Hello everyone , had my post treatment scan done on the 30th dec and yesterday was the review meeting with oncologist… they said that this scan was a very early one ( only 3 weeks post treatment ) but they needed it because of the potential for immunotherapy that needs to be started within 43 days of treatment ending .. anyway , they said the results were good my tumour has reduced and responded to treatment and they seemed happy with that . That the 3 month scan would be the next key important one , the radiotherapy is still working within my body and the inflammation will reduce by that time which is the normal scan time …. This initial scan gives them a benchmark measure of the tumour going into immunotherapy… my immunotherapy will start on the 16:1 and it’s once a month for 13 months … duravalmab ? .. I’m a bit anxious going into another treatment regime so soon after this one … I’d be interested to hear of anyone’s positive experience of this immunotherapy drug ( I don’t need the negative ones as I’ve already read too many of those ) and anyone who had chemo radiation and saw improved results at the 3 and 6 month scans. much love everyone , the journey continues and I’m grateful for that ….Elly x
post chemo radiation initial scan - The Roy Castle Lu...
post chemo radiation initial scan
hi pet I have immunotherapy I get tired nausea n constipation but nothing drastic all of these side effects can be sorted… good luck n happy new year x
thank you lovely x
how did your last scan go love ? X
Hi mishamilo53I had 33 rounds of immunotherapy over 2 years and not 1 side effect during that time. My chemo/immunotherapy treatment finished 18 months agoand I have been in remission since January last year. Keep on fighting.
thank you so much that’s such a reassuring reply , I’m so scared to go ahead after the meeting to discuss the side effects so thank you for sharing your experience , Elly x
I was at an European conference some years ago (ESMO) when the results of the durvulumab Pacific study were revealed - within months it had been approved for different settings than original ones. It's easy to get hung up on reading side effects that drug companies have to reveal and for many patients the side effects are worth the longer survival rates.
It's good to be aware of side effects but most of us take medication without ever reading the leaflet that comes with treatments and if we took note of them all, we'd never take any treatment. What's important is the incidence level/odds - many treatments currently in medical use have not undergone such stringent tests as today's clinical trials demand - although equally many patients have other conditions so may be taking medication for those that may cause interactions.
Since my diagnosis in January 2011, the use of combination therapies for lung cancer patients has made a huge difference to many patients in survival and quality of life.
hope you get the answers you seek - this may help in the meantime. good luck. roycastle.org/app/uploads/2...
thank you Janette , it helps a lot … I have anxiety and so my brain is hypersensitive to side effect discussions and I get so scared … I was the same with my chemo … it’s so hard to make a decision that isn’t fear led isn’t it x
I found my fear reduced when I understood more about things - but we're all different. Two books helped me in particular - one was 'anticancer - a new way of life' by Dr Servan Schreiber and one was 'cancer is a word not a sentence' by Dr Rob Buckman - both helped me understand more what was going on and what I could do for myself.
For those of used to feeling in control of our lives (which is delusion in reality) when cancer strikes, it's as if every element of control is taken away - so I found learning more helped me.
It certainly reframed my life and how I thought about everything. take care
thanks Janette , so helpful as always x
I’ve read the book by Rob Buckman at the start of this cancer nightmare , I’ve just ordered the dr Shreiber one , so will let you know what I think … I’ve just been reading the rainbow diet book which is interesting too , thanks Janette x
Janette I’m reading the anti cancer book ,you recommended I’ve nearly finished it and only got it downloaded yesterday … it’s so interesting and informative so thank you , Elly x
I've re-read it and re-referenced it several times - was surprised to hear the Glasgow inflammation score used in that book published in 2011 at a conference just before the pandemic as if it was some newfound discovery! I went onto read his other books ' healing without freud or prozac' and 'not the last goodbye' afterwards.
Probably a lot of it is common sense - but looking at life for the whole person - holistic approach seems quite rare in health systems that silo everything off into 'organ', 'disease' or 'symptom' management yet we're more than our cells, tumours or symptoms.... good luck.
yes thanks Janette that is so true …. Thanks again x
I had immunotherapy for two years after radiation had settled down.It worked for me in time.
Obviously there was some side effects.
Lung cancer then radiotherapy leaves you susceptible to chest in infections.
Over the two years I had Bronchitis a few times.
My lung cancer had spread to lymph nodes in my neck too.
Had an trial drugs after immunotherapy too.
In remission now for two years.
Be positive in your journey and stay positive always.
Kevin
thanks Kevin so kind of you to share your experiences, I’m trying to stay positive but my anxiety gets in my way sometimes .so glad you are in remission x
Kevin - I've been left susceptible to chest infections and hospitalised every year between 2015 - 2019 and I didn't have immunotherapy or radiotherapy.
Finally seem to have broken the cycle (don't want to speak too soon) due to mixing with people less, far less travel especially on public transport, and many other measures introduced during the pandemic. Just had another one in December that floored me for over 4 weeks but with current NHS situation of no beds/waiting hours on a trolley didn't go to hospital but was as bad as I have been previously. I took the 'rescue pack' of antibiotics/steroids although they didn't make any difference, took to my bed for a day or two (unheard of unless really well), didn't swim or exert my lungs for several weeks and thankfully now recovering.
Hygiene measures brought in during the pandemic actually reduced 'flu and other respiratory viruses beyond expectation even when lockdown measures were lifted but this winter has seen a vast increase in respiratory condition admission through A&E and other ways and wonder if relaxing/abandoning some of the measures including mask wearing and much greater mixing has contributed to this major increase.
Great to know you're in remission. onwards and upwards.
Hello Mishamilo53
As you can see from the previous replies there are lots of positive experiences from patients on immunotherapy. It is understandable that you will feel anxious when starting a new treatment so soon after radiotherapy, your team do have to make you aware of the most common side effects of treatment, this can be daunting but as you can see from the experiences of others immunotherapy is tolerated well and for many with minimal side effects. I have added a link below to our booklet on immunotherapy
roycastle.org/app/uploads/2...
If you would like to discuss anything you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 385 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
Kind regards
The Roy Castle Support Team
thank you so much
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