Got my treatment plan today

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Diagnosed with Stage 3B nsclc T3,N2,M0. Inoperable

I’d say I’m lost for words but I have tons of them in my head, I’m just too scared to open my mouth as a huge long wail will emerge instead.

M0 is good and my head MRI is also good but that’s as good as I can hope for it seems.

The right lung tumour is next to my windpipe and the entire mess of impacted 2 lymph nodes are close to my heart. So they cannot operate.

They are waiting on my Biomarkers to come back from B’ham to see if I am a candidate for immunotherapy. Fingers crossed on that as I think it’s my last hope of being Hopeful24.

What I do know is my treatment plan could start as soon as 12th December, waiting for confirmation on that.

I’ve a fair bit of travelling to get there, it will be winter Jan/Feb time so I’m hoping for no snow else I will be scuppered and it just adds to the stress of it all. I am in a very rural area so little unlit country lanes all around me and I have a bridge to cross that gets closed in high winds so the travel could be dire.

It will be combined ChemoRadiotherapy, they will be using Paclitaxel and Carboplatin once a week and radiotherapy 5 times per week for 6 weeks, so 30 sessions in all.

So by March I should be having another CT scan and I’ve asked that if the tumour has shrunk by a good margin from that image if they would consider me having another PETscan to see if they would reconsider operating. Probably not I expect because of its location but if you don’t ask you don’t get.

QUESTION Any of you guys on the same chemo and how did you do on that. I know it’s not possible to find direct comparisons but did the chemo make you sick, did you have hair loss? Leaflet I was given says I will lose all my hair, any real experience on this or advice on cold caps - are they worth it?

I have long hair so that is going to have a huge impact, I’ll scare my grandkids for sure. I love to walk my remaining dog, I wanted to get another dog because my best boy going so suddenly left a huge hole, I love to strut my stuff at high intensity Zumba and I have a huge, huge garden to love.

I’m hoping to still get married in May, so Hopeful24 is hoping hair will re-emerge by then or it’s a wig I guess.

I’m so sorry this is so long, I need my hand holding today. I’m very scared, I wanted to get very old and crabby, I’m fit and very able presently and thought I’d got another 15-20 years in me. Hope someone is there, I just need to hear from someone in the same dark tunnel I am in now but is more or less out of it or is back out in the sunshine.

The only way out is forward.

Sylv

Kegsy 13 hours ago

Hi Bestboy

It is good that you now have the treatment plan.

Chemo and radiotherapy is a well established treatment for Lung Cancer. Mine was Carboplatin plus Etoposide alongside 33 daily session of radiotherapy (Mon-Fri). The aim is that the chemo shrinks the cancer so that the radiotherapy has a smaller target area and less healthy tissue is 'zapped'. I will not lie to you, this combined treatment is tough. That said it is very much doable! Use this waiting time to get the hair stuff sorted. If you have been told that you will have complete hair loss, then start to plan for this;

You will be entitled to one free wig on the NHS; just ask your Oncologist for a prescription. My hairdresser/friend cut my wig to match my usual hair style. Get yourself a good eyebrow pencil and some nice warm trendy woolly beanie hats!

The hair loss usually starts after the 2nd cycle of chemo, and when it goes, it goes quickly! In the week before m 2nd cycle I had my long hair cut short (approx 1.5 inches). Please do not go for 'the shave', as having some hair helps that hair to come out. Mine started on the Friday evening; every time I went into the bathroom, I ran my fingers through the hair and what came out went straight into the bathroom bin and not one tear was shed, By Monday morning I was bald! It is not just the hair that you can see that comes out. Little hairs in your nose and ears also come out, so don't be surprised if at some point during the treatment you experience a very runny nose and/ or a bit of hearing loss. I had a couple of weeks where I had trouble hearing low tones. Your hair will start to grow back within weeks of your last cycle of chemo.

Chemo side effects differ from person to person. I didn't get the sickness/upset tummy etc. However it did impact on both my red and white blood cells, which I think is very common. If this happens, do not despair if they delay your chemo session by a week, as it does not impact on the outcome.

The radiotherapy will make you feel very tired. The positive effects of radiotherapy are cumulative; unfortunately so are the side effects. Use the weekends to rest up as and when you can, but still get out and about as much as you can.

The one thing I craved more than anything was 'normality'; so putting on the wig, slapping on some make-up and getting out and about as much as I could was vital for me.

I hope this helps a bit.

Kegsy x

"If you are going through hell, keep going" ; Sir Winston Churchill

" Cancer may take my life; however it will not become my life" Kegsy August 2011

Bestboy 11 hours ago in reply to Kegsy

oh wow Kegsy,

I am so so glad you are here!!! You have written so much good advice from actual experience it’s really so very much appreciated and valuable to me.

I am taking all that on board. Thank you from the bottom of my heart.

I‘ve got my CT scan to place the radio therapy markers this Friday afternoon and I also get my Covid and flu jab on Friday morning. The chemo centre have been fab.

Dentist appt for checkup next Tuesday and shopping for beanie hats although I will get a wig. I will leave my long hair to fall out naturally and I too will not shed a tear.

I have told my best friends who are also my neighbours and my 3 grown up kids, they re all behind me with whatever I need. I am very much loved.

thanks once again you are really helpful and I wish you all the very best.

Sylv

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