Lymph node lady at chemo train station. Help !

Hi everyone

I have bought my ticket and now I am just waiting in fear at the station. Am I just imagining it or is it more stressful second time round ? I have my prelim talk , ECG, X Rays etc next week and start early the following Mon morning. Have I now learned too much and question more since first time round ?

My BIG question is why am I being given Carboplatin only ? The CNS just told me that Taxol is too severe even though I tolerated it very well last time. Anything I have read indicates that the combination of Carbo and Taxol has better outcomes for recurrence especially as I am not Carbo resistant . Does anyone out there have experience of Carbo only for second time round ? I forgot to ask if I am getting a stronger dose of Carbo than I would with the combination.

I would be so grateful for your thoughts on this. Being a morning grouch the early start will almost finish me off so if I have one less thing to worry about that would be great. If anyone has experience of Carbo only and why it is an option please let me know. It will really set my mind at rest. Thanks all you lovely ladies

XXX

44 Replies

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  • I had carbo only for recurrence, my oncologist did want me to have Taxol as well but my Macmillan nurse said it only accounts for a 5% top up on Carbo. So after a long session and me being anti chemo anyway I settled for no Taxol. The figures apparently do favour combination but not by a lot, so I would follow their lead or at least ask for a good explanation

    LA xx

  • Thanks Lily-Anne for your very prompt reply. I really appreciate your thoughts on this. My oncologist was the one who decided . I had no say in it . In fact I didn't even see him so his nurse told me. I will certainly be querying further as I would have liked the choice. Take care and thanks again.

    XXX

  • I can't help at all Molly but I just wanted to wish you well for your appointment today and hope you get some satisfactory answers. Jemima xx

  • Thank you Jemima

    My appointment is Tue so fingers crossed I will get my questions answered . Will let you all know how it goes.

    XXX

  • Hi MollyO

    I have no experience either,but hope you got reassuring answers to your questions.

    I wish you all the best for whatever is planned for you,

    Carole xxx

  • Thank you Carole

    I hope I get my answers on Tue as I have phoned them. For the first time ever I am taking someone to my appt as I never wanted to upset my family by taking them along. In retrospect I now think everyone should bring somebody with them. I found to my cost that going alone leaves you vulnerable to being intimidated especially if you have a sensitive nature. Anyway this is a new beginning so I want to start with a clean slate and all the decks cleared. I want to be positive and as cheerful as I can be in the circumstances . Take care

    XXX

  • HI Molly O, I have read your post and I think it is a good idea to bring someone along with you to you appointment. I find that a second pair of ears pick up what we patients miss, and I for one tend to miss the good bits. Any questions that come into your head write them down and bring them with you, it might be a good idea for you to show your questions to your companion while waiting to be seen. I wish you the very best for Tuesday. Best wishes

  • Hi Suzuki

    She will be staying with me the night before and has been a very good advisor all along. Don't worry about me writing down the questions. From the very beginning I have had my list even before I got my diagnosis. I do think it may well annoy them . I suppose they can get through more patients if we don't delay them with questions ! Or am I bring too cynical ? Believe me on the first time from start of chemo I was like a little mouse. It was when I had finished and just had three monthly check ups that I began to question a bit more. Plus I had found this website over 2 years ago and discovered such a variety of experiences from different women's stories. Now I question everything but I think that is our right . Thanks again as always for your very wise advice

    XXX

  • Hi , I've just had my 3rd cycle of 2nd line chemo. I'm on taxol and carbo again every 3 weeks. I had been reading that some ladies were having it every week for 18 weeks when I asked why I wasn't doing that he told me that this regime had worked for me previously so hopefully would work again. I also have gone 23 months since the 1st chemo and I believe the longer you go between chemos the more chance you have of getting back in remission. I would make sure you ask why you aren't getting the taxol. I was like you first time round I never asked or questioned anything and I wish I had now. As I'm having to self fund the avastin which is no longer funded. Just another worry on top of what I'm worrying about already. My family are walking the 3 peaks and doing fund raising to help towards the drug. I keep saying to them I'll be on a street corner soon rattling a bucket. Lol. Take care. Val. X

  • Hi Val

    Thank you so much for replying to me and telling me of your experience . I have already phoned them but nobody there from my team. Will phone them again on Mon and insist on an answer.

    I have been 5 years without recurrence which I know means that I am not allergic to platinum so that should be fine . I never had an adverse reaction to Taxol so it doesn't make sense not giving it to me again . Of course I had the usual pins and needles but that faded away as time went by. It may be some other reason they never told me about.

    I was also interested in your comments about Avastin. It is dreadful that you have to fund it yourself. Quite early on I read about Avastin and I asked about it but my question was just dismissed. Since I joined this forum I have learned that lots of ladies here in Ireland have been offered Avastin. I am not sure if they are public or private patients. In this country we have a very distinct 2 tier system. Those that can afford private insurance get the top treatment which includes seeing your oncologist at most appointments. Those that can't afford it get in line. I am in the unique position that I have private insurance paid out of my meagre pension but my nearest hospital is public only so therefore I join the queue. So as they say I am caught between a rock and a hard place ! Anyway Val we will fight on and some day maybe this horrible disease will be history. Take care. Will keep in touch

    XXX

  • Hi, when I asked my oncologist about funding Avastin myself she said that she had discussed it with the head of oncology at the Bristol Royal Infirmary (which I fall under although down in Weston) and said they would both feel very uncomfortable with me paying for a drug that was basically not worth it. But obviously you have had no problem doing it. It is still used in loads of countrys including the usa, but not the Uk. They are trialing something that works the same, METRO-BIBF trial which I failed on one liver test, half a point.

    Would be interested to know how your oncologist was with you paying for it.

    Thanks.

  • Hi Trix

    I think this last reply of yours is meant for Val who is known as couls on her blog. She is the one who said she funded her Avastan. I never had it even though I asked about it.

    I hope she gets to read your question. I think what may have happened is that my post jumped in ahead of yours ! That is my non-tech explanation . I will never ever get a job on an IT help desk ! Have a lovely weekend

    XXX

  • Hi, my oncologist doesn't like the idea that you have to pay for it. But I told him that is what I wanted to do. They still give it to 1st line chemo patients and as there doesn't seem to be much out there for us I'm prepared to give anything a go. The problem seems to be avastin only seems to give on average 4 extra months progression free survival. But some people do get longer. It just depends on the person I suppose as some ladies go 5 years before a recurrence . I only got 23 months. That trial you were hoping to join were you guaranteed getting the drug ? As the one I joined it could have been a placebo and probably was as my cancer progressed. I did ask if there were any other trials I could join where I would get the drug but was told there wasn't. Val. X

  • Once more Val I got between you and Trix. I hope she reads this a I think you meant it for her !

    XXX

  • Hiya Molly,

    I asked Dr G about Avastin and he said that because there was less than 1cm of residual disease remaining after the op - I wouldn't qualify and in his opinion it wouldn't benefit me anyway. As for the Taxol question; they stopped it for me for the last chemo because of neuropathy. I was walking like a duck. 😒... I was worried at first but then read that it accounts for just 5% of the effectiveness of treatment and Carbo is the main weapon. I do wonder why they give Taxol at all except to those who are Carbo resistant.

    Thinking that maybe because you have gone so long the Carbo will be enough and won't be as harsh?

    Thoughts are with you my friend. Wish we lived nearer.

    Actually wouldn't it be nice if we all did? Like a little commune...

    Debs xxx

  • Hi Debs

    Thanks for getting back to me. You must be a night owl too ! I am so glad I put up that post. I went from a feeling of being deprived to realising that my oncologist was probably being very wise.

    So many posts here saying Carbo only is no problem. In fact I will be glad not to have to face the effects of Taxol . I hope it would mean my immune system wouldnt be as bad so I could get to wedding in Sep. It is a few days after my second treatment .

    The other thing I am a bit worried about is can you go from being platinum sensitive to platinum resistant ? I have also read that some women had severe allergic reaction to the Carbo.

    I suppose these are things I can ask the CNS on Tue. She will be trying to figure out the slightly hysterical message I left on her phone yesterday !

    Yes . It would be lovely if we could all have one big party and kick this blooming disease into Kingdom come !

    I hope you are feeling good yourself and that you are in a total relaxed mode planning wonderful events . Now this night owl is getting into bed instead of lying on top of it ! To be continued.

    XXX and ZZZ

  • Thanks Val, the trial was 50/50 as to whether you got the drug, with my luck it would have been the placebo but I did not get on it anyway. X

  • Hi MollyO - I'm about to agree a start date for 2nd time around too.

    For me it's Carbo and Caelyx. 1st time round it was Carbo and Taxol (then Taxol was stopped after 3 sessions) so leaving Carbo only. From everything I've read, it's the platinum Carboplatin that does all the donkey work for us. The other "mixers" in the cocktail are nice-to-haves. Hope that helps and wishing you all the best x

  • Hi Minard

    Thank you so much for getting back to me. I really appreciate that especially as you are getting ready for your next treatment. I haven't found a Carbo only second time round lady yet . I guess Taxol doesnt suit you as they had to take you off it first time. That never happened with me which puzzles me now. There could be a perfectly reasonable explanation on my file which I am not aware of so I have left a message with my nurse to check with my oncologist. I don't mind as long as I know why . I wish you all the best with yours. I go on the date every day so if you post I will follow your progress . Take care

    XXX

  • P.S Minard I don't mean going on a date every day. I wish ! I meant I go on the website every day . Ha ha

    XXX

  • lol x

  • Hi MollyO just want to wish you the best of luck for tuesday, will keep you in my thoughts and prayers.

    Take care

    L x

  • Hi Lorent

    Thank you so much for your prayers and good wishes. I really appreciate it. Sorry I thought I had replied to you yesterday .

  • Hi there,

    I was on carbo with taxol and then just put onto carbo only for my last two chemotherapy. Onc decided, but I believe it is the carbo that does 95% of the work.

    Sorry to hear you are on second line.

    Without the taxol you probably won't lose your hair either. Mine has grown with having carbo only so no longer bald which does make me feel much better.

    Take care,

    Mandy, xx

  • Thank you so much Mandy

    You are so good to reply. Did your oncologist tell you why he wasn't including taxol. To be honest I didnt mind losing my hair first time round so it would not be a consideration for me. I would worry more about ending up looking like Worzel Gummidge or a scarecrow as I understand Carbo can thin your hair ! Mine is really fine and it actually grew back curly and thicker after the first time . Ah well. It should be the least of my worries. Will keep everyone posted

    XXX

  • He didn't say why specifically. I had read on here quite a few ladies having carbo only after debulking so just thought it was normal.

    I will ask when I see him next.

    Cx

  • Thank you Millie

    It would be good to hear why. Will let you know what answers I get fom my team . Take care

    XXX

  • Saw my onc on Monday, MollyO - she said if I ever needed another lot of chemo it wouldn't be taxol because they wouldn't want any neuropathy to get worse. I think taxol does quite a bit of damage compared to the benefits. I was told it would be carbo and 'something else' if I need more but I am fully determined not to think of the recurrence option at the moment. Thinking of you and hoping all goes well. x

  • Thank you Harpist

    Your reply really helps me . I realise I don't want Taxol if I can help it but if I can tolerate it I would like to know it would be considered . All the really helpful answers here really help me make up my mind . Thanks again .

    XXX

  • Hello,

    Actually had Taxol alone as 4th line. Had to stop it because of tinnitus. Didn't worry about it at first (also had it during Carbo+Taxol as first line) as it was minor and thought it would disappear. But one day, huge noise in my head, vertigo, and bang, severe tinnitus. It's "for life", it's a pain (physical and mental - need sleeping pills to be able to sleep a bit) and it prevents me for getting most platinum agents (currently have Gemzar + oxaliplatin, the only platinum agent left for me because of Taxol...

    Maybe your onc considers it may generate permanent damages to your body...

    Véronique

  • Thank you Veronique. That is very useful information and certainly makes me think. I wish the medics would tell us all that as the more knowledge you have the better the decision you make .

    XXX

  • I'm afraid I don't know the answer either, but good luck for the next couple of weeks xx

  • Thank you very much. I appreciate your good wishes. I call myself the drama queen but most of my friends think I am too quiet ! Now I am shouting at last . This disease needs to be dead and buried. Not us !

    XXX

  • Can't give you any advice Molly, but wishing you all the best for your treatment !

    With best wishes

    Judy x

  • Thanks Very much for your reply Judy

    XXX

  • Hi Molly, My Mum had carbo only for first line - this doesn't correlate to your present circumstances but it's a positive for how effective it is as she never had a recurrence and is still here twenty two years later :). Wishing you all the best for successful treatment and yes I agree it all seemed much more overwhelming at recurrence!

    Take good care. Sandra xx

  • Hi Sandra

    What a positive reply. Thank you so much. Good for your mum.it gives me hope and inspiration and stops me thinking I was short changed by not being offered Taxol. Now I am more confident in asking my questions next week. Every answer here has helped me so much. Take care

    XXX

  • Hi. I am also starting on Carboplatin . Weekly. I am platinum resistant and have neuropathy from1st line. I had been on Letrezole but it stopped working. I just wanted to wish you good luck and let's hope we both have some success with this regime.

    X

  • Hi there

    I really thought I thanked you for your reply this morning . I wanted to wish you good luck too but I also had a question. I am puzzled that you are getting Carboplatin if you are platinum resistant. Maybe its different if you are doing weekly and perhaps the dose is not as high ? We will both compare notes as we go along. All the best and we will stay positive. Take care

    XXX

  • Hi. I would think it may be that I have been of treatment apart from Letrezole since October 2014. I have read that after a long break from it , it could perhaps have done effect 2nd time round. Yes let's compare notes and hopefully we will both get good results. Look after yourself. X X

  • According to my research and discussion with my oncologist, taxol is one of the most toxic of the chemo choices. There have been studies to indicate that carbo alone is just as effective as the combination. One study from the UK even said that most countries have stopped using that combo. It said it was used in the US just so oncologists and, to my mind Big Pharma, could make more money. I personally insisted on single agent Carboplatin. It's your choice. Mparticular situation was stage 1A but high grade.

  • Hi jmack

    I really appreciate your taking the time to reply as it is really interesting to read your findings. That puts a different complexion on things. I do know that it is the Taxol that does the damage but I would have been willing to risk it if I thought it gave me better odds. Maybe my Oncologist is more with it than I gave him credit for ! Unfortunately he wasnt there when I got my results and my treatment plan was given to me by phone by the CNS . Your reply along with all the others has been so helpful . Have a lovely weekend. Take care

    XXX

  • Look up the ICON3 study in the 2002 Lancet. The other follow up studies were one from the UK in 2005 and another from Cairo in 2009. Yes. Give your oncologist some credit. Taxol is not even effective in every case. Yet they add it to everything. Single agent carbo takes about 30 minutes to administer where Taxol takes 4-5. Therefore it costs more. It obviously depends upon your situation. Likewise your oncologist obviously considered your particular case before making a decision. Bravo to your onc for not making you take a toxic substance you don't need.

  • Hi jmack

    Thanks for telling me about those studies. I will definitely be reading them carefully over the next few days. Someone else pointed out to me another study done in 2007 which more or less is agreeing with what you say. I had never read any of this before despite thinking I had read every possible publication about OC and PPC . I am so glad I put up that post asking the question. As you say I should be thanking my oncologist . I have already left a message with the CNS asking why Taxol was dropped . My appointment on Tue should be easier now that I have clarified things in my own mind. This is all down to your good self and the other ladies who told me of their experiences. Thank you once again. I really appreciate it.m

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