Update : Update my husband has had pet... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Update

Coorslight
Coorslight

Update my husband has had pet scan and Mri brain and no spread he has been offered radical treatment, chemotherapy and radiotherapy at the same time we are so scared when they listed all the side effects, hearing loss numbess in fingers and toes sickness diah were just a few but the oncologist gave us a little hope aswell because it hasn’t spread . Just so frightening, had his scan and tattoo today and been told he needs 33 sessions of radiotherapy which will start in a couple of weeks not sure when chemotherapy will be, just so frightened sorry he has T4n2m0 inoperable

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Hi, that’s great news it’s not spread and he can have the radical treatment. Don’t worry about the side effects, they have to list them like they do on Paracetamol, it covers them. It’s so tailored he might get side effects he might not! My oncologist listed death as a side effect before treatment! Think that covered everything!!! I’m 6 months in and got colitus from Immunotherapy and sleepiness! ... I wish your husband well and easier said than done but don’t get hung up on the side effects . If you have a headache you take the pill! X

Thankyou for replying, I think it just helps when you have others tell you aswell, hope your treatment goes well xx

I was in hospital with someone who was in same position a few months back. The chemo and radiation worked and she was having curative lobectomy. After which she was cancer free. There are a million positive outcomes!!

It all sounds really scary but if you look at all the side effects listed in any medication you're prescribed, you'd never take anything. They have to tell you everything even if only a few experience some or all of them. there are many people in online groups who have this combination of treatments and come out the other side..... Many fear hair loss too but not everyone experiences that and many of the side effects are temporary and improve over time. There are clinical trials and some patients have combination therapy using these and immunotherapy/surgery in some combination. lung cancer treatments are more targeted dependent on the specific characteristics of the tumour (mutations etc). It's approaching 10 years since I first turned up in A&E and a chest x-ray picked up a 'lesion' that I had surgery and half my lung removed in Dec with the 7cm tumour. I hadn't appreciated at the time how few people are clinically eligible for surgery. Chemotherapy and radiotherapy have changed in recent years too with different agents and sometimes targeted agents in combination with more traditional chemotherapy agents dependent on the results of biopsies. Having been involved in cancer research for some years I've been lucky to attend various conferences where I've seen the rapid changes in research and treatments for lung cancer and also met patients who've lived many years - some over 20+ years before some of the newer treatments so never give up... appreciate it's scary.... but there is good information in plain English to be found on the Roy Castle lung cancer foundation website which is regularly updated, written by clinicians and reviewed by patient panel... good luck.roycastle.org/about-lung-ca...

Hi Coorslight,

I was diagnosed last September stage 3B. Began 30 radiation treatments and 12 chemo treatments in December 2019. My side effects were tolerable and not as bad as described. He can do this. Stay positive and take only one day at a time.

I had surgery in March and another adjuvant chemo treatment in May.

Am able to now do everything as before diagnosis. PTL

I will be praying for you🙏

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Coorslight

Sorry to hear your husband has lung cancer which must be very difficult and confronting for you both.

There have been wonderful replies from those in the forum and please do not be alarmed with the doctor informing you of the side effects, which as everyone has said there is always a list of many side effects with any medication.

For those that do have some side effects with chemotherapy, these are usually well managed and settle down when treatment stops.

It may be less frightening if you have more information on what to expect, and I have placed a few links below which may help:

This link is from one of our booklets on ‘Managing your lung cancer diagnosis’ which details staging, treatment options and what to expect: roycastle.org/app/uploads/2...

This link is our booklet on radiotherapy, it is normal to have around 30-33 doses or radiotherapy:

roycastle.org/app/uploads/2...

This link is our booklet on chemotherapy:

roycastle.org/app/uploads/2...

This link provides some encouraging accounts from those who have lived with lung cancer at all stages:

roycastle.org/campaigns/lik...

If there is anything you would like to discuss you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

Oh thankyou all for the replies I will keep you updated, thankyou so much

Hi coorslight your story seems very similar to what happing with my dad I hope everything goes well my dad has just been told he needs a peg fitted has your husband had to have this too? Hope all goes well when he starts his treatment xx

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