Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

Sending hugs Tilllly.
Hope the new drug gives you some pain relief. Xx

Oh @Tilllly. Sending you all the love in the world.

So Sorry to read your update @Tilllly sending you much love xx

Sending strength @Tilllly 💐xx

So sorry to hear your update @Tilllly , thinking of you xx

Oh @Tilllly hoping you get started on the new drug ASAP, we're fighting with you x

Yes we are all behind you I will be thinking of you x

@Tilllly what a shock! I can’t get my head around it so can only imagine how you feel, big hugs x

@Tilllly your news saddens and angers me. Bastard bastard crappy shitty disease, causing pain and suffering; how very dare it!!!

Really hoping this drug gives you some quality of life and pain free time.

Thinking of you... 🌷

@SewingBees are you on ribociclib? If so, when do you take it? ( if not, tell me to clear off!) 😊

@Enigma52 Yes Ribociclib and Letrozole, I take them mid morning to lunchtime. Just habit really, when I was on Tamoxifen I found I got fewer night sweats if I took my pills in the morning.

@SewingBees thanks. Do you take the full 600 dose?

I'm struggling a bit. On cycle 3 and if I take in the evening after dinner, my digestive system immobilises during the night and I'm constipated.

Lunchtime and I'm feeling queasy by 4/5pm and first thing with breakfast, just leaves me " off " for the rest of the day.

There has to be a "right" time, surely!

@Enigma52 Yes full dose I think - three tablets. Have you tried taking any anti sickness tablets just before? I don't know that I can be if much help because luckily for me the side effects are minimal. A bit of fatigue, a sore mouth from 8 days into each cycle and that seems to be it.

If you're really struggling then speak to your oncologist because there are two other very similar drugs you can try.

Hoping you get a solution x

@SewingBees thanks, yes will speak to the oncologist I think. Maybe over time, the body will adjust to the drugs.

They did prescribe an anti sickness tablet, but it doesn't do much x

I am struggling with pain again today, because I can't take the anti-inflammatory because I can't take the one that protects my stomach, because that interferes with the new drug.
So I'm just amitriptyline . And morphine and paracetamol. And I don't think it's enough. It's not as terrible as it was when I was in hospital, but I'm uncomfortable and that's a bit of a shock after not being uncomfortable yesterday.

@Tilllly that is horrible, have you got a contact for help with pain relief? Really hoping it gets back under control quickly. Sending strength 🩷

Tilllly
sending all my love to you. 💕. I cried when I read your post. I hope your pain is under control xx

@Tilllly Oh no, I am so sorry to read your post from yesterday. Sending you strength and love 💕xxx Thinking of you a lot and hoping they can help with the pain again asap.

Princess @Tilllly you are definitely the most important person on this thread, along with Daisy Dog. We are all rooting for you.
Could they give you old fashioned ranitidine with the anti inflammatory painkillers? Or just take them with food?
Sending love and strength xx

We have just met the Hospice nurses and they have offered overnight care occasionally for FIL so we will bodge along with the three of us managing for the next week or two. Nobody knows what will happen next. My scar revision is April 5th so at least I can plan that.

@Tilllly hoping you can get some more relief from the pain.

@Tilllly sending love and hope pain is more under control. Big puppy hug for your glorious Daisy x

@Tilllly So sorry to hear your news. Stunned and shocked on your behalf. How can that be happening? It seems so impossible. Yet, it also feels like it could happen to any of us. I do hope the new drug works. Are there any trials you could be considered for? Research is so frustratingly slow. When will cancer be eradicated? It is just so fucked up. Sending love. ❤️❤️

@Tilllly sending you all my love and praying your pain eases soon Xxx

Honestly, I think my brain has been removed. Why didn't I think of ringing the pain Team?

They told me to carry on with the anti-inflammatory, and they would find another proton inhibitor stomach protecting thingy

My GP rang earlier to say they had sent my prescription to the pharmacy, so I assume they have found one

But why didn't my oncologist do that instead of just taking me off the drug that was stopping my pain?

I FaceTimed my youngest DS at University today to update him

He cried.
It was absolutely fucking brutal.
No child should hear that Mum will not be here for their 21st birthday

So sorry @Tilllly
You are right, no child should have to hear this news. The complete fuckery of this disease; ruining lives,

Wishing you less pain tonight and in the coming days. Gentle hug x