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.

Hey fresta. This will be quick as i am ina. Hurry.
I used this: deonat.com/product/deonat-aloe-mineral-deodorant-stick/
It is aluminium free and worked well!
Waves to everybody else.

Hi Pepper I'm hopefully about to start rads too, was meant to start 2 weeks ago but massive infection in one the wounds which had to be drained by the surgeon and then 3 weeks of antibiotics and 2 lots of silver nitrate to get rid of the over granulating bits have slightly delayed things. When I went for my planning appointment they told me to carry on using whatever I use now regardless of what it had in it! Interesting how different people are told different things, although it worries me who's right!

I chased up my referral appointment as it has been 10 days now and was told to expect a call or a letter in the next couple of days and that they were still within the 14 days. I pointed out that I was supposed to be seen within 14 days which was not going to happen and was told to chase in a couple of days if I hadn't heard anything. Not impressed as I am currently signed off with anxiety and this isn't helping.

rovercat I have to have rads to the armpit as well as the breast so maybe that's why the deodorant matters??
chewing I hope your referral comes through quickly - good thing you chased!
Thanks royal I'll look that up.

I've just seen a friend for lunch who is going to the breast clinic with a lump. She was told by her gp that the hospital are fined if they don't see patients within 14 days. I haven't heard that before. Chewing, that's very frustrating for you, it looks like they are not sticking to the guidelines. Keep calling.

Re rads and antiperspirant, I wasn't given any instructions about type, just told not to wear it during treatments.

Hi everyone
Chewing I hope you have a date by now. It's really horrible having to wait.
Pepper I hope your chemo goes ahead today and that those pesky neutrophils behave.
Ipso, I hope you are ok after your results appointment. These ones are always tough.

After chemo on Monday, my temperature was about 36 and on Tuesday too. But on Wednesday it jumped to 37.9 again in the evening, so I've now been told no more treatment until I'm fully better. They are satisfied that it's viral but said the chemo makes it harder to shake bugs. I'm actually going away for a few days at half term so a dose delay might be nice, but I would still prefer to crack on with my treatment.

I am fuming
It's almost 2 weeks since my 'urgent' referral and I've heard nothing. Called the doctors surgery and was given a booking office number to call as they said 'they've done the bit their end'
I called this number but it just rings and rings. I then went back to the surgery saying that it was not good enough, I shouldn't have to book my own appointment, this is stressful enough etc. I am now told to keep calling and their secretary will also keep calling to try to book something also!!

Update: they managed to contact the booking line. They are very busy and have a lot of referrals to get through. I shall definitely get a call on Tuesday to advise when my appointment is. I wanted to go away for a short beak with ds in half term so now can't plan anything and he will be asking me why we can't go away

So sorry you're having to fight so hard chewing. It's the last thing you need at a time like this. I suppose I'm lucky in a way that my symptoms were so dramatic that I was hospitalised so my referral was done and sorted before they could discharge me. I hope it's sorted soon.
I'm going a bit stir crazy waiting for my first appointment on Tuesday. I'm not well enough to work right now and have just been signed off for two further weeks and I'm annoyed that I can't DO anything at home either. Sorry. I know it'll get better but my body is just taking forever to get over the seizures and I'm frustrated by it. Still, at least on Tuesday I will have some kind of way forward to focus on!
Hope everyone is feeling well today and has a lovely bank holiday.

Hope your appointment goes as well as possible on Tuesday littlegrey .

I decided enough was enough and called the booking line again. After an age I managed to speak to the lady makking the appointments. She has confirmed that she will book me in for Thursday morning and send the letter today so at least I have an end to this waiting stress. I am however currently signed off until Thursday with anxiety issues so now I'm wondering whether I should get an extension to my sick note before then or wait to see the results - I'm sure it's going to be bad news though

So frustrating for you Chewy, I hope you get the call on Tuesday. I think they've see such a jump in numbers of people being diagnosed they must be struggling with the backlog.

How are you getting on with the wait Littlegrey? Hope time is not passing too slowly for you.

I'm back in on Tuesday to get the results of the OnctotypeDX test. I will FINALLY get an answer the chemo, until then it's just hanging over my head and I've no treatment plan in place. It's so frustrating and I just want to get cracking and get the chemo going, or not! Nobody replied about my question re the OncotypeDX so I'll just put it out there again - anyone with experience of it? Was it helpful/useful?
X

Sorry for typos - lunchtime with a toddler and my own fat fingers on phone!

Fly I didn't have the OncotypeDX test. They decided on chemo on the because I'm grade 3 and had 2 positive nodes. I think the test might help your team work out the best chemo regimen as well as decide if chemo is needed so I think the wait will be worth it, but I understand that being grade 3 is scary.

Chewingawasp hope you get an appointment soon. How are you holding up? I was referred the same day as you fri 13 th may, and I am a nervous wreck waiting and thinking the worst. I have my triple assessment at the breast clinic next Friday 3rd June and just want to get it over with. I am in Ireland (south) and was lucky to get an appointment so soon but I have days where I am ok and then think what will I be facing.
Hope to goodness you get an appointment soon

Hi Mysilly I'm also grade 3 but with 1 positive node so I'm not sure what their hesitation is. I suppose it's a good thing, rather than throwing chemo at me, I may be spared it, but if I fall into the 'not sure' category I think I'll ask for it. Also (cynicism alert) I suppose the test is cheaper than the chemo...

Sorry Celendine you're yet another one joining the gang. My mother and aunt were treated in Dublin for BC and had amazing care, for what it's worth.

I have an appointment for next Thursday morning so am going away to see family for a couple of days beforehand to give ds a bit of a holiday.
Celandine the waiting is just awful. I hope your appointment on Friday goes well.

Thanks Chewingawasp hope yours goes well too. Flychickie that's good to hear about Dublin , my head is wrecked from Dr Google my own silly fault! Hope we all get good news soon

Step away from Google. Repeat! Step away from Google!

Flychickie that made me lol I am going to have to as my head is like a blob of wax

Had my 2nd paclitaxol chemo yesterday. Great to be back on schedule so will take good care to eat well, sleep well and keep red and white blood cells up and working. Psychologically so much better to be back on the treatment plan.
Welcome to more new posters. Hope you get your treatments sorted out ASAP as it is so much better getting on to the road to recovery.
Dr Google is not good - best to keep to websites such as MacMillan, Cancer Research, Breast Cancer Care (or main group for your cancer) and realise that this should just be one year out of a long life and that a new normal will return. And even during treatment you can have fun!
And, of course, this is the best discussion forum!

Lily I'm glad you got your second paclitaxel done.

I have three more paclitaxel treatments to go, but I'm finding them a struggle now. I still can't kick the butt of this cold and have been spiking low grade temperatures in the evening for 11 days now (37.5-37.9, occasionally 38, blood normal apart from Hb of 95). I also have a slightly faster than normal heartbeat for me- mid 80's as opposed to low 60's. I'm really wobbling about having chemo and herceptin tomorrow. The nurses will check my temperature but the ear thermometer often under reads my temp because I have narrow waxy ear canals and my day time temperature is lower anyway. I also am getting very breathless on exertion but definitely don't have a chest infection. I think I need a break to heal my body but I don't know if the nurses will want me to have treatment if my obs are good. I know that it is better not to have dose delays. I'm very torn.

Lily hope you are feeling ok after your chemo

Silly dog all you can do is tell them exactly what's been happening and take their advice. Lots of people on here have had their treatment delayed or reduced it seems a bit haphazard how they work out how much to give us. I understand the worry though so hope it can go ahead

Hope everyone has enjoyed the bank holiday

So I've just got back from my meeting with the oncology team, still no answers - results of OnctotypeDX Thursday but chemo looking most likely.

I had a total meltdown, first time since diagnosis 2 months ago and the realisation has dawned that I'll be looking at at least 10 years of drug therapy. This is my new normal and I'm floored

Hi FlyChickie, sorry you have nothing definitive yet, I didn't have the OncotypeDX, my oncologist was very open about the borderline nature of my chemo need. He recommended it for I think a 7% increase in 5 year survival (how cheery..) which while below the 10% I think is the normal risk/reward threshold, my age (47) and young children made it worthwhile.

I think the new "normal" feelings ebb and flow. Sometimes the enormity is almost overwhelming, especially when everyone without cancer has simply no idea, or no real idea at all of what it's like to go through and have in your life. It'll be with us forever, overtly or squirrelled away in your head.
I'm trying to take each step at a time to cope. So today I'm feeling a bit brighter after chemo last week and am planning a lunch with friends on Friday. Then I'll think about the next cycle, then I'll think about rads.
littlegrey thinking of you today and your results and plan.
mysilly sounds like you are between a rock and a hard place, I hope the unit can give you some clear advice - I always prefer to be told what to do when I'm in that kind of dilemma.
lily hope you are ok.

I seem to have lost some focus in my eyesight a bit since Friday - can't read the words on the TV but ok with books and the laptop etc. Very dull though they warned me it may happen temporarily as my ears have been affected already. Thank goodness I only have 4 lots of chemo. I really do feel like they are poisoning me slowly, only hope the bastard cancer cells feel twice as bad.

I am recovering from a nasty infection. I am back on the capcitebene which is making me a bit achey and nauseous.

Hi to all, hope you are all keeping on.