All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

I am back at home and feeling much better. I have been given a course of antibiotics and have found that my swollen ankle/foot is no longer swollen. I've had this for several weeks and had an ultrasound to check it wasn't DVT. Wondering now if it was cellulitis?
I went out with DS2 to do a supermarket shop. A lady was collecting for the Karen Morris Memorial Trust. Karen was a young woman who died from Chronic Myeloid Leukaemia in the late 1990s shortly before a drug (Imatinib) was developed which has revolutionised treatment of CML so that the average life expectancy is now normal, whereas it was only five years before. The lady collecting was Karen's mother and the trust has raised £1.8 million which has (amongst other things) funded "homes from home" at hospitals where leukaemia patients and their families can stay during treatment. I pointed out DS2 who has had CML for over 4 years and is living a completely normal life because of the new drugs. Think I ought to set up a standing order for this charity!

Hi all, I've just spent the last 4 hours in A&E as the picc line was infected - as soon as the nurse saw it this afternoon she packed me off to the hospital. Much discussion there as they didn't quite know how to take it out properly. I only had it put in on Monday.
I feel heaps better without it though, I found it really uncomfortable the whole time it was in, but they say I'll need a new one for the next cycle. Bag of antibiotics to get through for the next week.
I'm exhausted Sorry that's a bit me, me, me.

Oh dear pepper. At least they didn't keep you in, so your neutrophils must still be ok.
Have you got very bad veins? You can have a canula for each chemo rather than a picc line if your veins are ok. The epirubicin is rough on veins but it is doable. So maybe ask your onc about just having a canula for each chemo if you are worried about infection.

Or better still, plead for a Portacath. I've had mine in for nearly three years with no infections ... And there's no problem about showers or even swimming as it is under the skin.

Good morning all. So sorry about that infection pepper. I totally agree with lily about the port a cath. It is defnitely way easier and less of a health risk. I have one and can not recommend it enough.
Wishing everybody a restful weekend.

For those of you lovely ladies who are on Tamoxifen. Have you noticed that there is a "better" time to take the dose? My docyor wants me to start now, and I recall that someone mentioned that taking it at night makes the side effects less bothersome? What are your experiences?

I heard that taking it in the evening meant the SEs would be during the night so I take mine at 6pm. Seems to be fine the worst thing is remembering to take it ! In fact I'd better take it now !

Yes mrs the person i spoke to said taking it around 6-7 pm worked best for her as opposed to morning.
I sat staring at the box yesterday. Although my estrogen receptor was not high, the oncologist still recommends i take Tamoxifen, but I am feeling anxious, wondering if it is really worth it. I will most probably end up taking it, just delaying till next week as i have a big family get together this coming weekend and wanted to make sure i was ok. Oncologist said will do some investigationsin three months' time.
Can somebody tell me when they got checked up after treatment and what it involved?
Have a good day ahead.

Royal, I take it in the morning. I'd been nervous if it but am now a month in and going ok so far. Not that I'm totally SE-free but I wouldn't lay it all at the door of the Tamoxifen when there are so many other possible culprits.

Fresta and rover, hope you're gradually feeling comfier post surgery.

Pepper, what a pain (literally) about the PICC line. Are the antibiotics helping? I had cannulas each time but was lucky with veins - a portacath sounds like a good option.

Rustcohle, hope you get useful advice tomorrow and all the best for Thursday.

Glad for your news, mrsrhod.
And good to hear you've been feeling better at home, Lilymaid. May that continue!

I have 7 more rads to go. Going ok, but get tired in the afternoons.

Wishing easygoing weeks to all.

Thanks dinster. Good to know i am not the only one up:)
How is your skin reacting to the rads so far?

Having my first herceptin today and Paclitaxel. I was so nervous for the herceptin and am now waiting 6 hours on the day unit. I will have my pax at 1, and be released at 5. A long day.

Morning, silly, that does sound like a long day I hope you have a good book, do they monitor your heart for a while for Herceptin effects then or does the paclitaxel just take a long time?
I'm a bit perkier today (though rattling from all the tablets), I have to go back to the hospital to the "ambulatory care" department tomorrow to check the infection, no idea what happens there .
I rang the chemo unit to tell them about the picc, and they simply booked me in for a new one the same day as my next chemo, I have a string of blisters up my arm from the special hypoallergenic dressing though so I'm really reluctant - though glad of the gap for my arm to recover. I'm kind of thinking I may have to have a new picc for each cycle. I shall ask about a portcath, they said I had to have a line for my chemo regime (TC) though I only have 3 more cycles.
The district nurse is doing all my injections, I think they wanted to monitor the picc as I seem to be reacting badly to most stuff, so they were more than happy to come daily.
elmindarina - hope you had a good night out
Have a good day all.

Thanks Dinster, not feeling too bad to be honest, at the moment its more discomfort than pain which is good. I'm doing my exercises every day as well and I think my other shoulder is suffering more than the one on the affected side! mysilly hope the herceptin goes well, the hanging around is a bit of a pain but the time you wait gets shorter after the second one (or it did for me). I've got my 6th herceptin tomorrow, was supposed to have it last week but had to delay it because of my op. Hope you're feeling better fresta and pepper

Back at hospital today for blood test, CT scan (results on Friday so scanxiety here) and to report on development of vertigo over weekend.
Blood test fine Hb level was 63 and is now 96 after three bags of red blood cells). Before I started treatment in 2013 it was a fairly normal 125. Next transfusion the week after next before I go away with DS1 to Seville.
Now got pills for vertigo ... yet another SE of too much chemo! I felt like an iPad screen when it is rotated and has to adjust!

Hope it goes well Mysillydog,

Royal, hope you get on ok with the tamoxifen. I'm not 100% sure about follow ups after treatment but was under the impression the only checks would be an annual scan/mammogram and then general checks/chats about symptoms. If you have no further symptoms there may not be further investigations. ??

Pepper, hope the infection clears up ok and you get the line sorted for next time.

Lily good luck with the scan results, hope you get the news you are hoping for and the wait is not too long.

I'm still waiting for the drain to come out. My arm is somewhat strange feeling at the moment but think it's just the nerves and tendons which have all been pulled around coming back to life.

Mysillydog, hope you manage to keep yourself occupied during those hours.
Pepper, I really believe that a port a cath would have spared you all this . I hope they consider putting one in for you.
Lily, hope your scan results are reassuring.
Fresta, I thunk you are right. Ironically being treated is going to be less stressful than "waiting" while not being treated.
Waving to everybody else.

Oh and fresta once the drain is out, you will feel so much more yourself! The arm will take some time. Just keep stretching.

Rust, hoping you get good answers tomorrow. It's certainly true that, for most people, a mastectomy makes no difference whatsoever to survival odds. It's impossible to die from a lump in the boob. Fairly rarely, cancer can come back in the chest wall, even if a boob is missing. Or in the remaining skin. And, otherwise, for a small number of people, the cancer is already elsewhere, (but hiding) so it doesn't make any difference if a boob is removed. So it's really major surgery for no gain, for most people.
But it's really important that you explain how you feel to the team. Only you can know what would give greatest benefit to you. Most people these days go on to live a long and healthy life after a diagnosis of breast cancer. And your team can explain how they plan that for you.

Thanks for asking. My chemo was fine, and I split my time between MNetting browsing on my iPad and dozing. Dh normally comes with me but I was glad to be on my own. It would have been hard to entertain visitors. My temperature went up half a degree with the herceptin but is fine now, so no immediate side effects. The paclitaxel was fine too. It's quite a low dose when given weekly. I think I got 80 mg/m^2. I have to admit I was expecting higher but I shall put my faith in my onc, she said it is as effective as docetaxal. Looking at the protocol it is particularly indicated for frail patients. I shall try not to be insulted!

I hope everyone going through chemo and rads is ok. Fresta I hope that drain is out soon, and rust I hope you get some reassurance from your appointment tomorrow.

Well the drain is out! That was not a very pleasant experience, it was quite painful as part of the tube that was inside me was wider than the bit on the outside so pulling it through the hole was very sore. I was shocked at how much went into the armpit from the incision, it was at least 20cm long. Anyway, I have been able to get out for a little walk now and feel better not having to carry it round with me. My arm is still very uncomfortable but I expect it will get worse before it gets better.

Thanks mysilly, I'm glad your chemo was OK

Royal, I know what you mean, when I was leaving the radiology department after having my wire fitted last week, the radiologist said the next time I see you will be in September for your first annual checkup! What a horrible thought! I know the checks are necessary but they just seem so stressful and the last thing you want to think about after almost a year of treatment.

Amber and mysilly thank you. I hope you are both ok. Saw the surgeon today and asked lots of questions and he really feels a masectomy would be of no greater benefit. I have until the morning of the op to decide (Thursday). However I have noticed what feels to be like another lump in the same breast around the nipple which I insisted he have another look at today. It was late so no option for a biopsy so he took a needle sample (ouch!) to send a sample of cells to cytology so hopefully we will no whether or not it is malignant by the end of tomorrow. My first thoughts were it might be bruising from the original biopsies but it is in a totally different place (original lump is on the outer side of breast). Any experience? If it is malignant I will have to have a masectomy. Think I will fall apart if it is,this bloody cancer must be rampaging in that case! Also he is going to send me for genetic testing so potential for more massive surgery on the horizon. Oh and I'm being induced on 13 May... Feel so sorry for this poor baby. I haven't really spared him a thought since I found out about the bc and now the poor mite is being evicted early because of it. Just feeling it's all so unfair. This time a month ago I was so looking forward to my maternity leave, spending time with my 4 year old, a new baby, summer coming. Now everything is just so shit.

Big hugs rust it is crap but this is the worst part, once you know exactly what you are dealing with and have a treatment plan it will start to get easier. Hopefully the new lump will come to nothing

Rust I had an induction at 38 weeks, I think your baby will be 37/38 weeks in mid May. It was fine, no special care care baby unit needed. She was a bit little but so was dd2 who went to 39 weeks. Dd1 is now 6 foot tall and taking GCSE's. Babies are considered full term at 38 weeks.

I hope your new lump amounts to nothing but once you know you can plan onwards. I agree the needle biopsy is ouchy. I had one to sample my lymph nodes and was told I didn't need local anaesthetic, I thought I did. Good luck for your surgery on Thursday. Try not to worry about future treatments. Chemo isn't all bad. I'm on chemo but my plan for today is to take a lovely walk in the sunshine. I haven't had any side effects from this week's paclitaxel.

Rust, you must feel really rubbish right now, but just try to look forward to your new baby and I hope your new lump is nothing, it might just be glandular as don't forget breasts go though all sorts of changes during pregnancy. Chemo is not all bad, you will still be able to enjoy time with your children and care for them

mysilly, enjoy your walk, I think I will join you, I need to get moving more and get some muscle tone back in my legs.

I had a torso scan on Monday - getting results on Friday,. Now, because I have vertigo, consultant has requested a head scan as well - so I am having to rush back from work to get that done this afternoon. Double scanxiety here! Hopefully the vertigo is just a SE from the chemo as I haven't had any headaches or anything else sinister.
Most annoying Cancer Research bill boards in London - "Cancer - London is coming to get you". I see this every day I pass through Liverpool St Station just to remind me that I have cancer