Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

Oh @Chocolateismyfavourite that is bollocks! Sending love and sympathy and a free pass for the Rage Room when you need it. Things are changing so fast in cancer treatment nobody can imagine what it will be like in the next few years. My DD got her research job with Pfizer BioNtech to work on the cancer vaccines. She can save us all!

@MyLeftBoobie this is definitely not a competitive place. Everybody is welcome even if they are just worried about weird symptoms. No cancer is trivial either. They all cause dread and wreak havoc on us.

Ah @Chocolateismyfavourite I’m sorry to read that, really utterly shit. The rage room is all yours for now. Take time to take stock and then head into battle knowing you’re getting the latest, shiny, new drugs. Still shit to be taking more drugs, but needs must! Thinking of you.

I’m so sorry @Chocolateismyfavourite that is utterly crap news and so fucking unfair. I guess the only positive is that as others have said there are new treatments coming all the time - the shiny new immunotherapy that I am on was only approved very recently and has massively improved outcomes.

@Chocolateismyfavourite that's so shit and I'm sorry. I'm going to be starting immunotherapy for my melanoma soon and that's had an insane effect on melanoma tumours. I'm in a group where people have been diagnosed at stage 4 with brain & liver mets and after 8 weeks on immunotherapy have no evidence of disease. This is again and again too, in my previous life I was a research nurse for immunotherapy and it really is a real game changer.

As for me I've started amitriptyline and omg the difference is night and day! Knocks you out though!

@Chocolateismyfavourite sorry to hear it's not good news. I have heard of a lot of people who have had a good response to immunotherapy but shit more treatment is always so unfair. Keeping everything crossed for a good response.

I also struggle with people's reactions and the relentless positivity and the expectation that I must show the correct 'fighting spirit' when all I want to do is throw my toys out of the pram, not become a poster girl for fighting cancer. Some days it feels like I've not only got to get through treatment (due to start chemo radio in a couple of weeks) but get through it in the 'right' way, always cheerful and never grumbling even though I'm fucking terrified that there's a very real chance I won't be here in five years time.

Most days I do try and think kindly of well-wishers, I'm sure I've made similarly banal comments in the past and I think people really struggle to accept that it is so arbitrary - cancer doesn't give a shit who has it.

See a lot of people's responses to me have been really dismissive and it's been incredibly difficult. 'Oh it's just a mole what're you worrying for'

'Oh but they cut it out so it'll be fine'

Erm yeah just a mole that has spread to my lymph nodes and has a massive chance of spreading to my organs...

A 'friend' of mine offered to take me tanning ffs when she heard! 'Get a bit of sunlight' I've never tanned in my life and have skin cancer I don't think that's appropriate! I saw my scars today they don't look too bad! I've definitely had an allergic reaction to the adhesive of the dressing!

The last one is on my neck in a really unfortunate place that makes it look like a massive love bite 😂😂

@FangedFrisbee tanning?! That definitely wins this week’s “Stupid Comment” award. I mean, I know it’s only Wednesday but I’m calling it early.

@Chocolateismyfavourite that is really, really fucking unfair. I’m so sorry.

@WorryMcGee I know! I have resting bitch face at the best of times but jeez my face was like this haven't spoken since

@TopOfTheCliff I can honestly say this page is so supportive. It's nice to know you can discuss anything and people will care and help you.

@Chocolateismyfavourite Your news from your results today is so bloody unfair. You really didn't deserve that. Sounds like you are in good hands with the treatment options available. I know someone having Immunotherapy for oesophageal cancer and it is working well for them x

@Chocolateismyfavourite Im so sorry to hear your news its really fucked up. I hope you get the good stuff. They do say immunotherapy is wonderful and my oncologist tried his hardest to get me on it I could still cry thinking about it. Sadly as there is no label for my cancer no one would authorise it. Im still hopeful. How are you feeling in yourself?

Ive just been on to an American friend whos mate has stage 3 Ovarian the chemo pills are $33,000 dollars apiece and if she gets on a trial it will be out of state so the insurance wont pay out😮 i know lucky isnt the right word for it but we are to be here with our NHS arent we? I know I work for it and slag it off with everyone else but I can not fault it from the way Ive been treated.

BTW are you all having your booster, is it a nobrainer? I hate the thought of having yet another different one. Can you have it during chemo or do you wait?

@EachandEveryone I am about to have my seventh dose of vaccine. I’m on chemo till September so I might as well have it now and get another one in the autumn. It may not do much but better than nothing. I’ve had no side effects to any of them.

@FangedFrisbee those are great wounds, they will hardly show once they heal. I’m so glad you have got amitriptyline. I can get away with 5mg and don’t feel too dopey on that, but I quite like being knocked out by 10mg.

Going to do a 15 minute micro-gardening session now before it gets dark. Little and often is the only way.
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That’s great that you’re out of the real danger zone @PollyThePixie - mine is lowish risk if they got the staging right, but I’m incompletely staged for two cancers because it didn’t turn out as they expected, so there’s always that doubt there. I had 1A bog standard ovarian, and I’m hoping that as my CA125 was 4 before chemo that they took it all away, but nothing is certain.

Sorry to hear your news @Chocolateismyfavourite I’ll join in the swearing and say that’s shit too, but hopefully you’ll get a wonder drug.

There’s some interesting findings about the role of the microbiome in immunotherapy responses too, another potential future line of attack (if that’s not too much battle-like language).

Honestly I dont know if its my brain or if its the way the letter is worded. I have werkly chemo for three weeks then a week off. So Monday was my last one and the next cycle one starts on the 15th. So when do I get the vaccine should I ring my nurse up? It was the September vaccine that alerted me to the cancer in the first place. As soon as I had it I reacted badly all my lymph nodes swollen. And the groin just kept on growing so I guess I have to thank it for that. Should i aim to have it on the 12th?

Just read on another thread that cancer is never cured, it always comes back…is that true does anyone know? I had lymph nodes removed four were cancerous, does that mean a return is inevitable? My surgeon and oncologist were happy they’d got it all, is this just never the case? I’ve had a surprising visceral reaction to reading this, I thought it’s return was really if not when, am I wrong?

@EachandEveryone thats what my oncologist advises but they are have different views.
@SierraSapphire I am getting obsessed with the role of the gut biome in cancer treatment. I had to agree to differ with the nurses and their neutropenic diet. There is evidence people get less side effects to radiotherapy if they have a diverse biome. Also cognitive decline from chemo and mental health trouble is less with a better biome. I refuse to give up my healthy diet without evidence. Most neutropenic sepsis is from skin bacteria not gut bugs. Chemotherapy won’t kill bacteria in the gut so why not nurture the gut biome with the good bacteria and not allow bad ones to take hold?
I am sure this will be a big research area in future.

No @Podgedodge that is not true. Plenty of people have successful treatment and never have cancer again. It’s like removing weeds from the garden. Get them all out and they don’t come back, but leave a root or seeds and they will creep back again. Chemo is the weed killer!

It's absolutely not true @Podgedodge , although it's obviously what we all fear.

Please ignore the following if the positivity irritates (which I can totally understand) -

My 89 year old Aunt had breast cancer 28 years ago, and she's still fighting fit and putting me to shame. Another elderly friend, now in her early 80's, went through surgery and chemo for BC about 16 years ago, and again is living a full life - still playing golf.

Sorry to hear your news @Chocolateismyfavourite .

I’ve recently done the Zoe health study @TopOfTheCliff that showed that I have a good balance of good to bad bugs but lower diversity. I already ate a wide range of plant foods but I’ve added what they said are my personal gut boosters and more fermented stuff. It’s fascinating.

Thank yo @TopOfTheCliff and @ajandjjmum , That was the message I took after my treatment,but some posters seemed so sure, but maybe I misread or misunderstood. Always a possibility with my brain.
I’ll not go back and re read, just stick to reading anything cancer related here. Sorry for the wobble, hope I’ve not triggered anyone.❤️

And meant to say @Chocolateismyfavourite , that is the worst news. Sending love and light, which I know sounds really hollow in the circumstances.x

Ooh @SierraSapphire I nearly signed up to Zoe but the waiting list was really long. Perhaps I’ll take another look. I am already into kefir and kombucha and kimchi and have an organic allotment.

I’m finding the gut biome stuff really interesting too, particularly the link between gut and mental health. A lot of it makes so much sense to me. A friend suggested a couple of podcast episodes on it and I’ve been so interested since. Also mmmmmm kimchi

@Podgedodge there is a blood test called Travera i believe that can tell you if you still have circulating tumor cells, although its very new and has challenges as there is no protocol for people who do come up with measurable results as, effectively, they are waiting to metastasize.

@Chocolateismyfavourite I am stage IV and always have been since diagnosis 3.5 years ago (breast, bone mets). I don't remember which yours was, though, was it breast or a different gynae cancer?

I'm not going to sugar coat this, it sucks and coming to terms with the diagnosis will take time, took me a good six months and I still swing to rage from time to time. I've had good times and bad patches, but I'm still here, learned a lot, live somewhat normally, and deal with shit as it comes. Don't borrow trouble, don't worry about the future, and enjoy every day, even the smallest things. Cry when you need to, feel sorry for yourself for a bit when needed then pick yourself up again and put the next foot forward then the next. Get a therapist (i can recommend one), you WILL be angry because none of this is fair.

Ok I scrolled back..

@Chocolateismyfavourite are they doing any sort of genetics testing on you for mutations, or a blood biopsy? And did they do/will they be doing any sort of biopsy on the liver tumors? I'm hormone positive so don't know the ins and outs of TN, but the new chemo is Trodelvy, though I think you have to fail a first mets treatment line before starting that, so keytruda and something else.

Did you have any low HER2+ positivity at all with your first tumor, like 1+ or 2+ on the IHC test? That would open up Enhertu as well.

@Chocolateismyfavourite I'm so sorry to read your update, that is so unfair. I have OC (stage 3c) so am not familiar with the treatment you've been offered but I'm thinking of you and sending love Xxx.