What to do

Hi Clare 24 I am in a similar situation but maybe further down the line , My first treatment I had 30 radio and supposed to be 6 cisplatin chemo but was so ill could only have 4 and was admitted to hospital , Had a neck dissection  and they found cancer in lymph nodes and neck and then had 6 three week rounds of carbo[platin and 6 5fu pumps . I was told I had a 8.5 cm tumour on my liver non cancerous , Happy days I thought , Was told in February actually it is cancerous and spread to lungs also and have it in neck already so I have a bit of a dilemma  . I am a 62 year old single male as my partner left me but on good terms. I get and understand the idea of not having treatment but they actually said to me they wouldn't usually offer treatment but because I am so fit they treated me with success . I am going for my next scan in 26 days and they will check all my tumours . The oncologist said usually the cancer comes back after 6 months so there is talk of immunetherapy next . As rough as one gets the alternative of dying really isn't even on the table for me yet as its my choice what I want , Much as it might make you very ill it could also extend your life by years which would make it worth it in my opinion . I say this now while I am pain free mind . I hope this helps in some way . All the Best Minmax  

Hello Clare24

I'm sorry to read your news. It must have been so disappointing to find that a new tumour has appeared, when you have been feeling well.

I am in the same predicament as you regarding whether to have more treatment, and risk feeling so ill that you can't enjoy the time it gives you. I will be faced with this decision too. It isn't an easy one to make.

My thoughts about it, for you, is that a different chemo drug may well not give you the same side effects, or severe side effects as the first one. Why not agree to try it? If it does make you feel awful, you can always choose to stop. At least you will have given it a try. There must be several chemo drugs that the oncologist can choose from, and one might suit you better than the first one did.

Also, perhaps you could take medications as a precaution against any possible side effects, before they happen, eg. anti-sickness pills, so that any side effects are not as severe. 

I'm not sure how I manage my feelings about having treatment! I don't plan ahead very far, and don't write lists of things I still want to do, as I feel that puts pressure on me to 'achieve' something. I just take each day as it comes. I feel emotionally quite 'flat' most of the time...maybe that's my way of coping with having cancer. 

You have dealt with so much already, from your initial diagnosis to this point. Do you have to make your treatment decision straightaway, or do you have time to talk it through with others? It may help to discuss it all with someone before you decide.

Sending you a 'virtual' hug!

Kate

Hi.  Yep what a predicament.  I've been on immunotherapy but I do believe that chemos can have different outcomes and perhaps your consultant has considered that when recommending a second treatment?  If you know what it is you can share here to what other experiences were like.  

I totally understand your dilemma on whether more treatment is the right approach.  It's quality versus quantity.  There's no right or wrong answer.  The one you feel most comfortable and at peace with,is the right one for you.  I don't think translating it as "treatment = want to live" and "no treatment = don't want to live" is accurate or fair.  It's far, far deeper than that.  More like making an informed decision. 

I love how you say you've felt fine over the last 6 weeks.   No treatment and having a shorter timeframe is not a given.  We kind of assume that treatment means longevity,  because that's the intent.  But cancer is a right bu55er and no-one knows.   

Hi Clare 24 I am so sorry to hear your news. I cannot add much to what others have said, apart from this. It will be your choice to have this treatment or not, and if you do decide to go ahead, it will also be your choice to stop it as well if you think it is making you too poorly to continue. Not very helpful I know, but another way of thinking about it. You don’t know until you try. 

Thank you for your replies. It has helped to know that people understand what I am going through.

I choose treatment if it can extend my life it will be worth it but if the side effects are to much then I can ask for alternative or stop. 

I have been on such a high dose of steroids since this crap started (April) I now have Addisons Disease ( the cortisol is not being made in my body) has anyone else had this. They gave me an injection kit if I need to inject myself in the event of needing it! I was healthy until I was diagnosed this also makes me nervous of having treatment. 

I need to consider myself fortunate that he has suggested chemo as the alternative would mean weeks/months left - I have so much I want to do I am not ready yet to die - life is so unfair 

The consultant has discounted immunotherapy and radiotherapy as not being suitable for me. The first round of chemo was oxtailplatin and the one he is now suggesting is called paclitaxel - what symptoms should I expect from this? 

Hi Clare I have had Chemo twice cisplatin the first time and carboplatin the next time . The second time was fine if I am honest as they gave me anti sickness tablets which worked  a treat . All these drugs are different and affect us all differently. The side effects of having major surgery are a few but bearable. I am also on eleven tablets a day for my heart. If you ever read the side effects of taking some tablets you would never take anything. I am perfectly healthy except the tumours and intermittent pains etc and easy for me to say I will have more treatment but if I am in bad  pain I dont know. I try and walk a few miles every morning  and sometimes do nothing else for the rest of the day . All the Best Minmax  

Hi Clare24

I developed Addison's disease when my immunotherapy drug caused my immune system to damage my pituitary gland....which then stopped communicating with my adrenal glands, so they don't produce cortisol. This is an extremely rare side effect.

I too carry an emergency injection kit, but I haven't yet had to use it. If I do feel low on my steroids, I take an extra tablet. I haven't had to do this often. I've been on the hydrocortisone now for nearly 2 years, and feel OK on it. At first, it was really scary, being totally reliant on the steroids to keep me alive. I feel OK about it nowadays, and am in a routine of taking them. There is more info about this on my profile.

On this website you can find lots of info about Paclitaxel, in the section on cancer treatments.

Why has the consultant discounted radiotherapy? It might be worth asking for a more detailed explanation.

I haven't had any chemotherapy drugs, so I can't comment on any side effects from them.

If you cannot reach a decision about treatment, maybe you could ask for a further discussion with your CNS or oncologist?

Kate

I have had Paclitaxel twice. I had it for 12 weeks as part of treatment for my primary cancer and then again for a similar period (in the form of NAB-Paclitaxel) with immunotherapy (Pembrolizumab) when I became metastatic. It was bearable although the first time round it was weekly treatment and I felt like I was on a roundabout I couldn’t get off. Second time round, lower dosage, 3 weeks on, 1 week off, not bad at all. I had hair loss. It took away sense of taste and made me a bit achy for a couple of days each cycle. Peripheral neuropathy can be a problem. Stopped the 2nd time because I had to stop the pembro and that had been the reason for having it. 

Coddfish I have had similar side effects and a few more which at the time really are quite scary as you think hey these are going to permanent. Unfortunately it only takes one of these side effects to really start playing up and to make ones life a pain . I was busy last week and thought I would take it handy this week , Just as well I dont feel great  and i do wonder is it the cancer or just a side effect of one of the many drugs I am on. Brain working overtime lol . All the Best Minmax  

^^^ Yes.  This.