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All the fives... Tamoxigang cancer support thread 55

926 replies

WhatWouldLeslieKnopeDo · 12/03/2016 14:01

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.

OP posts:
Boobz · 12/05/2016 04:00

Rust - getting your tumour genetically profiled is different from seeing if you have the BRCA gene.

The tumour's genetic profile can tell you, with a lot more accuracy, which chemotherapy regimen is going to be more successful in killing the cancer. So it's a bit less trial and error - you have more data and stats to go on to pick your treatment plan in the first place, because the oncologist will be able to see what the structure of your tumour is, and based on past studies, see which chemos have had more success treating that genetic make up. Without it, the oncologist can still do the job (as most still do, due to the test being expensive and not covered in a lot of cases), but with it they just have more knowledge at the beginning, so don't have to test to see if things work as much - they can reduce the number of options to those most likely to work, straight from the off.

The BRCA gene test is to see if you have the genetic mutation (a simple blood test) which shows you are more at risk of developing breast cancer (and ovarian cancer too) and thus can give you more help in deciding to have a double vs. a single MX, and also whether to have your ovaries removed, as well as other implications (like any daughters' increased chances of having the gene too, to spark extra screening etc). Some clinical trials need you to be BRCA positive.

Fasting has been shown to shrink tumours in mice, and is starting clinical trials in humans soon. It's not something you would do instead of more established methods of treating cancer, but I read enough into it to make me feel that doing a 14 day fast after my treatment had been completed, that it couldn't do any harm, and would actually make me lose the chemo weight I had put on, as well as hopefully starve any stray cancer cells which were still in my body.

I went private, mainly because I lived in Rome and I didn't want to access the Italian public health system. It does give you access to some drugs not available on the NHS as they don't have to go through the same hurdles with NICE guidelines - once a drug is approved (not sure if it is FDA or other - Amber will know) they (BUPA or similar) can use it, which is sometimes 12-18 months earlier than the NHS due to the extra hoops the NHS have to jump through before it is cleared for patient use. BUT. In general, I think we all get the same thing, more or less, it's more about waiting times, waiting rooms being nicer, chemo wards being more private etc.

royalmama · 12/05/2016 06:53

Good morning all.
This is relevant:
t.co/HusTxAG1BS

rovercat · 12/05/2016 10:13

Morning everyone,
Leslie so sorry to read your post but I hope you're feeling better today and I hope that your team are able to get a good plan in place for you.

Rust I've had all my treatment privately as I have medical insurance with my job and I've found its been very good. I've had all my blood tests and chemo at home (although you can go into the clinic if you prefer) and I found that having it all at home meant that I could work right up until the time the nurse arrived and then if I felt ok I could carry on afterwards. The clinic is about a 30 min drive from where I live so I would have needed dh to come with me to drive me home after chemo so being at home meant that he could work as normal and if I felt tired I could just stay on the sofa and have a nap. As Boobz said I think you may get drugs privately that aren't yet available on the nhs so it might be worth talking to your oncologist about that too. Try and enjoy the precious time with your new baby, although cancer is horrible you can have some lovely baby cuddles and enjoy some spoiling from your family.

Fresta · 12/05/2016 10:47

Morning everyone

Rust glad you are feeling a little calmer now. As others have said your report doesn't sound that bad to me. Lymph node status is the biggest predictor of outcome and you don't have many nodes affecyed so that is good!

I've just recieved a copy of my pathology report, my oestrogen status is positive and is says ER8 on the report. I have had a quick google for an interpretation of this and it seems to be the maximum score possible. Does anyone know what this indicates in terms of treatment, does it mean that tamoxifen is likely to be more effective or less?

rovercat · 12/05/2016 10:58

Hi Fresta my oestrogen was positive too and I'm a 6 and I've been told I'll have tamoxifen for either 5 or 10 years. I've also got to have herceptin till Christmas as I'm her2+ aswell. I was given a booklet about understanding your pathology report when I got my results which was helpful as I'm sure there was a lot that I didn't take in or have forgotten. It's produced by breast cancer care and it might be on their website so you could download it if you wanted a copy.

royalmama · 12/05/2016 11:19

Fresta, I distinctly remember my oncologist telling me that the higher the estrogen level, the more likely Tamoxifen would work.

pepperrabbit · 12/05/2016 11:57

I don't think I have a pathology report Hmm but I do have a summary at the top of my last post appointment letter. Mine is ER7 and PR7 and Her neg. T2 N1 M0.
I have been recommended to go onto Letrozole after having ovarian suppression (so I need to be post menopausal). I'm 47. The way it was explained to me is that it's so hormone receptive I need to be stopped from producing hormones, then Letrozole would be my best option for long term protection.
I don't know if it's a progesterone thing though!

pepperrabbit · 12/05/2016 12:02

Slightly different question while I prevaricate from doing my injection
Has anyone had tinnitus from chemo, I developed an eye twitch after the first cycle which I still have and have had a very high pitched ringing in my ears since about day 3 of this second cycle. Is this a passing thing or am I stuck with a variety of twitches and impaired hearing till the chemo is over??

mrsrhodgilbert · 12/05/2016 12:05

Fresta, my ER level is also 8/8 hence the tamoxifen being the best treatment. I've been told only five years but I'm going to keep questioning that.

I'm having another very heavy bleed, the third one in nearly two years so will be off to the hospital for more scans and maybe another hysteroscopy. It's a SE of the tamoxifen, thickened womb lining and ovarian cysts. It doesn't happen to everyone so don't worry if you're about to start it but as it generally stops your periods you need to report any bleeding. I might wheel out the BUPA cover for this, depending on what the plan is. The only thing that concerns me is having my cancer care on the NHS and then potentially using BUPA for this cancer related SE. I'm thinking if they start to suggest hysterectomy.

Fresta · 12/05/2016 12:06

Hi, thanks for the replies everyone. Pepper, lowering oestrogen levels makes sense to me, and I did mention this to my BCN as I was worried about periods returning etc. but she said it didn't matter about the levels of hormones in the body, it was about stopping those hormones attaching to the cancer, which is what tamoxifen does. I still would feel happier if I had less oestrogen though.

mrsrhodgilbert · 12/05/2016 12:11

Pepper, that's interesting. I'm two years nearly on tamoxifen, 52 and think I'm still pre menopausal. It's a bit hard to be sure as I don't have periods any more but I haven't really had any meno symptoms. When I first had this heavy bleeding (see above) my GP suggested ovarian suppression to prevent it. That hasn't been mentioned since. I'm to have blood tests next year to check my hormones and the plan is to move onto letrozole. As I'm now going to be seeing a gynaecology consultant in the next few weeks I can ask more about this, all information is really useful so thanks for your post.

rovercat · 12/05/2016 12:22

Mrs Did you have any tests before starting or while you've been taking Tamoxifen to find out if you are still pre menopausal? My periods stopped with the first chemo and haven't returned but in five years time I'm wondering how I'll know if I'm still pre.

Fresta · 12/05/2016 12:32

My notes say I am to have a hormone test in two years to check for menopausal status. I'm only 43 though so don't expect to have a natural menopause for about 10 years. I wonder how they tell the difference between menopause and chemo induced menopause?

mrsrhodgilbert · 12/05/2016 12:45

I had blood tests as part of my pre op but I don't know if any of them were testing hormones. Prior to diagnosis I was still having periods, although very light as I had the mirena coil. I haven't had a single blood test since, which is two years this month. At my 6 month check up with the surgeon a couple of months ago he said they would do a hormone check in 12 months. I'll be almost 53 by then so in the right age range. They want to put me onto letrozole. I don't know if or how they distinguish between natural or induced menopause. Fresta, tamoxifen brings on the menopause too, not just chemo.

Just as an aside, I started tamoxifen whilst having rads. That seems to have changed now, I think they were wondering about the order two years ago and now they appear to have decided rads before tamoxifen. I hope it didn't make too much difference.

rustcohle · 12/05/2016 19:53

Hi all thanks for the advice on prIvate treatment. I checked today and all chemo and rads are definitely covered and we also get the £100 a day if I decide to have nhs treatment Mrs so that's a bonus but I think if I've got the private cover I may as well use it. Also the oncologist I have an appointment with also has a private clinic so I presume I can see him as a private patient. Boobz thanks for explaining about the brca and genetic tumour profiling. I had no idea. I did try to speak to the oncologist today about it but his secretary said he would want to see me in person. She did give me an earlier appointment though for the 17th of I can make it so hoping baby doesn't take too long to make an appearance! I'm keen not to delay getting started. The genetic profiling is something I would definitely like to do but would I have to wait for the results before starting any chemo? I'd be concerned about that as want to blast the nasty little blighters asap.

Boobz how did you do your fasting? Presuming you ate much reduced cals rather than nothing at all?! Also did you do it throughout chemo or just at the end?

I'm recovering ok from surgery I think. I have lots of fluid still but I've been told this is normal and will resolve itself. My inner arm feels a bit tight by my elbow joint when I straighten it though so hoping that sorts itself out. I'll keep doing my exercises. Fresta how is your arm now?

Anyway we are off to hospital tomorrow so I will keep you updated as to the arrival of baby rust! Love to all x

mumto2andnomore · 12/05/2016 21:43

Best of luck rust can't wait to hear about baby rust ! x

mrsrhodgilbert · 12/05/2016 23:29

Hope all goes well tomorrow rust, how exciting. X

Fresta · 12/05/2016 23:35

Thanks for asking Rust, my arm is feeling a little easier and mobility in it is improved, although the cords are still there they don't feel as tight. I can raise my arm to alomost the same postion as my other arm now. I have some slight swelling and pitting edema of the the inner arm area though which I am really worried is going to turn into chronic lymphoedema. Waiting for an appointment about this. It sounds like you might have a little cording too, keep stretching it, it does seem to help. Looking forward to hearing news of baby.

Mysillydog · 13/05/2016 06:50

Is your induction today? Good luck if it is. I shall be thinking of you.

royalmama · 13/05/2016 07:01

Good morning all.
Rust, hope your induction goes smoothly. Can't wait to hear all about your new baby! Best wishes.Flowers

royalmama · 13/05/2016 07:15

Fresta, so glad your arm is feeling better and hopefully your concerns re your arm put are dealt with efficiently by the doctor. You know, It took me this long to feel "normal", so just keep up those exercises!
Re menopause and all, i am premenopausal and my periods stopped when on chemo and never came back. As i am on Tamoxifen now, I guess that is it for good. I need to ask too how and when they will know when I do become menopausal for real.
So far the SEs are average but definitely bothersome: fatigue, achy muscles and some swelling in my hands and feet. I am seeing an orthopaedics doctor about an issue with my ankle which is making me limp and i don't know if it is the tamoxifen or a sprain as i started walking and exercising around the same time.

Lilymaid · 13/05/2016 09:31

Good luck/Congratulations in advance to Rust today.
I went back to hospital yesterday for second attempt at starting chemo again. Fortunately this time, although platelets were still low, Consultant was around to give go ahead. So Paclitaxel No 1 went in. I also had X Rays to my aching pelvis/femur. Agony at the time! Lovely friend collected me and we had tea and a chat then she made sure I had dinner. For the first time in weeks I ate it all!
I was prescribed more Onansetron for the nausea (constipation here I come) and CoCodamol for the aches ... And for the first time for a while had a good pain free night and feel fine this morning.
I think, that like most of us, I feel bad when I am not on the treatment trail so now i am back on a chemo I feel much better generally. So affirm what we all say about receiving treatment plans and starting treatments being a psychological boost.
Love to all from a rather more upbeat Lil!

royalmama · 13/05/2016 09:52

Hi lily. So pleased for you!

WhatWouldLeslieKnopeDo · 13/05/2016 09:57

Glad to hear you are feeling more upbeat Lily, and especially to hear about a comfortable night. I hope the paclitaxel does not cause too many nasty side effects.

Rust good luck today! Flowers

There were various newbies on the old thread who haven't followed us over so if you are still reading, I hope you are doing OK Star

I don't have much to report really. I've found out my chemo regime. It will be administered over 48 hours, but thankfully I will have a port so I can have a pump to wear at home rather than being stuck in hospital. It's also going to be every two weeks rather than three. So a bit intense, but hopefully it'll stabilise the little fuckers.

My oncologist is quite relaxed. He doesn't think I would have had symptoms for six months or more, so it's lucky I had the routine scan when I did. He's not in a rush to start the chemo so I'm having a few weeks off first to get my head around everything and maybe have a nice holiday!

Love to all and an extra hand to squeeze for rust!

OP posts:
royalmama · 13/05/2016 10:10

I wanted to share this rather lengthy but very interesting article with those of you who are considering the likes of fasting and diet regimen changes. Nothing drastically new here, but there is much to ponder.
www.nytimes.com/2016/05/15/magazine/warburg-effect-an-old-idea-revived-starve-cancer-to-death.html?_hsenc=p2ANqtz-80sr0zBlKKD4xVCvCoUWRBQuHRZ_uvrTbG0pGRDdfberXXzhLnZ_e0LeGIsQdIU0qsDyBOCC2mgL-3hNfgduYGuoP59g&_hsmi=29509000