Hi Gilly

Immunotherapy messes with your hormones is my understanding. I had a years worth which upset my thyroid function. I too had already gone through the menopause but suddenly got hot flushes at least once a day and still do.

Of course i can't promise this is your cause / problem but i believe it to be the cause of my sweats / flushes.

Thank you so much for that, I think you may be right.  The flushes are not nice are they. Very best wishes to you

Glad to have been of help. For the record i too have lung cancer, feel free to message if i can be of further assistance. Mine is nsclc 3B. Had lobectomy and wedge resection, 4 cycles of venorelbine and carboplatin and a year of atezolizumab.

No medical knowledge or experience but i do have a whole lot of common sense.

I have had no operations as it is terminal but the immunotherapy seems to have stopped it growing although it is in both lungs so I’m ever hopeful I have a few years left.  It’s so amazing what they can do nowadays.  It sounds like you have been through the mill a bit, I’m sorry about that, how are you feeling now?

Hi Gilly

I'm quite well if I'm honest. I had no problems with the operation or chemotherapy. Had quite a few side effects with the immunotherapy though, thyroid went crazy, pneumonia, skin rashes ,hair loss and the like but live to fight another day so to speak. Things for me remain unknown as high risk of recurrence but so far no sign of that and it's been two years.

i already had knowledge of cancer, chemo and radiotherapy as my husband went through it all some years ago, unfortunately he passed away as a result.

What type is your cancer? Do you have a good support network around you?

The type of cancer I have is (quoting from hospital letter all jabberwocky to me lol) 

T1c N2 M1b non small cell lung cancer (PD-L1 90%). EGFR, ALK wild-type, KRAS c.183A>T variant.

if you understand this then please do explain as I don’t.  It also says that the bulky soft tissue elements of lung cancer remain under good control but that I have got some widespread interstitial shadowing the nature of which is difficult to be certain.  I have some right sided heart failure secondary to some pulmonary hypertension and may well have lymphangitis or ongoing pneumonitis.  It seems I’m not well ha ha.  Actually I don’t feel too bad apart from being breathless when I do anything that requires effort like going upstairs.  It’s nice to talk to someone about it but I also have a good family and daughters to support me.  The hospital has a cancer club called Maggies but I’ve only been there once at the beginning, I should make an effort and go again we’ll see.  I’m sorry about your husband how old was he?  Glad your feeling okay now.

Hi Gilly

Mmm mines a 90% PD-L1 also with KRAS but a different number. So I'm guessing you have the same immunotherapy as me simply because i was told that one is specifically for the PDL1?.

I'm surprised that a T1C had spread as per the M number only because T1 is small to the best of my knowledge (but then i don't heve any medical knowledge so likely im wrong)

Were you a smoker? I was so not judging you in any way shape or form. Of Nsclc there are 3 types,  mines an ardenocarcinoma be interesting to know which of the 3 yours is.

My husband was 62 when he passed his cancer was not lung though. I've lost two brother in laws this year to different cancers also, one in April and the other just on Wednesday gone. It's a *** of an illness and they're getting younger and younger in diagnosis.

I'll have a look up of your stage and grade to try to understand it more. 

I also have amazing kids whose support has been second to none over the last couple of years. 

Xx

Yes I was a smoker and thoroughly enjoyed it to be fair.  I vape now but no nicotine just a dummy really.  I gave up 12 years ago when my mother died, she was an avid smoker but lived until she was 96 and died of flu, jammy lady.  You have a lot more knowledge than I do on cancer.  I think the T1C is in my right lung the main cancer is in the left.  Glad you have support from your family.  My husband has taken over cooking the evening meal and is surprisingly good at it, a hidden talent.  I don’t mind this at all in fact I rather enjoy it but I still do most of the housework except for hoovering so life is actually easier for me than it was before diagnosis lol x Gill

Yes I was a smoker and thoroughly enjoyed it to be fair.  I vape now but no nicotine just a dummy really.  I gave up 12 years ago when my mother died, she was an avid smoker but lived until she was 96 and died of flu, jammy lady.  You have a lot more knowledge than I do on cancer.  I think the T1C is in my right lung the main cancer is in the left.  Glad you have support from your family.  My husband has taken over cooking the evening meal and is surprisingly good at it, a hidden talent.  I don’t mind this at all in fact I rather enjoy it but I still do most of the housework except for hoovering so life is actually easier for me than it was before diagnosis lol x Gill

You sound like you have a really supportive family and I'm glad things are easier for you now.

I'm a bit at a loss as to your stage and grade if honest as T1c is tumour is between 2 and 3cm, small in my own personal (without medical knowledge) opinion, the only thing i base this on is mine was almost 7cm hence T3b.

However with you saying you think that's a smaller one to the main one in the other lung it makes me wonder what size that one is and if that's the primary why the stage and grade of that one is not recorded, if you get what I'm saying. My suggestion would be ask your cancer nurse or oncologist for more information if you really want an understanding of it further.

I do actually personally know a lady who's terminal as you put it, hers is in her bones now but she's still very well positive and having successful treatment to keep her going, So with that in mind I'd like to think you've a good few years of your husbands cooking to enjoy ahead of you.

Keep on that dummy too if it's kept you off the fags. Must confess i enjoyed them too at the time, in hindsight foolish but then again my friend who's terminal never smoked in her life. Her oncologist claims based on the genetic make up of her tumour it's most likely been caused by air pollution!!

You sound very upbeat with it all. As per Jenny's suggestion i would see your GP or again ask your cancer nurse if there's anything they can give you to help with the flushes. Bit rubbish having to do menopause twice so to speak even if it is immunotherapy related.

Keep your chin up as they say and if you need a shoulder....... i have two.

Xxxx