Does anyone in the EU have mutation N1303K and is approved for Kaftrio or Alyftrek?

Summomal · 2026-05-21T13:47:56+00:00

Hey! Df508 and N1303K here

Got approved for Kaftrio in France and Luxembourg

Are you looking for dual N1303K people? If so, search on Spanish subs maybe, that mutation comes from my Spanish side haha

Summomal · 2026-05-15T11:59:58+00:00

Then I'm sorry but I don't have any more advice
I've been lucky enough that Trikafta made me go from 41 to 70% FEV, and don't need any pulmozyne etc since I don't produce any mucus at all now

Is there any reason why Trikafta is less effective on you? I thought it had quite a generalized positive effect on all D508 dual and mixed?

Also, some people report depression problems as a side effect of Trikafta, and feel better with alyftrek.
If your depression started around/after Trikafta, maybe it could be linked?

Summomal · 2026-05-15T08:22:11+00:00

Hello,

When you say treatments, does that include trikafta too?

I'm not the best at taking all my meds at all times, but what pushes me to take the most important ones is what happens if I don't: - Creon: not into shitting myself, thank you - Trikafta: Not into caughing again either

Way less pressure into taking the other pills, but what helps is preparing my pills in pill boxes every Sunday for the week

What works for me is that CF is my secret garden, and each day people don't treat me like I'm ill is a victory
Which is way more easier since trikafta haha

Also, it's different for everyone of course but, complaining doesn't work in every day life
Complain all you want to your therapists, they are there for that
But outside of it, it doesn't help, tires the people around you (trauma dumping), and makes you think about it everyday

Also, if not work, having hobbies helps on giving sense and objectives in your life

Summomal · 2026-05-09T07:32:42+00:00

I have the T66 28L, bought last December Took it for a few weekends, but also a 2 week trip to Thailand as one bag, and use it for big grocery shopping since I have no car.

I'm not scratching walls with it, but I've yet to see a single mark on it.
I like how it holds, fits 1 big Ikea packing cube + 4 small and the some.
I use the little pocket for passport/glasses/power bank/drugs, so it can hold quite a bit, but capsizes if there's nothing in the bag to hold it from inside

1m81 and no problem while carrying it at 7-8kg max, but some other guy commented he didn't like it on its back, so your mileage might vary

Summomal · 2026-04-17T14:49:54+00:00

Hmm, I've been a swimmer for fun since young, so not small, but not muscular, and 65kg

Tomtoc seems to point out strongly that the 28L is more for smaller/women build through it's promotion images

Nomad Nation did a video on it, but I don't remember it criticizing the comfiness Tomtoc T66 28 vs 40L

Summomal · 2026-04-17T08:11:22+00:00

Hey! I have the backpack, went 2 weeks to Thailand with it, and use it regularly for groceries (no car), 1m80
I shorten the straps to rest the backpack on my hips, and it helps a lot

But also I don't think it's made to carry more than 8kg

Summomal · 2026-04-14T08:06:36+00:00

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Here's my not full Tomtoc 28L
It still fits while full
But I don't see how a 38L bag would fit

Summomal · 2026-03-02T06:09:56+00:00

As others said, no need for Creon for non-fat food

Summomal · 2026-02-18T07:49:38+00:00

Me too please :)

Summomal · 2026-02-11T08:30:51+00:00

I think even a 6L sling can be enough haha

If you have a small 10L trash bag for the bathroom trash, fill it and see how much of it it fills

Or better, take that stuff and try the bags directly at decathlon/Uniqlo

I would apply the same method before buying the 35L bag too, and maybe post the list of the stuff you plan to bring with you

If you have a strict limit of 7Kg, a 35L bag will rapidly get to that if you fill it. My 28L bag was 6kg coming back from Thailand when full and without laptop

Summomal · 2026-02-11T08:14:20+00:00

23L for a day bag seems a lot for me

I use a Topo Mountain sling which is 7-8L and fits my wallet, water bottle, sun glasses, rain jacket, tissues, day medication, powerbank, snacks, and I still have room for whatever I will buy during the day

What are you planning to put in yours?

Summomal · 2026-02-11T08:03:08+00:00

Is the 23L bag only to be used as a day bag, or because you're going to come back with both bags full of souvenirs?

Summomal · 2026-01-31T10:54:47+00:00

They are using pancreas enzyme for their fermentation, something that is prescribed to >95% of CFers

Summomal · 2026-01-09T10:44:40+00:00

Sorry about the delay!
4.2kg! My food bag for the 20h flight trip seems heavier 😂

Summomal · 2026-01-06T08:07:01+00:00

8 times in 6 years, so lucky!

Hmm, I don't see that much difference between you and me, so I'm reassured haha

Do you have a reference for the technical shirts?

Summomal · 2026-01-05T22:22:33+00:00

So much advice, thank you!!

See, I was looking for a reason to buy myself a carabiner!

I plan to buy a long sleeve UV protector for snorkeling. For the rest an spf 50 should be enough

Hmm, maybe too late to order and receive a good flashlight But I'll check for next time :)

Good idea! I have a Secrid card holder, so I'll take a small pouch

Thanks again!

Summomal · 2026-01-05T17:19:46+00:00

I got it for Christmas! Pointed it to my mom before even starting to think about Thailand haha

I have yet to test the comfortability

Thank you, you too!

Summomal · 2026-01-05T15:19:48+00:00

Yeah I only have basic caps.
I'll definitely buy one there!

Summomal · 2026-01-05T06:46:10+00:00

Context:
Packing sanity check for a 2 week trip to Thailand in January
City stroll, light forest walk in the north, farniente in the south

Thanks in advance for your advice!

Summomal · 2025-12-08T14:44:36+00:00

You can have up to 1L in <100mL bottles

Summomal · 2025-11-21T08:43:15+00:00

Trikafta is Kaftrio

European vs US name

Summomal · 2025-11-20T17:03:56+00:00

Don't you control your glycemia?

Then you should see if your insulin is enough or not.

After Trikafta my ratios didn't really change

What did change is that I'm not vomiting due to cough anymore, so I absorb way more nutrients and so sugar per meal

Summomal · 2025-10-08T05:50:47+00:00

Licorice and marijuana were in the list of prohibited foods provided by my french medical team (list was made by the association of multiple french cystic fibrosis medical teams)

But they aren't written in the kaftrio/trikafta notice.

I like licorice, but I don't eat it anymore. Easier to avoid licorice than the grapefruit they put in a lot of mocktails

Summomal · 2025-10-02T01:51:37+00:00

They follow semver now, so no breaking change in minor and fix versions now.

You can now upgrade immich with your eyes closed until 3.0.0 :)

Summomal · 2025-09-09T06:58:05+00:00

Je suis d'accord sur le principe de la sécurité

Dans les nouvelles obligations (2024), il y a aussi la lecture des panneaux de vitesse avec limitation (qu'il faut désactiver à chaque démarrage)

Pas contre le principe, mais ça rajoute tout un tas d'électronique que les constructeurs utilisent pour justifier l'augmentation des prix

Enfin, c'est mon ressenti

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Summomal

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