Tamoxigang cancer support thread 54: A new thread for a new year!

[WhatWouldLeslieKnopeDo]

Welcome one and all to the wonderful Tamoxigang thread! May 2016 bring us all health and happiness

If you are new here, then an extra big welcome to the club nobody wants to join. The thread is for people with any type of cancer, and also those who are waiting for results. So don't be shy. We are more than happy to hold your hand while you are waiting for a diagnosis, and we will be here to celebrate or commiserate, whatever your news

No question is too big or too small, someone will usually have an answer, or an idea of where you might find one. You can laugh, cry, shout, swear, and, of course, eat chocolate it is a bit of a safe haven from the mad world of cancer, the head-tilting and talk of bravery, and all the nonsense that comes with this diagnosis :)

So feel free to introduce yourself. And oldies, feel free to re-introduce yourself if you'd like.

We only have one rule here and that is no Googling!

Sleepy please don't go away. It would be lovely if cancer was a breeze and we all whizzed through chemo whilst holding down a job and maintaining a perfect home and no-one got mets. But it isn't like that for many people. Chemo is not nice. I'm glad your reflexology was lovely. My cancer centre offers complementary therapies. I have booked any yet, but I think I will. I hope your AD's kick in soon.

Fresta I hope your dd is OK. Secondary school transfer is horrible when you do not get what you want. My dd1 missed out on grammar by a few points too, and it can really knock a child's confidence. Seeing parents going through chemo is scary for children too.

Sleepy I'm sorry you're feeling down and that you've had a hard time with side effects. Definitely ask for more anti-sickness and for something for the cramps. Please don't feel you have to back off, though if you need time away that's fine it's a support thread for all. I'm sorry, I'm never very good at knowing what to say when people are struggling. But please post here whenever you need, and don't worry about being negative. Cancer is shit. Especially secondary cancer.

I'm glad reflexology was good. Hopefully the crying was therapeutic. I hope the side effects ease off soon. Sending a big hug

mrsrhod thinking of you and hoping you have some nice distractions from check up anxiety.

royal good that today was more comfortable. I hope they can help with the pain.

Mysillydog I had vein issues too. If I'd had more cycles they would have recommended me for a PICC line. There were a few occasions where they almost gave up, but they always found one in the end. It's worth asking about a PICC line or a Portacath, to save them faffing about stabbing you each time.

fresta both elbows were useless by the end of chemo. For the first year or two afterwards blood tests were a bit of a struggle. I always warn them that I've had chemo. Now my veins are better than they were before so hopefully yours will recover!

Sleepy please don't back away from the thread unless it's because you want to. We're here for support through all the bumps and bruises - physical and psychological. Your treatment sounds really tough-going, I hope they can do more to alleviate the SEs. Gentle hand squeeze to you...

Royal I hope your rads continue ok this week. I'll be following in your steps after Easter with a four -week course, so will be picking upp tips...

fresta hope things turn out well for your dd's school options and that decorating plans make a fun distraction from any worries on that score - and from the next chemo.

Leslie I've recently got into Parks and Recreation and have a whole new appreciation of your username!

Mysilly I hope things improve on the veins front. I had a funny conversation with the nurse at my last chemo. She was incredibly gentle and softly spoken but her eyes lit up with vampiric glee when she spotted a decent vein. When I joked about this she confided that at family events she would sometimes get distracted by her body-building brother-in-law's bulging biceps and their stand-out veins; he'd be chatting away and she'd just be thinking, 'Ooh I could get a whopping cannula in there!'

It's taken me longer to bounce back from this last FEC but it feels good to have got it done. Can't sleep so listening to Donald Trump's Super Tuesday progress on the radio - not that restful! Hope everyone else is getting a better night - waving to everyone.

dinster I hope you feel better soon, but good that you've had your last FEC. Donald Trump definitely not soothing! I hope you managed to get some sleep. And yay for a fellow Parks and Recs fan

Hello Dinster good to hear from you. Hope you get to feel much better.
Dunno if I would consider anything to do with Tump to be good
Thanks everybody for the mentions. Today's session was less problematic. It is either that or I am getting used to the procedure! I do feel ever so slightly achy because of the position duirng the rads but it is nothing compared to the chemo.
Waving to everybody.

Just about to get up for work but wanted to pop on and send a gentle hug to Sleepy. agree with all that has been said above about this thread being here for all of the times we need it.

I am not sure of this is the place as I don't have cancer, my DP was diagnosed in Sept with Germ Cell tumour , it was found in his lungs, pelvis and brain and he was given a poor prognosis of 50% chance of curing it. He had treatment at Nottingham which from what we can tell is a relatively new treatment that has an improved response (60-70% cure) , he had pretty intense chemo over 3 moths which ended on 29th Dec and from about halfway through his tumour markers had returned to normal. He has had follow up Ct scans and MRi but we are yet to get the results (CT scan was done before last consultant appt but scans had't been sent to him) so we don't know what is next. He has returned to work in January and has managed pretty well apart from being tired generally up until the last week or so where he is really struggling, so I guess I am just wondering if this tiredness is in the range of normal ? He is seeing his consultant next week for more blood tests and hopefully scan results. Sorry if this is not the appropriate place to ask or if I have used any incorrect terms.

Royal, I'm glad your rads are getting easier to manage.

I saw the oncologist yesterday. I'm going to be given a higher dose of GCSF injections for my next FEC, which is normally given to people over 80 kg because I got neutropenia on the correct dose. I'm also going to get an 85% dose of epirubicin. She also said that I will get weekly paclitaxel rather than docetaxel for when that time comes. Hopefully this will keep me out of hospital. My dh keeps assuming every time I speak to him that I'm about to say take me to A&E which is very unreasonable of him, because apart from last week I haven't been to A&E for over 20 years.

Hi blamethecat and welcome to this thread, even though I am sorry that you have to be here.

It is completely normal to stress about scan results. Chemo takes a long time to get over so tiredness is normal for most people, but obviously if he is concerned that his symptoms are getting worse he should mention it to the consultant next week. Hopefully then the scan results will be back and you will both have a better idea of what comes next. If the scan results are not back, then please make a fuss because it isn't fair having to wait a long time for results.

Morning blamethecat, you are in the right place, and hopefully you will have scans results soon, I'm waiting for delayed results too, it's very hard.

Mysilly, fingers crossed you have a less eventful round of FEC next time, sounds like your team are are taking good care to make sure you get through it as smoothly as possible.

I'm just riding out the FEC side effects now and trying not to stress about about other things going on, some sleep would be nice, but that's not been forthcoming this week, maybe tonight will be better without a dose of dexamethasone making things worse?

Hi Blamethecat
Sorry to hear about your DP but great that there is a new treatment available! There are probably several reasons for tiredness post chemo (not much fun for the body having to deal with a load of drugs). It could be low haemoglobin levels (I've had several blood transfusions of red blood cells) so perhaps the latest blood tests may shed some light.

Thanks for the replies, I will remind him to ask about the haemoglobin levels next week, I know they had been low and there was talk of a transfusion but his consultant didn't really want to do it until absolutely necessary so it didn't happen. I think we probably both need to improve our diets to eat more healthily too !

How's everyone ?
I had a oncology appointment this week, 2 years since I finished treatment. It was horrid and stressful being back there and they were running late but the actual appointment was useless. He just asked me if I was back at work, er yes nearly 2 years ago ! Asked how tamoxifen was going and that they now recommend for 10 years rather than 5,I knew this, I said if I get that far and he said oh you will. Then asked if I'd found any lumps, shook my hand and that was it ! Quite reassuring that they are not interested in me but I was expecting an examination at least. I turned down a day at my favourite school for that grrrr !

Good morning all.
mumto2 it does seem odd that they did not want to do any tests, but no news is good news I hope.
Is the mammogram a seperate appointmne then for these regular check ups?
Have a good day all.

It is for me, I have yearly mammograms and appointment with a nurse then alternate years with the surgeon and oncologist

mumto, I guess the oncologist wouldn't really be able to determine anything from an examination, and unless you have some symptoms or a scan shows something untoward then there's not a lot to discuss. It does sound a waste of time, but glad you are well and no news is good news.

Feeling relieved this morning as my nurse rang and there has been further response so they want me to have one more chemo before surgery. So relived to think it hasn't been rampaging away for the last 10 weeks. Have to meet with the surgeon on Tuesday to discuss options and for him to examine me. EEk!

Morning all. I've got a six monthly checkup this afternoon. It will be with someone on the surgical team. If I'm lucky it could be the surgeon who did my operation who is lovely, if I'm unlucky it will be the one who I saw last who conducted the entire post exam discussion without giving me time to put my top back on. That still annoys and upsets me now. I'm still a person, despite the scars. I've warned DH that we won't be accepting that again. Sorry, getting rather anxious.

At some point soon I'll have a mammogram too, it amazes me that these two appts are not linked because a quick feel really isn't very reassuring.

Mum2, what a frustrating appt for you. Interesting to hear they are recommending longer tamoxifen. My team haven't mentioned it yet.

Royal, how are the rads going?

Fresta, I hope your Dd gets into a school that you're all happy with. I'm so glad not to be doing this anymore, such stress.

Sleepy, I don't know if you're still reading but I'm sending you my very best wishes and really hoping for things to improve for you or at least hold steady.

Hi to everyone else, I'm sure I must have forgotten someone in the middle of something unpleasant so sorry. We have snow but fortunately the roads have cleared so I won't have to hike across town to the hospital later.

mrs i really hope you get to see your surgeon. It makes so much difference when the medical specialist is also someone you feel comfortable with. I also hope you get nothing but good news. Please come back and tell us all about it. I would think having an overall check up whee they do everything( scans, mammogram whatever) and let you know the full picture i stead of this segmented approach would be more reassuring. Is there some basis for having them all done separately i wonder?
My experience so far with the rads is not as good as I had expected:( i have a crampy muscle in my chest area which is really annoying me ( i feel it when i mive in particular ways) and I am not sure if it from the rads themselves( still too early I am thnking) or if i pulled a muscle when being positioned. That apparatus they lay you on to get you aligned and positioned is quite hard and though it is not long , the session is not very comfortable. They have been commending me on my ability to hold my breath as instructed but to be honest I just can't wait to get out of there, although they are a lovely team and try their best to make me feel comfortable. I am so happy it is the weekend now and I can forget about that !
fresta that is really good news you have there! Knowing things are working is so reassuring. Hope it keeps getting better..almost there now!
Everybody else: have a great day ahead.

Thanks Royal for your good wishes. It all went well, it was the surgeon who performed my operation. He actually looked very pleased to see us and asked after our Dd who he met 22 months ago when she came to collect me from hospital with DH, after surgery. What a memory.

He couldn't feel anything untoward and is requesting my year two mammogram. He asked if I thought I was menopausal, I don't and said next year he will do a blood test to check. At that point he may move me from tamoxifen to something else, possibly letrozole? I haven't heard that mentioned here recently so I don't have any knowledge of how people react to it.

It would be easier to have mammogram and examination all together with results on the same day, like in the very first appt. I don't know why they do it this way

Sorry to hear you're feeling a bit sore. It probably is a bit soon for it to be the rads but quite possibly the way you've been positioned. Like you I found the staff very kind but the whole experience very bleak, despite the loud music they played to screen the machine noise. Enjoy your couple if days off now.

Sorry fresta, didn't mean to ignore you. I'm pleased you have been reassured about your treatment. I'm afraid I can't remember what surgery you're having.

Mrs I'm glad your appointment went well and you saw your surgeon.
Mum2 I suppose it is reassuring that your oncologist thinks you are fine, but very frustrating if your questions and concerns weren't addressed properly.
Royal I'm sorry the rads are not as easy as you had hoped.
Fresta great news that you are responding well to treatment. Did you have tax treatment before FEC?

I've had two non-clinical hospital appointments. I got my prosthesis the other day, and the lady complemented me on my well fitting bra. So I guess that's good, although I suspect the bra intervention people here would disagree because it was a 34A whereas they would have me in a 30C - yes I am that small.
I also have ordered a wig. It was interesting to see how the fitters got into their jobs. The prosthesis fitter was a trained bra fitter and the wig fitter was previously a hairdresser and beautician.

Saw Oncologist today. I mentioned that I had noticed last night that one foot was swollen - so saw Radiologist. I then had an ultrasound on my leg from groin downwards. Fortunately no blood clots found and Oncologist said swelling was due to low albumen (i.e. Protein in blood). Panic over and I won't see the Oncologist again for 5 weeks!

Oncologist also gave me a recommendation for a hotel in Seville, where DS1 and I are going in May!

Hope everyone has a decent weekend without nausea, pain or scanxiety!

www.ncbi.nlm.nih.gov/pubmed/26943635
For those with mets, big study. If teams can safely remove the primary lump, it gives on average a ~50% greater chance of survival. Worth discussing with teams.
Waving to all, in the meantime.

Hi all, sorry for radio silence but was enjoying that post-chemo and pre-surgery time. Tried to forget about cancer. I wonder when we can start saying 'had' cancer rather than 'have' cancer. Anyway I had my WLE and ANC on Tuesday and got home from hospital today. Op went well, took a while to recover and got lots of morphine. Drain was removed yesterday as it suddenly became extremely painful. Once it came out felt a lot better. Am back in with consultant on Monday to discuss pathology results. For some reason I assume they'll be fine..we'll see. Radiotherapy the next stop - probably in six weeks or so. Love to all of you. Must read back. H x

Congrats on being home from surgery, happygolucky, and may your recovery be as swift and gentle as poss.
Waving to all, with slightly chocolatey hands...