Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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Contact your local citizens advise @Peppapigboresme I believe there are some benefits you can claim although it doesn't really amount to much...

There are some benefits can you ring someone from MacMillan up they will guide you. Also do one of those benefit calculators online. You should beable to ge5 some kind of holiday from your mortgage. Im lucky fir working in the nhs. I couldnt even contemplate being a nurse during all of this.

I dont know much about the suntypes but my oncologist told me that he wanted me on enhertu as it treats her2+++ her2++ her2 + so already her2 has 3 sub sub types. He said these are called her2 low patients and there are many more than previously thought. By sheer logic I am probably a mix due to the amount of cancer I have/had. Her2 low patients stage 4 are getting enhertu as the 1st or 2nd line treatment in the US and Europe has approved it for Her2 low. The UK hasnt yet im also ER PR positive but dont need hormones as the chemo bystander effect should deal with those receptors from the enhertu. I dont even know what sort of drug enhertu is as its not chemo standard and its not immunotherapy either. Its called a warhead chemo.

I must admit it wasn't until reading this thread that I realised how complex breast cancer actually is and how it covers such a vast array of subtypes all with different treatment regimens. Hearing all that upon diagnosis (or researching when expecting a diagnosis) must absolutely blow your mind.

Hopefully my last radiotherapy was done with today thank god! I'm getting very tattered with it all although nothing to complain about too much side effects wise. They've got a plan for the blood thinners/brachytherapy so the only barrier to brachytherapy will be if my MRI shows it's not in the right place to reach it. Keeping everything crossed that it is as it gives me the best chance of full cure and lower risk of reoccurance.

If not it's ten more radiotherapy sessions and I will just cry. And then pick myself up and tell myself that it's only another two weeks in reality. I just want this to be over with now. God knows how people who struggle worse through treatment and have much longer treatments do it, I am full of admiration.

@Greyandrare123 Its incredible how fast the drugs and treatment protocols are evolving - even the accepted first line of palbo (aka Ibrance) is starting to be shunned in favor of the better outcome profiles of Kisqali and Verzenio when not even 2 years ago Ibrance was gold standard. Not that it sucks, but there is better for the price. Ive seen ladies in the US getting that new test at treatment change (you probably have to if you are on the BCO forum) the V one - tells you what is likely to work on any given tumour profile at a given time and mutational changes, rather than throwing a dart at the chemo list. And with AI/ML and other advanced computing resources on the horizon applied to hundreds of thousands of molecular properties and combinations, Im starting to wonder if maybe I should restart retirement savings.

Be nice if they could find something to help sort fatigue though!

@SummerCycling absolutely agree re: disclaimers.

Sorry everyone, got a bit sidetracked on the BC side.

@ClashCityRocker - really hope you get your brachytherapy. I know 10 extra days RT isn't much objectively, but from the inside these small extras we weren't expecting can seem huge. I was expecting to finish RT on a Friday, but it ended up running on to the Monday because of the bank holidays and I was soooo pissed off about that.

Sorry about all the BC chat - I hope it doesn't put off non BC people I know it can suck the oxygen sometimes.

@Peppapigboresme We've never needed it, but our mortgage allowed holidays provided you could show it was for a specific reason, IIRC. Definitely worth talking to them if you do run out of sick pay. Obviously it depends what you do, and how you react, but some people do manage to keep working through chemo. I worked throughout, but I'm freelance and wfh, and could be v flexible, and probably only did about 2 normal days a week on average over the 5 months - very little immediately after each treatment, more in weeks 2 and 3. One of my DDs' teachers has been teaching during chemo and has just reduced her hours and focused on her exam years, but obviously that's not for everyone. I believe cancer is covered by the equality act so employers have to consider reasonable adjustments?

@Atreus

And whilst I just responded 'how lovely', I actually just wanted to tell him he could stick his photos up his arse.

My granny used to recommend shoving things up sideways.

@Peppapigboresme have you rung the mortgage company to ask if you can have a payment holiday while you are on treatment? It would be a huge weight off your mind.
I’ve reached a steady state of low grade exhaustion I think after 8 weeks on Cape. I’m operating on around 20–30 percent battery power and have to stop and rest frequently but if I prioritise I can do most things I want to do. Fingers are peeling and I still feel sick but I can keep going like this if it doesn’t alter.

There is a bit of me that is baffled by why people I know just get a quick operation and a blast of radiotherapy and are done but shellshocked, while I am on an interminable conveyor belt of treatment that has gone on for 36 months and I didn’t even have an advanced cancer. But that’s just bad luck I suppose. No doubt there will be more twists and turns ahead.

Fingers crossed for you @ClashCityRocker when will you know the plan?

sending strength to you all, from a weary Top

Hi all, just checking in. Have found all of your BC chat fascinating - I don’t have BC myself but must admit I had no idea there were so many different types. @TopOfTheCliff sorry to hear you’re so tired with the Cape and yes I think I know what you mean about the different treatments. I think I have almost felt a bit jealous of people with other cancers getting ‘easier’ treatments is that weird?! I am sure they aren’t easy at all and I am being really unreasonable tbh.

Hey lovely ladies, can I join you please?

I posted once, just over a year ago when I was newly diagnosed with IDC BC ( grade 3) but for various reasons ran away from the thread. I had 6 months of hormone therapy to shrink my tumour, a WLE with 2 lymph nodes removed ( 1 ok, 1 not) a bit of back and forth about chemo (decided not) and then weeks of radiotherapy.

All has been good until a couple of weeks ago when I was diagnosed with appendicitis. Had it out but yesterday had a call to come in for an urgent appointment today with Colorectal surgeon. Appendix was biopsied and it turns out was cancerous. Apparently very rare (1-2 per million) and very aggressive. It will have already spread to my colon, they found deposits in my abdominal cavity and they are doing CT and MRI scans to looks at ovaries, liver and lungs.

I'm 53 I have a lovely husband and my kids are 14 and 17. Not telling them until we have full info. I lost my mum to cancer when she was 52 and I was 20 so I know how shit it will be for them.

Welcome Twig and so sorry to hear your news. Thinking of you and hope they can find a good treatment plan.

I don’t mind at all reading about the breast cancer experiences and it certainly reflects my personal situation. Mine is a genetic cancer so other people in my family have had bowel cancer but apart from that almost everyone else I know has had breast cancer - of all different grades and types. I am sure I have generalised in that past putting everyone in the same basket but I hope I know better now! It annoys the crap out of me when people want to tell me about others who’ve had bowel cancer, or even any kind of cancer, as if their experience will mirror mine!

Welcome @TwigTheWonderKid but I’m sorry you are here. I have kids similar ages - mine are 15 and almost 17. They had some big wobbles early on after my diagnosis but we are 4 months in now and they’re doing ok. We let their schools know the situation (DH called as I couldn’t face it) and they’ve been very understanding and supportive. They get a bit of extra leeway with deadlines and when they’re late to school and the school counsellor checks in regularly. It helps.

@bringonyourwreckingball I made it to Bruce and wasn't he EPIC!!!!

Knackered now, only just got home 😆

Hope you enjoyed it as much as we did!

@TwigTheWonderKid so sorry to hear about your diagnosis. It must be very hard to get your head around the unfairness of having something so rare. Hoping there are decent treatment options.

@TopOfTheCliff. The tiredness must be so frustrating. Is there something you’ve always meant to watch or read you can work through when your energy is low? Or are you too tired even for that??

bruce does look epic. Glad you made it!

@AllotmentTime - totally amazing, such a great atmosphere and I think I’ve found my new summer headgear whilst my hair grows back

@TopOfTheCliff sorry to hear you're struggling with the tiredness and having to readjust again. It sucks, it really takes so much.

I find the breast cancer chat really interesting and enlightening - it's actually quite surprising given (I think) it's the most common form of cancer for women that all the different types don't seem to be common knowledge at all.

I was chatting to DP about all the different regimes and comparing to my own. It's been very very intense and a real emotional headfuck and I am exhausted, but I'm so grateful that potentially it could be all over and done with in a seven week window - and with a bit of luck and a fair wind I'm through the toughest slog of it. I am very grateful that my treatment is a short one seeing how long some of you ladies have to go through. Should hear about brachy tomorrow but even if I have to do the extra rads it should be only two weeks and then the long wait for the post treatment scan.

Also understand treatment envy - I must admit in my unkind moments I have rolled my eyes about people getting very upset about having to have a leitz or cone procedure to remove a few dodgy cells but it's all relative and hearing you have cancer is always hard.

@TopOfTheCliff sorry to see you're so tired, it's so frustrating wanting to do things but not being up to it.

@AllotmentTime very jealous right now of your Bruce gig! We have tickets booked for a small gig in September (Lovejoy) which I'm half looking forward to & half worrying about - it's a local, standing only, venue.

@TwigTheWonderKid I hope there are some decent treatments available to you.

I've missed loads of you I'm sure 🙈 Brain seems to forget things lately by the time I get to the box to type in, I forget what was said upthread and on previous pages 🙄

Anyway, I hope everyone is doing as well as can be this morning 💐

I had my fifth chemo yesterday & apart from a gurgly, windy, gut, which I expected, have no other side effects I've noticed. I did notice my right foot tingling a bit the other night & mentioned it yesterday but tbh it could just have been the weird way I was laid in bed rather than anything else.

I have just combed out what looked like on some people would be a full head of hair 🤯 It's definitely thinning faster now but still looks ok clipped up for the moment. Had a very strange moment last night when I thought I actually felt a clump detach from my head! Did/has anyone else had that?

I've been googling & think I might try the Biotin, Nioxin System 2 & head massage to encourage it to grow back as speedily as possible. I'm feeling really encouraged (maybe daftly & I'm in for disappointment) by two of the ladies who have their chemo at the same time as me - one has a full on buzz cut grown back over 4 weeks & the other has had tufts of hair about 1cm long grow back, all over her head, in the week since we last spoke! Another, who I've never met before, did say hers was slowly growing too!

I still picked up my wig vouchers though - just in case. I actually found the lady in the orthotics dept a bit rude (that's the wrong word I think). I handed her my letters to exchange, she asked if I wanted one or two & asked me to pay without even looking at my exemption cert. Then looked surprised when I said "erm, no, I have an exemption certificate". I half wanted to say that just because I look well presented (in public at least 🤣) doesn't mean I have a spare £160 lying around & she shouldn't have assumed...I was well behaved & moaned to dd1 instead.

I'll now have dd1's company for the summer. She is keen to accompany me to appointments with my consultants - funnily enough they're really close to a park & museum we like to visit in summer - there's a pub that serves food two mins down the road, good chippy and panini shop round the corner, burger van and ice cream van on the park, and coffee shop in the museum 🤣. She also has designs on several crafty projects for us 🙈

Crikey that was an epic, rambly post!

@TwigTheWonderKid Im sorry you have this to deal with and endure. Wishing you a plan can comes to you swiftly.

@TopOfTheCliff fatigue is one of the worst things as it limits everything. Resting doesnt help. Being active doesnt help. Its like this weird fog that hangs over your head. The other day I was in Boots and when I got there I was ok then I suddenly lost all motivation and was fighting to keep my eyes open and bizarrely later on the same day the whole fatigue had gone and I went out for the evening!

The oncologist gave me 3 tips for wellness alongside the chemo. He said keep hydrated to support your immune system. Take vit D supplements 800units a day to support your immune system. Drink a glass of skimmed milk a day to keep potassium in check as chemo always dips potassium.

I follow this advice to the letter but I find keeping hydrated tricky so I use tea and coffee for that

So..different type of cancer —light relief?

I have primary peritoneal stage 4 high grade serous cancer, and live in North Scotland.
Service seems fine, but not specialised. I’m 54, was considered healthy till this all started. Am currently having chemo on NHS.

A friend is pressing me to approach Basingstoke as there’s a centre there that specialises in care of peritoneal cancer.

I don’t know if this is possible? Does anyone have experience of being referred elsewhere- how does it work? Not even sure if the Scotland/ England NHS would matter.

No problem if no one has advice - but thought you were the people to ask!

Thanks folks for the support. I was telling my MIL about the spoon theory today. It’s used in chronic fatigue syndrome. On a normal day you might have ten spoons. Every activity uses up some spoons until you run out. You have to decide how to spend the spoons. My normal is twenty spoons but currently I have about 3. You can borrow the odd spoon from tomorrow but you have to pay it back. I am trying to use my spoons wisely and not waste them on boring stuff.

@TwigTheWonderKid welcome to the thread. I totally understand the headfuck of a second cancer that is very rare, they have never seen this before, you are the wrong age and demographic for it, but hey ho that is how it is and you have to deal with it. You are welcome to a free session in our virtual rage room if smashing some crockery would help. I hope they come up with a plan for you soon.

Thanks to everyone for the welcome. I'm very calm at the moment, no "why me?" feelings. Sometimes life is just accidentally shit, isn't it? I'm sure I'll be indulging in a pity party at some point but right now just trying to enjoy what I have and put one foot in front of the other.

@RedRosesPinkLilies I'm in SW London and have been told I will be referred to Basingstoke for surgery if it's thought I'd be a suitable candidate after all my scan and blood results come back. Apparently there is also a hospital further north with similar expertise but I'm afraid I don't know which one. Would definitely be worth asking your consultant though.

@TwigTheWonderKid Thank you x

I'm feeling very sorry for myself tonight; my hair's literally showered right out of my head in pretty much one go 😢 . There's a little bit left so I'll get the girls dad to take it off for me shortly.

@lucysmam my hair has started falling out tonight...just not on my head. I'm seeing parts of my body that I haven't seen for 40 years! This evening I'm seeing the humour in the situation but I know that the rest of my hair is likely to follow across the next couple of days and then like you, I'll also be feeling very sorry for myself. Up until now, I've been able to look in the mirror and see normality. Soon every time I see myself there will be a physical reminder that I have cancer and I am not looking forward to this one little bit. Sending you a hug.

Sending love LucysMum and Atreus It very hard when you hair goes. This time last year I was mid chemo and went to the May Bumps with a hat. Just went again today and didn't need a hat. I won't say its the greatest hairstyle ever and it'll be another maybe 6 months before the length is more that I want but its so much better than last year. A year probably seems an eternity mid chemo but the chemo does end and the hair does come back.

The Springsteen concert looks great fun. Have my DIEP appointment with surgeon to discuss again on Monday. And might finally have a school for DS on Tuesday we are looking round, they are suggesting fastracking him to A levels and skipping GCSEs but we will see.