Cancer Support Thread #79 Newbies Welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@HumphreysCorner did they forget to give you the filigrastim? That's what I take for a week after chemo for the neutrophils. I had my second round of EC yesterday. First time round no sickness. Yesterday I felt ill as it was going in and last night horrendous. Now just finishing off breakfast with my chemistry lab of tablets and my thinning injection.

Cancer has turned me into an amateur scientist and personal physician. I'd be proud but that seems churlish.

Morning everyone. For those that take Filigrastim do you have any side effects? I’ve taken 3 doses since chemo on Tuesday and had quite bad leg pain since Thursday. The hospital said pain in the long bones was not uncommon and arranged pain killers via my GP. All my general bloods are fine but my neutrophils are below normal anyway so it is an area I’m concerned about. They were 2.3 before starting chemo. I hope the Filigrastim boosts them. I wasn’t told about / didn’t review all my blood work in detail last week though so will ask for this next Tuesday. Would I expect this rather than them just cracking on? Any advice?

Recovery or waiting aside I hope everyone can enjoy their weekend and the weather is kind wherever you are.

@JeanLannes I had the odd ache and pain to start with. Then six days in I had the worst throbbing waves of bone pain in my lower spine. Bloody horrific. Painkillers helped though but from my first course that was my stand out worst side effect.

@JeanLannes I had horrible leg pains after my hysterectomy, I was using Voltarol gel and taking ibuprofen, eventually they just stopped. With filgrastim I've mostly had pains in my chest and back.
@beresh I didn't spot where you came onto the thread, but welcome and whatever's happening for you, I hope you can find help and support here.
@balkanscot the consultant I saw on Wednesday phoned me yesterday and I mentioned it to her, she said I should keep it moisturised and I could take piriton, they can prescribe some cream or other if necessary but I guess it will calm down. My hands are still very dry and rough too, the skin on the tip of my right thumb has split but with DP's help I have fashioned a dressing for it which should stay on, sigh.
Sympathy to all who are coping with sub-optimal news, anxiety, waits for appointments and results, symptoms and side-effects. And all the other crap that life throws at us, which may be nothing to do with cancer.
Excuse me while I show off our lovely new shed.

@PhannyPharts that's how I was. The first EC was ok but on Tuesday I felt so sick as it went in.

These are what they 'forgot' to give me. Thank goodness I have them now.

HC x

@Bloodybridget that’s a very neat looking shed.

Thanks for the filigrastim comments. I guess I need to start working out what feels normal and what doesn’t now. I do know I’ve had a whole lot of drugs this week so should expect to feel a bit off!

@Bloodybridget oops I logged in from my old computer as @beresh sorry...thanks for the good wishes. Great shed.!

Best wishes getting through the EC chemo. @HumphreysCorner. I seemed to live on tictacs, don't think I'll ever eat another one!

@Bridget, that's a lovely shed, I'd like one of those!

Hopefully someone knows the answer to this, but how long should I follow the boring low fibre diet before a colonoscopy? Have picked up my bowel prep (lemon - 🤢) with a leaflet that they told me would have all the details and there is nothing about this, other than up to 3 pm the day before.

@Recorditnow I didn't have a colonoscopy but I had to do the bowel prep prior to my OC surgery. I was advised to do the low fibre diet 2 days before the procedure, then the bowel prep the next day and then had the surgery the following day. Is it Citrafleet? Make it up with hot water as it will dissolve more effectively but then cool it down to drink it. I warn you, it fizzes up and foams like a mad science experiment. It tastes a bit like Lemsip and not too bad if you knock it back in one go.

Thanks @FizzyOrange it is Moviprep. I have to drink one litre of the stuff and 500ml of water, twice. The procedure is on Thursday afternoon.

Hi all - sorry I haven’t been on here the last few days, still processing the possibility it’s cancer and thinking about my little boy. 9 days to go til my appointment yet feels like forever :(

@Recorditnow a litre of Moviprep, oh my word! Someone on the chemo unit said to me to eat small amounts on the low fibre diet so there is less to come out. The hunger was the worst part for me.

@FizzyOrange two litres, I have to do it twice.
I'm going to do the low fibre diet from Tuesday. I will take your advice, thanks.

@MamaOl93 It is the waiting that is the worst.

My mind was terrible at first and I was really upset, but my GP phoned and reassured me somewhat, and I have calmed down a bit over time. Is there anyone you could speak to?

Still not looking forward to Wednesday/Thursday, but I hopefully will have some answers then.

@Recorditnow As a veteran of the bowel prep, I would advise making the moviprep up in much less water and treating it as a shot then drink a litre of water. The taste is rank and it is tough to get through the volume if you make it up normally.

I've never done a low fibre diet before hand but I have ulcerative colitis and it could well be different.

@MamaOl93 The waiting really is the worst bit and once you know either way it will be much better.

@Bloodybridget Great shed!

@bontopia 33 sessions. I thought @BadEyeBri and I had it tough with 25 radiotherapy sessions.

I've had a phonemail this morning and I have an echocardiogram organised for Tuesday morning so we can go as quickly as possible once I have seen the oncologist.

@JeanLannes If the Filgastrim gives you lots of bone pain, there are a couple of things you can try. The first one is to take antihistamines alongside the Filgastrim (if your onc is ok with it). Apparently the bone pain is a histamine reaction, so this might help. Plus points: Antihistamines might also make you sleep well... The second thing you can ask for is a slow release version of the bone marrow stimulant, Lipegfilgastrim. You might get on better with that one. It's more expensive, so they don't tend to offer it as standard.

@HumphreysCorner I've heard that some trusts don't issue Filgastrim on the first cycle to get a baseline for how far the lovely little neutrophils fall on their own. But this is usually on three-weekly cycles, and you're every two weeks, right? Or did I get that wrong?

@KentishMama my EC is 3 weeks. They seemed apologetic that I didn't get them last time.

HC x

@HumphreysCorner - That's interesting. I think they are standard for all trusts if you have EC every two weeks, but not used for every patient that has three-weekly chemo. But if they were apologetic, it really sounds like they messed up a bit there! Hope this cycle is treating you well.

@MamaOl93 the waiting is the worst. I spend a lot of time thinking and worrying about my 2 DC. Once you know what's going on things settle a bit.

I had my Covid jab yesterday and I've spent the day feeling awful hiding under a duvet. Rubbish way to start the weekend.

Thanks for the advice @MrsPnut. I have to mix two powders together and they were insistent on the 1 litre each. I will see if I can get away with less and increase the water. I was hoping I wouldn't be able to taste it with a straw.

@ChickandLamb I had my second covid jab this week (AZ) and the side effects from the second were much less than after the first.

Radiotherapy number 26 today completely wiped me out. I've been in bed since 10am. Only 2 left but it seems a bit cruel that I had a 6 day week right at the end. 😩

@bontopia if you have 33 rounds get an appointment with the skin nurse right from the start and keep moisturising. Any redness or soreness go right back to them. They are brilliant

I finished my radiotherapy on Thursday, have been told the consultant will phone me in 4-6 weeks.
Will be having a Bisphosphonate treatment in the next few weeks.
What happens afterwards am I just left until my next mammogram in December.

@MamaOl93 it's true. The waiting is awful and I've everything crossed for you but there is always a plan and whilst this has been as far away from fun you find reserves from somewhere. My son is dealing with all this with so much grace and style. I'm so proud of him.