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!

Hi everyone
I've been lurking this week mostly because my chemo has made me quite tired. I had big problems with constipation for the first 3 days, then on Friday and yesterday I had the runs. I had an appointment yesterday so I took 2 imodium which I would never resort to in normal circumstances. However, the chemo nurse had recommended it and I was scared to leave the house. It worked and is still working, so I hope I haven't got myself into a poor routine.

A friend recommended manuka honey for mouth care. Has anyone used this, and if so how is it taken? I think she said a spoonful straight in the mouth before eating.

Thisyear I'm really sorry to hear about your dd. I can only imagine how hard it must be for family members, particularly because there is less support out there for young adult's parents. I know that my mum and dh find my illness hard and struggle with their lack of control over the situation.

I hope everyone waiting for test results is ok, and that Lily's SE's are manageable.

Constipation may well be from Ondansetron if you have been prescribed that - SE of a drug to counter an SE!
Feeling a little less spaced out today - nothing as bad as when I had Tax!

I was prescribed movicol by my consultant for constipation, it seemed to works well as it just sped things up a bit rather than going too far the other way. It tastes pretty vile though, I had to hold my nose while I drank it. I think if you know you are probably going to be contipated it is better to take something on advance to prevent, rather than cure it later. I found this out the hard way (literally).

Not sure about manuka honey for a sore mouth. The sore mouth is probably caused by thrush during chemo, so avoiding sugar is best as it makes thrush worse. Therefore my logic would say avoid the honey as it's mainly sugar.

Hope you feel better today Lily

I am very prone to mouth ulcers. I recommend using an sls free toothpaste (such as sensodyne pronamel) with a soft toothbrush, using the corsadyl mouthwash as prescribed and avoiding crusty bread. When I have a bad one I try and cover it with the iglu paste (tricky to apply, takes a bit of practice). I agree with Fresta that sugar is not generally your friend when you have mouth ulcers. Neither are salt and vinegar kettle chips -ouch!

Hope you are coming round Lily, they are giving you a good hammering. Hopefully you will be rewarded with a good response.

I am going in for some Macmillan provided alternative therapy on Tuesday. I hope it is a nice massage and not smells (lungs very sensitive) or needles. It's a bit odd that they didn't specify.

Hi all,
I'm new here and after a bit of advice from you experts, especially those in their 70's. My mum was diagnosed with stage 1 breast cancer a few weeks ago - had the lump removed, 2cm with slight precancerous changes around the lump, all removed, lymph nodes clear, Her-ve. We are going back to the consultant in a couple of weeks to discuss radiotherapy (3wks) and hormone blocker medication for 5yrs. Now my mum is 75 and has decided from looking at Google that she would rather risk reoccurrence than have 5yrs of feeling rotten. She had already decided before we got the results that she would refuse chemo regardless. Apart from arthritis, she is generally quite healthy and used to being constantly on the go. It is obviously going to be her choice, and we have to discuss risks/ side effects etc with the consultant, but what are your experiences of the treatment?

Hi Mad, I am currently going through chemo, had 6 rounds so far. It isn't nice, but it is doable. However, I'm 43, I can't really say how I would feel if I was 75. My cancer is more advanced than your mums though, so chemo/tamoxifen wasn't really optional.

I had manuka honey while I was on chemo but just as I had read that it was good for immunity and general health. Whether it did anything who knows !

Sleepy hope the therapy is nice and relaxing

Mad most of us are a lot younger than in our 70s sadly but I guess it's how she feels. If she's a fit and healthy 75 year old she could have 20 years or more so 6 months of chemo then tamoxifen which I don't get any symptoms from would probably be worth it. Chemo is brutal but doable and though older she wouldn't have young children/ work to worry about. It has to be her decision though

Hope everyone's had a nice weekend,end of half term here boo

Hi MadAuntofA,
I'd think the consultant isn't considering chemo at all, if it's a stage 1 and not in lymph nodes. If they are considering radiotherapy and hormone blockers, that seems sensible. There are more than one type of hormone blockers, so if one makes someone feel yuk, they can try alternatives. Definitely no need to feel awful for years. Well worth a good chat with the consultant.

Thanks Amber. Chemo is definitely not going to be an option but I think she is worried about feeling rubbish for 5yrs so hopefully we will be able to change if the 1st one has too many side effects.

I have had a lovely time with the complementary therapist. I had a whole hour of reflexology which was bliss. I am not a believer in the woo so the bobbins about energy flowing up my legs I mentally translated as circulation. I do love a foot rub even though I don't think it draws toxins from my liver!

Tomorrow I am starting a new set of toxins to put into my liver. Some sort of metabolic inhibitor thing. Or perhaps a placebo , who knows? Scary.

Glad you enjoyed it sleepy hope you can keep that relaxed feeling this evening. Hope it goes well tomorrow x

That sounds lovely Sleepy. Glad that you had a lovely relaxing time. Hope tomorrow goes well.

Mumto- are you still waiting? If so, I hope those results hurry up for you.

Back to work tomorrow so things are going to get quite hectic again! At least it'll take my mind off the indigestion and maybe it will go away.

Good luck with going back to work speedy. I'm still waiting almost 3 weeks now

Finally got my mammogram results today, all fine phew !

Great news Mumto2, worth a celebration I think.

I am all tested and injected and measured. I am knackered. I need a cup of tea but am too shattered to get out of bed. I need a teasmaid!

Hello there,

Sorry to bother you all, and apologies if this is not the right place to ask this.

I was recently told I was high risk for developing breast cancer and apparently one of the things I can do to reduce that risk is to take Tamoxifen.

I was even able to say "oh yes, I've heard of that" because I see your thread bouncing up and down in Active Convos. TBH I sort of thought from the name it was maybe for people just on that drug.

Anyway, I thought this might be the place to come. Have any of you taken Tamoxifen to reduce cancer risk? It sounds quite drastic. But then so does "high risk for breast cancer". So...

My Dad is having chemo at the moment, so it has been heartening to read your posts. I would never have opened this thread before to avoid touristing on such a sensitive subject matter. I hope you don't mind.

Hi Bathtimefunkster (cool name!), I took tamoxifen for five years. It is not without side effects. For example hot flushes, weight gain, memory loss, reduction in libido, mood changes, changes to bones etc (not everyone gets side effects at all, so you could be lucky). Also different brands definitely had different side effects on me, so do be aware you may have to try a couple.

What a dilemma to have to face - such a difficult choice. However for me all the side effects faded after I stopped taking it for a month. So you could try it and stop if it is unbearable.

Hi Sleepy, thank you so much for replying.

Wow, those side effects sound pretty severe. I bet you're glad to be off it now.

That's a good tip about different brands. I kind of assumed Tamoxifen was a brand name.

It is a dilemma. I thought they'd just monitor me closely, so Inwas a bit taken aback TBH.

Thanks again :)

Thanks sleepy I look at teasmaids sometimes but dh always laughs, think you should get one and see what it's like !

Bath to give another point of view I don't have any symptoms from tamoxifen so if I had been offered it to reduce the chance of developing cancer it would have been fine for me, I didn't know it was used for that

Oh that's interesting mumto

I keep thinking "can I really refuse something that cuts my risk?"

My Dad's chemo (don't know if he's even on Tamoxifen. He doesn't want to know those kinds of things) makes me think "oh god, it's so serious to be on these drugs."

Sleepy We have a Teasmaid - need one if I am ever to get up for work. Disadvantage is that DH no longer has to go down to get tea and doesn't clear the dishwasher whilst the kettle boils. We have no shame!
Re Tamoxifen - I was on it for a few months but it didn't keep my tumour markers down so had to go back onto chemo. It made me very achy and tired. Some people do well on it and only have minor or temporary SEs.
I looked at threads on the Breast Cancer Care forum and people there commented on the merits of different brands. In general, the original brand was preferred but as it is more expensive than the generics you usually have to get your doctor to specify the brand you want or you will be dispensed the cheapest available.

Bathtime, I too am on tamoxifen, it's been about 18 months now. The main side effect I've had has been hot flushes, however these really just occurred for a few weeks shortly after I started taking it and then another spell of a few weeks last year. I haven't had any of the other issues mentioned by sleepy except I am a bit tired, but that could be totally unrelated. For the last month I have taken a different brand because that's what my chemist had in and I do feel a bit different, they have managed to get the original brand back in stock for me now. I'm waiting to see if I feel back to normal.

Based on how I feel, which is perfectly normal really I would take it to reduce the risk.

Mumto, great news that you've got the all clear, what a long wait though. I've got a check up with the surgeon next week, I suppose it's my two year one although it's a couple of months early. Not looking forward to that or the mammogram which will follow sometime soon as well.

Sleepy, hope you're getting dosed up with the good stuff and it does all the right things.

Whilst I am sad to read this I'm not sure that a support forum for people coping with cancer themselves is the best place to be fundraising. Maybe target people who are well and more time and energy to help. Others may feel differently.