Page 8 | Cancer Support Thread 87 - everyone here is so supportive.

SummerCycling · 30/05/2023 21:13

RedRosesPinkLilies · 30/05/2023 06:50

I’ve posted previously a little…
It’s been confirmed yesterday that I have
Primary Peritoneal Cancer - (High Grade Serous) Stage 4B . The oncologist did say it could also have originated in an ovary or a fallopian tube. It’s hard to tell.

My weight is stable and I feel and look well. I did have persistent abdominal distension, increased flatulence and pain in my scapula when I burped.

Oncologist has advised 3 treatments with carboplatin and paclitaxel. Then hopefully debulking surgery, followed by three more chemo cycles. Then maintenance therapy - depending on whatever they discover at pathology

I remember that someone else on the thread had Fallopian tube cancer, and was doing better than expected. Likewise with ovarian cancer.

So - now I’m a bit clearer I just wondered if anyone had had similar chemo or any advice about coping with this.

I know exercise is important - I need to be more consistent. I’ve had advice from friends about taking Turmeric or other supplements- does anyone do this?

Thank you x

Hi @RedRosesPinkLilies

I'm very sorry to hear your diagnosis, but it's indeed definitely the case that some people do much better than expected. My prognosis was changed from poor to good following chemo (different cancer to you, but I mean prognoses can and do change). I am stage 3 (c I think) HER2 in breast and lymph nodes.

I know two ladies who are stage 4, one bowel and one HER2 breast, and they are both now in full remission. I have no idea whether that is possible with peritoneal cancer, but until I met those two I thought stage 4 meant it wasn't possible anyway - but these days things are changing fast in cancer treatment.

I haven't been on carboplatin, but I have been on paclitaxel. I found it much, much easier to be on than the chemos I was on before that (EC chemo: Epirubicin and Cyclophosphamide). I had felt absolutely terrible on EC, but much more normal on paclitaxel. I'd say the only thing I found hard on taxanes (I had paclitaxel then abraxane) was the neuropathy, that I got badly but I know several others who didn't get that at all. I ate and drank normally, and apart from the neuropathy I got, I'd say it was really fine.

I would be cautious about supplements. My hospital recommended oily fish twice a week when on chemo, and no supplements without checking with them first. Of course my cancer is not connected to the digestive system, so I imagine guidance could vary depending on where in the body and also the type. For example, I think hormonal breast cancer patients (who form 90% of breast cancers) are probably advised to avoid oestrogenic food, but mine is not hormone sensitive so I was just told about the oily fish. Penny Brohn recommend rainbow fruit and veg every day ie lots of different coloured plants. They also recommend lots of protein for the white blood cells.

SummerCycling · 30/05/2023 21:16

RedRosesPinkLilies · 30/05/2023 18:21

@Lisdeflores
I just noticed your message - been at the hospital having my kidney function checked, and then my aunt was in the area and popped in.

Having got through yesterday and told our (nearly adult or young adult) children. I feel a bit better. I’m trying to see treatment as hope.

I absolutely know it’s not going to be easy - I just don’t know exactly in what way. But at least I’m edging forward to stopping this thing growing.

All the different bits of information are very helpful - means there’s less unknown - or when things go wrong I will feel less alone, that others have been through it too. X

@RedRosesPinkLilies

Could I possibly ask how they checked your kidney function?

My kidneys are checked each cycle using blood tests, but a recent MRI noted that I have mild fibrosis in both kidneys, so I am wondering how their function is tested maybe more thoroughly than just the blood.

Thanks x

Silkierabbit · 30/05/2023 22:55

LucysMam Re exercise for me its swimming and if get chance canoeing / rowing but during chemo I couldn't swim and was struggling to do much at all, had a week off a couple of times and then when on trips walking around puffins but nothing much. I sometimes did 10 min home aerobics videos for beginners. But I wouldn't worry about it during chemo, just getting through chemo is a lot in itself.

It does come back a couple of weeks after chemo I went away for a week and swam a few times, kayaked and surfed that week. I wouldn't worry about what others are doing, just do what works for you, it varies from some who are in bed all day to a few running marathons. A few days out are nice if you get chance and have the energy. I had a few breaks on pax due to neuropathy I also got it in arms legs, feet hands, face though did do whole course of 12 weeks though was at 90% at end. Hated it but does end.

RedRosesPinkLilies · 30/05/2023 23:03

@SummerCycling

it was a test in the Nuclear Imaging Dept. They injected some radioactive isotope and took bloods after 2,3 and 4 hours

i think it’s to test Glomerular Filtration- how our kidneys sieve our urine essentially. The aim is to decide the dose of chemo that my kidneys can cope with

If I can find out the correct name I’ll post again

JlL2013 · 30/05/2023 23:05

@ClashCityRocker that's crazy, but sometimes the bladder really doesn't play ball.

Glad your home now

RedRosesPinkLilies · 30/05/2023 23:06

@SummerCycling
i can’t see the name of the kidney test on Google - sorry

Thank you for advice on supplements x

FangedFrisbee · 31/05/2023 00:32

@Winterisalmostover I'm sorry it hurt so much and I really hope you get good biopsy results. I have melanoma and honestly it's so shite. I'm hoping that immunotherapy works it's magic. Tbh it's all too much to deal with right now,

FangedFrisbee · 31/05/2023 00:35

GayPareeee · 25/05/2023 09:53

Hello

Tentatively joining in but I'm still at the waiting for biopsy stage, recovering from a much bigger than planned WLE of melanoma and two other sites biopsied no results. < Waves at @FangedFrisbee as was on her thread >. @Atreus if you can get over to the Croydon side of Surrey my hairdresser works with the Marsden and has a separate hairdressing area out the back for women suffering hair loss or chemo. She fits and supplies hair pieces and wigs too.

Hi! Sorry I've been MiA on holiday before immunotherapy, I hope you're ok. I know it's such utter shit going through this x

FangedFrisbee · 31/05/2023 00:39

Hi all, sorry I've been a bit hit and miss, it feels a little bit hard to post because I have a different cancer to most others. I start immunotherapy on Monday and I am nervous but I'm also ready to do this, I know if I get a temp, flu like symptoms, diarrhoea and/ or vitiligo that it's all working the way it's meant to. I think the hardest bit about this whole diagnosis is The fact that I can't have a baby anymore because my cancer is one that can be passed through the placenta to a baby.

Icantfindanewname · 31/05/2023 07:45

@SummerCycling
I had surgery first (beginning of June) chemo next (mid July start) then radio (early Dec start). I also did school run while having radio (which was a logistical challenge as local hospital trust don't offer it so had to go further away, into Leeds). Not much option when husband is frontline NHS - though to be fair to his boss, they did put him somewhere else while my immune system was tanked, with it being mid pandemic!

Pins and needles started in the fingers of the hand the chemo had gone in and travelled up my arm. Bit of a surprise in the middle of the night! I'd had some non-painful tingling, but of all the treatments and surgeries, this is about all that's hurt, and boy did it hurt. Rolling around the bed in tears hurt. I still have the occasional tingling, but no pain since the amitriptyline.

My hair grew curly, which I embraced as I had needed a change of style (or indeed, a style) for years. Now it's straight again, almost down to my shoulders and my hairdresser has said to leave it for a while, now I'm no longer in danger of sporting a mullet! He was great, he cut a fringe into one of my wigs for free and got me in the salon first thing just after a deep clean and didn't book the other chairs out until I'd gone - and he wouldn't take payment. There are some very kind people out there.

I noticed you've mentioned exercise on another message. I signed up for the safefit clinical trial and they paired me with a PT in London who was brilliant (we used WhatsApp) as he has a qualification in cancer recovery training. He also does private sessions, if you are interested please message me and I will dig out his details. I still contact him periodically, usually when I get my next kickboxing belt!

dotty2 · 31/05/2023 10:01

@FangedFrisbee - wishing you all the best for your immunotherapy. I'm so sorry to hear that your diagnosis means you aren't able to have children. I wonder if it feels particularly tough on this thread, as many/most of us have children already so haven't had to face that issue? I'm not sure if it's something you would find helpful, but I dropped into a Maggies Centre a couple of weeks ago - there's one at the big hospital I had to go to for my radiotherapy. I was feeling low that day and needed a bit of space to calm myself down before the drive home. I just had a big vent at a lovely counsellor, but I noticed they have all kinds of support groups and might be able to signpost you? But I know not everyone wants to talk - you can have an extra session in our virtual rage room if that's more your thing.

TopOfTheCliff · 31/05/2023 12:00

@lucysmam the subject of exercise is a good one. We all know that we need to keep moving but the restraints of PICC lines and fatigue and reduced immunity constrain what we can do during treatment. During my first round of FEC T I fell and dislocated my ankle so I was trying to recover from that and six weeks of immobility as well as all the chemo and surgical damage. This time round I have avoided injury but I have an arthritic hip that needs replacing and that makes walking and some exercise classes too painful. In general I have tried to use my limited energy for functional exercise like gardening and cleaning and boat maintenance. I have a lovely yoga class which helps both my mobility and my soul. Last time during lockdown I also did the SafeFit trial with a lovely trainer from Loch Lomond online. She got me doing light weights and online yoga. I carried on the weights because they are so good for older women. I love swimming but my hands and feet don’t like being in water.

I think during treatment it is enough to try to maintain your level of fitness. Afterwards a campaign of recovery is good for the soul, but it is easy to overdo things due to enthusiasm and rest days are important. I used cycling and kayaking and rowing to get my cardiac fitness back after Herceptin, and weights and gardening and sailing to build my strength. I am currently still having chemotherapy so have to allow myself to cruise rather than pushing hard. The 5k your way Move against Cancer Parkrun is really fun to do even if you just walk a short way.
Whatever form of exercise you enjoy it is good for the soul to keep it up.

EachandEveryone · 31/05/2023 16:16

Ive just come back from chemo. It was a lovely session, I managed to fit a back and shoulder massage in. Im full of knots of course.

im not back in for my sixt cycle until 28th June!😃😃😃😃😃 im so pleased. Glastonbury the 20th so I may even feel somewhat normal ish. Does anyone know what the rules on having a drink are?

lucysmam · 31/05/2023 16:53

@TopOfTheCliff thanks for that, I think functional exercise is about where I'm at right now. My poor old brain feels slightly melting though atm even though I have a couple of complicated crochet patterns on the go.

Ooh @EachandEveryone jealous of you off to Glasto! Me and dd1 get our festival fun sunnies on and have 'kitchen fest' while watching the streams of the artists we'd want to see 🤣.

Funnily enough, I asked my consultant about having a glass of wine last week when I saw her. Her response was to be sensible and limit to one or two small ones a week but not an entire bottle at once. Might differ for different treatments though 🤷‍♀️

I've just had a phone consultation with her actually & she's going to organise another drain for the fluid. It's likely not to be until next week now, so I'm still to keep an eye on it and ring the chemo line to be admitted faster if it starts affecting eating/drinking/toilet trips, otherwise it'll be done as an out patient which is better, I think. We also spoke briefly about hormone treatment after the chemo but I missed some of what she said as I was busy making notes about previous things 🙄

Pinchaperfect · 31/05/2023 19:12

Hello, everyone,

I finally had my appointment today, I found out that I can not have Immunotherapy, wich is a bit of a blow as you can imagine.

Im starting chemo tomorrow, Capcitabine tablets. I know some of you have/are taking them, how are the side effects?

My prognosis is around two years. So if Im lucky I'll get to see my youngest turn 10.

There are very many swear words Im thinking right now.

AGreatUsername · 31/05/2023 19:27

@Pinchaperfect how devastating I am so so sorry. Fuck cancer.

They can never predict your exact prognosis though and treatment moves on all the time so keep some hope.

Pinchaperfect · 31/05/2023 19:45

@AGreatUsername That is very true, I always have hope and think for the best outcome, and if something new comes along, hopefully I'll have that, but I asked and from various things she said, that is the prognosis she gave. while it is shit to know that, it is also, more than I thought, from what the other doctor i saw implied, so its bad, but, good ish

Podgedodge · 31/05/2023 20:05

Found you all! Couldn’t work out why thread was so quiet…because there was a new one…(I’m an idiot!)
Feels like ages ago now, but had to have a biopsy before my one year marker due to lump on scar line. Cancer free, thank goodness.Was called back for recheck, and glad of it. Been feeling iffy for a few days(weeks?🤷‍♀️) and lump appeared where biopsy was.
anyway, is an abscess, turned infected so now on antibiotics. Am relieved in a way, there is a reason for feeling rubbish, but still, bastarding cancer just won’t let my body be able to heal in peace.
will go back and read new(days old) thread now, love and light to us all.

dotty2 · 31/05/2023 20:08

Sorry to hear the immunotherapy isn’t an option @Pinchaperfect It must have been tough to hear that and the prognosis As @AGreatUsername says, fuck cancer.

TopOfTheCliff · 31/05/2023 20:12

@Pinchaperfect do sneak off to the rage room if you need to. Life is not fair. I have just been reading about crystals and oracle cards and thinking I need to manifest some goodness and positivity in my life to counterbalance all the shit. After a lifetime of rational scientific thinking it’s time for some spiritual woo. I have some Amazonite and white Howlite in my bra right now.
I am at the end of round two of Capecitabine. There is a good FB group called Xeloda (Capecitabine) support group which is for all users and is very informative but there is also a stage 4 group as well. Several folks there have got NED with Capecitabine.
I have found Cape hard going so far as it has sapped my energy more than IV chemo did, and the Hand Foot syndrome is trying as it is like walking on gravel barefoot. On the plus side you don’t need steroids and I haven’t needed anti sickness meds or Imodium so far. I haven’t changed my diet as I can’t find any hard evidence that it will help. I’m ignoring the pregnancy diet advice as it’s baseless. I’m just trying to eat healthily and lose some weight and keep active every day as much as the fatigue allows. I do two weeks on then a week off with a blood test and if all well off we go again. Ask anything you want to know.
At this rate there won’t be many chemo drugs left I haven’t sampled.
Sending love
Top

Pinchaperfect · 31/05/2023 20:57

Thanks everyone.

Thanks for all the info too Top, I may look into a bit of woo too. Yes they were telling me about the hand and foot thingy. Thats the same cycle I'm having too. Hoping I wont get sick with it. Do you know by any chance, I will ring and check with them, i asked if i could still go swimming they said yes, then i realised i have a spa day booked, you know, sauna, steam room etc, can i go in those on these tablets? I have a day booked on Saturday with a friend.

I will look up those groups, thank you.

Pinchaperfect · 31/05/2023 20:59

Its just all very surreal

bringonyourwreckingball · 31/05/2023 22:50

I’m so sorry @Pinchaperfect that is devastating news. A bit of the woo can’t hurt provided is as well as not instead of actual science. I have a bit of a thing about wearing green for chemo which makes no sense whatsoever but I’ve had a good outcome so far so don’t want to tempt fate.

FangedFrisbee · 31/05/2023 23:52

I feel so monumentally pissed off tonight. My immunotherapy is every 3 weeks with no alcohol and no takeaways for an entire year. This makes me sound like an alcoholic but it's just another bloody thing.

I love my job and I can't do it because I'm not to be clinical.

I can't have kids because melanoma can travel through the placenta to the baby, I was diagnosed during ivf.

My arm hurts so badly from the surgery it doesn't even feel like mine anymore.

Ugh I'm just pissed off.

EachandEveryone · 01/06/2023 00:05

Why cant you be clinical? Because I was assuming I would be after phased return.