Cancer. Anyone have a hand to hold?

[Dammitthisisshit]

Fuckity fuck.
I’m just waiting for the tests and trying to come to terms with the unthinkable.
It’s not an ‘if’ it’s a ‘how far has it spread’.
I have young children.

Hi @Dammitthisisshit just wondered if you're still about on Mumsnet. I was sifting through the threads I've commented on and saw this. I have low grade follicular NHL which was thought to be indolent but has unfortunately gone a bit mental and I too had it in my bowel with scary talk of bowel perforation. Just had my first round of Obinutuzumab and Bendamustine and feel pretty awful- would love to hear some words of advice from someone who has come out the other side.

Hoping it's all a distant memory for you now.

Here to give you a hand hold and big hug too 💐

@Aestas hello and sorry you’re going through it too.

I am still on mumsnet though unfortunately not about to tell you the positive success story you’re looking for.

the chemo looked like it was working, everything shrank and just left 1 small area, but I relapsed very quickly and am currently in hospital about to be hooked up for chemo treatment attempt number 2. Fingers crossed this works though to relapse so quickly is a very bad sign.

my treatment was R-CHOP and I’m now heading into RICE. So I can’t offer any words of advice on your specific drugs but without fail the treatments are pretty gruelling. I found just taking one day at a time, and being totally non judgemental on myself on what I needed/felt able to do helped. You’ll have bad days. That’s ok - it’s ok to have bad days and find it tough. (I will never, ever tell anyone to ‘be strong’. You need to let yourself feel whatever you need to feel and that will be different on different days).
Let people help. I have friends taking my children to school, having them for play dates, even baking my daughters birthday cake! I’m not good at asking for help but people want to. Let them. Tell them what you want.

I’m on a couple of Facebook groups - there’s one for non Hodgkin’s lymphoma where there will be people who have been through the same type of cancer you have. That should help you see what you’re in for. Often I lurk but occasionally I post a message and it helps that you’re on a group of others that ‘get it’. Let me know if you want me to pm a link.

and one other thing. Although I’ve had a major setback with this relapse it hasn’t been all bad - for example my bowel never perforated! Lactulose and movicol are your friend there - keep everything soft.

It’s a journey, not one we can predict, but one that is slightly more bearable if you can let it take you - I find giving in to the inevitability that we’re on the journey helps. We have to go with it.

Thank you for coming back @Dammitthisisshit but sorry to hear your update and that you are back on treatment. You've posted some really really good advice there- I think you're right about taking each day as it comes. At present I can't work out which side effect is from which treatment, and what is psychological. I had Zoladex also to preserve ovarian function so also temporarily menopausal!

I hope RICE is as kind to you as any treatment can be, and that your veins are accommodating and your chemo setting comfy! Thanks again.

Wishing you all the best. I've only just seen your thread. I hope your treatment goes well.

@Dammitthisisshit
thank you for updating us. Sorry that the news is not better but am pleased that there seems to be a good plan in place and that you have lots of friends being helpful
wishing you the very best

@Dammitthisisshit

its nice to hear from you (I've namechanged since you first posted), I'm pleased they've sorted out further treatment, but so very sorry you need it!!

I'm glad you have friends helping with the girls.

let us know if there's anything we can do and let us know how you are when you can

best wishes
xx
🤚🏼 💐🤗

Thankyou all for your messages of support. Throughout all this, the kindness of strangers really has touched me in a way that it’s hard to explain. There really is goodness and kindness in this world all around us.

@Aestas if you’re preserving ovary function you are probably younger than me. I’m mid(late?) 40s. I’m so sorry. It’s not pleasant to go through at any age but it’s particularly cruel the younger you are. I again can’t comment on the preserving ovary function as I didn’t do that, but I went into a chemo induced menopause after 1 cycle of chemo. It can reverse but is unlikely at my age and I’ve gone onto HRT for the menopausal side effects which has helped massively so I hear you there on hormonal changes, it’s another thing to battle!

One other thing on bowel stuff, I don’t know what anti-sickness meds you are on but they always prescribe me (I need to check spellings so these names might be wrong - I can double check if you need them ) Ondansetron which make me really constipated. I stopped taking them during R-CHOP as I could handle the nausea with Methoclopromide which doesn’t cause constipation but I’ve been given Ondansetron again with this chemo which is a pain as it’s instantly caused problems - I won’t take it with my next cycle. But you sometimes have to get pushy to get different meds. My consultant has now prescribed me another anti nausea as well and that seems ok. So do be in close contact with your team on what the meds are doing - they will be able to tweak to help you but only if you push if things aren’t working for you.

I hear you on the veins. I panic every time they need to put a cannula in! But I have another PICC line in - it came out for only 8 weeks when we thought I was going to be ok. Too short a time but I did get some lovely sea swims in during that time!

and one last thing. I’ve relapsed, most with my type of lymphoma don’t and certainly not so quickly. So look to the many full success stories as well as mine (and my story is not over yet). Your life has changed and that’s a really hard thing to process, but don’t expect to get there quickly (it took me to after my R-CHOP and thinking that I was going to get better to start to process what ‘better’ would look like). Good luck

I’m sorry to hear about your relapse, I hope you are doing ok. You’re helpful advise to others during your difficult time is great and so kind. Wishing you a speedy recovery x

Hello all.

In case anyone is still following I wanted to update you (spoiler:there’s good news).

I last posted when things were rough, my first chemo had failed my second was pounding the hell out of me. That was nearly a year and a half and… well… I’m still here!

I’ve had some very dark days. 5 different types (courses) of chemotherapy, 2 courses of radiotherapy. And the thing that turned it around… CAR-T.

I finally got my news of remission in September.

I don’t fully know what the future holds (but no one ever does!) but it’s looking so, so much brighter than 26 months ago when I started this thread.

Thankyou, strangers of the internet. Your kindness when I was struggling touched me greatly. Please, please know you helped. And all give yourselves a pat on the back, and sorry about mangling those hands.

Those that were going through treatment too, I hope things have been as ok as they can be.

I’m changing my username now. Whatever is coming I’m ready for cancer to no longer be the thing that defines me. I’m ready for life!

This news has made a random stranger have a shiny eye moment. Just wonderful. All my love to you and your family x

Wonderful news! Congratulations 🥳

Yay!!!!!!! 🥳

Wonderful news OP. Go and enjoy life!

Wonderful news!

Oh my goodness, I am so delighted for you 😍😍 fabulous news!!

Great news OP, good to hear something positive & gives those with cancer hope 🙏.

This is amazing news! What a lovely update 🥰

Congratulations @Dammitthisisshit that is truly wonderful! I've heard great things about CAR-T but I understand it's a pretty brutal process.

I hope you're having a nice calm, restful time returning to 'normal' if there is such a thing.

I am also in remission too but like you know it'll come back at some point. Still feel very much like I'm taking it one day at a time- can't book anything in advance!

Love and solidarity ✊🏽

Ah! 🥰🥰🥰🥰

It’s dammitt here! I tried to name change and disappear but I didn’t want to ignore you!

I'm so pleased that your treatment is over for now and was successful. Completely understand the not knowing how to move on - it’s part of you and it’s completely normal to worry about when it might return.

When I was diagnosed my biopsy report said that there was some evidence that I had follicular lymphoma that had transformed to DLBCL (diffuse large b cell). But they were treating for the DLBCL as they treat for the highest grade. Anyway… I asked at my last appointment if there was any way to know if it was transformed follicular and if that meant it would return and they said that they had no way of knowing but in some countries they’re starting to use CAR-T for treatment for follicular lymphoma (not in the uk yet but if it’s successful in the US it should come over here). And they are making big improvements in other immunotherapy. So I wouldn’t be surprised if we see more immunotherapy treatments for follicular coming up. Everything crossed for decades of cancer free life heading your way.