Got my treatment plan today

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

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

Glad you got your treatment plan. My bronchoscopy results are not back yet so I haven’t got any appointments coming up. The waiting is really getting me down now even though the treatment is going to be really scary. I imagine as I have the same staging as you it‘ll be a similar treatment plan. Anyway I‘ll let you know. 

Hello AKAFS,

Oh crumbs I’m so sorry your results are not back yet, mine took just under 2 weeks.  
It’s more than frustration waiting for results and it should not be that difficult to have a standard process.    
I’m still waiting on my the gene mutation test results to determine if and which immunotherapy I could have and that makes a lot of difference to an inoperable Stage 3B outlook.  

Fingers crossed your team get your results and the next steps confirmed asap.

All the best regards

Sylv

best regards Sylv

Hi Kegsey

I hope you don’t mind me butting in on your conversation but I found your comment so reassuring and helpful. I’ve only recently been diagnosed with lung cancer too, both lungs and possible spread elsewhere. It’s come as such a huge shock as I had no other symptoms other than being a bit wheezy since a holiday in September. I had a chest X-ray closely followed by a CT scan with contrast and was totally blindsided by the results as were my husband and kids. I have my first respiratory team appointment on Monday and I’ve had the lung cancer nurse on the phone today about having an ultrasound neck biopsy asap as it’s less invasive than a lung biopsy. I realise if it’s inconclusive I’ll still have to have a lung biopsy but I’m up for anything if it gets me the help I need. My cancer hasn’t been staged yet but I do know according to my GP it’s possibly not curable. One of my main worries is losing my hair although I have to say rather my hair than my life and your fantastic description of it all has made me feel much more chilled about it. I’m terrified but keen to get on with treatment asap. Just an aside I have my eyebrows microbladed and have recently had a top up as I never had much in the way of eyebrows anyway. I’m glad I did as if I have chemotherapy i wouldn’t be able to as it’s open cuts for a while. Anyway the advice is brilliant, I hope things are going well for you at the moment, best wishes, take care Jools