Tried everything!

Hi there - first time on the site and I’m desparing of being normal ever again. Since bi-lateral mastectomies in 2005 have been on the following drugs one after the other as all gave me dreadful side effects, Tamoxifen; Zolodex: Then had test showing post menapausal) arimidex,(and alendronic acid) letrozol; femera. Then had massive bleeds so emergency endoscopy. Decided i was not post menapausal (even at 56) put back on Tamoxifen by new oncologist.I have put on over 3 stone since 2005, I have no energy, no self-motivation, no self esteem left. Full of guilt as I feel so bad, and yet am till alive so I should be feeling great!. Wonderful fanmily/husband (so more guilt there!)I just want to cry all the time and I know it’s shallow to worry about what you look like, but rolls of fat that make me look 9 months pregnant does not do your confidence any good. Will someone out there tell me they feel the same - or else tell me to get a grip and stop feeling sorry for myself!

Hi Pumpkin5

Welcome to the forums. I am sorry that you are feeling so down at the moment, have you looked at our factsheets on breastcancercare.org.uk/server/show/nav.26 which you may find useful. I am sure that you will be getting lots of advice and support from our forum users very shortly. In the meantime, if you would find it helpful to talk our helpline is open 9-5 Monday to Friday and 9-2 Saturday on 0808 800 6000.

Best wishes
Annabel
Moderator

Hi Pumpkin 5

Get a grip and stop feeling sorry for yourself! :smiley: You did say to say it!

Seriously, you sound like you’re really going through mill. I can’t be much direct help as I’ve only just started chemo. Even without the cancer I’ve put on 3 stone since 2005, so I do know how you feel there! On the guilt front, that’s hard. Why not try thinking exactly in the moment. Live now and not in the past or the future. When you feel guilty about how wonderful your family are being, stop and ask yourself if right now at this very moment they are complaining? (Answer - no) Are you actually doing anything deliberately that makes their life hard? (Answer - no) Is any of this your fault? (answer - no). Do they love you right now this very minute and do you love them? (Answer - yes). So right now at this very moment (not looking in the mirror!) can you be happy to be alive, loved, and strong enough to have come through this long three years? (Answer - yes). Keep adding up these positive now moments.

I could suggest all the usual, y’know, get out every day, do a bit more exercise to get that endorphin release, watch your diet, keep putting on your make up, repeat a positive mantra. Throw out all the clothes that make you feel bad, get some that make you feel good, etc, etc. Believe me I know how hard it is.

Hope I haven’t offended you Pumpkin. In the end you have to just straighten your shoulders and decide not to be beaten. Sometimes the only direction you have left to go is up. :slight_smile:

Carole

Hi Pumpkin

Well what can I say. I’m 4 years on from high grade DCIS, tram flap recon (which went wrong) and taking tamoxifen. I am fat, have a massive bulge where the surgery went wrong and most of the time hate myself. It does get a bit easier, but sometimes it is a real fight and you have to let yourself feel sorry for yourself. I now live in Bangkok - how exotic is that - how lonely is that!! You will move on - you can move on but don’t expect miracles. Don’t be too hard on yourself, try to take one step at a time. Speak to your GP - I took anti-depressants for a while as I could cope with things and they did help. Hang in there and give it time…

Debs

Hi Pumpkin,
I have not had any of the ‘recommended’ drugs (arimidex in my case)as I read of all the side effects beforehand and refused them based on what I found out about them. It never ceases to amaze me how many woman take these toxic carcinogenic drugs which make them feel really ill and gain weight without questioning the damage they do first.Not saying you didnt ask though :slight_smile: I for one was not prepared to live with the awful side effects for the tiny percentage of good they boast - life is too short to be in pain and miserable every day. They are not miracle drugs - If I were you I would try going without anything for a few months and see how you feel and then decide whether to continue with them again?
Clarabelle

On the flipside, Clarabelle, many women have few or no side effects from hormone therapies and there’s really only one way to find out how you’ll react. (If you worry about all the “possible” side effects listed inside a packet of paracetamols, you’ll probably never take one of those, either!)

The very real fact is that each “tiny percentage” of benefit translates as many people, myself included. And you’re right; “life is too short to be in pain and miserable every day”. But I can tell you that the pain I had from cancer was a damn sight worse than any of the aches or pains I now get from Arimidex. I was 35 when I got my painful recurrence (four and a half years after my original diagnosis and treatment), and I was not prepared to accept that my life was going to be THAT short. So I had my ovaries out, started taking the tablets and two years on, my BC is still being kept at bay thanks to Arimidex. So instead of being amazed that so many of us take the drugs, be amazed at how many more women are now surviving thanks to them.

But we’re all individuals, with different diagnoses, treatment paths and experiences. So while I hope your decision is the right one for you, I would ask that you please respect those of us who, because of different attitudes, experiences and diagnoses, have chosen to bite the bullet and take the treatment.

And Pumpkin, I hope that you can find the support that you need from this website, but please make your treatment decisions in conjunction with your onc, BC nurse and other QUALIFIED medical staff.

Stay well and be strong xx

Angelfalls – Thanks for the SHOUTING and the sarcasm and the personal attack – they were not welcome or appreciated.
Let me comment on your post as for you it would seem ignorance is bliss.
1)I have never, in all my research, found a woman taking hormone therapies who has had no side effects.
2)I do not take Paracetamol as I prefer to eliminate the cause rather than just suppress the symptoms.
3)I did not say I was amazed that so many of you take the drugs - I said that I was amazed so many women take these drugs without questioning the damage they do first - very different! My point was that surely if woman knew of all of the side effects and still take them then they would accept that they will get the side effects and not be on this site talking about them as if they were not expected?
4)You talk of facts but know none. Arimidex does not keep cancer at bay – it stops oestrogen, nothing more. And more people are not surviving because of them. People are surviving longer because the oestrogen that fuels the cancer is stopped for 5 years – ever wondered what happens when you stop taking it after 5 years? And ever wondered why they are prescribed for 5 years as trials show they are not needed for anywhere near that long? And would it be coincidental that government survival goalposts are 5 years?
5)You state that we are all individuals but clearly by your comments you feel that I am not one and not entitled to post my views and that by doing so I have been disrespectful – somewhat contradictory don’t you think?
6)My original post was to Pumpkin as she seems very distressed at the situation she finds herself in trying one drug after another and really suffering with the side effects.I wanted to let her know that you don’t have to take them to survive as the Pharmaceutical Companies and medical poofession would have you believe – I do not take them and I am fine and enjoying life – pain free - my choice.

Clarabelle,

I wasn’t being sarcastic or attacking you personally in my post. I was just trying to offer a different viewpoint to Pumpkin, just as you were. (The SHOUTING was actually being used to stress two words as I can’t get bold in the posts.)

You believe that for me, ignorance is bliss. My take is that I’m a little further along in my journey than you and maybe not so fortunate. I am well aware that not all treatments work for all women: a mastectomy, 8 months of chemo and 6 weeks of rads followed by four years of Tamoxifen didn’t work for me. But these treatments DO work for most. So, I’m happy to continue trying to find a treatment which will work for me, even if that means some unpleasant side effects along the way. I, like most women, have had side effects from all of my treatment, not just the hormone therapies. Would you really advocate that people don’t try chemo or rads because they are toxic and harmful to their bodies? For me and many others, it’s a question of choosing the lesser of two evils: the aches and pains won’t kill me; the cancer will.

As for your research into the side effects of hormone therapies, even by reading some of the threads on this site, you’ll find women who have few or no side effects. Perhaps I’ve just read different threads to you and have been more fortunate in finding some positive stories over the years. For example, the peer support volunteer I was matched with had been on Arimidex for a couple of years when I spoke to her and was having no problems at all, in the same way that a lady who was having chemo at the same time as me didn’t need to take her anti-sickness drugs and lost no hair. We are all different.

And yes, most of us know what the potential side effects are before they hit and accept that, but it still helps to be able to talk about them, moan about them and feel sorry for ourselves from time to time, knowing that we are in a safe space where we can get some reassurance from the shared experiences of others going through the same thing. You seem to be saying that if we know about the side effects, we shouldn’t feel the need to talk about them on this forum.

Arimidex does not stop oestrogen, but the production of oestrogen through aromatase once your ovaries are no longer producing it. I repeat that for me, that is what is keeping my oestrogen-fed cancer at bay. If, at the time of my recurrence, I had refused the tablets and rads on the basis that they are toxic to my body, I would not be here now. That is a fact. I will be six years post diagnosis this month. Government targets are also for ten and fifteen years. I hope to make it to those, too.

We are all entitled to post our views and share our own experiences, hopefully without attacking other people’s choices. But to give advice about stopping treatment or taking a treatment break is something I believe only an onc should do.

I am really happy that you are surviving drug-free and long may that continue for you. But we are not all you and many of us are only surviving thanks to the drugs.

Angelfalls

Angelfalls my last comment is that yes I do advocate that people do not have Chemotherapy or Radiotherapy just because they are offered it - did you check what percentage benefit you would gain from putting yourself through Chemotherapy and Radiotherapy and taking hormones? - I did because my Consultant who did my mastectomy warned that my Oncologist would want to (in his words) “throw the book” at me as I was so young and that I should question it as they are not miracle drugs. When I did I was told by my Oncologist that the benefits were less than 5% so I refused them. My husband was very upset so I reluctantly had 7 months of Chemotherapy and now wished I hadn’t but refused Radiotherapy and Arimidex which my Oncologist was happy with. My Oncologist also informed me that Arimidex not might, but would give me Osteoparosis. So you see, even though you intimated otherwise, my choices were made based on what very qualified medical staff told me.

Come on ladies focus on Pumpkin. She needs your help and support not a debate. All drugs have different effects on everyone and no one style of treatment is successful for everyone. Pumpkin you need to speak to someone, GP, hospital, therapist, somebody that can understand the effects your are experiencing and explain if this is how its going to be or it can be changed. Sounds like you are having a really tough time but not all of it due to the drugs. Take care and remember you have lots of people that love you.

Hi Pumpkin

I suspect it has taken a lot of courage for you to come here and put into words how you are feeling. Shallow is not a word I would use!!! Cancer and its treatments take so much from us and we all react in different ways to different treatments. There is no right or wrong. You must have found it very unsettling to have one drug after another cause you such awful side effects. But it sounds to me from your description that you are suffering, as so many do, from a depression the drugs seem to bring on at times. I think I would want to have a serious talk with my oncologist about these effects and your quality of life right now. After 4 years of treatment what does he think of you stopping now? Then I would want to be referred to someone with whom I could talk through how all this had affected me. I hope you get some good answers that will help you move forward. Sending hugs xxxxxx

Dawn

Hi Clarabelle, One of the problems with the site is the polarized views of some of the ladies and the vicious attacks we get if you dare to speak out against any of the treatment!!! I have found that out …like you!!!It stops a lot of ladies making comments about side effects, holistic therapies, challenging oncologists etc etc… Good for you for speaking out and I support you fully. Some ladies here never again comment about anything for fear of being shouted at, bullied and criticsed!!! We are all different and there is a lack of respect on this site. I am all for discussions but done in a respectful way… a lot of ladies here do not understand that!!! I am sick of it!!!1
Best wishes
Leadie

For anyone about to start this treatment some more praise for Arimidex…I was diagnosed stage 4 from the very beginning, in 2003, I have bone secondaries. Arimidex put me completely in remission for nearly 3 years. I still feel well and pain free, I don’t have osteoporosis, I take, need, no pain killers and never have done since my diagnosis. I’m now on a different treatment but I am so grateful for this little pill, I had very few side effects from it and nothing debilitating at all.

I too would like to offer support and sympathy for Pumpkin. This has turned out to be an interesting dicussion, after all with or without treatment, we are all here on this forum for the same reason. I was in a lot of pain 2 weeks ago (Arimidex). My Onc advised me to stop and keep a symptom diary until I see her next week. Last night I was in tears, after researching other drugs and seeing that there was not going to be a magic pill for me without side effects. I have decided to go back on the Arimidex If it’s okay with my Onc. I am going to try and tackle the pain in a different way! Not as brave as Clarabelle I’m afraid.
Best wishes to all, Jilly

Hi Pumpkin, i can fully understand how you feel on these pills, i have had them all except latrozole, (think i spelt that wrong!) i am currently on aromasin and the side effects are horrendous, but, i had a grade 3 tumour with possible vascular invasion seen, luckily i had clear lymph nodes, i didn’t get offered chemo, so i have to rely on this little pill as i am only 46, i have had my ovaries removed total hysterectomy and both boobs removed and reconstructed, all this and my 2nd anniversary is in June this year! i am hoping to get some help from my surgeon about the arthritis that i now have in my knees, not sure what they can do but i think i have to just keep going on as well as i can and just be glad to be alive, and yes, i do have my off days as well, sometimes you just want to wish it all away.
lots of love
Alisonxxxx

Hi all,

I’ve been using this site for well over a year and to me it’s been a godsend. I haven’t noticed any bullying etc since I started coming here. But I have been using the secondaries forum mainly. The amount of support and genuine friendship I have found are priceless. I am 43, diagnosed bc and secondaries in June 2007. Had a mastectomy and been having chemo from August 2007 until December 2008. I had FEC, Taxotere, Xeloda and Navelbine. None of them worked but all made me feel awful. Because of what I had read here I insisted my onc gave me Femara. We didn’t expect any results until I’d taken that for 3 months, but after the first blood tests it showed that WBC and RBC were back to normal and my liver had stabilised for the first time in 6 months. Does the Femara make me feel ill? Well it does, I get dizzy spells, nausea, painful joints etc, but I find it gets easier the longer I take it. At the time of my diagnosis I was given about 6 months, we are now 21 months later and I feel better now then I did at the start. For me not getting any treatment wasn’t an option. I have a 5yr old and a 3 yr old to take care of. I do wish I had known about the hormones before I had all the chemo. Now it looks as if that is helping me a lot more. If I had known before treatment started about all the side effects would I have done it? Yes I would. With the risk of being called a bully, I think it is dangerous to advise people not to take the drugs prescribed. If I hadn’t I would be dead by now. Pumpkin talk to your oncologist or a bc nurse and see what they say.

Peggy

Pumpkin

I am sorry you are feeling low -one of the things that i found incredibly helpful is losing weight and taking more exercise post my primary diagnosis when i was taking tamoxifen. Really just a little more exercise every day - say start with 5 minutes brisk walk a day then next week to 10 minutes and following to 15. You will not belive how much better you will feel. And to go along with that you could cut out butter or something simple like that to start. I guess what i am saying is make some simple life style changes and you will feel better about everything and more able to cope with any side effects.

As for side effects - well i wish my onc had given me arimidex and maybe i wouldn’t have secondaries 5 years on. I also think that giving up anything that is prescribed needs to be discussed with qualified medical personnel.

best wishes to you
cathyx

Dear Pumpkin Have noticed you haven’t replied to any of the comments. I would like to say that I really feel your pain over all the stuff that has happened to you. It sounds horrible and I think that you need a lot of support. The Bristol Cancer Help Centre is a wonderful resource for people living with Cancer. They send out a free DVD on all the therapies they offer and give practical way to strengthen yourself emotionally, physically and spiritually.I don’t know where you live but there is also the Havens in London that do similar things and you can have 10 free treatments, such as massage, nutritional advice, acupuncture, etc etc. If you want to pm me I would be glad to talk and give you support
Leadie

I don’t usually check this forum as having a triple negative cancer I’m someone for whom hormone based drugs don’t work anyway. Then having a brouse, and wow hit upon this thread…it is good to see a debate though a pity perhaps that it got muddled with pumpkin5’s original post.

So first pumpkin…I’m really sorry you are having such a hard hard time on arimidex and hope that you can find someone among your medical team to discuss this with and to have a really balanced discussion about the pros and cons of continuing or not.

Second: Clarabelle…I’m soneone prone to taking a loud stance too…but I hope when I do that my comments are always backed by some sound evidence. I think you are quite wrong to describe tamoxifen and arimidex as ‘toxic carcinogenic drugs’ and to say that they make no difference to survval. You are wrong. These drugs are effective in some women and one reason why the 10 year and 15 year survival rates (as well as the 5 year ones) are better is because of the success of these drugs over the years. I know many women whose lives have undoubtedly been extended…through longer periods of remission…because of these drugs. They may not be miracle wonder drugs but they are among the best drugs there are for tackling some types of breast cancer. I put herceptin in a similar ‘not quite a wonder drug but best there is so far’ category.

I am someone who has had 30-40 cycles of chemotherapy (depends how you count) including chemotherapy during primary breast cancer…knowing the odds of 5 year survival improved about 5% from about 40%. I was NED for two and half years after treatment finished…and you’re right…I don’t know whether the taxotere I had after surgery is what kept me in remission or whether I would have been in remission anyway. Yes my cancer came back and I’ve now just about finished all the chemo options there are and my cancer is still here and slowly progressing. I am personally pretty sceptical about chemotherapy and I agree that some oncologists are less than open about the statistical chances of chemotherapy working on primary and metastatic breast cancer Indeed the real figueres are hard to stomach but some people (not all) do get good life enhancing results out of chemo. But this is often about oncologists’ poor communication skills…I don’t think its a conspiracy on behalf of the medical profession and the pharamaceutical companies.

I reckon we all need to be campaigning for better treatments, for research into the causes of breast cancer, and for cure…but in the meantime making inacurate statements about drugs which are saving and prolonging some lives…helps no one.

Jane

i hate taking aromasin but i have to admit, the write ups on all the aromatiase inhibitors was very encouraging, yes, the side effects stink, and i found arimidex as bad as aromasin but in different ways, at the end of the day its currently the best that i can get and i am learning to cope with the side effects as best i can as i am too scared to come off these drugs.
as Jane said, we have to encourage campaigning for better treatment and one day hopefully a cure, but i also think we should be taking our hats off for the research that has been done for women in our position who are so lucky to get the opportunity to take aromataise inhibitors as i really do think that they do a marvelous job at keeping this cancer bay.
Alisonxxx