updates on treatment

[mishamilo53]

Hi everyone as promised I said I would pop on to describe my treatment to those who may be on the same journey …  I was diagnosed with stage 3 non small cell lung cancer with 2  lymph nodes activated in the same lung in September after a long diagnostic journey , of biopsies , petscans etc ( 6 weeks ) finally I got a treatment plan …. 6 weeks of chemo / radiotherapy … “with a curative intent “ … treatment started on 31st October and completed Friday 9th December…I had weekly chemo each Tuesday and daily radiotherapy Monday to Friday ….On the chemo aspect , I had paxitacel and carboplatin Combo .week one I was fine … felt a little nauseous and not well on the Thursday Friday but then started to feel ok 

week two I had a reaction to the paxi , they stopped it , got me sorted and then restarted it more slowly .. and it was fine …. The reaction wasn’t pleasant but it was under control within 10mins and treatment continued I was however more poorly the few days following it , mainly nausea and tiredness but the anti sickness meds worked

 week 3 and although they drip fed the chemo in , I had another reaction and they decided not to continue I was relieved the reaction had been more intense albeit again it was under control in 10 mins Week 4-6 just carboplatin and all ok . A few days of general unwellness each weekly cycle plus a little neuropathy..

radiotherapy:

weeks 1-3 all ok 

week 4 , sore skin like sunburn front and back of chest , cream given and it helped,  it was just uncomfortable…also sore windpipe making it difficult to swallow food , again liquid paracetamol and antacid meds helped , just uncomfortable 

week 5-6 more of the same , plus fatigue crept in 

Now I’m 1 week post treatment and I still feel very fatigued , my throat is still sore but the burnt skin is healing . It was all very uncomfortable, but doable and apart from one really bad Sunday I never wanted to stop treatment Im told that recovery from this treatment is around 4-6 weeks im waiting now to have my scan which will show me if treatment has worked with the oncology meeting in January to discuss results … I’m very anxious about that obviously … but also immunotherapy has been discussed . All will be revealed in January so fingers crossed .

 I hope that anyone about to embark on this treatment will find this post honest and helpful .. it’s not easy , it’s not comfortable … it is doable …. Much love Elly B xxxx

[Ceibach]

Wishing you the best results........

[mishamilo53 in reply to Ceibach]

thank you , all in the hands of the universe now x

[sassassas]

Hi mishamilo53

thank you for sharing your story and experience. I have so much admiration for anyone on this cancer journey - it is like nothing else. Its brilliant to read your treatment plan is with curative intent.

If you are offered immuno, I know they are having good results with it helping to prevent recurrence. My husband tolerates it really well with pretty much no side effects.

Please do let us know how you get on. x

[mishamilo53 in reply to sassassas]

hi Sarah thank you , I’m glad to hear your hubby ok on immunotherapy, I am a bit worried about that …. Hope you both have a lovely Christmas love Elly x

[VikingRoots in reply to mishamilo53]

Sarah's husband here....yep, I'm heading for 2 years post diagnosis. Atezolizumab and Avastin every 3 weeks infusion (home visits). No noticeable symptoms (certainly nothing compared to the chemo experience, which was similar to yours) and feel fit as a fiddle. Scans every 3 months are always a source of anxiety no matter how hard I try not to worry, but I suspect that's true for all of us.

[mishamilo53 in reply to VikingRoots]

aw thanks for coming on to comment , its so reassuring to hear about your experience. I don’t know which immunotherapy I’m having yet but it’s once a month for 12 months . I hope I can get on with it x

[Cosmic54]

well done my friend you have withstood the discomfort, sickness, anxiety and all the ther crap that’s been thrown at you to get on top of this awful disease you should be very proud of yourself. I wish you all the best and stay strong eat when you can all your favourite things drink plenty (sadly no alcohol) you need to keep your strength up to fight all this, I wish you a very merry Christmas and a happier new year 👍💋

[mishamilo53 in reply to Cosmic54]

thank you love , I just put one foot in front of the other …. Head down … get through …. Merry Christmas to you too darling , hope you’re ok ? X

[Cosmic54]

all ok here dear got a CT scan tomorrow keeping everything crossed Beryl my lung lodger has been behaving…x

[mishamilo53 in reply to Cosmic54]

aw hope all goes well love x

[Cosmic54]

👍👍

[Unicorn3344]

Well done Elly for being so brave through your treatment and also taking the time to share your storyAs long as you stay positive and take each day at a time I’m sure you will get the results that you are hoping for.My husband had curative treatment which involved surgery on his right lung and chemotherapy.His last 2 scans have been cancer free as I hope yours will be too.Hope you have a lovely christmas and wishing you all the best for the New Year.My husband is not one for writing things down so I write for him and I love to read all the amazing posts that people write and I try to reply if I think it can help.I do understand what you are going through as this horrible disease affects the whole family and it’s good we have these posts to share our experiences and worries.Hope you can take a little break from everything and try to enjoy your christmas.Sending hugs and best wishes to you ❤️

[mishamilo53 in reply to Unicorn3344]

thank you for your lovely and reassuring reply , I’m so pleased your husbands scans are showing cancer free ….sadly I couldn’t have surgery so I was surprised they said curative intent …. I wish you and your husband a happy Christmas x

[Unicorn3344 in reply to mishamilo53]

thank you xx

[JanetteR57]

thanks for posting - gives others hope and explains your experiences. There are other treatments with curative intent - ablation (SABR) is also used to good effect where surgery may be tricky but there are many living with no evidence of disease on combinations of treatments.... but until we're involved in this world, we assume even 'advanced' disease means an imminent end..... I wish the word could be spread not only about awareness about symptoms but also about treatments available as I believe some may put off seeking help due to belief that nothing can be done.

Onwards and upwards - and hope you feel well enough to enjoy Xmas festivities...

[mishamilo53 in reply to JanetteR57]

thank you Janette as always a lovely positive reply . Much appreciate … happy Christmas lovely x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello mishamilo53

Thank you for posting this update and sharing your journey through treatment. It sounds as though you have been through a lot in the last few months and charting these experiences will give others who are just starting or in the middle of treatment hope and inspiration.

Wishing you all the very best

Roy Castle Support Team

[mishamilo53 in reply to RoyCastleHelpline]

thank you and for the support that I found here when I needed it most x