AN UPDATE.....PLUS A GENERAL QUESTION OR 2

As we expected last Fri our Onc said NO to more chemo, said it will not work. Now this is the same Onc that said the same 18 months ago and was then prepared to 'give up' until i persuaded her to refer us to the Marsden for a 2nd opinion. The Onc said all they will do is a trial, but the Marsden gave my wife the chemo that i had asked our Onc for.

Strangely on Friday our Onc said more chemo (carbo or carbo plus ???) will be too harsh and wouldnt work. HOWEVER she then followed that up and said but i will refer you to the Marsden for a trial if you like........IMO a trial would or could be harsher, and besides my wife isnt strong enough for a trial anyway. But for me it was strange that she said no to Carbo, a pretty easy chemo the scheme of things but would refer us into the unknown for a trial.....

Then on Saturday in the post we received a copy letter from our Onc which basically said (but we hadnt known before) that the CA125 had fallen from 3200 (mid feb Marsden) when they stopped Caelyx after 3 sessions, to 2500 on March 1st.

Had i been given the figures then i would have naturally assumed that Caelyx kicked in at the 14 week stage and said no to the Letrozole which we were taking not knowing if my wife was ER positive or not.

So yesterday i emailed the Onc and she said different machines give different readings. Perhaps so but they didnt 18 months ago and not so wild a swing as this.....i think.

So we are mulling it all over .....anyone got any thoughts on the Onc and/or the swing in CA125 levels being purely a machine difference??

LASTLY glad to read you all had a good time in London.

19 Replies

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  • Its true CA results differ slightly between labs/machines but if it shows a decent trend then it can be used as a reading. I cannot understand why the onc does,nt try cisplatin, topotecan, cyclophosamide, caelyx again and although letrozole did not work why not try tamoxifen. I think a 2nd opinion is crucial. Rgds Paul

  • Cheers Paul, yeah i can see different machines being slightly different but not over 700 points in a 2 week period, especially as before the machines were virtually identical. To me the Onc is just one of the 'thats all now folks' brigade, and i dont know if its her or budgets or both. I mean she is a nice person but just kinda gives up.

  • Dear Laurence

    This is a really difficult time for you both. I'm in good health at the moment but because I'm a bit of a pragmatist think a lot about how the disease will progress and try to visualise myself a little further along the line and the choices I will have and the decisions I will have to make.

    Inevitably one day an oncologist will give me the same news that you are currently processing. You may remember our dear Lizzie who fought to the end and insisted on more Taxol even though she knew it wasn't going to do her any good. I believe she insisted on it because that option for her was more comfortable than not having any more treatment.

    I expect your oncologist said they'd refer you to the Marsden because she believes there's nothing else she can do and she's given you an option. It looks as though you have jointly come to the conclusion that it is not a practical way forward.

    I wonder if it's an idea to organise a meeting with a Macmillan Nurse to discuss how you feel and whether there are more than the two options you've been given - to accept your oncologist's word or to refer your wife to the Marsden. I would have thought she would have good advice and would be a great support as you're making these difficult decisions.

    I'm sorry I can't suggest the miracle you mentioned a week or so back.

    Meanwhile I shall be sending the CD of music to you. I was given a present at the weekend and resolved to spend it on a CD writer for my MacBook Air so I can get the playlist copied on to CDs. I'll send yours on first. It's a sort of hug from all of us to you.

    with love to you both, Annie

  • Hi Annie

    Firstly a big thanks for the CD and we look forward to getting that. As for whats next it is a real 'what to do' thing. I do remember Lizzie and i think her way would be my way, except oif course its not my way and Christina is more inclined to just go along with what the Onc says, then i would.

    I am also mindful that i dont want to push Christina into doing something just to please me and its trying to find a balance between what she wants, what she is capable of doing and what anyone will do i.e Oncs.

    Tomorrow we have a meeting with the Macmillan nurses down at the hospice so i will tactfully raise this subject.

    I guess i just feel the Onc should have seen the drop in CA125 and jumped on that to see if the Caelyx should have continued for a 4th session OR tell us or Marsden that best to check levels at the Marsden again just in case. The fact she didnt makes me feel that in effect she was just writing a prescription for Letrozole without any real thought. Of course just because i think that doesnt make it so, but equally it might be that was the case, because history suggests the Onc does give up easily.

    Its all such a bummer and i, we, feel as if we are swimming against the tide.

    Very glad your health is fine - long may it continue. x

  • Thanks for your feedback Laurence. I do so much respect and admire the way you are coping with this and your attitude to your wife's wishes. It's always difficult writing a post at this sort of time and I rarely contribute on such sensitive topics because this site is rather an open forum and we're talking about a very intimate subject.

    The roles of the carer and family are exrcruciating. Those of us with advanced ovarian cancer are preparing for death in the sure knowledge that there will be no more suffering after that moment. Indeed many people have a faith which paints an even rosier picture of death. Meanwhile our loved ones are bewildered and hurt because of our acceptance of the inevitable. Of course when our suffering stops the suffering of our loved ones goes on and on.

    I've thought long and hard about this very painful subject and I've come to the conclusion that my loved ones will cope better if they can look back and say 'she had a bl**dy good time and she had no regrets'. For me, I'd hate to have a slow decline and leave behind a lasting imagine of pity and sorrow.

    Sometimes you can feel a pang when a friend says they're in remission and you're not in the same place. Just in case I made you suffer in any way I should explain my health isn't exactly fine. I'm starting to relapse and I shall I resume chemotherapy soon - the timing of which is a matter of who loses their nerve first - my oncologist or I. There is no science to treat this disease I'm afraid which is probably what causes you the most distress.

    I'm pleased if the music can be a comfort. Your posts are also helpful to me because they inform my planning and preparation - so thank you for that.

    best wishes to you both, Annie

  • Firstly absolutely no 'pang' when you or anyone else is feeling ok, better or in remission etc. At some stage i guess everyone is in one set of shoes or the other.....

    Secondly, thanks again for you all your wise words, to me and to others when you respond. x

  • I don't think different machines would have that sort of a difference. I know that my CA125 varies from machine to machine. But only by a maximum of four or five points. I know that difference reagents were introduced in the US a few years ago, which cause many women's readings to double. But again the difference was a maximum of twelve points. I think it's unlikely a difference of 700 could be caused by the machine/reagents alone.

    I think you're at the point where you need a second opinion. Would you consider a private second opinion? It would cost around £500 I think. It's just that I know of an expert in carboplatin who only works in the private sector now.

    I too initially had a defeatist oncologist. I found another one and so far I have been weel for three years. I believe the first oncologist's gloomy attitude could have helped a recurrence.

    You are in an incredibly difficult position. I can only say that my thoughts are with you and I hope you find the resolution that you are both comfortable with,

    Cx

  • Going privately for a 2nd opinion would be ok, but private treatment would be a problem. I have had an emailed 2nd opinion from Prof Justin Stebbing at Charing X hospital who believes that a 'platinum chemo' after 11 months off of platinum would be worth a go....so if we ask for a referral i guess thats where we will ask although i will probably email 1 or 2 other Oncs prior to that.

    Very much appreciate your comments x

  • The body can become resistant to some treatments but they tend to lose that resistance after about 12mths. I would ask them to explain why cisplatin could not be considered against carboplatin. We too are reaching a similar point but they are offering a repeat of Caelyx but as single agent. I think we are fortunate that a team of onc seem to make a team decision. Rgds Paul

  • Problem is Paul we only have the Onc, not a team, and its her way or the highway.....she isnt a natural communicator, doesnt like to be 'questioned' and doesnt really involve you in the decision process. It is more of a 'this is my decision and thats it'....obviously not quite as B & W as that, but kinda.

    I am convinced that another Carbo would help, but to what extent it would help is the question. Would it take her current quality of life and make her weaker?

    My hope, if we end up with Carbo. is that any effects on her from having it, would eventually go and the end result would be more strength and more time.......but the million dollar question, is in reality would it?

    I have empathy with your situation and hope that if you take the Caelyx again, you get a positive outcome from it. Take care.

  • Dear Laurence,

    I do not have much to add to the others helpful posts although I am inclined to agree with a lot of what Annie says about having a b***** good time.....

    It is just a truly horrible and difficult position to be in and I really feel for you both.

    Anne x

  • Thank you x

  • Hi Laurence,

    I agree with Chrystyn's wise advice, my gut feeling is that it has nothing to do with differing machines (although I am aware that this can happen) please go for a second opinion, I understand where your lovely wife is coming from (as we don't like being pushy) but I am glad she has a caring person like you to fight her corner (as indeed I have with my husband)

    I know if I was in the same position I would want my husband to step in....and even though I have faith to believe that I am going to a better place...I wouldn't like to go without first exploring all avenues as I strongly feel that this is the right way to go.

    Pursuing other avenues doesn't mean you are not accepting the inevitable (or are that you are in denial) but that you are doing all you can to change things... this surely demonstrates true zest for life.

    Referring to Lizzie case I don't think it took away Lizzie's zest for life and I feel that her husband has the reassurance that they both did everything in their power to do what they could to prolong her life and I shouldn't think for one moment that they regret the decisions they both made....I would hate to leave my family feeling that I didn't do whatever it takes...and speaking for myself and I feel that others can see that I enjoy life to the full..so treatment doesn't take away this inner happiness.

    As you know we've just come back from London...could you email Prof Iain McNiesh and ask his advice? because there's a man that is out to save lives and fights our corner... I have never met anyone with such enthusiasm.

    Love and best wishes to you both love x G x

  • Hi Gwyn

    Thanks for your words, very appreciated ........i am going to look up the Prof you mentioned, but if you have his email address could you PM me please,

    My gut feeling is we will end up going for a referral, if only to either put my mind at rest, give some optimism or acceptance to Christina (& myself) and know that we have kind of tried all the paths. x

  • A lot to take in and I can only tell you my personal experience of CA125 blood test. For me they are quite a good indicator and only once was there a sudden spurt which the Oncs later said was probably a blip because CA went back to usual again.

    Regarding Trials, I do know from personal experience that the patient has to have a "Performance level" (can be Googled) of at least 2 (I was probably 3 quite often sitting in a chair for most of the day, but smiled and never let on) and not too underweight. My weight of 7st at 5' 7" tall is the lowest I could stay on the trial. I get very weak about every 3 weeks when my magnesium is low but pick up after a 2 hr hospital infusion I pick up. I also find drinking a glass of water gives me more energy (although I detest water) So, important to build up before enquiring about Trial.

    Regarding treatments, the following hospital letter history which I have summarised may be of interest:

    29/12/2008 Diagnosis high grade serous adenocarcinoma (inoperable)

    several different chemos (the first line ones, finallyTaxol weekly) with reduction or stable disease until :

    26.01.11 - disease progression

    Feb 2011 8 cycles Caelyx, - disease progression

    Nov 2011 Letrozole - Disease progression

    05.12.11 commenced a Phase II Trial of a drug for advanced cancers - partial response and stable to present. (The ovarian trial has now been concluded for Results)

    Its a difficult one. In view of the fact a Trial has worked longest for me I think some of the Trials are quite hopeful. I would research each one carefully. I have been told that if I don't improve on my weight = blood results = Performance level I may not be offered further treatments .....so excuse me if I end now to tackle my Heinz macaroni cheese with grated cheese on top.

    Lots to think about, sometimes thinking outside the box can be positive too like Annies blog. I am sure your Onc will come up with some plan or other. Please send your wife my very best wishes Summer has almost arrived, do not give up hope. x

    Jen

  • Hi Jen

    I was interested in your reply what was the phase ll trial drug for advanced cancers, was it a combination of chemo or a tablet. I know it has concluded , but would be interested to know which trial it was.

    Many thank Barbara.

  • Hi Barbara

    The trial drug was called XL 184 but I think it now has a name Carbozantinib. It is 2 capsules daily and hopefully now the trial is concluding, the results will be published this year.

    I commenced the trial in Dec 2011. A few hundred patients from several countries commenced on 100mg. but due to intolerable side effects many patients either came off, or the dose was lowered to 60mg and after further adverse side effects, further patients were either taken off or given a dose reduction to 39.4mg which I commenced in June 2012.

    There are only less than a handful of patients left on it. A phase III trial has now commenced for prostrate cancer and the commencing dose is 39.4mg, so whilst the drug stabilised the disease, at least we Trialers have been useful with regards to combating side effects and dosage.

    I personally think it is one to watch.

    All the Best

    Jen

  • Hi Jen & thanks for your response. My wife also has high grade serous but diagnosed in Oct 2010 and unfortunately never had more than a few months 'remission' during her past 5 cycles of Chemo.

    We are 99.99% sure we could not go on a trial because of firstly her performance status and secondly her sodium levels are too low and nobody can seem to fix that no matter what we try.

    Unfortunately the only plan our Onc has is - a big fat 'nothing more can be done', which whilst that may be the case, for sure she is definitely not going to try anyway.

    Not sure my wife has any fight left in her, so really not sure what if anything we will do next.

    Take good care x

  • I think its really awful when they say this and I told my Onc recently (who is the kindest) "the Sponsors surely cannot say Bye Bye Go away and die we all need hope".

    I dont know why something can't be done about your Wife's blood deficiencies like a fluid infusion. I was told a couple of years back that I could ask to see a different Oncologist if I was unhappy.

    I meant to say previously that I am a great believer in Carboplatin because in 2009 when I couldn't hold my body up Carbo brought me back to life and if I got like that again I would ask for Carbo to buy me a little 'thinking' time.

    You will do what you both feel best knowing your curcumstances and I shall be looking out for your blogs with fingers crossed. No need to reply to this you have enough to do.

    the ver best

    Jen

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