Hello ladies, I had chemo today and I told the nurse that the neuropathic is unbearable. She rang the oncologist and he said to stop it. I feel a bit upset because I said to the nurse will the carboplatin be as good as combined carbo/taxol, and she replied that I am only having aduvent chemotherapy so it will be fine. Then I said to her , well why have it at all. She never answered. I am pissed off and very emotional,and she took me off the steroids. Do you have any advice, has this happened to you and how did you get on. I am just afraid that the chemo is lesser now and may not be able to kill all the cells (if there are any at all. Am I overreacting on this one?
Thanks
Damelza
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Damelza
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I don't have any experience of this,but I think you need to ask for an appointment with your onc with a list (from you) of questions that you need answers to.
It may mean the nurse isn't qualified to give you the answers you need,so don't get demoralised and the answer from your onc may have been a knee jerk reaction until another plan is put in place.
As you know, until a plan is put in place we all tend to panic, but you haven't talked to the main man/woman to discuss this yet.Chin up and try to occupied yourself with things you like best,
thanks Caroles, I just want a few answers, and I will get them in time
Best wishes
Well you have had four full treatments so that has to count for something. I did have neuropathy with that regime, It is hard going. I would imagine you seek an apt with your Onc as soon as you can and discuss the matter with him. So really you are only losing out on two taxols and that is okay, Perhaps he could have lessened the dose rather than cut it, I missed out on two Gemzars one due to low blood count and another due to Xmas but I didnt have to play catch up. So perhaps its the first few treatment which count the most. I suppose they felt you didnt need the steroids with just Carbo but I do agree questions have to be answered, Can you ring your gynae liason nurse if you have one.
Thanks Suzuki, yes I should ask the nurse could I speak to my oncologist. I am just thinking that if they stopped it now why did I have it in the first place. Who knows.
Don't know if you have the same Med Onc as me but you probably do! Originally he told me that 4 treatments would probably be enough it was only when I was tolerating it so well that he said that we might as well do the 6 so I think 4 is prob enough! In any case there are a number of women on this site who have only had single agent Carbo and never had Taxol. It would also appear that some of the research indicates that it's the Carbo that does most of the work and the Taxol doesn't actually have that much more to add!
I can see why you are upset though and I am sure the neuropathy isn't helping either! Hopefully that will ease off now that the Taxol is stopped but I think you have had 4 treatments and with luck that will have knocked out any rebellious cells!
Sorry to hear that the neuropathy is bad and onwards and upwards to your last Chemo! I found my last Chemo very emotional and the sense of relief was amazing!
Aww thanks D, Maybe it is enough. we just want to be rid of it but there is no guarantees with cancer and I accept that (most days). I used to have 3 1/2 hours of Taxol and then 1 1/2 hours of carbo so now my final chemo will be short and sweet. Of course you would be emotional on your last chemo but to be honest D i am worried about what happens after chemo. You were in contact with the oncology nurses and all that will be gone... I am afraid to say the least. How did you cope with that part D?
Ya Damelza that was a bit weird alright! The routine of Chemo was gone and the fear of what happened next set in! But you can always ring the nurses I call up to them on occasion to say hello even now! After a few weeks when you start to feel better and your hair starts to grow back I started feeling like I had come out the other side! I got out walking and joined a gym! You will have your kids and eventually you reach a new normal! It's not the normal you had before your diagnosis but it's not worse just different! I feel really good now better than I have done for a long time!
It sounds twee but I take each day as it presents itself and try my best to live in the day and not think too far into the future which is easier said than done I know! Things do get better when you feel better the way you are feeling now it's hard to imagine that but you will get there!!
Try not to worry, yes look at the bright side the next one is short and sweet. After finishing you do feel out on a limb but I coped by going to a Cancer Support Centre where I met lovely people who allayed my fears. I did an Art Therapy Course and counselling. I found the latter hard as I am a private person but I knew I needed it. Apart from that, take walks, meet with friends perhaps plan a break some where with your bestie. I did a Mindfulness Course last year which helped me sort my silly thoughts out. So I check in with the group once a month now. I love reading and have doggies so I wonder now when did I get the time to work. I hope this helps you a bit. Ask at you next visit about Cancer Support Group in your area. I am lucky to have an Arc Cancer House within easy distance.
I have been meeting up with friends and going for dinner, but it takes so much out of me, you know yourself. I love reading too and it takes me into a different world, which is great. Thanks for your suggestions Suzuki..
Damzela . This is my third attempt at replying to you as your experience is echoing mine in so many ways. I will put up my full experience in a post as I have been meaning to and so I won't repeat it in full now in case it disappears again !
I just want to say that there doesn't appear to be a full explanation as to the usefulness of Carbo on its own as it is worrying. You read on the one hand that the combination of Carbo/Taxol is the gold standard of treatment even for recurrence and on the other that Taxol only adds 4 per cent to the effectiveness. Why use it at all then since it may cause the worst side effects ? I am still seeking answers since I have just had my no 3 dose of Carbo only this Monday for my first recurrence in 5 years , this time in lymph nodes . I had no adverse effects the first time apart from mild neuropathy which didn't bother me too much.
Then again there are so many variations of this disease between high grade serous which I am , and low grade, clear cell or gene related etc . I think a simple explanation to the patient as to the effectiveness in each case would put women's mind at rest. I am still seeking answers and will let you know. Keep us posted on how you get on. Take care
Hi MollyO, its hard because there is such uncertinty and thats hard to cope with. I know on the other hand that there are ladies that are far more advanced cancer, and I think they are marvellous. Keep me posted.
Hi, its a time that you shouldnt worry about those things. Get appointment asap and talk to your doctor. Otherwise you will get stressed, and you dont need that. I experienced the neuropathic during the chemo as well. Wasnt pleasure, I couldnt hold things in my hands, everything was falling out, couldnt drive and do major domestic stuff. Even now, a year after finishing treatment I feel pain in my hands, wrists and joints. So I understand your worries. At the same time you want the chemo work. talk to your doctor, maybe different course of chemo will do its job, or maybe they would be able to keep this chemo going but giving you some other pills to make neuropathic more bearable. Dont let nurses to decide, its your life, your treatment, your health.
Firstly sorry your having a rough time with side effects.I missed 2 doses of taxol during. Treatment due to blood count and forgetting to take steroids.I was on carbo only for 2nd line chemo and it shrunk the beggars big time.I think the Oncologist are so busy due to the amount of patients on their books that they just haven't the time for explanation,hence the liaison nurse.Ask Questions,don't leave until you get all your questions answered in an understandable way.xx
I was given combined Carbo/Taxol but only had one session of full strength Taxol as I had numbing of fingers and toes. My Onc reduced the dose for session 2 and then reduced it again after session 3 as I had a severe rash reaction on my head and neck. Finally it was stopped after session 4 and my last two sessions were Carbo only. I was told that Carbo was the main drug with Taxol a top up.
I hoped that having one drug would be easier as I'd had a lot of sickness and nausea with both - however I found that Carbo was a high nausea drug and I did suffer quite badly. Get some travel wristbands just in case!
Thanks Clare, I did feel queazy today for some reason. I have to look forward, as I will have no more chemo after November and I am so thankful for that. I hope you are well and in good form..
I am suffering badly from neuropathy in hands and feet. Am in so much pain I cannot stand it. I have had 3 doses. She said that is all I would need initially. After a horrible reaction and 5 day hospitalization she lowered the dose. Now has me scheduled for a 4th dose next week. I do not want it!! I am with you. It reduces quality of life way too much.
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