Thread #6, living with incurable cancer, taking ALL the drugs, and remembering our fallen comrades

[SewingBees]

New thread!

@saveforthatits basically a genetic mutation and it means you might have an option for more targeted therapy after the ipi. X

I'll ask about it when I see the oncologist next week.

Definitely worth asking! Have you started the new immunotherapy yet? Did you have many side effects from Pembro? (I’m assuming you were offered that first)? I had a few side effects from the combined one, it hit me like a ton of bricks if I’m totally honest!! Completely killed my thyroid but I had that removed and it’s been ok replacing it with medication. Feel free to message me btw

I had tumours in my lung & liver that were not an option to have removed as they were so big. They stuck me on the combined immunotherapy and I had a really good response to it, it made all the side effects worth it. I
currently only have 1 tumour in my lung now instead of 6 and it’s not grown for a long time so they think it might be inflammation instead or cancer now.

I really hope it works for you xx

Thank you. Not really any side effects from pembro. I have had two rounds of ipi and have itchy rash and fatigue. I'm glad you had a good result.

@Sausagesforever how did chemo go? How are you feeling today? Sending love xx

I use curaleaf. I originally had the sweeties (can’t type the g word on mn without being removed) then I used the oil and I made some cakes with it which were lovely but I needed a lot of it to help? . I’ve moved to the vape now because the sickness I’ve had has been absolutely crippling. I really have been struggling but it’s helped a lot.

You sign up, and then pay for a zoom consultation which is £50 and then on the back of that they will say what they think you need and then prescribe that. The sweets and oil are very expensive but the flowers which you vape are very affordable. I 100% would recommend it

Is the vape any good for first time users? What do you do, puff through the day? Just take as and when?

Hi. So first chemo in the bag, or the port as it were. I was pretty ill beforehand and my husband wasn’t sure if I should be going ahead but he was saying that to me not to the nurses so I had to call a nurse in & say “say to her what you just said to me” so they gave me a good clinical check and decided to go ahead. But it meant I felt pretty dreadful day 1 -although pre-meds & steroids helped a lot. So far I’m okay. Just feeling a bit floopy. Managed a wee walk yesterday and will do the same again today.
thanks for the curaleaf recommendation. A vape sounds like a good idea.
hope everyone is coping best they can.

Yeah it’s actually really really good. You get cartridges and a pen. The battery is a bit shit but you can get extras. If you have the prescription you can actually be allowed to use it as and when you need even in places they usually won’t let you use a vape like Wembley.

They also have vaporisers which heats up the flowers without smoking them as that’s illegal still. The flower option is the most cost effective because you can use as much or little as you need, and when you’re at home no one can tell you not to smoke it really..

Sounds like the vape could be the way forward? The sweets are way over my budget ( although very tasty!) I’ve never vaped in my life ( bound to get it wrong!) 🙈

@SewingBees how are you feeling re: the forthcoming scan? I hope the results are reported quickly, for peace of mind.

@Sausagesforever hope you aren’t feeling too awful. You never quite know which way chemo is going to go. Prepare for the worst and anything else is a bonus I suppose. Sending chemo solidarity and support ❤️

@EachandEveryone are you still in hospital?

I think the vape is better value for money really when you think about it. You’re not paying for the process of making the sweets and they are quite low in the useful thing you need! When do you start trabectedin? X

Thanks @sellotapechicken you have a point. The sugar content is high aswell. Will assess finances and go for the flower and vape.

Ive had 1 Trabectedin so far, resulting in low neuts and a delay in number 2 🙈

How are things your end? X

P.s I seem to have developed an addiction to Frazzles. I mean I wouldn’t mind, but I don’t even like frazzles that much. I saw DP with one of my 6 small bags and nearly commit murder! 🙈🤒

I’m doing ok :) just absolutely frazzled (no pun intended 🤪) I’m so tired and I’m bored of always being in bed! Trabectedin was what got my sarcoma to fuck off in the trial so I’m really hoping it works for you!!

I want to go on holiday and I want to feel like a 34 year old not an old lady!! I got asked the other day if I was certain I wasn’t pregnant.. yes as I had a hysterectomy.. 🙄

What treatment are you on now? Yes I would like a holiday too. My world is shrivelling to nothing 🤒

None for sarcoma as it’s all fucked off / one small bit in my lung that they don’t know if it’s melanoma or sarcoma or just a bit of scar / inflammation tissue, and it’s in the wrong place to biopsy I’d have to have mega surgery for it involving breaking ribs etc. it’s also not grown in 4 months so fine!

Im on Nivolumab for the melanoma and will be until
it stops working. I’m no longer a candidate for the big scary surgery because I don’t have enough cancer (!) and the haemorrhage I had in October is too much of a risk of repeating. So it’s frustrating but I’m trying to come to terms with my ‘new normal’

Yes, the new “normal”‘whatever that is! It’s all an absolute headache isn’t it? Are you back at work now? That surgery did sound MEGA scary tbh 😳

I am back in work, very minimal hours at the moment because I insisted on a 6 month phased return from Feb this year. I’ve been off since my op and I’ve not felt guilty about it, I just feel sad that it took my union getting involved for me to get the return to work I needed. I’ll be back working full time hopefully by September.

I am doing a lot of clinics which I dont actually mind doing, I’m hoping I can see new patients and then see them all the way to discharge and do their surgery but I’m also putting myself first for the first time in a long time!

Im beyond exhausted after a day in work and that’s mainly dictating letters and maybe doing half a clinic. It’s just not what im used to! It’s weird!

I realised I was pretending everything was fine on my social media when it was anything but fine! So I decided to be honest and talk about it. Ive also been prescribed some antidepressants and a mood stabiliser which is helping me sleep through the steroid insomnia and has stopped the random crying outbursts I had!

Yeah the operation is very very drastic and im actually so glad im not having it!!

@EachandEveryonejust seen your other thread are you ok?

Just a quick check in. Eribulin landed me in hospital for 5 full weeks (half of January and half of February). It almost finished me off - infection, skin rash (due to my liver that went completely bonkers), jaundiced (thanks, liver), the worst mucositis I have ever had (couldn’t eat for 10 days apart from drinking iced water and sipping on disgusting dietitian-prescribed protein drinks. Lost about 10 kg, hair fell off (thanks, Eribulin), was hooked up to a morphine syringe driver, had2 cannulas in at one point and connected to 2 IV machines, the joys! I almost asked to be taken into hospice my mucositis was that bad and painful.

My oncologist persuaded me to hop onto the last chance saloon: weekly (or in my case, 2 weeks on, 1 week off) Epirubicin. I was very hesitant as I had it in the primary context 5 years ago and it was the worst side effects ever. But in the secondary setting it is given in a much lower dose and is tolerable.

i also had a new port fitted. Because my previous port wound on the right hand side still hasn’t healed 100% they decided to fit it on the left which is apparently much trickier. I hated every minute of it. Nobody told me I needed to fast for sedation, so I only had two feeble Fentanyl shots.

i have had 2 Epirubicin sessions so far, no noticeable side effects. Mouth/tongue are still tender, I am on what seems to be about a million medications (mostly for skin infection), I am learning how to walk properly again (5 weeks in hospital wreaks havoc with one’s leg muscles).

And even if Epirubicin works, you only get a certain amount of sessions (18 I think). Then what?????

The whole experience has shaken me to the core, especially mentally. I still have to process it all. I can’t believe I am at the end of the line, looking into the abyss. I feel well, though, no pain anywhere else, jaundice has gone, I look like Gollum (resisted temptation to shave off tufts of my hair, so that my wig can have some sort of traction when I put it on).

I so wanted to live until 08/27 which is the expiry date of my debit card. Looks unlikely.

@balkanscot we are both going to live until 08/27!! I’m at the “ then what” point too. We keep going. Mucositis is the fucking work of the fucking devil. It hospitalised me too and I was forced onto those revolting high calorie thick protein drinks.

The whole experience is utter utter shit. Five weeks in hospital, you poor thing.How is DS? Are the in-laws staying?

18 sessions of epirubicin? @GoldenDog1was meant to be on a certain number of paclitaxol sessions. She fought for more and her request was granted. Those additional infusions gave her more time. If you can tolerate this drug, advocate for more.

Hoping and praying that mucositis stay’s away way, your mouth heals, your mobility improves and Epirubicin works.

@Enigma54 DS was all over the place, partly looked after the in-laws, partly by his auntie & uncle (who will be his legal guardians). I hadn’t told him by that point what was happening and that if Epirubicin doesn’t work, that’s it. I finally told him last week as he was more frightened not knowing. I still don’t think he has grasped the fact that I have more or less ran out of options but as least he knows the truth. However ugly it is.

My mouth and tongue literally felt like they were Nitromorsed/scraped to the bone. It felt like I had burns blisters. At one point I had also lost my voice. Awful. Couldn’t eat. The smell of hospital food trays for other patients drove me bonkers as I had the appetite, I just couldn’t put anything in my mouth. The food there felt to me like some delicious Michelin-starred stuff, that’s how bad it was (liver & bacon pie, anyone?). Mucositis is shit of the shits, indeed. So sorry you had to experience it as well.

i hope that by 07/28 we’ll still both be posting here. We will. 💪. I blubbed most of the way through the Olympics closing ceremony this evening as I realised this will be the last Winter Olympics that I would be able to watch.

I have a good feeling about this last-chance-saloon Epirubicin. Which I didn’t have with Carboplatin. And I didn’t have a chance to form an opinion about Eribulin. Apparently, even though Eribulin put me in hospital and my liver was all over the place, my oncologist said it had kind of started doing its job after just 1 session. 🤷‍♀️

My CT scan is on 1st April. The date is making me laugh. If somehow I do manage to get to 18 sessions, I will push for more. My 2 weeks on starts again this Wednesday. Need to think how to get to the hospital which is not too far away (30 minutes walk) but at the moment I cannot walk that far. There is a bus but I am worried how I will handle the steps onto/and off the bus. I still don’t feel confident enough to start driving again.

i have to put on some of the weight I have lost but it is really difficult because I can’t eat anything that has got tomatoes as its base (like pasta & tomato sauce, bolognaise, cottage pie), I am sick of damn scrambled eggs & cheese tor breakfast (feeble attempt at keeping up with my protein intake). Can’t eat anything citrusy, acidic, crunchy, spicy, umami. Basically anything that tastes decent. Nothing salty either. I bought the most delicious focaccia sandwich today with mustard, ham & cheese, had to abandon it half way through as it was burning my mouth/rongue. Same with halloumi salad yesterday. I can’t face any more bland shop bought soups and I have totally lost my cooking mojo. But I am also at the same time starving, longing for proper food with taste. 😩 Off to shovel some peanut butter into me - it also makes my tongue burn but I have to think of the protein/fats.

Yes I’m here, day 8 in hospital on. On the elderly ward I’m the youngest here. Had a terrible infection that none of my district nurses did anything about I was in itu for about if another hospital waited nine hours for an ambulance to get me back the system sucks, I can’t complain now though, I’m scared about my keg iits massive I will never do the stairs in my flat, I hope they sort it soon

Wow chemo fatigue - that kicks your butt doesn’t it. I’m so out of it.

@EachandEveryone Will OT and physio get involved? OT (occupational therapists) were very on the ball when I was in hospital, I even did a trial “cooking” in their purpose-built kitchen. Well, cooking involved making toast, a cup of coffee and opening a tin of soup. Make sure you get all the help & assistance from them and physio that is available.

Is there an actual plan how to deal with your leg? Are you still on antibiotics? Hopefully it will be arranged that you get the right equipment for living in the flat and assistance with stairs. I don’t know in terms of equipment what they can offer or would it be a question of someone visiting the flat who will be designed to help you and can also help you with stairs? I have 28 stairs to my 1st floor flat but my legs have been wrecked by lying in bed for 5 weeks. Muscles totally weakened. Even now when I walk outside I feel it is not my usual stride. Going upstairs seems to feel like climbing Mount Everest.

I am due to have my 3rd Epirubicin session on Wednesday. Bloods tomorrow, hopefully everything is behaving itself well enough. First one as an outpatient. First 2 were while I was still in hospital - they just deliver everything to your bed. My oncologist said she will slightly raise the dose, I am petrified, still haunted by the full whack Epirubicin from 5 years ago. I only get one tablet beforehand (anti sickness) and no steroids.

@Sausagesforever chemo is a fatigue beast. I was reminiscing the other day how I looked at my best while I was on Olaparib tablets and not on IV chemo. Sooooooo much easier and I looked so well. I also had hair.