Should I stop treatment

Hi sorry to hear about your experience. You have had a hard time. I had melanoma in my lungs ,near my spine and a large tumour nearmy kidney. I have been on immunotherapy for over 2 years and it has reduced my tumour burden considerably.I have none near my spine or lungs at the moment. I have been able to tolerate the drug. With only slight side effects. Yes things are not black and white Ii must be awful to feel so ill but I would suggest talking to your consultant to see if other drugs are suitable for you or maybe the immunotherapy dose could be tweaked to help with side effects. I guess you are on steroids to help your body cope.with the side effects.

You do need something that hopefully will get rid of the melanoma and I wouldn’t hesitate to ask about the next steps in your treatment plan.I wish you well. Also the specialist nurse is usually a good person to talk about your worries and feelings 

Hi lgrgdg90

Thank you so much.  It is great to hear immunotherapy has made such a difference for you and the tumours have reduced.  Fantastic news.

Thank you so much for taking time to reply to me and be so understanding.  The consultant has asked to see me face to face next week(cos we speak weekly at the moment the appointments have mostly been by phone - though I had lymph node excision last week so have seen doctors too). I will definitely talk to the oncologist.  Because this is my only experience, I think it is normal but the doctor keeps describing it as 'complicated'.

I really appreciate being able to 'off load' here.  It is so wearing for my husband and family.  I just want to be back to normal and not ill all the time.

I hope your treatment continues positively.  You are so kind to reply.

Thank you

Bramblepie

Hi Bramblepie, I must admit I’m finding it difficult to follow your journey so far, you mention having half a dose of immunotherapy in March with a bad reaction, and a lymph node excision last week so I’m not sure if your currently cancer free after surgery or wether your lungs are still affected. It sounds like you’ve had a disappointing experience after those high hopes you had of it being blitzed. 

I can understand that feeling of wanting to stop treatment, I’ve had a few gaps in mine and it’s an awkward and challenging decision to make. In my experience talking to friends has not always helped as they don’t always understand the dangers and uncertainties involved or the pull of wanting to just feel normal again, the concern of making the right decision. 

Im glad they are seeing you face to face and I hope you have time to ask all the many questions you might have. I typed my questions out once to give a copy to my oncologist while I held another copy to try and make sure I could follow that they answered everything. I also ask, if I have anything else to ask who’s the best person to contact, it’s usually the specialist nurses, mine are excellent at just listening to insecurities and then they can follow through to get answers for me from the relevant consultant.

 I assume they are saying that our immune systems are complicated, and that they have no way of predicting who immunotherapy will work for, and who will unfortunately get side effects, but they will have protocols for what happens next and what choices you may have and why they think one course of action might be better than another. 

I hope you’ve got the strength and wisdom to do what ever is the best option for you, and to let go of any of the uncertainties.

Hi KtatHome

I tried to keep it short, but my apologies, as a result I wasn't very clear.  The lymph node was removed because immunotherapy is not possible just now.  The spots in my lungs are too small to biopsy and the oncologist had hoped immunotherapy would be the solution.

As immunotherapy is not possible, they are treating the side effects of the immunotherapy - really it was a half dose and my immune system went into overdrive attacking health tissue.  Biopsy of the lymph node, which had melanoma in it, will show if the tiny dose has actually killed some melanoma cells.

I really like your suggestion of writing down a list of questions and having 2 copies. Thank you.  

I also agree, I prefer not to talk to friends about it, it is too difficult to explain. I think it is human nature for people to want a black and white answer, or to be able to relate it to a situation they have known in the past.  I am probably also a little sensitive to different reactions. Best not to say anything and everyone is ok.

I'm not sure where you are in your treatment.  I so hope you are well and things are positive for you.

Thank you so much for taking the time to reply.

You stay safe too. BP

Hi Bramblepie, thanks for explaining a bit more. Which immunotherapy drug did you have? I am on Pembrolizumab I’ve had 54 doses of it, before that I had Dabrafenib targeted therapy, my profile says a lot more about my treatment, you get there by clicking on my user name or photo, if you think it would help to have a look. I am well but can always find something to be positive (or negative) about as most of us can. I have low burden of disease at the moment, but can feel a lump in my groin, I think it’s mainly under control, but not straightforward, I’m due a scan in early June, if they keep to time.

When I was trying to write questions I had a look at the Macmillan info and support pages, I’m wondering if the link below  may help you if you haven’t already come across it.

https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/making-treatment-decisions

I find I have a better appointment with the consultants when I’m prepared and focused on what I need to tell them and what I want to ask, it not always easy when you receive info you’re not expecting or (as my appointments are by phone) if they ring very early or very late. I do hope your appointment goes well.

Hi, I've had the 4 treatments of the double immunotherapy over a 12 week period, my last one was just over 3 week's ago.

I'm afraid it wasn't plain sailing! I ended up with a 3 night stay in hospital about a week after my last treatment due to side effects which were controlled with steroids and fluids which after 24 hours put me back on track.

This was the worst period for me, I had no appetite, dry mouth and sickness which resulted in weight loss.

Having said all of the above, please weigh up the pros and cons of this treatment. At times you do wonder if it's all worth it but now, as I sit in bed typing this, having a brew I'm glad I stuck with it and got it done.

I know it's bloody hard when you try and explain its the treatment making you ill and not the cancer and I don't know your personal circumstances but please have that face to face meeting and go over things.

I've got my results tomorrow from my C.T. scan and will take things from there as too the road ahead.

I hope all goes well whatever you decide and Good Luck! P.S. I'm 60 year's old.

Good luck for your results TL775, let us know how you got on please.

Will do! Bit nervous to be honest but hopefully some good news!

Hi again, sorry I've taken a while to reply about my C.T. results. All positive, thankfully, lymph nodes they were keeping watch on haven't changed.

They found blood clots on my lung's but apparently that's common and I'm on blood thinners for a few months.

I'll be starting single treatment hopefully in June or July of the nivolumab.

Glad you’ve had good news TL775.

Bramblepie I hope you are doing ok.