Thread #7, living with incurable cancer. Taking ALL the drugs and remembering our lovely friends

[sellotapechicken]

The other thread was full! I am waiting for the oncology assessment unit to decide what to do with me tonight. I keep spiking temps but it goes after paracetamol so they can’t decide if it’s a reaction to immunotherapy or not..

Hoping this works!

Sorry to hear about your new symptoms @SewingBees. Let us know how your get on with your scans…. Im Glad to hear you age them! When are they booked for? X

Ivercare which kills parasites in horses??

Oh goody the ivermectin people have found this thread. If horse wormer killed cancer mate we’d be snorting it like crack and I’m pretty sure the American pharmaceutical industry wouldnt let it be sold in tractor supply for $22.99. As soon as Tractor Supply start selling it for $1200 per gram I’ll give it a go..

Another lurker here. All quiet on the cancer front right now. Stable scan in November, and the next one isn't till May...

BUT! I came here to rant. I get a few insurance type benefits through my work. Usually, you just need to tick a few boxes and all is fine. For some reason this year they sent me a huuuuuge medical form to fill in for the income protection policy. So I spent over two hours detailing my medical history, and somewhere between breast cancer and bone cancer and residual tumour burden, I started to spiral for the first time in months. And now what - will they turn me down? This is supposed to be an employment benefit for all employees, so can they refuse to give it to me? Wouldn't that basically amount to discrimination?

sigh

I don't need an answer to this. Just wanted to rant in a safe space.

Sending love to all of you. xxx

That’s so frustrating!!

How is everyone ? We’re currently on a magical mystery tour of Newcastle, York, Leeds and North Yorkshire. It’s fun :) it’s also bloody tiring but it’s so nice to spend time with DH and reconnect

I Hope you’re all doing ok.

Ugh. Still shit here. Had my 4th blood transfusion yesterday, platelets now critically low.

Just seen my oncologist. Still no answers, the head CT showed a little bit of suspect area in the left frontal lobe but could be just bleeding due to the low platelets. Nothing linked to the hypoglossal nerve (which would cause the tongue issues) but it wasn't specifically flagged for the radiology team doing the CT and write up which is frustrating.

I'm being sent for a head MRI and a bone marrow biopsy, both will likely be a couple of weeks wait for the appointment and then more time for the write up.

I discussed treatment options. If the bone marrow issue is due to cancer then I'll likely have an 18 week course of IV chemo (paclitaxel, bye bye hair). If there are any head/brain tumours then it would be most likely targeted radiotherapy. But it's all very uncertain at the moment as to whether the two things are linked or completely separate. My oncologist says what I'm experiencing is quite unusual so he's not being drawn on what's likely to happen treatment wise until he has more info.

I've been prescribed steroids for a fortnight to help with the headaches in case they're being caused by inflammation. I had them before when I had IV chemo and they're horrible, cause a racing brain in the middle of the night and so on. I can also up the morphine to deal with the pain, so I might try that first.

Feeling very sorry for myself but trying to look on the bright side - the wait for further tests and write ups means I should still be able to take my daughter on our planned trip to London in May half term, and then start whatever treatment I need after that.

Sorry @SewingBees that sounds a bit crap… until
you get results and scan dates etc! Hopefully you’ll get them through soon.

you sound similar to me with symptoms etc.
I’ve had brain scans galore and radiotherapy. so far so good
I’ve just started taken Avastin which helps with brain swelling. Something to keep in the bag if you mri brain scan shows something.
steroids are the devil. Bloody hate them. On them at the moment too 😭
always here to chat if needed xx

@BetweenAppointments can you remind me what type of cancer you have? I can't remember.

@SewingBees breast cancer originally diagnosed a few years ago ER+ PR4 HER2- then brain mets last year x

@SewingBees sorry to hear you have had a rough time lately. Waiting for scans/tests is always shit-nerve wracking. I do hope there is a non cancerous explanation for it all, although my mind would be racing as well. In my mind, everything is down to the cancer bastard.

Steroids are work of the devil: tiny, powdery little shits that won’t go down my throat, starting to dissolve in my mouth instead (usually at the roof on my mouth), making me gag. As for the insomnia, moon face and an urge to eat everything in sight… Argh!

My consultant phoned me with scan results (instead of leaving me hanging on until 6th May), apparently the results are “very impressive”. Another 12 weeks added on to my life. Although it can change so flipping fast and go in the other direction. Still can’t plan anything for Summer holidays as my next scan/results are due around then.

@Enigma54, @EachandEveryone, how are you both doing? And anyone else?

Off to polish off a block of chocolate.

@balkanscotthats fantastic !

how is everyone doing?

@balkanscot well those scan results are bloody marvellous. Take the wins and enjoy chocolate, wine, whatever floats your boat! How is DS? Agree wholeheartedly about steroids. WTAF are they? I’m like a Duracell bunny on speed once they’ve entered my body. I eat anything and everything, race round the house like a lunatic ( scaring my two house bunnies in the process) and then collapse once they’ve worn off. Yeah, nice one steroids! How do you
feel with this chemo @balkanscot? Is it kind to you, side effect wise?

@EachandEveryone how are you? Have you managed to stay out of hospital? Have you restarted immunotherapy?

@SewingBeesdo you feel any better after the transfusions? What are the platelets doing? When is head MRI? You’ve alot going on having read your last update. It’s such a scary rollercoaster all of this.

I hope everyone else is getting on okay.
Would it be an idea to introduce ourselves again and say what type of cancer we all have?

I'm Enigma, stage 4 breast cancer to the lung. Leiomysarcoma to my pelvis. On permanent chemo for sarcoma , which is infused three weekly, via a pump. My “ hair” currently resembles a wire pan scrubber! Most mornings I can be mistaken for an electrocuted hedgehog! Any hair ideas, gratefully received 😊

Still in hospital I’ve had enough now. I look well and feel it just these stupid infections won’t go theyvevtried everything.

@EachandEveryone I’ve seen your other thread too. So sorry you are back in hospital. What is the plan going forward now? Sending you a hug 🥰

Hello all, sorry for those going through such difficult treatment and worries. I actually have some good news to post which I wasn't sure would be appropriate here, but maybe it can give some encouragement? I have stage 4 melanoma, been on immunotherapy since 2020. Yesterday had CT scan results, for the first time my consultant said there was no evidence of active cancer, and she would call it a 100% response to the immuno! Of course it doesn't mean it can't come back as could be circulating in the blood, but basically the existing dozen or so tumours have been zapped out of existence! I'm amazed that the treatment can be effective for so long, gradually working on the tumours. Apparently I am about the longest-serving melanoma patient at my hospital. Its hard to take it in but I certainly hope it reduces my anxiety and gives me a bit of hope that I might live for a good while longer (62 now). Here's hoping things improve for the rest of you, sending love.

o h that’s encouraging I’m hoping I can get back on the immunotherapy next week and don’t have any side effects .

@Enigma54 The joy was short lived as my brain entered “cancer results can flip in an instant, what if they have already done so” mode. Jesus wept! I have been battling with paronychia (red inflamed skin around my nails). I am petrified of potential infection, so have been slapping fucidic acid cream on.

@EachandEveryone Fingers crossed you can resume immunotherapy ASAP.

@livingwith That’s amazing! So pleased to hear this. I do think immunotherapy is the key to treating cancer successfully. I haven’t had any immunotherapy, just either bog standard chemo or targeted therapy (or a combo of both like Enhertu). I have responded to targeted therapies more successfully than standard kill-‘em-all chemo. Responded in my case means having no more than 2 good scans in a row. 🫣😢

Responded in my case, means no new growth for 12 weeks. The bar is LOW for leiomysarcoma 🙈😬 Huge sigh ( in
pain and frankly fucked off at having one of the cancers with the least treatment options).

@Enigma54 When is your next scan?

I find myself unable to plan anything beyond a week or two at the most. I can’t plan for this Summer, I just can’t. Which means I will be risking availability and price (no availability and if there is something still available, the price will be much higher). But I just can’t. I only put the date for my next Covid booster into the diary after my consultant had phoned me with the news. I got the Covid booster date in mid-March. But because I just couldn’t see myself being around in June after the awful start of the year being spent in hospital, I could not bear to put the date in the diary.

DS is yo-yoing emotionally, so I am currently trying to arrange a child psychologist to see him (privately as waiting lists too long on NHS).

I forgot about introduction: I am 53, with a 14-year old DS, widowed in 2023 (DH diagnosed with glioblastoma). I was first diagnosed with breast cancer in December 2016. Turns out I am BRCA2 carrier. Recurrence in July 2020 (still classed as primary). Stage 4 diagnosed in March 2023 - liver metastases. I have been through numerous lines of treatment and am now on the last available treatment on the NHS.

@balkanscot my scan is on May 29th. Chemo is my bloody birthay ( May 13th!) Urrghh It’s just all too much. I know exactly what you mean re: planning ahead. I’m the same. Haven’t been anywhere or done anything. Largely because I’m either too knackered or feel grim. It must be tough for DS, such a lot to cope with and so young. A child psychologists support might help. Are school supportive? I do hope so.

I forgot to say, metastic BC stable, but I’m on my final NHS treatment for leiomysarcoma.

Hi
My intro. Ive had stage 4 breast cancer for over 6 years. Liver, bones and now bone marrow. A load of treatments lines and a change in receptors (lost her2) and now ER8 and PR8 Her20. On ribcociclib and letrozole but have low platelets, low neuts and low Hb. Prob due to the marrow issue. Still on ribo and letro.
Generally I feel ok but tired and sometimes queasy. Work 15hrs a week which is ok at the moment. My team are all v highly strung and that can be amusing.
I enjoy reading, TV, history. Have eliminated a few people from my life due to their strange behvaiour.
Good to have this thread

@Middleageddreameresawsss I didn't want your post to be ignored. This thread has gone a little quiet recently. For me it's because I'm absolutely sick of thinking and talking about cancer.

My cancer has spread to my brain and I'm waiting to hear about a treatment plan. Probably whole head radiotherapy followed by oral chemo (capecitabine), but some of my symptoms can't be explained by the MRI scan I've had so I'm being discussed at the next neuro-oncological MDT and may then have further tests before my treatment plan is finalised. I'm very daunted by the thought of having my entire brain zapped by radiation, and know nothing about capecitabine.

I'm having to come to terms rapidly with not being allowed to drive and the probability that I won't be going back to work. It's very tough at the moment.

@Middleageddreameresawsss Sorry, I meant to add into my post that you're very welcome on the thread, even though none of us wish to be here.