Had my check up Wednesday with my oncologist - he has taken me off Letrozole and the Zoladex injection for a month as I have really been struggling with the side effects - he said that my quality of life was more important than the 2% it gave me for prevention of reoccurrence. Once my body has adjusted back he said he will try me on another drug, but wouldn't necessarily be Tamoxifen. Obviously have mixed feelings about this decision!
On top of everything I have had a really bad sinus infection on my second course of antibiotics but they don't seem to be working. I'm guessing all of this is because I have been so low.
I feel like all I do is whinge at the moment. I know my BC journey has been pretty straight forward compared to some and I should be grateful for small mercies. But I can honestly say I have never felt so ill as I have the past couple of weeks. I haven't even been able to eat my Easter eggs - so must be bad! Sorry for moaning but just needed to vent.
Love to all of you wonderful ladies 😘
Louise xx
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Louisejr
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Sorry to read of your struggles, i know its hard if you just want to curl up under the duvet but perhaps take yourself for a short walk, if like me you need a reason for a walk, aim for a local coffee shop and treat yourself to a sticky bun as a reward for having your walk, your Easter eggs will be opened and enjoyed whilst you're having a glass of wine in a few days when you're feeling better, anytime to need to vent your feelings, we're all here for you, as you've been here for us, look after yourself xxxxx
I've been glued to my hot water bottle as the pain in my ear and face has been unbearable - had about 3 hours sleep since Wednesday. I think part of my problem is I don't usually give in but this infection has knocked me for six. I've even rung in sick at work which is unheard of!! Anyway must keep positive - thank you for being there - the instant I pressed post I felt a little bit more positive - a problem shared and all that!
hi louise! im sorry to hear that. are you taking any antidepressants? im on effexor and i think the symptoms of being down are a bit more manageable for me. im on tamoxifen and zoladex injection
Hi janaphi no I'm not on antidepressants the oncologist thinks my mood should lift now and it's just finding a drug which isn't so bad with side effects - although I do appreciate there will be some level of side effects whatever I take xxx
Hi Louise, sorry you are feeling low and having a rough time. We are all here for you if you want to offload. I hope you will feel better day by day and get strong again. The BC journey is hard enough without other things being thrown at us. I have awful side effects from letrozole, started last September and I know "it is better than the alternative". I know we all get ill from time to time, is it just me or does every little niggle but the fear of God into you ladies that something may be wrong. I am not a hypochondriac but everything seems so much worse! I wish you well Louise, take your time re return to work.
It just seems to be one thing after another at the mo - after yet another visit to my docs yesterday I'm now on my third lot of antibiotics - and I must say after a better nights sleep am feeling a little better this morning.
Yes I agree every niggle does seem to bother me more now, I guess because having BC questions our mortality.
On the plus side the break from the drugs is also noticeable, I can actually turn over in bed without everything hurting - so I am going to make the most of this short break from them.
Hi Louise bless you no ones bc journey is straightforward! This disease is insidious, sneaky and untrustworthy. It invades both our physical and mental. It is totally invasiv.
And d your meds have been troublesome from the start so well done on sticking with it til now.
It's not just been the meds you've had to deal with, there's been work demands (end of tax year), post surgery healing, not swimming, domestic stuff and now a stubborn and beastly infection!
Vent by all means, especially here 😖😤😤
As for the Easter eggs that's just another blow! But know this, you will feel better soon when the infection is gone and you will eat them. BTW mine tasted odd due to chemo but dammit I persevered! And have one bar left to eat! 🍫.
Anyhoo your post about your grandmothers diaries was delightful and positive; never mind transcribing them, just reading bits must be fascinating.
I am now taking sertraline, an anti depressant as per my gp and I'm supported by the acute oncology specialist nurse who is seeing me instead of my ONCO. I'm glad. I am so much calmer. I know it is temporary and it gives me just a little bit of control back over what's going into my body. Meds! What a minefield!
Continued good luck with finding the right meds going forwards, Louise, I am sure it will happen. Meantime try not to put too much pressure on yourself, be kind to yourself, maybe a massage? Some time in the sun, perhaps?
Venting is definitely good - it does make you feel better doesn't it?
I was so poorly yesterday - the worst I've been throughout all of this - my Doctor said if I got any worse over the weekend I would have to go into hospital as may need antibiotics intravenously to fight the infection, which had localized in my throat and roof of my mouth. 🙄 Thank goodness this latest round of antibiotics seem to be working as I have woken up this morning, with no pain and the swelling and my temperature seems to have gone down. My other half has just commented that I seem a lot better today as I've not stopped talking since I got up!
I am half pleased about the change of my meds but also slightly concerned as you obviously want to be able to withstand what they prescribe as the best option.
Pleased you are feeling calmer, and yes it is a minefield. A little help along the way is not a bad thing either. I have booked us a mini break - just to Northumberland at the end of May as I feel a bit of beach walking is what's needed and the beaches are beautiful there.
I must get back to my great grannies diaries - we have a local heritage centre and they said they would be interested in them.
Persevere with the choc - when all else fails you can't beat a bit of chocolate.
Louise, I am in the same situation and have been off Letrozole for 28 days and don't know what to do about changing to another drug or coming off completely. I am still tired and my knees hurt, I think I am in the menopause because I came off hrt September 2015 and I must have gone into menopause straight away. Hope so, because it could disappear soon ???!!! Maybe it's not the letrozole!!! Love Marina x
I'm guessing it takes time to get fully out of your system. My Oncologist has assured me that there will be something out there that won't be as bad as the side effects I was having.
It messes with your head though doesn't it? On the one hand you want to feel okay, but on the other you want the best option to protect you against reoccurrence even suffering the side effects. That 2% is huge when you have been through all of this.
Awh, Louise, I'm so sorry to read you're feeling low & have a nasty sinus infection, are you taking any pain Meds? Did GP recommend taking any? You can always ring the Chemist & speak to The Pharmacist as something might help along side the AntiB's! A walk on the beach in Northumberland sounds great, I remember the boys giving me Chicken Pox & walking on the beach in Llandudno making me feel human again!
I'm glad your Consultant has agreed to give you a break from the Meds for a month, I hope you get over the Sinus Infection soon & that you feel better with a break in the Meds.
I'm off to see my Oncologist on Monday, so see what he's got to say & then I have my Bone Infusion on Wednesday but I seem to take that in my stride any side effects blend in with my other aches n pains!
I've missed your posts - hope you've had a lovely time.
Just been taking paracetamol, but the Chemist recommended some throat lozenges yesterday which contain a mild anesthetic and antibiotic, which have helped numb the pain in my mouth. According to the doctor yesterday this infection was 'raging' well it does finally seem to have calmed down thank goodness!
Like I've said in previous replies - mixed feelings on being off my meds - but you just have to go with it don't you. My oncologist is lovely did feel reassured by everything he said.
After many visits to North Wales we went to Llandudno for the first time last year - what a beautiful place - will definitely be visiting again we only stopped off on our way home.
Back to reality now then with the Bone infusion etc - would love to do a cruise - bet you've seen some amazing places.
I completely understand what you're going through. I had very poor reactions to those drugs too and more so we (my oncologist and I) agreed to stop everything and to be extra vigilant with my after care. I'm continuing with my normal breast care routine but one of my biggest fears is ovarian cancer so I now have a yearly vaginal scan and regular blood tests (CA125). I feel much better in myself now (still get down days but I think that's normal) and safe in the knowlegde that I'm doing everything I can to prevent any reoccurance.
You really do have to way up the pro's and con's don't you. Ovarian cancer is a worry when you have exceptionally high levels of oestrogen like me, and my BC being a hormone positive tumour. I am four days into not have any drugs and have not had as many hot flushes and my joints don't seem as stiff. So I won't be looking forward to trying other drugs in a months time.
And yes I agree - a good old moan does help you to feel better too 😘
Hello out there. It has been a rough 8 month journey being a caregiver. My wife had stage 2 breast, had a lumpectomy. All was good until the first day of 30 radiation treatments. Now the bone pain is getting more and more pronounced for her. she wakes up all most every day wanting to cry because of the bone and joint pain. Is there any natural remedy to help with the pain? We are so tire of the lame excuses of what the pain would be. can anyone give e some idea if this is temporary or permanent? she had 12 taxol and 2 adriamycin / Cytoxen. We feel we are doing everything right. Eating plenty of fruits and vegetables, exercising daily. getting good rest most nights. We know the vitamin D is 17. But I do not think this would cause this much joint pain. My wife is very active. not an a health nut. This is now going n for 4 weeks. It is really starting to effect both of us. She stays positive around most people but being the caregiver is brutal knowing she is really hurting. I will also say I have helped others in my community being a care giver. Being a support person for someone else has also helped me too.
I completely understand where your wife is coming from with this. I have experienced really painful joints over the last few months since my treatment began.
My cousin who is two years down the road on this journey recommended bathing in Magnesium Flakes, and using Magnesium oil directly on your joints, and I must say I have noticed a difference. I also eat pineapple and figs as these too have properties which help the joints. Walking is recommended but it sometimes is the last thing I feel like doing when the pain is so bad, but when I do manage a walk I usually follow it straight up with a bath in the magnesium flakes. Swimming is also very therapeutic for me, I feel quite normal when I am in the water.
It is difficult to explain to people about the pain, and for them to understand what you are going through, you sound just like my husband, we did have a conversation a while ago of how he is going through this with me and how hard it is to see me uncomfortable and in pain, leaving him feeling so helpless to help me.
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kisses and good luck!
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