Cancer support thread 62 - here comes the sun (hopefully)

[WhatWouldLeslieKnopeDo]

Good evening

Our previous thread is here

If you've got cancer, this is the thread for you. Introduce yourself and feel free to ask any questions. We also welcome anyone who is waiting for cancer tests. We know how scary it can be. So don't be shy. We will happily hold your hand and hopefully wave goodbye when you get good news :)

Thanks all - 1 iv down and 3 to go...
Eyes feel like they are not moving together, arm very sore where the oxaliplatin has knackered the veins but apart from that and general weakness and jelly legs and pins and needles - not too bad

Just sitting with a warm drink watching Greys anatomy and wondering how late we can collect the boys so as to prolong the peace in the house

Hope everyone else is doing ok today x

Just a quick hello as DS I saw bringing a friend home and I need to find extra food.

In other news, cat has brought in a mouse. Think DS can sort as a thank you mummy. .

Feeling yuk today and was so out of it yesterday even the check out lady asked if I was okay. And today I left my shopping behind.

addled have they mentioned the possibility of a PICC line or portacath? I imagine they'd rather use a PICC line for a relatively short course of chemo. Either way it's an alternative to having a cannula each time. If your arm is already hurting after the first infusion I would definitely ask if it's an option. My veins have never recovered fully from the oxaliplatin and it's a right pain for blood tests etc. I now have a portacath which is much better!

Sorry I'm not trying to freak you out! I'm a believer in forewarned being forearmed

LittleGreyCat sorry you've been struggling but I'm glad the dose reduction has helped :)

Tayto good that work is providing some normality :)

Waving to everyone

Hello everyone. Had my wide local excision today for DCIS. Seems to have gone OK just got to wait 2 weeks for the result then will find out what next treatment is.
Feel OK after the GA.

chasegirl I'm glad it went OK. Fingers crossed for your results make sure you rest now!

Hello everyone!

Long radio silence from me.

My qualifications: diagnosed with slow-growing lymphoma at the end of Feb, put on watch-and-wait.

Since then (and since last posting) I've been back for my six-week check, presenting with lots of lumps, and was advised to start chemo. So I did!

First session was on 2nd May. Rituximab and Bendamustine (sp?) on day one, then just Bendamustine in day 2.

Throwing up and very ill 48 hours after treatment, then slowly got back to normal over the next few days.

Now, however, I've had a nasty allergic reaction to (probably) one of the maintenance drugs. I look like I've been in a fire!

A couple of trips to A&E later, I'm in bed catching up with you all, feeling drowsy because if the piriton they've pumped into me.

I have to have 6-8 chemo sessions pevery 28 days.

to iVampire. Thanks for thinking of me upthread. I decided to go off and pretend to be normal while I could! I often think of you all, though.

Leslie last time I was on here you were pretty poorly and in pain. Have things stabilised for you?

So sad to hear about Nicky: for her family.

Hi to all the newbies: welcome to the club no-one wants to join. Hopefully most of you will get the all-clear from your tests!

Hello to everyone else. I'm going to try to keep up with you all more regularly. X

Oh Miles it's lovely to hear from you, but I'm sorry you've had such a rough time of it. I hope the Piriton is helping with the reaction!

It's very kind of you to ask - I'm much better now thank you :)

You poor thing Miles that sounds dreadful. I'm pretending to be normal too... sometimes it works, sometimes it doesn't.

Miles so sorry to hear you've been so ill. Hope they can do something to help with that.

Good luck on results Chase

Hi miles - sounds like you have had a really rough time with that treatment - I hope they are getting things under control and the rest goes smoothly...

TQ - I know what you mean about behaving ‘normally’ - some days it comes naturally and others it is exhausting trying to be ‘normal’

leslie they did mention the possibility of a Picc line, even though I only have 3 more infusions. They said see how quickly the pain settles and if it’s not quick that’s an option . It’s a slightly scary thought! I have had thrombophlebitis before in a small hand vein after surgery and it took ages for the pain to settle, so I’m expecting similar..

Just about to take the first capecitabine after some food... wish me luck!

miles.

addled I have a picc line (mainly because I had one for tp nutrition then didn't let them take out ). I asked for advice on another site and was highly recommended so worth considering if they offer one. Getting put in a bit weird but ok. Good luck with the tablets! Out of interest have you been told you need 4 rounds of Capox? My oncologist said five for some reason but sure Scott trial was four for stage 3.

Miles sorry you are feeling rubbish. Hope the drugs kick in soon.

Thanks tayto I will certainly ask them again about picc, though arm seems a lot better today so will keep monitoring it. Yes I am having 4 cycles so far as I know - although I may have assumed that when they said 3 months. I will double check!

Oh good glad arm better addled. PICC is a bit of a pain as has to be dressed and flushed every week and covered up in shower etc. However no needles for chemo or blood so think it balances out. I think most people are four. I don't know why I get a bonus one but am going to check.

Argh they have just cancelled my appointment for tomorrow so no results until 30 May. Though they did say if its cancer they would get in touch earlier, I said by phone, and they said they didn't know. Said results take 48 hours to 10 days if specialist so should just have them around now. Did say they would also go to my GP so will try and chase them some other way.

Hope everyone has a good weekend. Just off to see two thatched cottages for sale and feed lemurs on Sunday.

Oh no penguins that’s really annoying. I agree try your GP and see whether you can find anything helpful out that way?
Sounds like you have a great Sunday planned though! Have a lovely day x

addled I'm glad your arm is feeling better :)

Tayto five seems a weird number

penguins that's a pain. I hope you can get your results from your GP as 30th is a long time to wait!

That's really annoying penguins. Maybe your gp would tell you? I hated having to wait for my results and they really didn't seem keen to tell me (I think really they just wanted it to come from. A specialist). Anyway hope it's all good news and enjoy the lemurs and cottages.

Penguins that must be so frustrating, but look at it as if no news is good news

Miles it's good to hear from you, although sorry you've been feeling so rubbish. There's loads of different antisickness pills to try so if yours aren't working ask for something else

Thanks very much everyone. I'm not too concerned as I had a clear cystoscopy in February so surely can't get bladder cancer that quickly. Obviously that leaves kidneys but ultrasound showed nothing in November and blood tests gynae told me weren't showing anything very abnormal. I do have all the symptoms of kidney problems apart from massive pain but GPs told me I would have that. My Dad had to have a kidney out as a teenager so I wouldn't be amazed at a kidney issue but don't think it will be cancer. You can get the bleeding with just utis so could just be that. Frustrating to pay (well insurance pays) to go private and have them cancel both CT once and appointment once - CT was just a day delay but this is 12 days. I will try and chase my GP next week and he is lovely but not sure he will have it as it was ordered by consultant. They probably only just have the results as it was Wed pm. The lady did say I could call the consultants secretary on Monday and try and get an earlier appointment at another hospital, she also said I could try calling diagnostics but doubt they would give results to me. Other issue is they only could run 1 out of 3 tests on ultrasound so may need replacement tests. Anyway its all minor compared to what you are going through and thanks again.

Addled Hope you are feeling OK after the meds and its not too chaotic with boys around.

Leslie How are you at the moment? How is your treatment going - is it just the same now or do you get breaks?

Purple and Tayto Thanks very much. Hope you both have good weekends. How are things going? Hope conference went well Tayto

Really hoping for some advice. Sorry if this is the wrong place. I've had bleeding of and on over the past month. I don't have periods at all due to the contraceptive pill I take. Sometimes is literally just a tiny bit if pink on wiping other times I'm properly bleeding. I had a routine smear before Christmas that was clear and another last week that was also clear. I've now got to wait a further 3 weeks for a scan of my womb. I am beyond petrified and am struggling with the long wait. We get married in a few months and I can't enjoy a second of it at the moment with this dark cloud over our heads. Anybody had similar experiences and what was your outcome? I've never felt so scared and alone. Love and thoughts to everybody. X

Thanks penguins, I had a call from my consultant a couple of days ago to say that she and other doctors had look at my latest scan and confirmed that it isn't clear enough to tell either way wether my thickened uterus is cancer or radiation damage so I'm going to a different hospital to get my scans redone. They said it will probably take about 3 weeks for the appointment to come through.

Hi Sarah I know exactly how scary the waiting around is but if they thought it was cancer related they would have seen you under the 2 week rule which they do for anyone suspected to have cancer. The fact that they aren't rushing is good news, although it is frustrating not knowing. There's a much higher chance of it being nothing too serious such as fibroids etc x

purple that’s frustrating to have to wait that long, sorry to hear that. Are they doing the exact same scans or more detailed ones?

penguins glad to hear the recent cystoscopy was ok - that must be a little reassuring although the results will be more so, so fingers crossed they hurry up!

Hi sarah - that’s not nice to have all this worry at a stressful time, but there are lots of reasons (non cancerous) for bleeding if you’re on a pill so I’m keeping my fingers crossed for you! It is usually hormonal - how long have you been on the pill? If it is the mini pill then I sympathise as I had lots of erratic bleeding with it and had to change to Mirena coil eventually...

Also my arm is still sore - feeling so bruised - though the pins and needles have settled over the vein area. Wondering if others had this go on for so long after first oxaliplatin?? Will call the chemo unit tomorrow and tell them but wondered what you clever people think?

purple sorry that you need more scans. I hope they get those arranged quickly for you

sarah a clear smear test is promising. Could it be a side effect of the pill? I was on Cerelle for a few years. I had no periods but very occasional spotting. I hope you get some answers soon

addled I don't think I had that in the first cycle but certainly in later cycles the pain would linger. A hot water bottle or wheat bag might help a bit. I didn't have pins and needles but a horrible ache and the skin felt like it was sort of burnt. It's nasty stuff.

Waving to everyone else. Just waiting for guests to arrive for lunch :) I've been cooking which always cheers me up!