Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

Ikea Been on Tamoxifen 13 months - insomnia still really bad, finding anti-histamine helps, night sweats/hot flushes for me just a couple of weeks at start then nothing much, weight, put on 1.5 stone in a year on it which I am not best pleased to discover as now I need to lose that. Though I should have weighed myself regularly rather than just calorie counted then I would have been alerted. Otherwise fine though not great on teeth either.

Thanks silkie. Will
Persevere. I can't live with insomnia though and will have to find something if it doesn't go

Silkie, could you try adding in some easy weights? Or resistance bands? To help the weight loss?

Two books I've found unbelievably valuable are Get your oomph back and Move Through Cancer. The latter has the easiest to follow weight lifting plan ever and I used it pre operation. I was so chuffed!

Post has been hit and miss as couldn't lift obviously while recovering from the op and I stopped the hrt two weeks after it and started this vile drug. But I think I'm not aiming at the right level for where I am at right now. I think I need to tone it back a bit.

Post swim snack could be banana and handful of nuts? Walnuts are especially good for boobs too I believe.

www.movingthroughcancer.com/

There are free pdfs of the lifting stuff and I think some videos. Have g spent much time there as I use the book.

@Ikeameatballlunch Ive struggled with insomnia on letrozole and have now been prescribed amitryptaline which I think @TopOfTheCliff also takes? Makes a massive difference.

Thanks Ikea My DH just suggested a banana in car for after swimming and weights, they are good ideas. I don't even like the McDonalds very much so that would be easy to give up for me and so yes its just ensuring have enough energy to swim. I have cut calories a lot before after pregnancy and I just end up sleeping too much though did lose weight rapidly.

Thanks for the link, will look at that. I know they recommend weights as part of the 3 to 5 hours a week so makes sense. I did originally think exercise bike or treadmill but know if I order it it will just add to the pile of 20 things ordered but not assembled in our house. I think someone had a weighted hula hoop though I am not that co-ordinated for that so will stick to weights. I have been very good on the diet today but not sure how long will keep this up.

Yes @thesandwich it’s a great old fashioned drug that has few side effects in a small dose 10 mg (dry mouth and doziness) and helps neuropathic pain and is an old antidepressant. It’s not addictive and it’s cheap to prescribe. I’ve used it as a luxury all through treatment and I sleep pretty well.

Ooh, I can't be doing with insomnia! I shall ask about that during either this week's call with the CNS or next week with the consultant.

I did buy some Nytol after coming home from hospital the second time, I'll keep that on standby for the moment.

@lucysmam I’ve found lavender spray on my pillow surprisingly helpful for getting me off to sleep. Just seemed to relax me

I do have a lavender spray my friend gave me - I'll root that out tomorrow morning. Thanks @RedRosesPinkLilies .

I've just been reading a thread in Chat about menopause & spots. Have any of you found your skin's suffered?

I have a pretty basic routine that suits fine atm. Hopefully won't need tweaking!

. I know they recommend weights as part of the 3 to 5 hours a week so makes sense.

I've just started to follow the hormonal schedule and it's x2 lifting sessions and 5 aerobic. (Though I really liked the every other day prehab.) it's basically 10 reps and 2 sets (you'd start with fewer, eg 8, and lighter weights.) moving to 3 sets if you can over time.

Lifting page, with pdf of lifts: www.movingthroughcancer.com/lift

My aerobic stuff is dancing in my kitchen and fast dog walking. I got a water rower which I love but havent used much since op. I did a bit of a 20 min session with hitt bursts yesterday but I think it's was too much and may have added to the insomnia.

I used to skip a lot and I'm thinking of trying to restart that.

Thanks for the tip - I was prescribed it once before and couldn't tolerate it at all. But maybe will have to try again.

@TopOfTheCliff So sorry to hear about your awful vaginal dryness. Please do check with your team if you're allowed Vagifem as it's more than likely you will be able to use it and it will eradicate these issues completely. It is a topical treatment, inserted into your vagina and absorbed directly into the vaginal walls and doesn't enter your bloodstream. It's a super low dose of oestrogen, and it's because of this coupled with it being a topical medication, which makes it suitable for most with breast cancer, even hormone receptive breast cancer, to allowed to use it.

Due to a premature menopause, I was already using Vagifem pre-cancer, (along with HRT) and it was the first thing I asked my team about. While I had to surrender HRT, I was allowed to continue using this.

It really is the most restorative stuff. Have found it so effective, I don't even need an additional lubricant/vaginal moisturiser. However, if you are considering one of those instead, can thoroughly recommend YES.

Interesting re vagifem @doublec as I’ve been suffering and onc has prescribed vagifem v unwillingly for sparing use with risk warnings. Using bucketloads of other non hormonal creams- dr Woolf is really good!

@thesandwich

Although good, non-hormonal creams are just a band aid, they won't address the real issue or stop things deteriorating further.

I suffered terribly with vaginal atrophy, and many don't even realise the extent of what can happen. Vagifem doesn't just help the vagina, it helps stave of UTIs too - atrophy causes vaginal tissue to shrink, so the urethral opening is more exposed which can lead to infection and UTIs.

Am surprised by your oncologist's reaction as Vagifem has been deemed safe for a good few years now. Just so you know, Vagifem is used nightly for a fortnight, then twice weekly thereafter. The medication is tiny - the size of a junior aspirin. Maybe consider doing some reading online as there's lots of information out there and worth talking to your oncologist again should you wish to give it a proper try.

However, and of course, if you are happy with Dr Woolf, that's great you have found something that works for you.

Thirding the vagifem! Marvellous stuff!

I have some pessaries left over as well; are we allowed them?

Actually slept last night. Well, till 4:45, but that's ok. Two hot flushes but mild and I sent back to sleep. Did some bedtime yoga. But also - I had much less caffeine yesterday. Might continue to avoid.

I had ER+ endometrial cancer, which is most likely to return at the top of the vagina, and my consultant said it was okay for me to take topical vaginal oestrogen. I don’t think I actually could psychologically because of where my cancer was, but just feeding this in for other people who may be considering it.

@doublec thanks- and others. Can anyone point me to research re vagifem? Onc was not keen for use with letrozole.

I used to use vagifem pre cancer. My lovely old oncologist said I could go back on it but if I did he would swap my exemestane for tamoxifen as it mops up wandering oestrogen around the body which makes sense. I’m not suffering much so I haven’t pushed it. I’m likely to go back on exemestane after I finish chemo so I might tackle it then.
Thanks for the link for the weights routine @Ikeameatballlunch . I’m working on fixing my shoulder so I can go back to weights. There is so much wrong with me!

Lazy day today, I am just plotting some treats for DH as his birthday is soon.

Top

I love this thread and all the people. It's so supportive and so wonderful to read what people truly feel, and that we are all cancer patients so we get it. We don't need to filter what we say here in the way we do with our families and friends to eg avoid them worrying, or whatever.

Anyone got any tips for knees? My right knee has been playing up for ages, now the left one has started.

I'm hypermobile so my joints have always been somewhat vulnerable to issues because I'm super bendy, but my knees have really ramped up in pain / swelling / stiffness during the cancer treatments.

I see an osteopath and I do his exercises, and I try to avoid my knees bending back the wrong way, but they still seem annoyed. It's like they're competing with each other - which one can be the biggest most swollen knee...

On another note, does anyone suspect that Her2 is sensitive to testosterone? I wonder why they test ER and PR, but not T or prolactin.

Thanks Ikea Yes I have been told to avoid caffeine though it was only the anti histamine I have found that works for getting to sleep.

I have got my CT head come through for 8.30am Monday, wasn't expecting it so quick but good to get it through and over with.

I tried to cut calories to 900 a day yesterday and managed it but felt very weak and very grumpy so don't think that will work but will see. Will try and go swimming tonight, exercise I have sorted.

Knees Summer I just have very mild issues but right hip is a bit weak. You could possibly get a scan to see if there's anything and see if they can do anything. My hip showed bony island joint which I have no idea what it is but explains why hips feel different. I find a multi vitamin helps with pain, take the wellwoman 50 and swimming is a good exercise for it. Obviously weight can have an impact. I think it just starts though with menopause esp with Tamoxifen and no hrt. Its like ageing 20 years overnight. I have ordered some scales, wish had done that before, well I did but only place worked was kitchen and kids snaffled them.

Knees Summer I just have very mild issues but right hip is a bit weak. You could possibly get a scan to see if there's anything and see if they can do anything. My hip showed bony island joint which I have no idea what it is but explains why hips feel different. I find a multi vitamin helps with pain, take the wellwoman 50 and swimming is a good exercise for it. Obviously weight can have an impact. I think it just starts though with menopause esp with Tamoxifen and no hrt. Its like ageing 20 years overnight. I have ordered some scales, wish had done that before, well I did but only place worked was kitchen and kids snaffled them.

@Silkiebunny

How interesting your hip scan showed a bony island joint (never heard of it either, but it sounds like they at least identified a probable cause of the weakness you were experiencing and it's got a memorable name!) Did they suggest any plan to help with it?

I am really thinking about a multi Vit. I saw a MacMillan dietician today (great!) who asked if they'd ever tested my vitamins or minerals (no) and whether I was taking any supplements (no, except Adcal for a month after zometa infusion in August). I'll ask her next time about wellwoman 50. Thanks for the tip 😊

Weight - I have gained about 12kg during my cancer treatment plan time; to be honest, mostly through over eating (comfort eating generally, or trying to combat fatigue). I can't blame the meds.

I am not on any oestrogen blockers, so I can't blame Tamoxifen either, although my fT3 thyroid level is really low I discovered today, and my endocrinologist said last week if it comes out lower than mid range he'll send a prescription to my pharmacy for T3 (liothyronine). That could certainly influence fatigue, weight and mood. Who knows, maybe even my knees (?)

I'm sorry Tamoxifen and no hrt had that effect, how horrendous. It must be a massive shock to the system for sure, considering the huge amount of things hormones influence. I hope in time the effects lessen xxx

My new dietician asked me to weigh myself once a week and keep a food diary to get a starting point. I know I am now overweight, and can only get into a couple of my own clothes. I said to her I don't necessarily need to be pre cancer weight of 55kg again, but I don't want to buy a new wardrobe of clothes either! So, interesting you mentioned weight, which is actually logical isn't it, poor knees carrying an overweight body!

Has anyone tried the free 12-week joint rehabilitation programme with Nuffield? I’ve just started it. It seems good so far. There’s only four of us in the group, so lots of individual attention from the trainer.

I think it's the chemo plus Tamoxifen plus stress which has aged me 20 years in 2 though I always looked much younger than I was so I only look my age now but gone from right weight to 1.5 stone on over past year. I didn't put on weight with chemo was after that though it was a difficult year with DS in hospital so maybe I didn't monitor as well as I should. Tamoxifen isn't that bad.

Had another day of eating very little and did an hour's hoovering and 100 lengths at the pool of 15 metres and jacuzzi and steam room.

I doubt it's weight Summer for your knee if you were right weight before, it's normally people obese for years that get it from that. I want to get back to right weight again which means loosing 1.5 stone. Argh.

Hope everyone has as good a weekend as they can.

Sorry been reading but not replying, it's all a bit overwhelming tbh! I just wish I knew what was happening. And I'm 3 weeks without HRT now and my sleep is suffering with hot flushes (back to sleeping on a towel!) and the menopausal rages are back!

Spent the whole afternoon crying, but a wee call from my lovely mum (she's my stepmum but much more of a mum to me than my mum) this afternoon helped. And dh came home early bringing wine and takeaway curry!

I'm a control freak, and like to know the PLAN! And there's no plan until Thursday. So just have to get through till then. I'm inspired by your stories - we can all face this together!