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The Roy Castle Lung Cancer Foundation

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Looking for others going through similar

Tolquist profile image

Hi I am been diagnoses with small cell lung cancer, possible in the brain as well just waiting on scan wondering if there are others on here with similar or experience of similar, i am wondering about the treatment I've been offered and it seems a bit odd to me

13 Replies

Hi Tolquist, my brother was diagnosed with SCLC in October 2019 at the age of 43. He had four rounds of chemo which ended on christmas eve then had 10 rounds of whole brain radiation which started in January and ended February. He’s had no treatment since and his cancer is non-active. At the time of diagnosis he was given 3 months to live without treatment and 18 months with. He is living a normal life and this week joined a gym. He decided when he got diagnosed to start taking cannabis oil, not sure if this as helped but it certainly hasn’t hindered him. He did relatively well through all the treatment and got hardly any side effects apart from a little tiredness. Stay positive and I wish you well.

Tolquist profile image
Tolquist in reply to CherylC-J

wow sounds like quite a good outcome so far for him, I just need to find an oncologist that will treat mine instead of deciding i can't cope

CherylC-J profile image
CherylC-J in reply to Tolquist

Yes Tolquist you are absolutely right! The most powerful thing you have to fight/survive this is a positive mind.

Interested that you mention the cannabis oil...There's a lot of research saying that it can help cancer and pain as well as chemo .etc side effects

Red58 profile image
Red58 in reply to CherylC-J

Fantastic to hear x

Hi Tolquist hope you are ok. I myself have been diagnosed with small cell left lung cancer which my lung collapsed and spread to my esphogus. I have just recently finished my treatment wasant Plain sailing but persevering is something that you need to do. I had biopsy then scans numerous blood taken. I had a 4courses of chemotherapy a three week break in between to get yourself a bit better. I was on the tube for 2hours a go for 3days and tablet form for 2days I can't remember of hand what it was called. Then a scan to, see how you've done. Then a 15day course of radiation. The side effects are different for everyone I found been very tired alot. Lost my hair which was not very nice it is now starting to grow back. But that is me. You will have emotional days and good days keep positive try and get involved in a hobby communicate alot with whoever and mostly let people help you when they offer. You have Mcmillan there for support. If you need anything please get in touch any questions I will help the best I can. Keep strong and all the best x

Tolquist profile image
Tolquist in reply to Sixtygirl

hope you are doing well, thank you for replying :)

Hello Tolquist, I too had small cell cancer in the left lung but they didn't know until they'd removed the top half ! Sailed through chemo 4 doses about 7 hours each time followed by 10 days of brain radiotherapy. Everyone reacts differently to chemo but whatever the reaction it's worth it. Radiotherapy 5/6 minutes each time. Be strong and fight it all the way. Wishing you good luck with the treatment. 🤞

Hi Tolquist

Welcome to the forum and sorry to hear you have lung cancer. Hope you have the results from your scan soon so a treatment plan can be decided upon.

You mentioned the treatment offered was odd, are you able to clarify on that?

Having a cancer diagnosis can be quite confronting and you may find yourself having a rollercoaster of emotions, that can be sudden and unexpected. This is all normal and the forum, as you can see, is a great place to find encouragement and support from those living with lung cancer.

This link is our information booklet on small cell lung cancer roycastle.org/app/uploads/2...

We have a range of information booklets that you can access through this link, from diagnosis, types of lung cancer, living with lung cancer, brain metastases and all the different types of treatment options: roycastle.org/help-and-supp...

As well as our forum, we have online support groups through zoom and you can register your interest through this link: roycastle.org/help-and-supp...

If there is anything you would like to discuss further or ask about you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

Hi, the treatment offered has basically changed three times in less than 8 days, at first I was told chemo and radiotherapy, a few days later chemo then radiotherapy after a week after that I've basically been told 1 week of radiotherapy and that seems to be it

I've had no further tests or scans in that time, the treatment seems to have changed because I have the low sodium issue which has been making me dizzy and worn out so use a wheelchair for appointments, I am now on treatment for the sodium that seems to be working well and I feel great lol so a bit shocked to find out I am pretty much been given up on

Hi Tolquist

It may be the treatment regime was changed to allow your sodium to get back to normal, and it is good you have responded well to the treatment for this.

Perhaps contact your lung cancer nurse specialist to ask why the treatments have been changed. I take it that you have not had your brain scan yet that you mentioned in your previous post, again they may be awaiting the results of this before deciding what treatment option gives you the best outcome.

Sorry this has left you feeling as if they are not bothering with you or providing hope, but it may simply be that they are awaiting for your sodium level to be up, that you feel better (which you do now) and any other results they are waiting on.

An explanation from your oncology team may ease your mind and reassure you that they are genuinely invested in treating you in the best way that they can.

If you would like to discuss further you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

Hi tolquist, I was diagnosed in November with sclc. This was found from having low sodium levels - normal levels are around 135 mine were actually dangerously low at 45, and until those levels were back up to 135 I wasn't allowed to continue with treatment. Low sodium is a sign of the cancer playing up! My sodium is now stable and I finished treatment chemo and radiotherapy in May. The last scan showed that there had been significant shrinkage. I can tell when my sodium drops as I get dizzy and tired and my urine output is minimal. Positive thinking is the way through this very tough journey we are on.. good luck and keep us updated. X

Tolquist profile image
Tolquist in reply to MN05

ah same with the sodium symptoms here, although i get a bit of cramping in the toes

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