New LAM guidelines

sciencecodex.com/new-guidel...

[sassy59]

Interesting information Fran. Rare and complex and l do feel for those with LAM. You take care and enjoy your day. Xxxx

[Hidden in reply to sassy59]

Hi Carole

Thank you. The American and Japonese lead the research market..

You too. Have a lovely day 🌸🌷🌺

[sassy59 in reply to Hidden]

Thanks Fran. In 1991 when Pete was diagnosed with sarcoidosis l found information from America which helped us both to learn about this horrible disease. Xxxxx 😘

[Hidden in reply to sassy59]

Good to know thank you Carole. We are so lucky to have all that info available on the net and be able to share it. At least we are more knowledgeable in the face of adversity then we can take it or leave it..

Had my 30mn physio, my oxygen levels have jumped up since yesterday’s walk.

Nothing like fresh air 😉

Xxx

[Hidden in reply to sassy59]

Hi Carole I'm mel nice to speak xx what is sarcoidosis.? I too have lam like happy London and have followed alot of your messages and you sound like a lovely couple who are very popular xxx say hi to pete xxx mel xxx

[sassy59 in reply to Hidden]

Hi Mel, nice to chat to you too.

Sarcoidosis is where granuloma build up in the lungs and airways causing scarring. It can affect all organs including the skin and isn’t easy to diagnose as it mimics other illnesses.

Thank you for your kind words and l will say hi to Pete for you. I’m babysitting our granddaughter at the moment and she’s great fun, only 3.

You take care xxxx

[cofdrop-UK]

Interesting article Happy. Thank you for sharing.

cx

[Hidden in reply to cofdrop-UK]

You’re welcome Cof-drop x

[Hidden]

Morning fran xxx thanx for that info xxx got docs at 320 today xxx have a nice day with mum xx

[Hidden in reply to Hidden]

Morning Mel ☀️ Thank you 😊

Will be thinking of you 🤞🤞

[Lin76 in reply to Hidden]

Hi Mel! Hoping and praying dr apt was ok and you are too.

[Hidden in reply to Lin76]

Hi Lyn not doing too good at mum xxx fed up of being fed up lol xxx hope ur doing ok xxx

[Lin76 in reply to Hidden]

Oh Mel....I know sweetie its so awful. LAM is a very tricky disease process. I am thinking of you,praying for you,and we are here for each other Mel. Take it easy.

[Hidden in reply to Lin76]

Oh thank you xxx

[Lin76 in reply to Hidden]

Mel what is mum?

[Hidden in reply to Lin76]

Sorry mo it meant to say. So not doing too good at moment xxx

[2greys]

Brilliant at long last you have up to date info, well done with your find.

[Hidden in reply to 2greys]

Not my doing 😊 The LAM forum posted it, I just shared..They keep us updated. When you look closely it is all negative!! They put reserves on all cures and ops. For malpractice reasons I suppose. The reserves on sirolimus the only drug approved are essential. I was lucky the Consultant warned me off. It is originally a drug for kidney cancer..I am glad they are discouraging dangerous biopsies etc..We are not guinea pigs x

[Lindy-loo1949]

5 out of every million!!??? How on earth did you get so fortunate? My God, at least there is light at the end of the tunnel, you must be excited!

[Hidden in reply to Lindy-loo1949]

My mum made me!! The cell mutations occurred in the embryo. There’s no light, nothing new has been discovered, just some indication of how not to torture people to get a diagnosis. 😃

[Lindy-loo1949 in reply to Hidden]

Step by step, your mums place does look very lovely

[Hidden in reply to Lindy-loo1949]

Thank you Lindy. Nice one bedroom flats with alarms, thin walls..a friendly reception area, a dining room and they can have tray in their flats if needed for extra. No leisure activities. No care. A real problem as she is ninety. I am waiting to hear from her GP to organise homehelp. Xx

[Lindy-loo1949 in reply to Hidden]

well she probably deserves it she worked all her lifefor the luxury of having somebody delivering food to your room right? We have places like that here and they cost a fortune! 5,000 and up. Then theres the gov't funded.... dont need to comment on those hell holes!

[Hidden in reply to Lindy-loo1949]

I am sure..this flat has a happy ending story. Mum used to rent the flat who belonged to an equity fund which bankrupted at the time of the Lehman brothers crisis!! So they sold them for half the price. The authorities intervened.. anyway they charge 3 extra € per tray if you want to know the truth but when you are unwell it is an extra comfort.

[Lindy-loo1949 in reply to Hidden]

Did I mention that the cost to the pricy assisted living places are 5-6,000 per month? Dang I will be just east of that bus stop picture I posted... just in the tree clearing ☺ isn't that a crying shame? I mean really I don't know many people especially in my circles that can afford anywhere near that! Oh well... I am fortunate however that I do live in a place that has tap on the rentals. So I'm comfortable and they're going to have to take me out in a pine box.

[Hidden in reply to Lindy-loo1949]

A huge sum..I am glad you have a fixed rent and you are comfortable. It is hard to find reasonable accommodation in Europe too. Xx

[Hidden in reply to Hidden]

My god some people just don't get it eh Fran xxx I'm also supposed to be positive about siriimus but when I had been on it a few months I got a bad serious case of thrush in my mouth ... my lips mouth tongue throat and oesophagus was thàt full of sores I couldn't get even a 5ml spoon of water in ... I was being sick well if that's what u call bein sick for 3 weeks in all ! it seriously made me lose all faith in the siriimus. That along with the written side effects which were horrendous scared the life out of me ... but as for light at the end of the tunnel not a chance !!!It's a very sad prognosis which I'm struggling with but feel empowered by you and your lovely pics and well written facts regarding this sad selfish disease we both share xx x sorry about the doom and gloom but here's hoping your mum .,Bro and yourself are well 😤😭😊😼

[Hidden in reply to Hidden]

Hi Mel 🌹

Yes rare diseases don’t go away and there is little research investigation because there are so few of us, all women and all!!!

I am sorry the Sirolimus didn’t work out there is another one they are trying for in the States I will post the clinical trials for you in case they have them in the UK.

You are in the best possible team In Nottingham..How did it go at the doctor’s..with Mum and things to do I am losing track of time..

Keep on looking at the light in those pictures Mel..✨✨✨

Have a good night xx

Fran

[Lin76]

Great article!

[Hidden in reply to Lin76]

Thanks Lin. Hope you have a comfortable night xx

Fran

[Hidden in reply to Lin76]

Do you have LAM too Lin??

[Lin76]

Sorry probably late,but not definate yet...Langerhans disease. All my CT say it is,so i went for vats for definate. I am praying they come up with a cure,so take my tissue test but PLEASE use it to find a cure. The langerhans histiocytosis web site is really sad,I can not explain it. But if adult and in lungs the main thing the Drs say is just quit smoking.....theres more to this than that! So I'm praying for the children,the infants the parents who watch their litlle children suffer. I am praying so hard that the Drs find a cure for us all..but mostly the children. Im 59,have also a rare cardiovascular condition too called nut cracker syndrome,my left kidney vein is at a 90 degree angle then wraps under my aorta and got atherosclerosis in all my arteries, so i feel fortunate to have had a pretty good life considering these lil Angels who start out with it Hope you had a nice lunch. I will chat tomorrow with you hoefully. Good night and God bless you Happy London! Xx

[Hidden in reply to Lin76]

I am sorry Lin, it is a tough one too. I hope you feel better after your operation.

I remember it was one of the rare diseases on the list I had to to be tested for. I had to go to dermatology and had a special light screening which eliminated a whole bunch of lymphatic diseases which were skin related. And I only smoked a little when I was young,to show off I think 😉

Anyway when you google our diseases it’s like looking at an encyclopaedia of horrors but individually we never get the whole spectrum of symptoms and even if there are no cure there are ways.

There are ways Lin and hold on to that. I didn’t know Prednisone could make such a difference to my life when this summer I could barely stand and walk. I have at least regained mobility.

I think you are lucky to live in a country where medical studies are advanced.

I wish you well Lin 💕

Fran xx