A rare lung cancer

[Lynx57]

I was diagnosed a lung adenocarcinoma, a RET positive fusion mutation in Januarya2024.Am told its a rare cancer.

I would like to chat with anyone else here who may have this type of cancer and is being treated with Selpercatinib pills.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

HI Lynx57

I believe we have been in contact already, I hope you hear from others in the forum who also have this mutation. I have placed some additional links below which may be of use.

You may or may not be aware of cancer support in France and here is their link: cancersupportfrance.org/

or lungcancereurope.eu/

This is the link for Global Lung Cancer Coalition, the international voice of lung cancer: lungcancercoalition.org/?s=...

All the very best

Ask the nurse support team

0800 358 7200 Monday to Thursday 0900-1700, Friday 0900-1600

email us at [e-mail]

The Roy Castle Lung Cancer Foundation

[Lynx57 in reply to RoyCastleHelpline]

Thsnks again.

[Bow-19]

Hi Lynx, there is also a website that you might be interested in at retpositive.org Hope that you find something useful there x

[Lynx57 in reply to Bow-19]

Thank you.

[Bow-19 in reply to Lynx57]

It’s also worth looking at oncogeneresearch.org they have a website and a facebook page for patients and there is information on there about RET x

[Lynx57 in reply to Bow-19]

Many thanks. I think I shall stick for now with this link and one sent by RCHelpline. I feel fine, except for suddden bad skin eruptions, now on face, and higher blood pressure requiring suspension of the pills and hence travel. Am grateful I can access probably some of the best medics.Shall keep hoping a patient will get in touch too, I may be in the 1% here but am not alone!

.You both answering me here have helped me too

[Mindini1964]

Hi there,I was diagnosed with adenocarcinoma this time last year, in both lungs. For the last year I have been on a watch and wait as my largest nodule /tumour is 3.1cm, the others are smaller. In the year they have all grown 1mm so far as this is a very slow growing cancer . Sorry I can't help you yet with treatment, but wanted to reach out with having the same cancer. Mostly I am fit and well but can get a bit breathless with exersion, but saying g that I am 60!! Hope all goes well for u.

Regards

Amanda

[Lynx57 in reply to Mindini1964]

Hello Amanda, am so glad to hear from you. Am 67. My problem now is with the bad reaction to the pills, which had to be stopped now 2 weeks as my face, this time, was/is though better, a mess. The tumors themselves had shrunk at the September scan. But yes, am otherwise mostly fine too thankfully.

[Mindini1964]

That's great news they have shrunk. What size is yours. Is there only 1? Iv been told when eventually my treatment starts problems will occur, but not looked into that yet. I had oral cancer when I was 37 & had major surgery and was left with a few problems. When this was found they thought it was a secondary to the lungs to which there is no treatment. A specialist fought for me saying it wasn't that but a primary to the lungs so treatment available. I'm so blessed this is the case. No surgery tho as scattered in awkward places. Apparently it's the same family cancer tho but greatful it's slow growing. Only issue I have mainly is I get a very sore chest after si ging karaoke which I love !!🤣

[Lynx57]

Main tumor I think was big, with spotting on other lung. Inoperable but on the new drug Selpercatinib, which seems very effective in controlling tumors but for me with these side effects.Due to restart low dose pills next week under regular supervision.

At diagnosis was told the cancer probably had been growing over several years.

Pity that, as far as am aware, regular lung xrays are are not yet recommended, like for example mammographies..

Take care.