Just need hope

[NRd19]

So we finally got back from hospital for dads blood markers , we have been told that he can have this immune therapy, so good news out of a bad situation, they said will ring in few days to book in to start treatment 3 week cycle said so much can’t remember everything but hopefully successfully in stopping it getting any worse than it is xx having positive thoughts to get through next step with him xx any one got any advice or has anyone had this treatment? X

[Goingcuckoo]

Hi NRd19

My husband started Pembrolizumab in September last year for NSCLC. He had a few side effects, fatigue at first then after the next cycle nausea but only mild, it seemed to aggravate previously injured areas with rheumatic pains, it caused his thyroid function to go up and down but generally he didn't seem to be affected seriously like chemo does. Unfortunately it has stopped working and he now has to start chemo with carboplatin and pemetrexed.

Hope your father has better luck and that he doesn't get too many side effects. Keep on looking at this site, in my opinion it's one of the better ones.

All good wishes to you and your father.

J.

[NRd19 in reply to Goingcuckoo]

Thank you for getting back to me I suppose we just see , I get married in August in Cyprus my dad wants to be there so badly I hope he doesn’t get effected to bad that’s the drug they mentioned to us he already has lung problem on one side was born with it keep praying 🙏 sorry to here about your husband hope chemo works better for him thoughts are with you it’s so devastating you can’t do more to help 💕

[Denzie]

Which immunotherapy drug will it be? Pembrolizumab, nivolumab or other? Watch for chest infection-like cough or congestion. There should be a treatment teaching class before the first infusion. They will give you a list of symptoms to watch out for. Wish I could be more help.

[NRd19 in reply to Denzie]

Hi denize it’s Pembrolizumab, they did tell us about side effects to watch out for so daunting not knowing xx

[Denzie in reply to NRd19]

Glad to read that. Please know that Pembrolizumab received expedited approval because it worked so well in trials. I watched this come up through the trial process as I had tagged that as what I want when/if I have progression.

[foodbankcupar]

I am on my second year of

immunotherapy and on Nivolynab. I have had very few side affects only slight tiredness after treatment. Told it is for two years. It shrank the tumour at beginning and also infected lymhnodes.

Now containing the cancer.

I had previously had chemotherapy and radiotherapy.

Stay positive!

Kevin

[NRd19 in reply to foodbankcupar]

That’s fab news will definitely stay positive x thank you

[rottenrunner]

hi NRd19, just believe 100% your dad will beat this, I believed and after being told in oct I only had an average of 12 months, my scan in March showed the cancer to be dormant, I went vegan and took cbd oil, if going vegan is too much then cut down on the amount of meat you eat. it's certainly worked for me, I don't know which bit did it so try them all. good luck and wishing you all the best

[NRd19 in reply to rottenrunner]

Thank you 😊 x where did you get your cbd oil from we have got some from Healthspan uk not sure if it’s the right one ? X

[rottenrunner]

hi NRd19, I got mine from icbd, they're in Kent, I'm just getting some more, its £180 for 100ml, expensive and I don't know if it does anything, but going to keep it up as you never know it might be, good luck to you and your dad all the best

[NRd19 in reply to rottenrunner]

Thank you , good luck to you too 💕

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear NRd19

That is good that your Dad is eligible for the Immunotherapy and for some people this can be well tolerated. If your Dad does develop any side effects, the earlier these can be reported and treated the better. All this information will be provided at the start of treatment along with contact details.

I have attached a link that you may wish to view in advance, as another positive, with the possibility that your Dad may feel well enough to travel for your wedding, it provides lots of useful advice for travel along with travel insurance companies.

roycastle.org/system/file_u...

If you wish to discuss anything our Freephone nurse led helpline number is 0800 358 7200.

All the very best

The Roy Castle Support Team

[NRd19]

Thank you at the moment the insurance for him to travel is extortionate over 2 half thousand for 2 weeks trued 3 places insurewith , free spirt & all clear all expensive any help anyone xx

[NRd19 in reply to NRd19]

Just to add free spirit have rang me back and price is much better but still a lot £1800 anyone know anybody else we could try x

[Clem1]

Hi NRd19 I have just had my last cycle of pembroluzamab after 2years for stage 4 nsclc with great results so I hope it will do the same for you cheers Clem1

[NRd19 in reply to Clem1]

That’s fab news glad you have had good results , we are keeping positive x x thank you xx