killers? Sometimes I like to know a pain is there so I know when it has gone :-)

    Please let us know what the clinic says, and take good care of yourself too.

    Love Lizzie

    X

  • Dorothy, I think every pain we have is worrying. The pains I have been experiencing with my latest setback and which put me in hospital for 3 nights in the UK - I was told to control by taking regular pain killers. If after a while I feel OK, decrease them and gradually stop them if the pain disappears completely. I tried that and it really did work, but it was getting the right combination of pain killers that was the problem.

    Happy movements Lizzie lol.

    Love Anna xx

  • Just succumbed to taking lactulose. It is gorgeous!

    Love Lizzie

    X

  • Did it work Lizzie. ?????????????????????

    xx

  • Yesterday it did. Although, I was sick in the afternoon. Took it at 12pm, sick about 4-5pm and it rocked my system by 8pm. I took some today about 4pm, as body still not really feeling that way naturally so now I am waiting for the rocket to hit later. Not sure why I was sick....chemo, bloating, disease, lactulose who knows? Feeling much better today though, especially if the lactulose does it's trick again.

    Love Lizzie

    X

  • Lizzie I certainly know that the laxatives I have been taking up to this present one have been full of sugar and both my GP and Oncologist have said they do cause bloating. This is when I was getting the tummy pains and feeling and being sick. Have you been taking your anti nausea meds ?

    Hope tomorrow you feel better.

    Love Anna xx

  • Hi Anna,

    I don't feel bad today, but didn't have the same success with Lactulose yesterday, nor today yet. I have phoned my GP and he is cooking up a prescription now. I suspect it will be Movicol and something else. Let's hope it does not strike while I am at my scan and appointment tomorrow :-) They have decided to ultrasound scan my tummy to see where the ascites is and mark for possible drain if oncologist wants me to. Apparently the ultrasound for my spread to left breast is being done via some breast clinic which I should hope they'll tell me about tomorrow. It all seems overly complicated to me. If they scan my tummy why not scan my breast while I'm there. Hey ho!

    Love Lizzie

    X

  • Lizzie, pleased you feel better today and pleased you are getting another laxative. I am definitely really pleased with my new one as it does not cause bloating and pain.

    I wonder why they can't do an ultra sound on the tummy and the breast at the same time. I always have thorax and abdominal, both done at the same time. Not unless the breast needs a different machine - I don 't know. I just hope they get to the bottom of your problems. On the other hand they don't like doing ultra scans too frequently because of the radiation.

    Good luck tomorrow.

    Love Anna xx

    Love Anna xx

  • Just to add a little to the Avastin discussion - I asked my oncologist about it at end Jan. He said that it was in the final stages of acceptance for ovarian cancer - though I am not totally sure what that means in terms of actual availability. He also implied that it was expected to be more effective in newly diagnosed patients. I was diagnosed in June 2005 and just started yesterday on 5th line treatment with topecan.three Mons. out of every four.So - there seems to continue to be confusion about Avastin - both in terms of availability and effectiveness but I note Anna's good reports of it and may use them to lobby for it if I get to that point.

    Thanks to you all for useful info.Love and supportive thoughts.

    B.

    I should perhaps add that i am in Scotland but the 2 systems tend to follow each other in terms of drugs,etc.

  • Hi B,

    Just coming back on this post as I have been having discussions on another cancer forum re Avastin. The comment I was given was and I quote 'If you have a Friend in in the UK who has an interest ask them to e mail the Health Secretary with "The Question", he will respond because he has Duty of Care.

    As you will see by my post above, I had my fair share of other treatments before I was put on Avastin and a daily Cyclophosmide tablet. It put my lung and lymph node cancer unto remission and shrunk the liver and kidney tumours by over half. So to say it is only affective in newly diagnosed cases is a load of bull !! My Onc had a 60% success rate with this treatment, which to me is pretty good going.

    I notice it is 10 days since you last posted, any more news on Avastin availability ?

    Love Anna x

  • I have been put on Avastin as a maintenance treatment. It's working well I have it every 3 weeks. I have heard of dome women on Parp inhibitors too . All the best - Trish

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