Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

Hello all, good to catch up on your news, though obviously not good you’re here in the first place. I deleted MN from my phone at the beginning of the year because I was spending much too much time on it, though I have missed chatting to people here.

I realise the first anniversary of my cancer diagnosis went past this week, and I didn’t notice it until two days after, partly because my DD has had some health issues, and I’ve had to rush up north a couple of times.

I was originally diagnosed with endometrial cancer, and when I got a second opinion, a tiny spot of ovarian cancer was also found. I had hysterectomy and chemo, but refused radiotherapy as I couldn’t actually see significant benefit to it when I read the research. I finished chemo at the beginning of November, and I haven’t got my first check up until end of April, I think it should’ve been after three months, but I’m not that keen to chase it up. I had some slightly odd blood test results last week, but I’m hoping that’s just because I’ve had an infection too. I’m re-testing in a couple of weeks, although that’s just before I go on my first foreign holiday since before the pandemic. The anxiety comes and goes, at the moment I have pain in my back, which I’ve had on and off for the last 20 years, and it’s probably because I did some of classes at the gym after exercising for a couple of weeks, but it’s difficult not to think it’s something more serious. I am also supporting a friend whose cancer has metastasised to her bones, so it brings it all back again.

I have just stopped wearing my wig, though I have strange two-length hair from cold capping, and the longer bits are a bit thin. It’s kind of a mess but a massive relief not to have to wear the wig!

I read this article in the Guardian earlier, and smiled wryly in recognition at the bit about every time he went back the diagnosis got worse, I was thinking about the low odds bin and those of us who have been told that “this” - whatever it is - doesn’t usually happen. I think he captures the terror well https://www.theguardian.com/society/2023/apr/08/how-cancer-in-my-30s-brought-me-face-to-face-with-death

Lemons I had tingling throughout my chemo (Pax) and they like you to report it, its peripheral neuropathy, and they monitor it and can reduce dose if you start say struggling to do up buttons or walk. Its normally temporary but can be permanent if not watched properly. Mine lasted until about 3 months after chemo. Though I still have an odd pressure in half my face and teeth which may be related though am ignoring it, oddly the only time it has gone was when I was in the Azores in the 37C spa pool. I think that means I need to live there. 😂

Bring Your DD sounds lovely. I have a DD the same age, mine is always out with friends / boyfriend, working at her punting job or at college. She did get signed up to Young Carers (though does not caring) and that gives help with university applications, guaranteed interviews at some places and lower offers if that applies to your DD. If she's exam year she may be eligible for special consideration due to your treatment though it has to be at time of exam and pastoral care have to say affected her emotionally.

Enjoy the musicalTop The fitness will come back, or at least it will improve, just in steps.

Hope everyone has a good an Easter as is possible with cancer. We have DS home for the long weekend which is lovely. Floof is very trilly. Just about to have fish and chips. We stay overnight at hotel with swimming pool on Monday night by DS which is good as get my swimming done.

@LarryStylinson I’m a single parent. I’ve had a lot of help with the school run from my daughter’s friends mum and another school parent. First chemo knocked me off my feet for 2 weeks, I’ve not been able to drive at all. DD is 10 so she’s been helping me with bits of cooking and hoovering: earning robux. How old are your children?

@Silkierabbit thanks for the info. My second dose was reduced after the first hit me hard: it’ll be interesting to see what happens for dose number 3 after all this tingling.

@Silkierabbit that’s really useful to know about the young carers- both dds have had to do more than I’m completely comfortable with because I’m on my own so I am keen to minimise the impact wherever possible. Her doing my dressings (it’s only for a few weeks) was a trade off for me being available to drop her off and pick her up for all her work and social commitments so felt like the right decision - not that I put it to her like that, and I wouldn’t have done it if she wasn’t comfortable with it.

It must be so hard to go through this alone Bring I am glad your DDs will help a bit. It was the la that did the young carers but think a school can do it and DDs school that also gives her extra pastoral care as well. Sounds like you have lovely daughters and are a lovely Mum.

Hope they can get tingling under control Lemons I had it pretty much throughout and worsened after chemo but then after 3 months it pretty much all went. Apart from wierd face thing. My dose was 90% but was on weekly Pax. I also used a coolbox each chemo with ice chemo gloves and socks and ice gel packs from Amazon and ate ice lollies which in theory help.

@LemonDrizzle10 @AGreatUsername thanks folks. this is really appreciated -:I've only one kid (autistic tween) and we've some lovely folks about us so I'll get to planning.
In stark contrast to certain family members who are focusing on 'if you die, I'll take your kid in' 🤦

@each I was given some supplies by the oncology department which I.took to the weekly flush for the picc. Can you check if oncology can flush it for you instead of waiting till next week?

Happy Easter all.
My tingling got unbearable yesterday and I ended up going to hospital to get checked.
Is anyone else having the EC/Paclitaxel combination for treatment?

We’re having our Easter dinner today - missed it yesterday and had fish fingers!

What did the hospital say? Ive been on Paclitaxel and another one. I hope ypur tingling fades when is your next treatment?

ive been scrolling through my blood results and it looks like my potassium has been low throughout my chemo treatment. I noticed my creatinin had dropped last time too. I hope theres no kidney damage and I cant see how I can get them both up naturally. This time tomorrow my scans will be finished 🤞

Hospital checked bloods, doctor told me it’s a side effect - I’m worried that my body is going to get completely destroyed by this process and wonder if it’s worth it.
My mental health has taken an absolute battering. He told me that the combo I’m having is one of the hardest. I hear stories of people working during treatment- I can just about walk, can’t drive, I’m really struggling.

@EachandEveryone roll on tomorrow!

My gaze is firmly fixed on my last treatment which will hopefully be 9th June - goodness knows what shape I’ll be in by then - quite terrifying given the state I’m in after 2 cycles.

Hi @LemonDrizzle10 & everyone I am a lurker & am glad I found this thread but sorry we are all on it!! I was also on the ec/pac regimen and found it tough going - some cycles were harder than others. I feel your pain! I had 4xEC followed by 4xPac every 2 weeks. I understand that most ppl find ec the hardest of the two but I actually found pac harder going! I managed to get through but they had to reduce the pac dose as I started to get tingling in my feet. Good luck with it all & roll on 9th June!

@Onecattwocats thanks for your info. It’s nice to know there may be some variation in feeling after each cycle. I had tingling in my arms and legs and face, I’ve already had a reduced dose. It’ll be interesting to see what the next dose it.
I’m so pleased this online community exists - a mumsnet classic for a different reason. Maybe a new catagory should exist - most supportive thread community perhaps.

I know what you mean, a kind of thread where we can just moan and groan or just gossip like on Chat. And let this be the blinking just cancer one as its amazing but I get that sometimes you just want to vent and go off topic.

my chemo was weekly and Im not sure if thats better rather than having bigger doses less frequently?

I had 4 cycles of weekly paclitaxel/carboplatin/pembrolizumab (so 12 weeks in total) and have had some tingling in hands and feet but it comes and goes. I’m now on EC 3 weekly for 4 cycles. I’ll be done the week after you @LemonDrizzle10 we can be end of chemo buddies.

@bringonyourwreckingball 🍾is going to be ordered for the last one. Highly likely that I won’t be able to taste it but I’ll feel the bubbles on my tongue!
my next trip to the ‘torture chamber’ is this Friday - when is yours?
The tea lady is an absolute angel in my chemo unit: she dishes out Kit Kats very generously along with her lovely smiles which can be clearly seen despite wearing a mask.

Hello all

Anyone else here got HER2 breast cancer? Not hormonal.

Mine was all over the axillary lymph nodes when diagnosed, stage III. Grade 3, supper aggressive.

Had 4 EC chemo followed by what was supposed to be 12 weekly Paclitaxels, but I had anaphylaxis so was switched to Abraxane.

Then recovery period followed by surgery: full mastectomy and lymph node removal level III.

The recovery period then radiotherapy 15 days.

Since starting paclitaxel also been on Phesgo every 3 weeks (Herceptin plus Perjeta injections).

I'd love to 'meet' another HER2 patient because any time I do meet other BC patients or try a group, the conversation is always about oestrogen blockers. Obviously, having a non-hormone sensitive cancer, mine hasn't got anything to do with Tamoxifen or Letrozole etc but HER2 treatments instead.

best wishes to everyone x

@LemonDrizzle10 i’m in next a week on Friday. Very inferior biscuits on my unit but they do a great range of soup if you’re in at lunchtime.

@SummerCycling my breast cancer is non-hormone receptive too - triple negative. I was very lucky though, I was diagnosed at stage 1, no lymph node spread. I’m just over halfway through chemo and am also having immunotherapy.

@bringonyourwreckingball

Hi, that's great yours was caught early because TNBC is also an aggressive type isn't it. No lymph node spread is key, I hope everything goes well for you.

Pembrolizumab? A friend of mine has TNBC incl lymph but hasn't been given any immunotherapy. I wonder why.

@SummerCycling yes I’m on pembro. It may just be timing - NICE only approved it for TNBC in November and my hospital only approved it a week before I started.

@bringonyourwreckingball I’m identical to you. TNBC stage 1 and no lymph node spread. I’m 7 lots of chemo then radiotherapy. I’ve just done round 2.

@SummerCycling just seen your post.
I’m in your gang too.

@SummerCycling my hairdresser had treatment for stage 3 grade 3 over 14 years ago. She’s doing great.

I’m on m way for the scan now 🙏🙏 hopefully the strike won’t interfere with my appointment tomorrow