Have i done the right thing?

[vonz]

Hi everybody, i finally saw my oncologist who listened to my worries about tamoxifen and agreed i had done the right thing, i have now been started monthly injections called Zoladex which he prescribed for me so far so good no side effects but it has only been five days. Manythanks to everybody for your kind thoughts i stuck to my guns and i have got a change of prescription, hope everybody is ok? xx

[KazzyK]

Hi Vonz,

It's only been the third day today of taking Tamoxifen so don't think the se's have kicked in yet - although I did wake up last night throwing the duvet off me and undoing the front of my nighty, but figured that was a fluke as surely no se's can start happening that early!! lol
I'm pre-men too and when I saw my surgeon last week for path results I asked him if there was a different drug to take instead of Tamoxifen as I did not like the sound of the side effects and he said for pre-men Tamoxifen was the only one. Let me know how you get on xx

[vonz]

KazzyK i think you found the right thread, i have just experienced a strong reaction to Tamoxifen and im trying to find alternatives as i am pre-meopausal although at 49 i should be experiencing it soon. xx

[KazzyK]

Right ...... down the hatch... only 1,824 to go!! Thank you girls for geeing me along. I'm sure I'm going to wake up in the morning looking like Ten Tonne Tess, that's if I can even get through the night what with the leg cramps, joint pain, hot flashes and my `lady bits' splitting!! This is one good thing about being single - don't have to bother about looking good first thing in the morning, lol
The brand I have is RelonChem...not read anything on the threads yet about this brand so maybe thats a good sign and its because the ladies on this one are not getting any SE's (here's hoping)!!

Mary Grace - on a separate thing, I've been reading the critical illness thread .. who was your cover with?? I am stage 1, grade 2 and have a claim going through with the Halifax but they are waiting on the medical reports so don't know if it'll come through but crikey would it help!!
Thank you all once again, onwards and upwards!!
Kaz xxx

[Guest user]

I was on Tamoxifen for about 9 months. Didn't gain any weight but the other side effects were difficult. The hot flashes were unbelievable. My primary tumor was only slightly Estrogen positive an "8" out of 100. I am also Progesterone and HER2 negative--so pretty close to a triple negative--but my onc. decided the Tamoxifen was worth a try. I had a recurrence last fall and stopped taking it and went back through chemo and rads. Now I'm on Xeloda which I have gained wait on-argh! Working hard at getting it under control


Dx 1/10 with 3A and have had 2 recurrences to the lymph nodes in chest and neck. Just finished radiation (for the second time!) and I am currently on Xeloda. Clear PET 6/12/12!!!! Hoping to be part of NeuVax trial in October.

[Guest user]

I was on Tamoxifen for about 9 months. Didn't gain any weight but the other side effects were difficult. The hot flashes were unbelievable. My primary tumor was only slightly Estrogen positive an "8" out of 100. I am also Progesterone and HER2 negative--so pretty close to a triple negative--but my onc. decided the Tamoxifen was worth a try. I had a recurrence last fall and stopped taking it and went back through chemo and rads. Now I'm on Xeloda which I have gained wait on-argh! Working hard at getting it under control

Christina Burke - Researcher, DBA Candidate, and BC Patient.
capburke@yahoo.com
Dx 1/10 with 3A and have had 2 recurrences to the lymph nodes in chest and neck. Just finished radiation (for the second time!) and I am currently on Xeloda. Clear PET 6/12/12!!!! Hoping to be part of NeuVax trial in October.

[Guest user]

... and btw, I haven't gained any weight on tamoxifen...

[Guest user]

Hi All, I was fairly similar to Kazzy in that I had WLE, SNB, no lymph spread rads but no chemo. I am taking tamoxifen for 5 years though I was grade 1, stage 1. My onc was insistent. He said as I hadn't had chemo I would otherwise have no "systemic" prevention of getting bc in the other side or in case any rogue cells had got out there somehow. Of course none of us know whether we will be lucky or unlucky in the future but having lost two dear friends to this bl**dy disease this week, I would never live with myself if I did not take tamoxifen and had a recurrence. He said don't underestimate it, tamoxifen is as important a systemic weapon in the armoury as chemo.
Of course I could get it anyway, but I would know that I had done everything I could to help myself.
I accept this is an individual thing but it really struck me that my onc was quite fierce and said if I'd seen as many women as he could who he couldn't help, I would understand why he feels so firmly that people should take any prevention offered when they are clear of bc.
That said, apart for flushes for the first few months, I really don't have any major symptoms from tamoxifen. I am 18 months into taking it and wouldn't say it affected my daily life at all - in fact if they said take it forever I would do so.
xx

[Guest user]

Hi ladies
Well I have actually lost 11lbs while on Tam without really changing too many things I eat.The weight gain scared me too Kazz as I have always been over weight I have been more careful about what goes in my mouth and have cut down a lot on carbs.I dont actually work so was able to rest during the day..but rads did make me very tired towards the end..you will be ok and find your way to get through it.The rads wern't as bad as I expected...a good tip though make sure you slap lots of cream on your boob during treatment...Great advice Zeppa I agree..get that first one down your neck Kazz :0
Kate x

[KazzyK]

Hi Zeppa
I know you are right, I know I'll have to start taking them ...its just..............grrrrr swallowing that first little bugger!! lol x

[Zeppa]

KazzyK, you should start taking them. I was very happy with Tamoxifen. Everyone is different.
There are two aspects: firstly, the long-term potential effects. That is why doctors say AIs are 'better' or 'have fewer side-effects'. However, the long-term effects of Tamoxifen don't affect everyone, there is just a slightly higher percentage of risk. For instance, you should have eye tests (mine said my eyes were unaffected). You should have tests to check you don't get cancer of the womb (again, something that can usually be easily checked and avoided - even if you did get this cancer, it would be better than a recurrence of breast cancer). We don't talk about this much here but you should inform yourself.
Then there are the immediate side-effects like hot flushes (mine got much better after a couple of months), apparently bone pains (I have never had this and AIs are more likely to cause it) and so on.
You really need to try Tam to see if you really suffer. There's no one forcing you to keep with it if you really can't tolerate it. I'm very sorry to read of vonz problems but I am post-menopausal so I have the choice.
Doctors have told me that AIs have fewer side effects, but I think they were confusing the two aspects. Arimidex was not tolerable for me, exemestan is better.
I'm sure other people will come along and tell you to try Tamoxifen for yourself.

[KazzyK]

Hi Kate, thank you so much for replying, its good to hear that you are doing ok them. I know I am being vain here but the 20lb (!!) weight gain does not appeal much to me either... lol. I know I am `having it easy' compared to a lot of us so I should stop being pathetic and get on with taking it. Maybe today! I have 15 rounds of rads coming up too and am wondering whether I am going to be able to do that whilst continuing to work. Did you find that okay?? Its good to chat to someone who has had the same surgery. I hope you are feeling ok and thanks again for replying.
Take care, Kaz x

[Guest user]

Hi
I had exactly the same surgery as you in May Kaz and had 15 rounds of rads.I have been finished treatment for 5 weeks now and been on Tamoxifen for nearly 3 months.The se have been managable for me a few achey joints and some flushes but these certainly outweigh the risks of me not taking Tamoxifen.The flushes and aches have calmed down a lot.I had some good advice throw away the se sheet because you will just keep looking for them ..not everyone has a bad time on tam 🙂 I was very nervous about starting them but like this awful cancer journey the not knowing is the worst ..once you start them you will feel better 🙂
Good Luck
Take Care
Kate x

[KazzyK]

I don't know if I am posting this on the right thread or not but I had WLE and SNB 11 days ago, 2 nodes which were clear so no chemo but rads starting in about 6 weeks and Tamoxifen for 5 years. I am so worried about the horrible sounding side effects I have not started taken them yet. I feel I need to gee myself up to take the first one but I havn't managed to gee myself up enough yet. Am I doing the wrong thing?? It seems the majority get the shitty side effects??!! Is there anyone doing okay with the SE of Tamoxifen??

[vonz]

Hi everybody, Just to let you know i saw the hospital on Tuesday and im afraid i came out very upset. They have said i have no choice and have to take Tamoxifen and they are going to ask my doctor to prescribe venlafaxine which is an antidepressant which helps with the side effects only problem is i am already taking amytriptiline in a high dose (also an anti-depressant) as a nerve pain medicine since i have a major back problem due to a failed spinal operation. I dont think anybody has looked at what else i am taking and feel i need to research this a lot more. I will keep everybody updated as i am seeing my GP next week, hope everybody is doing ok xx

[21210]

Hi Vonz,

I have sent you a private message.

Sarah.x

[Guest user]

Hi Von,
In 2006 I was taking Arimidex. I could'nt cope with the side affecs, pain and confussion. My onc wanted me to try anothe rAI but thought I would have the same side affects -justnot as bad.
I chose not to take any hormone treatment.
In June this year I was dx with mets in the spine - this has caused spinal compression.
However every other woman I have met, who now has secondery cancer took the tablets.
I had 6 good years worked full time, danced , played and lived as I wished.
At the moment I dont have any regrets.
Speak to your onc and make the desission you can live with.
For me quallity came first.
Bestt wishes xx

[JCJ]

vonz: You don't say how old you are, but I'm assuming, if they put you on Tamoxifen, that you are pre-menopausal?

I am 52 and was offered Zoladex injections to induce menopause. I have them every 3 months for 2 years, by then I should be post menopausal and can switch to a different hormone therapy - AIs, of which there are a variety to choose from. My GP does the injections into my tummy, and he gives me a local anaesthetic injection first so it's not at all painful. From what I can gather AIs have less long term nasty side effects, and as there are a variety of effective ones, you can try different ones to find one that suits you.

As I am on both Zoladex and Tamoxifen at the moment, it's difficult to know which causes what SE, but I'm only having 3 or 4 flushes a day, mostly, but not all, in the evenings, and none of them particularly severe, just annoying. So far no other SEs other than getting a bit emotional (PMT?!) when next my injection is due, and I do have the advantage of no more periods! 🙂

[vonz]

Thank you everybody, im seeing the ladybird unit on Tuesday for my prothesis fitting and will try and speak to someone there although sometimes i feel im bothering them because they are so busy. Glowormdancer good luck with your next treatments and thank you for your honesty that was my priority quality of life. I will certainly ask if there any alternatives even if they could remove my ovary i might feel more secure i dont know. Many thanks everybody i dont feel quite so alone now, xx

[topsymo]

I am currently considering giving up on Arimidex after 4 years so am really interested in this thread.

I continue to have hot flushes, particularly at night and although they are not as frequent as they were, they disturb my sleep & are not pleasant. My poor hair has not recovered from Taxotere & is very thin - I don't think it will thicken until I stop Arimidex. I have also gained weight and I am having increasing probs with arthritis in my shoulders. I appreciate that these latter two may not be linked to Arimidex but I would really like to know if another year on the drug would actually alter my prognosis- ie what studies have there been as to the long term efficacy of the drug. Why 5 years? Why not 6 or 7 or 8 .....or 4?

I don't want to be foolhardy but at 70, quality of life is increasingly important (as 'glowormdamcer' has highlighted in her post)

I hoped to discuss this with my onc when I had an appointment with him in August (after a 2 year wait!) but was fobbed off with a registrar who was really not very helpful - eg suggested I go onto Tamoxifen if my side effects were 'so bad' .
I have decided now that I'll pay for a private appointment with my onc in order to have a 'proper' discussion with someone who I respect and who has always treated me as a reasonably intelligent adult!
I would really appreciate any comments anyone else has on this subject: I think the folk on the forums are often more helpful & informed that some of the " professionals!"

[Guest user]

I have been on Tamoxifen for nearly 3 months now...the flushes are not too bad but sometimes I feel like a 90 year old in the mornings getting out of bed.My joints ache so much..its not all the time just sometimes..I would love to try and find out what triggers this off (if anything) ..suppose I never will..I would have a word with your onc vonz..good luck hope you get sorted.
Kate x

[saffronseed]

Hi VonZ sorry to hear your reaction to Tamoxifen. I am on Arimidex and probably lucky in that my side effects are quite minor and I can manage them although I do have stiffness and some hot flashes - there are other hormone drugs available that you can try and I would speak to your Onc to get some advice on what else he/she has on offer for you - its worth trying something else that you can live with rather than give up on it altogether (my opinion) as there is evidence that hormone theropy does keep cancer at bay but you do have to weight up taking it to quality of life.

[Lucy_BCC]

Hi Vonz and welcome to the BCC forums

In addition to the support and shared experiences you will soon have here please feel free to call our helpline where you can discuss your queries with one of our team, lines are open 9-5 weekdays and 10-2 Sat on 0808 800 6000, alternatively we have an email 'Ask the Nurse' service which you may wish to use, details are below:

http://www.breastcancercare.org.uk/breast-cancer-services/ask-us-your-questions/ask-nurse

Best wishes

Lucy

[vonz]

I was diagnosed back in March since then i have had 4 months of chemotherapy including a trial drug a masectomy on my right side including the lymph nodes. I start 3 weeks of radiotherapy on the 17th however they started me on Tamoxifen 3 weeks ago i have had to stop taking it due to the severe reaction i have had to it i couldnt function i was wet all the time from a permanent hot flush unable to get out of bed, etc. Is there anything else out there for me that anybody knows about,