Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

Hi piggles . Just adding my welcome to the thread. Sorry you have to be here but hope you find it useful.
I'm sure things will be lot clearer for you once you've seen your oncologist. You must feel in an absolute whirlwind as things have progressed very quickly for you. The breast cancer protocols do seem to be very well established and generally speaking things move forward at a good pace, which is great of course but can leave you reeling until you get your head around it all.
I've just finished 7 rounds of chemo on a 3 weekly cycle for a her2+ lump which I had removed on May 1st. Chemo started June 3rd, and I'll be starting radiotherapy on Nov 4th. Ixe had perjeta and herceotin as targeted therapies in addition to the chemo and will be continuing the herceptin into next year. So that was the order for me, but it varies depending on individual circumstances. I also have implant reconstructions on both sides following 2 mastectomies a few years ago. So I've had my fair share of input really! I cold capped throughout so if you have any questions about that feel free to ask.
Im very pleased to have finished chemo though the side effrcts from my last cycle do seem to want to keep a grip of me. Hopefully not for much longer.
Tips for chemo......I guess I would say to follow the guidance that they give you (there's a lot of it!) and seek help promptly when you need it. I live alone though have a DP who is with me a lot but I knew he couldn't be there 100% of the time, so I spent some time gathering a band of supporters around me and that has been crucial in getting me through. So I've had regular visitors to keep my spirits up at times when DP wasn't there, also a couple of very trusted people to be with me at chemo sessions, as that's been one of most vulnerable times I would say. I also have a very sensible real life chemo buddy. When the going has been tough she has been there to remind me that all of this is temporary and will end. Sometimes it's easy to lose sight of that.
And also remember that, although there are similarities, everyone reacts differently to chemo. So for instance, on the same drugs my friend got constipated whereas I've had dire rear.....as everyone here knows as Iike to share my misery Don't forget dark polish to protect your finger nails.
Take it one step at a time. It's all doable.

bridget i was feeling pretty good on Friday, less so yesterday as developed a crop of painful mouth ulcers and the Vesuvius like spot on my lower back was hurting like hell despite 3 days worth of unguent from the GP. I msy need to go bsck next week if there's no sign of improvement. Tatsebuds still in hiding but I can't eat much anyway as my mouth is so flippin sore! Moan moan moan.....
Hope everyone is ok and having a nice Sunday. I'm really looking forward to roast dinner at the Patience once I can eat it...yum yum...

WTF99 - just saw that you cold capped during chemo. I have my oncologist appointment tomorrow, so should get my treatment plan sorted and start chemo in a couple of days. Do you mind telling me a bit more about cold caps? Do you need to spend a lot longer at the hospital if you use it? I think I read you have to have it for an hour beforehand and 90 min after. Is that right? How unpleasant is it? Do you have any tips??

Hope everyone is enjoying their weekends - I've tried to, but the oncologist appointment has put a bit (huge) dampened on it!

Welcome @ALemonyPea

I am sure that someone will know something about something but I didn’t want you to go unacknowledged .
I have been on a steep learning curve since July but only about my own situation !
Anyhoo pull up a chair in The Patience Inn and grab a tipple of your choice .

Zorgo
The amount of time you have to wear the cold cap varies depending on what chemo drug you're having. It was longer during my first 3 cycles when I was having FEC (an hour before, probably a couple of hours during and 90 mins after) On the last 4 cycles I just needed it on for the docetaxel and not whilst I was having the herceptin and perjeta, so half an hour before, an hour or so during, and half an hour after.....a lot shorter.
I did find it quite hard going. The first 15 mins is the hardest when you are very aware of the intense cold. After that your scalp becomes kind of numb so it's easier though still not pleasant. It's good to be wrapped up warmly so I took socks and blanket, plus some hot chocolate in a flask to sip through a straw for the first 15 mins . The chin strap to the outer cap is quite tight under your chin so not much room to get much in your mouth!
The staff will help you prepare your hair when you get there.....it has to be damp with a layer of conditioner over it to orevent the hair from freezing to the actual cap.....I found it helpful to wet my hair in the shower on the morning of treatment and leave it damp.
I have lost quite a bit of my hair despite using the cap. Its more successful for some than others....I'm.not sure if there's a predictor for that. I had very thick hair and I'm not sure the cap was applied with a snug enough fit on the first occasion (it was left to a student nurse to do) so wonder if that contributed to my initial hair loss which occurred in the week following on from.my second treatment and then pretty much stopped. Im glad i did it though. There were cycles when I thought I might not be able to do it but knowing I could ask them to take it off at any time really helped me to focus and persevere.
I would say that if you're unsure give it a go.....you can always stop if it's not for you.

Hope your appointment goes well. Let us know how you get on. Thinking of you.

My cold capping was half an hour before and an hour after treatment. As WTF said the timing depends on which drug you are receiving. I had Paclitaxel.

The preparation of your hair and the fit of the cap are very important. I used to use my hands to push the cap down hard at the start. If you are not happy that the cap is tightly fitting with no loose bits you need to be quite insistent about it but my experience was that the chemo unit nurses were very vigilant about it.

I found that taking a large dose paracetamol before I left home before each treatment helped with the first 15 minutes which is unpleasant. I also took a small silk scarf which I folded to make a pad under the chin strap which can get uncomfortable. For me it was worth it. I have lost some hair and it has only just stopped shedding but it was gradual and even and my hairdresser says (I believe her even though family have said it too) that it doesn't look any different although she can feel that it has thinned slightly)

For some drugs cold capping works really well, for others it doesn't really work at all. They do say that even for the drugs it doesn't work for hair grown back more quickly if you cold cap but only you will be able to decide it if it worth it in that case.

I joined a private facebook page set up by Paxman which is the cold cap I used. It had loads of useful information about cold capping and what to do and not to do. The Paxman website is also helpful.

@meercat23 @WTF99
This is so helpful thank you! Will look at the Paxman info.

I’ve also heard it might be a good idea to cut my hair fairly short before cold capping / chemo on the basis that the less heavy it is, the less strain there’ll be on the follicles. Is that something either of you did? I have quite long thick hair (for now!).

I have fine chin length hair and didn't cut it before treatment but if you have long hair you might find it easier to manage shorter

I have just realised that I posted that I took a large dose of paracetamol. I don't mean that I took dozens . Just two of the higher dose ones.

I did have my hair cut into a shorter bob before chemo.
I second what meercat says about taking paracetamol half an hour before you start. Also about speaking up if you're not sure it's on properly. I wish I had done that but it was my first session and I didn't know what to expect. I realised on my 2nd session how much colder it felt on the top of my head than the first time when the student had done it.

Ah WTF I am sorry you still have the painful spot and sore mouth. You could reasonably have expected to feel a lot better by now!
ALemonyPea, I don't have any experience to share with you, but welcome anyway, and hope things turn out well for you.

Marginally better today bridget ... spot appears to be morphing into lower foothills rather than mountain peak...and ulcers a bit less vicious.....holding my breath for continued improvement now

Thanksmeerkat and WTF for the info on the cold cap. Will check out the information you suggest, and take your tips on board!
Saw the oncologist this morning and now have to wait for a heart echocardiogram (should be within next week), then have to go back for results and treatment plan, and will then start chemo the day after. Treatment options are currently herceptin and pertuzemab, plus either (1) epirubicin and cyclophosphamide, or (2) docetaxel and carboplatin. Side effects sound scary, which I know they have to tell you, but I trust the Christie, so just want to get on with it now - hate more waiting!
Went to Maggie's, which is lovely, and am going on Thursday for a relaxation course (which will hopefully help with my cannula fear!).
Hope everyone is having a good Monday. Going to pick my son up from his play date - he was excited at going to his friend's house at 7.45 this morning!

Good to hear from you zorgo and that your appointment went well.
I had a mixture of your options one and two, plus the perjeta (pertuzemab) and herceptin.
The side effects are yucky no getting away from it, but remember that you won't get all of them every cycle and your team will have lots of magic potions to offset the worst of it for you. It's all doable and you will do it.
I'm sure you're very keen to get started. When I was where you are now, I used the time to get my support team in place. Obvs my circs are different to yours as I don't have a live in partner, but you might want to think about what additional support you might need and who you can rely on to provide that. I've found people have been fantastic and many have helped me in different ways, and I've always been Miss Independent in the past. It has been one of the best things about a crappy experience.
Hope you can relax a bit now .

Hi piggles sorry to see you here. I can see you've had lots of tips already.

Hope everything goes to schedule with your treatment, skap. Family wil have to fit round you for Xmas this year I think!

lemonypea hello, I don't know really know anythng about your treatment but wanted to welcome you. It must be frustrating to not have someone to compare notes with.

bridget sorry you felt rough at your friends party the other night. Nothing worse than looking forward to something then spending all the time wishing you were back home curled up on the sofa.

Hope the relaxation session helps with the cannula worries zorg.

Hi @ALemonyPea no knowledge her I'm afraid. Have you tried MacMillan? They have some advice lines.

@Bloodybridget shame about your night out. Your cold is really dragging on, you've nothing left to fight it with.

@Zorgothslugofdoom it sounds like everything is moving quite swiftly. Do you feel better now that you know what's happening? Are you having a MUGA scan as well as echocardigram? I had both for the Herceptin. I'm told they will be repeated at regular intervals. Did they talk to you about how the chemo is given? You can have a variety of semi permanent lines which avoid the need for cannulas. If they haven't then that discussion will happen when you see the oncology nurse. I'm sure the Christie will have state of the art stuff.

Maggies sounds so good, I looked them up but sadly they are just in London and major cities and nowhere near me, nor is there anything similar. The only sign of MacMillan seems to be just a leaflet stand.

Off for round three tomorrow. I am no longer dizzy but my nose is bleeding on and off. I think someone else mentioned nosebleeds. I can't blame lack of hair as my hair is still intact though I expect it to go any day now.

Hi, I'm not sure if I should be posting here. I apologise if I'm in the wrong place.

I found a lump in my breast 2 months ago and a bruise like mark on my breast that has been there for at least 2 months. I've been to the gp, who has referred me to the breast clinic. I'm 38, no children.

I'm kind of panicking and really worried. The gp said "it's probably nothing, but it's good to check it's not cancer".

I'm scared and not to sure what to think, so I've read through the thread and as you have been through this I was wondering if anyone has any advice?

Minou you are absolutely in the right place. I hope it will turn out that it is nothing but meanwhile it will

be scary and waiting to find out is horrible.

My best advice for this waiting time is to stay away from google and be as kind to yourself as you possibly can

Do you have an appointment yet or are you still waiting to hear?

meercat23 thank you.

The secretary at my gp tried to make an appointment for me, but they couldnt confirm an appointment there and then. So I am waiting for a call. If I dont hear from the breast clinic by wednesday, I need to call them.

Thank you for your advice. Unfortunately i have been googling. I know I shouldnt, I couldnt help it. I will stop.

Not knowing one way or the other is really hard.

@minou123 you are in the right place. Lots of people on here with breast cancer but equally lots come on the thread for support during the difficult period of not knowing and then leave when they get good news. First of all GPs never make a decision when presented with a breast lump. So even when experience tells them it's probably harmless they have to follow the protocol and refer to a fast track breast clinic. You will be seen within 2 weeks and most likely get a good idea of what they think, if not a definite diagnosis.
Do you have a partner or good friend to go with you to the appointment?
I posted this on another thread but it's worth repeating.
I have breast cancer which was diagnosed in July so have experience of the 2ww breast clinic. First of all I would say do not go alone.
They are very efficient clinics and if they think you may have breast cancer they may well tell you there and then.
I had a mammogram which was looked at by a radiologist there and then, I then saw a consultant who examined me and then an ultrasound conducted by a radiologist. who also did a biopsy. I then had to see the consultant again who told me that, subject to the biopsy, she was pretty sure it was cancer. All this took 3/4 hours. I then had to go back 10 days later for the biopsy results.
If they think it's something harmless they will also probably tell you on the day. I had that happen 5 years ago and was sent home reassured.

meercat is right and google is not your friend right now.

Hi skap thank you for you advice.

It is the 2ww breast clinic I have been referred to. Your information about the process is really reassuring, thank you.
I'll try not to overthink this, but it's great if they can provide some sort of indication what they think there and then.

I dont have a partner, but all my friends and family have offered to come with me.
I'm not very good at asking for help or accepting help, so I was planning to go alone. I've always done things by myself, I feel like I' intruding on other people's time if I ask them to come with me.
I see you have put it in bold to not go alone, but could I do this by myself?

minou you can if course go alone if you want to but bear in mind that if they take a biopsy you might be a bit sore so not want to drive or use public transport. Also, if it's not the best news, or maybe not completely clear, it can be helpful to have someone there for support and to.listen with you to what is being said. It can be a lot to take in if you're feeling a bit wobbly.

That said, do remember that the majority of lumps and bumps seen at breast clinic turn out to be nothing serious so fingers crossed that you fall into that big group

And stop googling! Seriously....put it away!

Thank you WTF99, I'll reconsider going alone. I know my mum really wants to come with me.

I will put google away! Whilst, like most people, I've heard of breast cancer, butI dont really know much about it. So I thought I'd do some research. Turns out you were all correct, google is not my friend.

I will keep you updated.
Thank you all for your support.

Good luck with round three Skap

@minou123, I went alone, although I have a wonderful husband and fantastically supportive mum. I just wanted to know what I was dealing with before either of them, and I don't regret it. Just go with your gut.

Minou hello and welcome, and I do hope you don't have to stay here!
Skap hope your third chemo goes smoothly.
WTF maybe you have turned a corner - crossing fingers!
Thanks for good wishes and commiserations! I am definitely over the worst of the cold now, am even wondering if I might make it to choir tonight, although I fear I would be making peculiar noises!
Waving at Zorgoth, BitOfFun, Snows and all the gang.
Btw can someone tell me the origin of "lacies"?