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Hormone therapy reluctance!

33 REPLIES 33
Sheep
Member

Re: Hormone therapy reluctance!

Snap - I'm on tamoxifen like you - have been for about 18 months - I'm lucky like you - no horrible side effects - only hot flushes ( could be my age ) feel so sorry for the others out there who are having a bad time x
leanne
Member

Re: Hormone therapy reluctance!

I have only taken Tamoxifen so don't know anything about other types, but it would definitely be an idea to raise this with the doctors. 

Charli-Owen
Member

Re: Hormone therapy reluctance!

Leanne, what you said about Tamoxifen stopping oestrogen from reaching the cancer cells but not actually changing the hormone levels in the body has really interested me.

 

My mum has tried both Letrozole and Exemestane for the past year and since starting has been suffering from severe anxiety and depression and is nearly unrecognisable from the person she used to be. She's not been very responsive to mental health treatment and it keeps going through mine and my family's mind that this might be down to the hormone therapy. She is still adament that she wants to carry on with hormone therapy as she has used the NHS Predict tool and the hormone therapy does appear to make statistically significant difference to her chances. However, I've been looking into both Letrozole and Exemestane and it appears that they are different to Tamoxifen as they actually reduce the hormone levels in the body.

 

So I wondered if you knew about this because you had experienced better side effects from Tamoxifen as opposed to some of the aromatase inhibitor type hormone therapies??

Charli xx

Fuertelover
Member

Re: Hormone therapy reluctance!

I have a different problem now, I did reluctantly agree to try anastrazole last week, my oncologist immediately got me an appointment to have a bone scan the following day, but yet to have results ! When I went to try & get the Anastrazole, I found that as I am lactose intolerant, so unable to take tablets, which contain lactose, I would be unable to have Anastrazole. I phoned my oncologist to say that I would be quite happy not to take them, but she is going to try for another solution, So I will wait, but would rather not take them!

Also I now know that my RT begins on June 14th, the day after my husband has his twice cancelled eye op, so won't be able to drive me for two weeks. Life is complicated!

 

Tigony
Member

Re: Hormone therapy reluctance!

Very encouraging post. My oncologist has left it up to me to decide whether to take tamoxifen or not after my radio is finished. I stopped HRT when diagnosed with DCIS microinvasion, oestrogen positive, 3 months ago, and have been having night sweats and some hot flushes but not too bad. I do dread those symptoms getting worse though. Anyway, I will give it a go and see what happens.

Janey2
Member

Re: Hormone therapy reluctance!

Hurrah Ruby for that appointment - at last! A quick chip in to the thread before I lose signal. However, I wanted to suggest auricular acupuncture, if you can access. It made such a huge difference to the flushes and anxiety when I first started anastrazole. I still have the odd top up session. Also I've just switched from anastrazole to exmestane - one week down and no nasty side effects ...
worrier
Member

Re: Hormone therapy reluctance!

Dear Meri,
Thanks for the suggestion to divide the tablet. I was thinking may be try to take one every other day. I have a bc clinic appt tomorrow will discuss with bs and nurse may be have to call oncologist too. I will try the predict test and see what it says also.
Meri
Member

Re: Hormone therapy reluctance!

Worrier, you could try what forum nuse sugested I do which is helping reduce some side effects from Tamoxifen.

 

She said halve the tablet, take morning and night.

 

I had freezing feet, which my hospital BCN dismissed as psychological, not helpful!

 

But since diving the tablet they are not so cold now.

 

Also nausea has reduced a bit.

 

I have noted palpitations usually just before a hot flush, so trying to calm my breathing.

 

Have you seen GP about these side effects as there is medication to help.

 

Also the cancer centres may have relaxation groups, I am planning to attend one just for extra support.

 

Have you looked at the tool NHS PREDICT, it details your personal benefits of the drug which helps decisions re continuing.

 

You just have to enter age, tumour size, treatments.

 

It is helpful, see what it says and maybe talk to BCN about these issues?

 

It is a marathon we on now, not easy, I still strugling and like you not had radiotherapy yet, starts in couple of weeks.

 

 

rubycat
Member

Re: Hormone therapy reluctance!

Hope your hubby is doing well Diane.  Yes, it's one step at a time and things become a lot clearer when all the information is known.

It's good to see Leanne that you are coping well on the hormones, and very important for others to realise that it is really worth trying them.  There are many, many, people who have no difficulties at all.

Hurrah, letter just arrived - my spinal MRI is on SUNDAY 18 June!!! Cat Happyxxx

leanne
Member

Re: Hormone therapy reluctance!

I was quite reluctant to start tamoxifen after reading all the posts on here, but agreed to give it a go.  I only had a few hot flushes etc for the first month and since then have had no problems whatsoever, so it is possible to take it and be fine!

 

Also, I don't know about other hormone therapies, but tamoxifen blocks oestrogen from reaching the cancer cells, it doesn't actually change your hormone levels, as far as I understand.

Fuertelover
Member

Re: Hormone therapy reluctance!

Well girls, I think you are all very brave, & to have ms as well you are having to be very strong & I really admire you. I do hope some of your side effects get less as time goes on.

I am definitely going to ask the consultant to wotk out what happens if I take hormones or not. I have tried to do it, but unlike some of you, don't have all the details of my tumour.

not long now, go on Wednesday to see oncologist. 

Tuesday big day for my husband, he is having an eye op to remove oil from eye & cataract,let's hope his sight is improved.

Good luck all of you.

 

Dianex

rubycat
Member

Re: Hormone therapy reluctance!

Sending our big girl pants to you Marydan - just got them in off the line. Ouch, 3x a week, so sending hugs as well. Cat Happyxxx

Image result for Funny Big Girl Pants
marydan
Member

Re: Hormone therapy reluctance!

Thank you Rubycat,

Sorry you are sore also.

I am not sure if the lesions cause pain, but am due to start copaxone injections for my m.s which has back pain noted as a side effect so I really hope this does not cause anymore pain.

I am starting the copaxone to try and halt any further progression and am quite nervous about it.

Just need to be brave and know I am doing as much as I can to keep me well, or wellish anyway.

I hope you get a spinal mri soon. 

Take care and thanks again.

I will let you know how the injection goes, 3 days a week so I will be like a pin cushion soon. xxx

worrier
Member

Re: Hormone therapy reluctance!

On Tam 2.5mths, noticed joints ache more, now old problem with hip and jaw returned, hardly able to chew food. Cold feet also a problem, they get freezing cold to the point of numbness. Feel palpitations, panicky, also I seem to get hypoglycemia regularly, breaking out in sweat, shaking with hunger and need to eat. Don't think I can cope with being on Tamoxifen for 5 years.
Meri
Member

Re: Hormone therapy reluctance!

I too have noted increased aches in spine.

 

I do have spinal injury but pain has increased.

 

I am already on strong pain killers but trying not to take more as feel bad nausea at the moment due to Tamoxifen.

 

I am also on Amytriptaline which can help nerve pain, low dose as side effects not so good as get older and have nerve damage, slows down bladder etc.

 

Just rrying to find what I can cope with.

 

🙂

rubycat
Member

Re: Hormone therapy reluctance!

Hello Marydan, although I'm on arimidex, have been having awful back and hip ache and feeling like you too. Have had xrays/bone scans, which have showed up osteoarthritis, but am just waiting now for a spine mri.  My doc has prescribed amtriptyline as I was getting very little sleep as pain kept waking me up. Must say that at least I'm getting some sleep now.

Sorry to see you've got ms as well, do the new lesions cause more pain? Do hope you get some relief soon.Cat Happyxxx

marydan
Member

Re: Hormone therapy reluctance!

Hello to all you brave folk,

I have been on tamoxifen and have really been suffering with chronic back pain which I tuly think is due to the tamoxifen.

I have multiple sclerosis too and because of the m.s had a brain and spinal mri in Dec which showed new lesions on my spine due to a m.s relapse  but thankfully nothing else.

The backache is severe when I first get out of bed but does ease gradually as day goes on however never goes completely.

I was wondering if anyone else has had this awful backache.

I hope you are all dong well, Mary xxx

Fuertelover
Member

Re: Hormone therapy reluctance!

That is interesting Meri, I am still trying to make up my mind, but will go to see oncologist, willing to listen. But really at this point,  I don't know what I will decide.

I already take Cytoplan Bone Support, which contains calcium & has been keeping my density level I also started taking Vit D this winter to help protect the bones.

 

Will let you know how I get on after Wednesday 🍀🍀

Meri
Member

Re: Hormone therapy reluctance!

Hi Moggies,

Do remember drug can be changed if you have bad side effects or they can guve scans and vit D and calcium with drug that can cause thinning of bones.

 

We are all different so the NHS predict is really useful tool re hormone treatment but there are other factors.

 

I jave to remind myself that as Oncologist said they would not want you on these drugs unless the risk of cancer outweighed risk of drugs. So knowing type, grade, size etc is essential as well as any health issues.

 

Because I been a wheelchair user for twenty years my rosk extremely high for bone thinning.

 

Plus I have had a hysterectomy so risks of Tamoxifen re the womb not an issue for me.

 

I was so scared taking tablets, mostly due to all bad side effects listed and shared here.

 

But in my more rational, amd less emotional, times logic sets in.

I can always stop

I can try a different brand

try a different drug

 

So setting myself times, so for initial aide effects I will tolerate for one month, then see if they reducing or more managable, if not will try different brand, if I feel effects affecting my quality of life too much, and we all have to make that choice ourselves, then will stop as drug as only increases odds a few percent.

 

So far not so bad, one week on Tamoxifen today. Cold feet most noticable issues, weakness and tiredness, but that could be worse due to all strress of surgery and diagnosis. I am finding hot flushes bit stronger, but not increased at moment, I was still getting them before drug. Slieght nausea in afternoon so have fennel or pepperment tea to ease this.

 

Its worth a try for me but certainly not if quality of life too low.

 

Hope this helps

🙂

Moggys
Member

Re: Hormone therapy reluctance!

Like Fuertelover, I'm going in shortly to work out what my ho9rmone plane is with my doctor and I'm not sure I could feel more stressed. My family also has a history of bone issues, so I'm not entirely sure what my best bet is going to be, and I'm worried about side effects on top of everything else I'm going through at the moment. I've been reading a lot of posts recently - hello dr google! - and I sure as heck know I fit the symptoms, at the very least. Currently using the Predict site linked earlier and compiling a whole lot of questions to ask when I head in. Anything I need to ask? I'm woried I might miss something...

Meri
Member

Re: Hormone therapy reluctance!

Its was oncologist who started me on Tamoxifen, surgeon siad it would be letrozole.

 

So I have started, day 6 tonight, not too nad at moment, heavy legs, bit tired, cold feet LoL bit emotional too.

 

But will give it at least a month.

 

Try copying and pasting results graph.

 

🙂

Fuertelover
Member

Re: Hormone therapy reluctance!

Meri, I did the predictor test & tried to print it, but it doesn't print out what I filled in!  I too am having 15 sessions of radiotherapy, but won't know when until after the 17th.

When did you start the hormones? They suggested after radiotherapy, but we will see. At the moment feel fit & well, seems a shame to change !

Hope you feel better 🌼

Meri
Member

Re: Hormone therapy reluctance!

I feel the same, its just for me I want to know I tried all I could so if it comes back I will not be fretting that its my fault!

 

Today I feel a bit better, occasional mild nausea, still cold feet lol 🙂

 

Tiredness, hot flushes not increased just bit stronger.

 

Do read the background info on that predictor, its useful info to discuss.

 

Are you having radiation? I start mine at end of month, 15 sessions ober three weeks.

 

Tamoxifen improves bone density so that always an option to consider.

 

Take care 🙂

Fuertelover
Member

Re: Hormone therapy reluctance!

Thanks Meri. There appears to be such a small difference, I have printed it off & will take with me, There is only two percent difference! I will see if I can be convinced! Quite willing to listen, but at my age don't want to pump my body full of hormones.

Do appreciate your input.

Thanks

Diane xx

Fuertelover
Member

Re: Hormone therapy reluctance!

Thanks Meri. There appears to be such a small difference, I have printed it off & will take with me, There is only two percent difference! I will see if I can be convinced! Quite willing to listen, but at my age don't want to pump my body full of hormones.

Do appreciate your input.

 

Thanks

Diane xx

Meri
Member

Re: Hormone therapy reluctance!

I am on Relonchem, my pharmacist told me all Tamoxifen costs the same so haply to try changing brands if I wish.

 

My oncologist used this tool http://predict.nhs.uk/ to work out my odds on or off drug.

 

There was only few percent difference for me, equal about two more people dieing within ten years.

 

It depends on diagnosis, age, etc

 

So I know if its too much I can come off the drug, as she and I agreed quality of life is biggest issue at this stage of my life.

 

But i am giving it a go, don't like side effects so far, worried if my body can cope to be honest.

 

Take list of questions, it helps so much and I found doctors do respond to our concerns.

 

 

Fuertelover
Member

Re: Hormone therapy reluctance!

Thank you Meri, hope you are over side effects soon, still very torn , would like to know the difference drugs make, compared to not having them. But will ask ! 

I am a bit older than you, 73.

 

Meri
Member

Re: Hormone therapy reluctance!

I'm 61 and wheelchiar user so oncologist chose Tamoxifen due to concerns Letrozole type drug would increase thinning of bones for me.

 

Only just started on them, trying to ride initial side effects as know its early days.

 

Old feet is oddest one at moment LoL 🙂

 

Also feel tired, weak, moving body hard. But know many people get this initially.

 

Always remember most people who have no significant side effects probably won't stay or visit forum much.

 

Many people have no issues with drugs after settling in.

 

I keep telling myself this is for my family and for me to be around a bit linger hopefully so definately worth a try.

 

Tell doctor your worries they will tale note. 🙂

ladybowler
Community Champion

Re: Hormone therapy reluctance!

Diane

 

Cheers my dear 🙂 at least they aren't as many as they were xx

Fuertelover
Member

Re: Hormone therapy reluctance!

Seems to be all doctors appts! Good luck!
ladybowler
Community Champion

Re: Hormone therapy reluctance!

Diane

 

I can understand that , I have a review with my gp in June having some blood tests for vit D, my readings were -1.5 and -2.5 which she said was on the low side of normal, so will wait and see.

 

Helena xxx

Fuertelover
Member

Re: Hormone therapy reluctance!

Thanks Helena, but I was diagnosed about fifteen years ago & since then have taken bone support , which has been effective in preventing any further deterioration, but don't think it would cope with hormones! So very wary!

 

Diane x

ladybowler
Community Champion

Re: Hormone therapy reluctance!

fuertelover

 

I found out I have osteoporosis of the spine just before I was diagnosed with bc, I was supposed to be on letrozole because I am post menopausal, but my oncologist changed me to tamoxifen because of this as it is kinder on the bones.

 

Okay I am having hot flushes several times a day and a little bit of achy bones but it is really nothing that I can not handle and does not impact on anything I do, including playing lawn green bowls which is a passion of mine.

 

Helena xxx

Fuertelover
Member

Hormone therapy reluctance!

I am going next week to hear my plan, am not worried about radiotherapy, but I am worried about having hormone therapy. From reading various posts about side effects, it seems one of the most common ones is losing bone density, which really worries me, as my mother suffered from osteoporosis in her spine & I have been building up my bone density for 15 years & don't want to ruin it. I am going to ask the consultant what the chances of a reoccurence happening within five years, either with or without hormones?

I saw how much my mother suffered & lost 5" in height & I don't want to do that.

Has anyone else ever questioned hormone therapy?

 

Diane