Lack of support and awareness of immunotherapy

Hi Tosca I support your idea.I was offered trial immunotherapy but I have refused partially because had to wait for more test and partially nobody explained to me the pros and cons.My "caring" doctor gave me some papers to read I didnt understand a word how this immunotherapy works and I just understood the horrible side effects which scared me off.Sometimes I have doubt If I should say yes.

Now I am only on chemo which I am tolerating ok but I wish to have more options of treatment but my doctors are not interested they didnt even bother to talk about it more.

So yes more information would be good for the patients to decide about the treatment.

Janet

Hi Tosca, I also have nsclc but due to spread in lymph nodes and to bone, chemo wasn't an option. So I was put on immunotherapy, my readings on it led me to believe the day to day side effects were not as harsh as chemo, I still believe this to be the case, I have had 4 rounds of it with no side effects at all, however, what little literature there is says side effects and lethal ones at that can occur at anytime. Unfortunately my cancer has continued to spread and I was told on Friday that immunotherapy is not working for me so they are taking me off it. I am now due to start chemo but this is just to buy me time, I've been told I have month's left. I do however wish you every success in your treatment. Xx

Dearest Friend,

I just don't know what words of comfort I could say to you.  It is such a harsh verdict that it blows your head away.  However, even a few months could bring new developments in cancer research that could be crucial for your survival.  Have you been treated at Royal Marsden?  They have a special Unit for . Experimental therapies for people like you.  Perhaps it would be worth enquiring what they have on  offer.  Oh, please do let us know how you are doing.  My thoughts are with you and all the fingers crossed.  xxx        

Hi, Janet

Thank you for taking trouble to write in order to support my plea for the Macmillan organisation to help us making informed choices regarding immunotherapy.

From what I gathered from the American site they use chemo together with immunotherapy as it reinforces a targeted destruction of cancer cells.  I was very surprised to read this as, from what I know,  in UK they don't do it that way.  Maybe you will become a member of Immunotherapy Support Group (Together we Beat Cancer) and ask people about their experiences.  Perhaps they still can implement the immune in your treatment.  Please share your news with us.  Best wishes

Tosca123 x  

Hi Gsd Rule,I just wonder why they told you have only months to left.I wasnt told the life expectancy.I have breast cancer spread in to my lungs and before chemo I had it in my liver and kidney.I am having chemo since August 2019 and I am still here and well then before and have no cancer in my liver and kidney now.And the nodules in my lungs shrinking.

So dont give up.I am on weekly chemo its not so harsh but it depends on the person.Some people like me dont have many side effects.I wish the chemo works for you too.

Janet

Dear GSD Rule

I am sorry to read that immunotherapy is not working for you. It must be a real blow to you but I am hoping that the chemotherapy does indeed buy you time and is effective giving you good time.

I am due to pass my 'sell by date' in 2.5 weeks and hope I will smash through it getting repackaged and re stamped. I had been basically washed their hands of me by one surgeon after I recurred within weeks of surgery and told he couldn't offer me anything else.... another oncologist stepped up and offered me radiotherapy to brain instead and here I still am. Please do not lose hope. I think hope is the most important thing to hang on to.

Hi Tosca

To ensure that admin see your request, you may be better to email them directly as there as far as I am aware no official moderators/community champions of the lung group. community@macmillan.org.uk. is their email.

Have you taken a look at the information on the site in relation to immunotherapy. If you click the writing it will take you there. immunotherapy information

The main problem is NICE have different rules for immunotherapy and some cancers do not have it or the ones that do have different procedures. For primary lung cancer for example, there is a two year rule maximum cap. Melanoma there is no maximum. So whilst a good idea to have an immunotherapy group, it could also cause a lot of controversy too as there has already been a lot of campaigns and petitions about this from Lung cancer patients.

Immunotherapy and chemotherapy in conjunction is indeed available in the UK so not sure where you got the information from that it isn't. There are a few members receiving them both on here. We are a bit behind America in relation to some treatments, but I believe it has been available coming up to 2 years in the UK as they mentioned it to me as a treatment option end of 2018 and I thought I would be one of the first to get it.

Janet - Often they will not give a prognosis, unless it is directly asked for as a lot of people do not want to know. Even if you ask for it they probably won't give it because they simply may not know. Or there may be further treatments available to you which the can not predict how well you respond to them. There are so many variables. Your type, where the spread is, your grade, other health conditions, what treatments you have already had, those you haven't as yet.

I was given the same leaflets as i got for having the chemo, i had first chemo caused a heart attack, that was a side effect, never expected that to happen. Then a different chemo, and then immunotherapy, every drug causes problems, but not every one will get them.

Chemo is a poison immunotherapy is not as such, it is to jump start our own immune system, to fight the cancer, so in fact it becomes your own body that is doing the work.

I had no side effects from it apart really itching which was terrible, any thing else did not last long, and settled down.

Ellie xx

I'm the same as ellie. I had a rough time on chemotherapy. Now been on immunotherapy 5 months and doing ok. Dry itchy skin and tired a couple of days after seems to be the only side effects i have had. Oh and my nails went quite brittle but toughened up again after a couple of cycles. I have dry skin anyway so i just make sure I moisturize even more now.

Hi all, my initial cancer was nsclc, by the time it was diagnosed it had spread to lymph nodes and femur, after immunotherapy started I ended up in a and e with severe back pain, mri showed cancer had spread to 5 areas of my spine but we would persevere with immunotherapy. 3 month scan showed cancer deposits on adrenal glands and my lung tumour had enlarged. It was decided my lung was at risk of collapse so I was whipped up to Edinburgh for 2 weeks radiotherapy, and then immunotherapy started again after a few weeks break. I ended up back in hospital in dumfries and galloway with pain going down my bum and leg, mri showed cancer spread to base of spine. It also showed the original lung tumour had decreased so radiotherapy had done its job, just the cancer is too aggressive. Oncologist said by round 4 she would expect my own immune system to detect and fight cancer but progression shows immunotherapy just wasn't for me despite being a good candidate. I will give the buy me time chemo a go. I'm strong in head and heart and will fight hard for as long as I can. I will accept any and all treatments they can suggest but I think I've pretty much utilised what is available for me. Keep fighting this horrid illness everyone. Xx