Help, I need advice please.

Hi Roobarb,

Any time is the right time to look for advice, this is your thread not the other one which has made a lot of people feel uncomfortable.

I have not had Chemo, I think I have been lucky to escape that one but, I think I would say ‘suck it and see’. It could help you have more time and it seems that that is what you want. Until you have tried it you won’t know how it affects you. It might turn out that the side effects are manageable, of course it might not and then you would be able to stop the treatment knowing that you had tried everything. Quality of life is hugely important, but only you can decide if it’s good enough.

Take a little time to think it through, it’s no good rushing it. Let it be your decision, made with what you want at the heart of it. It’s time to think only of how you feel about it, not time to worry about how your decision will affect any one else. We all tend to think of others before ourselves but sometimes like now it becomes very much essential to put our thoughts first.

I don’t know if this has been any help at all, but I do hope so. I am here if you need to talk.

love and hugs

Maggie xx

Miss Maggie took the words right out my mouth.... Well..... Fingers. Lol

I've not had any chemo, so I can't really say what I'd do or how I'd feel after having x rounds and y side effects. But just now, as things stand, I'd want to give everything a shot. Though having read here what some folks go through on chemo and other treatments, I realise that is very much easier said than done.

Ultimately of course, it's your decision. As Maggie says, don't think of others in this one, just think of you, what you want, what you can cope with. As much as it might not seem it at times, you're in charge, and you need to be happy with the decision you make. 

Lass

Xx

Oh  I'm sorry to hear this.

I'm in a similar position as my cancer is progressing despite oral chemo and I've been offered palliative weekly taxol. The combo you've been offered may well have more kick.

I agree with Alive it's worth a try. 

The aggressive chemo I had in 2016 basically took a year out of my life but was intended to be curative so was worth it. 

I've been on oral chemo since Feb last year. Oral chemo is sometimes referred to as 'chemo light' but the initial dose completely flattened me and I felt I had no quality of life. The dose had to be halved because of significant side effects and that was much better.

I've been reading up about Taxol and people's experiences differ so widely from minimal side effects to intolerable, and I expect the time line and base line conditions vary just as much. My Consultant said the main difference with palliative treatment is it can be far more forgiving. They'll modify the dose, give me chemo breaks and stop at any time if it feels too much.

I've recently been in hospital with severe pneumonia and was beginning to wonder how much fight I've got in me, but am making a good recovery and have a wedding in March and holiday in April in the diary.

I would book yourself something special to look forward to and see how it goes. Quality of life means different things to all of us, and has changed for me over time, but being able to engage with family and friends and get some pleasure from that are my bottom line.

Good luck with your decision, I'll be thinking of you xx

Thinking of you and sending positive thoughts and hugs. 

I am hoping to get back onto my chemo oral meds soon but if they decide to suspend them because of these side effects I too will be struggling for next steps. Like you I don't want to return to aggressive chemo and it is likely not to be offered anyway. 

Hoping they find the right thing for you Heather. 

Hi Heather!

I had two different chemo's who did not work for me only made me feel like i am getting really to the end now. Then i started immuno therapy and luckily it worked so far.

I have been thinking about what to do if it stops also. The only nex toption would be chemo again.

For me i said, no. BUT, if it comes to that time, i don't know. See i'm only 52 now and think it's to early to give up.

So i would say....give it a try, if it makes you very unwell, you can stop anytime.

Pet 

Hi Heather 

I am so sorry you find yourself in this situation. It’s heartbreaking for me to read so I can only imagine how heartbreaking it is for you to live. 

I think it’s a decision so many of us will face sooner or later. I’ve already discussed the possibility with my daughters (as a hypothetical) and their view has been that while more chemo might give me a few more months, at what cost? They felt that there will be a time to consider quality over quantity. They don’t want to watch me go through it again. 

I have had chemo three times now. First was carbo taxol and curative in intent. It was the harshest. Then I had carbo Caelyx which wasn’t so bad. I did five of six treatments before the disease progressed. Last year I had six months of weekly taxol alongside an experimental tablet. I lost my hair and had the steroid madness but it was tolerable - just about.

But all chemo comes with the time in hospital - and bear in mind weekly often means two visits, one for bloods and check ups with treatment on the subsequent day. There’s the physical side effects of the treatment and the drugs used to manage side effects. There’s the mental stuff - chemo messes with my brain. I find I’m hyper vigilant on chemo, always alert to infections and limiting my life to avoid them. I can’t do x, y or z or go to this, that or the other. 

So how to decide? There’s a facts based approach. What are the potential benefits? How long might it extend my life? What are the chances of it being effective? There’s the emotional aspect. Can I face more chemo? How will I feel knowing I’ve not given those dice one last roll? Am I ready to accept the consequences of saying no to treatment? Have I made the plans that need to be made and talked honestly to my loved ones? There’s the important aspect of listening carefully to what your doctors are telling you. They are rarely direct. What is not being said? What would they do if it was them or their sister? 

I can’t tell you what’s the right decision for you. Only you know the answer to that. But these are the questions I will be asking of myself and those around me. I hope they are helpful 

xxx

Hi Heather    I'm so sorry you find yourself in this position! I agree with the replies you've already had! What I would be saying to myself is "nothing ventured, nothing gained"! When I was first diagnosed I went from nothing, to stage4 incurable (I don't use the word terminal). I was told I had at best 5 -- 7 months, however I was offered a Trial drug that I was told may or may not give me a bit extra time with my family. My attitude was what have I got to loose? Also I knew I could say the word and stop it at any time!

As everyone has said, this is a decision only you can make but personally, I'd probably give it a chance! You know it just might work for you but if it doesn't you are back to where you started! Good luck in making an informed decision, and as you say you are lucky being offered it! My problem would be when I wasn't offered anything! You will be in my thoughts and prayers!  

Dear , I’m a great believer in informed consent and then letting the patient make the decisions. I’ve had many difficult discussions with my doctor where I have insisted that all the cards be put on the table, whilst it’s upsetting at the time it helps you make choices you can stand by. In haematology it’s always hard to say what will work for individual patients, all they have is data from the past.
I took a drug which was successful for most people that did nothing for me and then tried something else and got an extra 5 months of stability, so nothing is written in stone. So trust your own instincts and everyone here will support you in your choices. 

Thank you so much to everyone for all their wise advice! I’m coming to see this is not a rational decision for me but a gut one, so I’m going to try to to do something nice this weekend, previous chemo side effects not withstanding, and hope it suddenly becomes clear.  I think I probably know in my heart what the answer is for me, just might take a while for it to bubble to the surface.

but thank you everyone, what an amazing community you are, much love heather xxxx

Hope the answer comes to you and you get peace with the decision. Few things are written in stone though and you can always re evaluate as you go. Plus sometimes other things appear in the mix we have no idea about. 

Enjoy your weekend