to have chemo or not??????

Well I have been all over the place since I got the news. To anyone who hass not read previous posts my cancer is back in my liver and there will be no cure.

Up one day, down the next. Yesterday I met with a chemo specialist who was so lovely and I really think listened to me and understood my dilemma. So from being on the quality rather than quantity page I am now considering chemo. Up until now i thought no more treatment , let nature take its course. My husband thinks i should give the chemo a go. Has anyone else been on taxol/carbo/avastin? How have you been and did you have good results? I just don't know what to do. 

Thanks to all those who continue to hold me together by there love and kind words.

Karen

Hi Karen

I have no experience with this  treatment, but i did'nt want to read and run.

Hopefully someone will be along soon with the information and support

 you need.What a fantastic bunch of ladies.

Sorry I can't help but just wanted  you to know I wish you all the

the very best.Sometimes strangers are easier to talk to.You don't

have to take their feelings into consideration and you can

 totally off load.

Takecare

Becky x

Hi Karen

I have no knowledge or experience of this treatment either. If I was in your shoes I’d as confused as you. Have the indicated how much longer having chemo would give you? I would definitely want to know that and also all the side effects before making a decision. It’s your, and only your decision to make. I wish you clarity of thought and speedy decisions. X

Hi

I dont have any experience of these chemo treatment so cant help there..... I just wanted to offer my support and best wishes

Hi Karen

Again no experience to share I’m afraid but when I discussed Avastin with my consultant he said the results were very promising. He said on average trials showed it extended survival time by 4-5 months but that some ladies had far exceeded that?
I had made the decision to have chemo as I wanted to go for as long as possible, but I hadn’t had any treatment since my op so my position was different as health wise I felt fine. I think I also still believed I could beat it, whatever the odds said.

Sorry I can’t be any real help, I hope someone can help you with what the reality of the chemo is like.

Best wishes
Ali x

Hi, my only experience with this treatment is what I have read, this has been positive but having said that I know it's a huge decision to make! I hope someone can give you a lot more info to help guide you into the choice you feel will be right for you! Thinking of you xxx

Thank you ladies. I really appreciate your support. Avastin is a new drug I think and not been used for this treatment for very long. I thought more people might have experience of taxol/carbo chemotherapy. The consultant did not indicate how much more time it could give me, he said until I had had three they could not assess any changes. I may reaact badly to the first one. He did say he had patients who had responded well. One lady with cancer in her chest had got 5 more years, but others had only gained months. How do you know what to do when there are no answers to the big questions?

Love to all you ladies who are struggling with a treatment dilemma x

hi Karen

i can add my $0.02 but ultimately this is your decision.

I think if there was an inkling of living longer i would go with that and mainly because i'm a mother and for all the percentages and odds what if i was that 0.1% that lived longer.  Ever the optimist here.

i would also look at alternative therapies, when i was first diagnosed last year i went to a cancer centre and met 2 ladies who had been living with cancer for years 1 in fact 9.  they had made some drastic lifestyle changes but there they were - still here as one said.  (diet change, eliminating stress, etc)

In the end whatever decision you make will need to be right for you and i do not envy you this.

hugs, +ve thoughts and prayers for you

Pat x

Hi,

sorry I cannot give you advice but I just wanted you to know that ur in my thoughts. I keep popping back onto the site every few days to see if u have updated. 

There are no words that I can say that will help you in anyway, I know, but keep letting us know how u are getting on. Fingers crossed u are one of the survivors, you have to have faith!!

much love and hugs xxx

don 

darling karen,

im so surprised to hear that there are'nt any ladies on here, i would have thought the taxol/carbo was one of the main chemo treatments they give for cervical cancer but i think it might be for those at a later stage... what stage are you at??? I was diagnosed at stage 3 andwhen my consultant felt the size of the tumor he decided to give me 6 treatments of taxol/carbo before starting the next of chemo which is cysplatin. after the 3rd taxol/carbo the bleeding and the pain had stopped so it must be some pretty strong stuff and im feeling on top of the world at the minute, just finished taxol and started first session of cysplatin.

 

from what i was told with the taxol there are the side effects that they explain to you, the sickness, pins and needles, ulcers, hair loss, fatigue and tiredness etc etc but through the whole treatment i personally have had no problems. After the first session i felt a bit sicky in the morning but after taking the anti-sick pills they give you that stopped, it felt like having been out for a long weekend on the razz without thye headache just a bit pukey but that didnt last, after the second treatment i experimented with the pill and stopped taking the anti-sick pills but i didnt come over feeling ill after that so rather than put more chemicals in my body i havent taken any more since. It might not be the same for you but they give you plenty of pills incase you do get sicky with it all, they do work and maybe just avoiding certain foods and smells seems to help others too.

 After the 4th treatment the hair started falling out but mine has only thinned and i still have half a head of hair which now that the treatment has finished should start growing back, i just wear a headband to cover it up a bit and not look like a chemo patient as my hairline has receded so a bit of a baldy at the front lol.

The process is quite simple...

 you go in, get your private room for the first treatment and get wired up on a drip, they give you anti - sick, allergic reaction and i think it was steroids before they start your treatment. the allergy fluid they give you gives you prickles on your bum and prvt parts if they inject it in your drip too fast but that only lasts a minute... bit weird and probably the worst part about the whole thing. Then you sit there while they give you the chemo, there are 2 bags of chemo, one is the taxol which they give you first which takes an hour, thats followed by a 'flush' which is just glucose and lasts ten minutes. Thats then followed by the second second chemo bag of carboplatin which lasts another hour and  then a uick ten minute flush again and after all that you're free to go. Take a book or tunes etc incase you have nobody to talk to. The whole thing takes about 3 hours max from start to finish. After the first 2 treatments you get given a seat in a room with a few other people also having different types of chemo. I dontknow how old you are but im thirty and being surrounded by people of sixty and over is a bit... awkward, maybe a bit embarrasing i thought that the older people around looked at me with pity in a way... maybe not might just be my imagination.

 

Anyway like i said, i was fine with it and hopefully some other ladies with different experiences will share their views but pls feel free to pvt msg me or even write back on here as it will help anyone in the same situation if you have any questions.

 

Hope to have helped and put your mind at ease but all the other patients in the chemo ward are smily laughing and so i think personally you should go ahead with it as i felt the benefits after 3 weeks... just my opinion youre your own person... chin up sweety xxxxxx

Thanks for more responses. I'm going to have one chemo and see what happens. I have changed my diet a little (manageable but not extreme) and certainly am less stressed (strange but true in circumstances). I surround myself with people I love and I feel upheld. I feel lucky to have the opportunity to tell people how I really feel and plan the future, however long that may be. I have a fantastic care team. I am trying to count my blessings every day. Sometimes it is so hard, I don't know where the words come from. There is a reason for everything and a bigger picture but I want to live. Its finding the balance between accepting your fate and doing what you can to be here with loved ones in a meaningful way for as long as possible

Sorry this is a ramble, I feel good getting my thoughts out there though!

Love and courage to you all

Karen x

Hi Karen,

 

i think ink that it's a good idea to give a chemo session a go and see how you feel. I hope it goes ok. I can't imagine how difficult it is to make this decision as like you said nobody has the answers to help you decide.

 

i just wanted to wish you well and let you know that I'm thinking of you and sending you lots of love and strength And courage. 

 

Tess xxx 

Hi Karen

Good luck with the chemo xx

Had my letter through. Assessment on Monday. Chemo on Tuesday. I'm scared but going through with it. My worry is this last week we have been up in Scotland touring about and I have been up and down with pain and temp. All due to change in diet/scenery/beds etc I hope. I wanted this week coming to settle back down into my cosy routine.

I'll mention all at the assessment anyway and I've got the weekend to chill out. Scotland was great. Fantastic weather, made some great memories with my family. You have to seize the moment.

Love to all who follow

Karen x

Hi Karen

Wishing you loads of luck for Monday & Tuesday, hope it goes really well for you.

You are so right about seizing the moment and having some quality time with the family.  Something like this really makes you reevaluate what's important and gives you another perspective on life.

Sending you love, hugs & courage - will be thinking of you.

Cheryl,xx

Hi Karen

I'd like to give you some encouragement for your upcoming Chemo appointment on Tuesday. 

I have undergone 4 sessions of Cisplatin/Taxol/Avastin with 2 more to go. I was diagnosed with stage 4B in March, and had a stent put in straight away. My 3rd cycle CT scan results showed "significant improvement to the disease load". This is phenomenal progress for me in such a short time, following a big diagnosis. Originally surgery and radiotherapy were not even an option, but now my Professor is talking about radiotherapy once chemo is complete, as a result of the fantastic progress after 3 cycles of Cisplatin/Taxol/Avastin. I feel very positive about this, and that the difficult journey I started (that has gotten easier) was without doubt every bit worth it.

In comparison to Kitty's treatment, my Avastin now takes 30 minutes (started at 90 min), Taxol takes 3 hours, and Cisplatin takes 2 hours. With all the flushes in between, I'm there for 12 hours. I have visitors during this time, we play games, I eat my meals, I walk to the loo, I'm fully awake and alert. 

Admittedly the first session was not good - I had high blood pressure and severe stomach cramp reactions to the Taxol drug during administration. However, all 3 drugs were administered at 100% level, which was too high for me, and was lowered from session 2, and I've not had any reactions since. A good discussion point for you and your Doctor.

Avastin is a hormone therapy drug that has been recently licensed, and has positive feedback. Avastin has been quite easy on me, and will be my Maintenance drug for the next year. 

Taxol and Cisplatin: I did lose my hair, and the fatigue is getting better. My knee joints aren't as strong. I've not had any nausea or other general side effects. They do give good post chemo medicines to take which certainly help.

Overall, I'm doing quite well on my chemo. almost every day I go out and enjoy doing something around London, even during my low immunity dats (and I'm neutropenic). 

Each patient and response is different. I hope you find positivity and encouragement in my story. Don't let the first chemo put you off - but do have a good discussion on Monday with your Doctor about the level he'll administer you, so that you are comfortable moving forward with more chemo sessions. 

Always remember: You're braver than you believe, stronger than you seem, and loved more than you know! 

We look forward to hearing from you soon. 

Love, hugs and strength to you. 

Christina

x