CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

I have Echoes for Herceptin rather than MUGA scans, every 4 months. They did a baseline check before treatment because it's as important to track changes as it is to measure absolute values. I had my last injection today. It's a bit scary now that part of treatment is over. I get a final echo in 3 months just to check all is well.

Delurking after a break. I've skimmed through the most recent posts and I'm so pleased leslie that the surgery has done you good, hope you continue to make a good recovery

mrs hope you get the all clear from your mammo

mysilly it's a big step to take leaving the hospital after your last treatment and you will probably feel a bit lost but hopefully that will pass in time

chewing I cannot believe how badly you've been treated. I really hope the herceptin does you some good.

To answer your question, at my hospital you get a taking echo before starting treatment and then 1 every 4 months unless clinically it's decided you should have them more often. When I was on herceptin in 2014/15 my ejection fraction (the key heart function that is affected by herceptin) was always 60 or 60-65% (anything over 55 is 'normal I think) so I only had 3 scans over the year

This time round I started off at 72 but it has kept going down so I've had quite a few scans, the last one being yesterday. I'm now down to 45% so suspect when I see the oncologist later today he won't go ahead with my next dose. I think I feel ok but have developed a chesty cough every morning when I first get up and have occasional bouts of breathlessness so there may be something going on.

As for everything else, we finally got our family holiday over easter and came back from the states on Tuesday (so my heart scan first thing yesterday was a lovey welcome back to reality!) We had such an amazing time although eating out wasn't great with DD due to her milk allergy and she also had one of her worst reactions to the point that I was about to use her epipen . But she was ok although we did have to take her to a Dr just to be sure. Now we have the fun job of trying to claim it back under the travel insurance!

I'll try and do a proper catch up later but waves to everyone old and new

Hi, hope everyone's as well as can be .Sorry to see new names here .

Halfbaked I used Avoplex oil (opi) on finger and toe nails . I didn't use it from start of chemo , probably 2 or 3 weeks in as they had started to show signs of damage. I doubt it would miraculously cure your problems but hopefully would help repair and prevent anymore damage .
As for feet , i used those packs from £ shop fairly regularly before then probably every other day during chemo. You can do your own with lots of body butter / proper foot cream and cling film.

Halfbaked, the hospital I’m at is doing a trial of onicolife nail drops, a couple of people seem to be doing well with them – you can get them online. Otherwise I’d suggest nail oils, nail hardener and handcream. I’ve used dark varnish on my nails, lots of cuticle oil and cream and they’ve held up quite well. Most of my eyebrows dropped out the other day though.

Yet again flummoxed at the differing treatments, this time for heart scans. It really is a postcode lottery isn’t it? I’ve given up on the bone density scan, the oncologist refuses to refer me, saying the current guidelines are out of date. There aren’t any new ones, and the BCN said it was too late as I’d already had the first bisphosphonate treatment.

Mysillydog, that’s great that you’ve come to the end of your treatment.

I had my rads planning scan today, so I’m now sporting the tattoos. Any rads skincare recommendations? I was chatting to a nurse yesterday who said that there isn’t much research on what works, the hospital advise aquaeous cream only, no oil, avoid hot water/sun/etc.

To be honest, I’m feeling totally fed up of this now. I don’t know if I’ve hit a wall or what. I keep thinking that it was just two years since DP was diagnosed and since then life has been pretty rubbish. I can see an end in sight for treatment at least, but I dunno, I feel a bit lost and battered I suppose. I’m feeling a bit rubbish physically as well, very tired and I seem to have picked up a bit of a cold, desperately hoping it won’t affect this week’s chemo tomorrow. Thanks to a friend who came to see me at the weekend complete with her virus! Grrr!

On a more positive note, DS will be getting some support via the hospice soon. We met with a counsellor yesterday and they’re going to arrange it, so at least that’s something.

Sorry to see more new people here, but hello to you!

flippyneck, you're right there's no rhyme or reason as to the variations in treatment we are getting. But I'm not getting any treatment at all this week as the oncologist is not happy with how my heart is getting worse with each scan. So I'm being referred to a cardiologist for more tests and then depending on what they say will determine if I stop herceptin altogether or just have a had a short break. I know I'm not the first person on here this has happened to and I'm sure I won't be the last.

As to being thoroughly fed up with it all I totally get you. Whilst I haven't been through the horrors you have it will be 3 years in July since my first diagnosis and I just don't seem to have had a break since then.

I hope your cold doesn't develop into anything nasty and you can keep on track with chemo. The last thing you need right now is a delay

Good news that your DS is finally getting some help though, I really hope it helps him

So, I have my first oncology appointment on Monday and it looks as though I will be starting chemo shortly after.

It seems that the cold cap will be discussed but I am so unsure on whether to give it a go or not. At the forefront of my mind is the fact that my 4 dcs don't know about my diagnosis yet. They know that I have been in hospital but think that it was for a minor op! So, if I am going to lose my hair, then I will obviously need to telll them? I don't even know how to go about this. They are 3,6,10 and 11.

Thanks minty - I think three years of cancer hell is horrors enough, you've been through the mill as well, along with too many other people on this thread. I hope you see the cardiologist quickly and they can help. One of the many ironies is that there is barely any incidence of cancer in my family but lots of heart and circulatory disease, so that's another fear to add in to the mix.

Dairy, I've had a very good result with the cold cap, and I've used it every week for 9 weeks (so far). If your BCN/oncologist are happy for you to use it, it's worth a go IMHO. I was worried about what my DS would think about hair loss; he was a bit shocked at first, but came round to it. I have a wig just in case, but hoping I won't need it. Happy to try and answer any cold cap questions.

I was given the MediKids breast cancer book, which is a comic strip type thing, it was very useful for explaining what was happening to DS. I think there's a few other books for younger children too.

You might have seen from earlier posts that a few of us have struggled to get support for children directly, but the charities can help you with some support about how and what to say to children.

My onc has confirmed that echo will be done every 3-4 cycles or earlier if there are concerns. This fits in with what some of you have said so that is reassuring.
Hope everyone is ok Leslie hope you are recovering well.

Morning all just checking in and sorry to see new faces, lots of love and light to everyone . I can't remember the last time I posted but pop in to read. 1st year mammogram out the way and clear, surgical review all good and am going back in 6 months to discuss lifting the good boob at some point. My fab breast care nurse referred me for physio as my shoulder kicked off during rads so finally improving and also to the psych bods at my unit due to 6 month wait for counselling via gp which I waited 3 mths to find out . It was a very good appointment but came out with antidepressants as although I am functioning she thought I was depressed ( when she listed why I couldn't disagree!). I think going back to work and all the shit that happened is what finally tipped me over and am bloody cross that it's led me to this, however I have a new job currently working my notice and it was great to go f&$k you. On the plus point just back from a lovely holiday in Spain flew out the date I was sitting in the chair for 1st chemo which felt a bit odd, joint pain from anastrozole marginally better and the hair is really on a frolic now just need a fringe it seems to need to grow up before it goes down . Sorry for the waffle and love to all xxx

Good morning everyone

Tw1nset are you all set for Monday? I hope you're having a relaxing weekend

dairy good luck on Monday too. Do you know what type of chemo it is? Most of the posters here have breast cancer so someone will almost certainly have had the same regime and be able to advise on side effects etc :) sorry you've had to join us!

Dosey I'm really sorry about your MIL's diagnosis. I hope operation went smoothly and that she is recovering well. Camera down the throat is usually called endoscopy or gastroscopy. It's good that your DH has opened up to you. Everyone copes differently with a diagnosis and there's no right way of dealing with it, but it can be difficult when your coping strategy is completely different :)

Daxaki good luck with your other scans. I have had only one PET scan, when my recurrence was first identified. They could see lesions on CT but used the PET to confirm that they were definitely cancer and check for traces elsewhere. Since then I've just had CT scans to monitor my progress.

minty I'm glad you managed a holiday, but sorry about DD's allergy problems I hope the travel insurance repay the money without too much hassle

Flippy it's all just shit sometimes. I have nothing useful to say, but I do understand. I'm glad DS is getting some support. I hope it helps him. Did you go ahead with chemo yesterday? I hope so. The delays are very disappointing when you're counting down to the finish date!

I am recovering very well. I was a bit poorly earlier this week, either a bug or something I ate disagreed with me, so my chemo has been delayed until next week. I'm still a bit sore and achy, and I'm on a restricted diet and need to be careful lifting things etc for another six weeks. But honestly I feel better than I have done in ages. I'm sure partly because of the chemo break, but also because the surgery has relieved all of my bowel issues. I should've done it years ago!

I hope everyone has a relaxing weekend. It is sunny here at the moment, though some grey clouds are looming.

helly cross posted. Congratulations on the new job that's great news. I'm glad you've got some support via the BCN and I hope the antidepressants help. Six months waiting list is awful definitely better to be sitting in an aeroplane seat on your way to holiday than those sweaty chemo chairs

Good morning all!
Leslie - so good to hear you are recovering well and the surgery has done what you wanted it to. Glad you are over your upset tummy and feeling better.

Hello to new ladies - sorry you are here but, in the roughest of circumstances, this is the kindest, most supportive thread.

Hello to everyone else. It seems like everyone is having to deal with a few struggles at the moment and I really hope things may smooth out a bit soon.

Freddie - I noticed you are quiet. Thinking of you, hope you are OK.

I just wanted to check in, I had my mastectomy on Weds so am sat here in my sexy surgical stockings and my drain but not feeling too bad physically or emotionally, apart from thinking about what may come. They haven't diagnosed anything other than DCIS yet but have emphasised how likely it is they will find invasive cancer due to the size of the area affected, so that is giving palpitations. My kids have been away with my parents but are coming back today I fee very emotional about confronting them with all of this as I doubt the drain will be out before they are back. I know they are little though, so it probably won't mean much.

Meanwhile, it is a beautiful day so I will try and soak some if that up before it clouds up. Wishing everyone the best this weekend and a little extra love to help keep you topped up xxxx

Haven't read up to date but just wanted to wave and say hello I'm still here while the laptop has charge..
Will try and catch up in a bit.

Deutsch I'm glad your surgery went well. Fingers firmly crossed they don't find anything invasive. I hope you get the drain out soon. They're so uncomfortable. When do you expect to be allowed home?

fluffy waving back. I had wondered if you were still reading. How are you?

And waving to anyone who is lurking but not posting. Some people have been very quiet recently so I hope everything is as OK as it can be

Hello lovely lacies...
Hope all are as well as can be expected... I've been in Spain then in back to school "where's the summer uniform" mode followed by brat birthday party hell this weekend...eeeek!!
I'm still in limbo land...no results from oncotype STILL... my BCN is unperturbed, I'm trying v hard to be as sanguine as her...um except it's slightly tricky as it effects me that little bit more than her.. ahem!! Anyway hopefully I will hear what happens next on Friday.. .tick tock...im.not back to mainlining beta blockers yet tho!!
I've just been reading thru...hello to the newly diagnosed and wish i had met you under chirpier circumstances.
Deutsch Hope your reunion with your children went well...it must have been lovely to see them again. And fingers v firmly crossed they don't find anything more than DCIS...
Leslie.. .really glad you are recovering so well
Flippy...im so pleased your son is finally getting some help but otherwise I completely get why you are so fed up...youve had a sodding nightmare and from all.your posts you've been amazingly stoic...unless you're in London I can't give you any help but have an enormous hug...if you are in London pm me with any ideas of what I can do to help...anything from gin to playdates are on offer!!
And everyone else a big hello and wave...
Xxx

Bugger wrote a post and lost it, too tired now
Hello to all, particularly the new recruits, this is the thread you don't really want to have to join, but it's so very welcoming and helpful.

Thanks for all the nail tips, despite trying some oil and hardener I fear it's too late as 4 nails have lifted off the bed.... blurgh
Seeing the surgeon tomorrow so will update and try writing my post out again!
for anyone having a rough time.

Halfbaked sorry to hear they're coming away is there an equivalent of podiatrists for hands do you think? My oncologist has recommended I see one for my manky cetuximab toenails. Maybe there's someone that can help with yours! Good luck with your surgeon today.

freddie sorry that you're still waiting for results. Fingers crossed for you to find out on Friday. I hope you had a relaxing time in Spain. I don't envy you the birthday party

I've been awake since 3am because my hip is really achy. I'm not particularly concerned as my CT said my bones were fine, and I've had issues with my lower back/pelvis since my first surgery. My back tends to take the strain from my weakened core muscles. I'll mention it at my surgery check up if it persists though. What it really needs is a good stretch but I'm now allowed. Wahhh

Hi all, just a quick question. How long do the NHS take to get you the results of mri scans? I've been offered a cancellation tomorrow on the nhs but I was going to pay 500 quid for a private scan as I've been waiting for 4 weeks now and I'm going crackers. If I have the private scan them the results will be immediate; I'm just worried that the NHS results will take ages and I'm in a bit of a state.

I've had good news MRI results 2 weeks down the line and bad news ones quicker. Sorry I know that's not much help. Could the consultants secretary advise you on the wait?

Anna I would ask the MRI department which you are going to, ask them when is the soonest the results will be available and can you have them on disk yourself (we pay £30 a time for this). Ours are available for neuro about 3/4 hours later, sometimes the next day, but very quickly.

Depending on the specialty though, they may not be read, interpreted and acted on on the same day- you would need to check with the consultant when this is likely to occur. Ring their secretary and ask.

You need to ask lots of people to find things out, and go to PALS if you can't navigate the maze. The answers are out there though.

Thanks IsaDora and Four Eyes. I did ask the Mri dept and they just said to ask the radiographer but by then it'll be too late to back out if they say two weeks. I'm pretty sure it will be bad news so I'm guessing they'll get back to me before the two weeks.

It really pisses me off that if you can pay you can get the results immediately. The waiting for tests and results is so stressful.

I don't know what you are being assessed for, but if it is for an MRI and you are still treated in the NHS, even if the scan comes back the same day, it doesn't mean it will be considered by the team the same day- in our case, we have to wait for team meetings which only happen once a week, so often the result (by letter or phone) is a week or two later than that.

If you think speed is of the essence, it may be worth going privately but only if it will speed-up decision making at the other end, otherwise I would take the cancellation myself- the NHS has been excellent for us diagnostically/treatment wise even though there has been the odd wait.

Good luck with it all.

I'm having my spine scanned as I've been having pain in the bone in several areas and I'm worried that it's secondary cancer from the breast.

I've agreed to the nhs one now so I'm just hoping that it won't be more than a week for the results.

Anna awful waiting then. Hope your scan goes ok, don't be afraid to pester for results.

Thanks, Foureyes.