Hello GinnyVM and a warm welcome to Cancer Chat, 

I am so sorry to hear you have been diagnosed with  metastatic ductal breast cancer. It seems to have been a real shock to you and it sounds like you have been suffering rather unpleasant side effects from Letrozole and Adcal and all these side effects have had a profound effect on how you are feeling physically and psychologically too. This is something many of our members have experienced and I hope they will pop by and share their experiences with you and how they managed to overcome these side effects. There is also a useful page on our website on side effects of cancer drugs which has tips to help you cope with these often debilitating side effects. I think though that in your case, it would be worth getting in touch with your medical team whoever prescribed you these drugs and mentioning how unwell you have been and that you are spending a lot of time bed bound. Perhaps get in touch with your specialist team at the hospital since you mentioned you have no GP service close to you. It may be worth considering changing GP surgeries too if you feel there is no adequate service where you live and finding out where you could go to talk to a GP as everyone is entitled to GP care so I am sure there will be a way to get to talk to someone. As it's the weekend, it might be a good idea too to ring 111 and explain your situation in detail, say that you are feeling isolated where you live and whether they could point you in the right direction. 

I think it is really important that you manage to get through to your medical team/specialist so you can get a solution to these side effects - only they will be able to change your drugs for example or the dosage if they feel it is necessary so that it all becomes a lot more manageable for you and you can regain some quality of life. 

I am sure that despite the fact that you live in an area where you feel the service is very limited, there will be ways to get support and help. You can read more about this on our page on support for you at home and your family which will guide you through resources which may help you such as community nursing support which you could look into, social workers who could advise you too and local support services.  Have a read also on our website of our section on Who Can Help? and I hope it will help you feel a little less alone, that there is help available for you even in your area I am sure. 

For support and information, you can also call the Cancer Research UK information nurses. They can give advice about who can help you and what kind of support is available. You can ring them on freephone 0808 800 4040 - Monday to Friday, 9am to 5pm so don't hesitate to pick up the phone tomorrow and talk things through with them. They are really lovely and will I am sure have good suggestions for you. 

Keep strong GinnyVM I know it's been a really difficult time and I hope that you will manage to talk to a medical expert soon so that they help you cope with these awful side effects. If you feel really down at any point and want to talk to someone, the Samaritans helpline is also there at any time of day or night so don't hesitate to contact them on 116 123 - it helps sometimes to talk to someone.

Many of our community members will understand what you are going through and I will let them come and say hello and share their tips, helpful suggestions and experiences with you.  We are all here for you anytime you need to talk. 

Best wishes, 

Lucie, Cancer Chat Moderator

Ginny

I feel for you with these dreaded side effects. What brand of letrozole are you on? You may be aware that different brands affect people differently.

I was put on Cipla initially by hospital as like you I have breast cancer mets in bones. A few early side effects - vaginal spotting, headache, stomach ache - soon passed after 2 weeks. When it came to my next months' supplies by GP, I was given Manx. My god the difference! I have been feeling near suicidal, aching everywhere, running to toilet with diarrhoea every few hours.

The problem is pharmacists can't/won't give you a specific brand even if named on prescription by GP like mine is. I am currently now not taking anything because I can't go on feeling like I am. I have trawled round dozens of chemists trying to get Cipla but none can guarantee it. They just tell me they 'don't  know what they'll be sent'. It's bloody disgusting. I do wonder if private patients get better treatment and the drugs they ask for?

Do mention to your GP about maybe trying another brand of your drugs if suffering badly, as you may fare better. There are a lot of us feeling like you, so you are not alone.

Your GP can put you in touch with a district/community nurse if you need. Also I was referred to our local hospice palliative care team, who regularly phoned and visited and who were there as a sounding board and were able to prescribe and advise where necessary, for instance, you may need some help to deal with the nausea, headaches and other side effects you are experiencing.

Hi Ginny,

A very warm welcome to our forum - the one that nobody really wants to join!

I am so sorry to hear about your diagnosis and about how you feel since you started treatment. Have you discussed this with your specialist nurse? She is always at the end of the phone line to give you any advice or support that you need. I have found mine to be very helpful, even though I can never get straight through to her. However, whenever I leave her a message, she gets back to me as quickly as she can.

It can sometimes take 2-3 weeks for your body to get used to this medication, before things begin to settle. If you are having so much bother with this brand, do discuss this with your nurse, as she can probably suggest a different manufacturer. The other thing that sometimes helps is to take the tablet at night, instead of in the morning. If this doesn't work for you, there are other treatments available. I am 73 and have had 2 bouts of breast cancer in the past 13 years. I took Letrozole for 6 and a half years and found the side-effects really challenging. I had a large proportion of the side-effects mentioned in the literature, but the bonus is that I am still here today.

I can understand how you feel about treatment and whether or not to continue with it. You wouldn't be the first person to decide not to proceed. It sounds as if you are in a pretty isolated area and I am amazed that you do not have access to any GP services. My parents-in-law were in a similar position to you, aged 97 and 93, they had no regular support. I tried to do what I could, but felt that this wasn't enough. I ran my own business, which was patient centred, so I couldn't just stop everything at the drop of a hat, to see to their needs, yet this is what they really needed.

I was put in contact with a social worker and she was absolutely fantastic. We saw her on the Friday and by the Monday, she had arranged for carers coming in to see to their personal needs 4 times a day, she had hospital beds installed, had arranged for the district and practice nurses to call and had arranged an array of build up foods and incontinence pads to be delivered. Their GP refused to carry out house calls, but she had gone to see him immediately after our meeting and he was out straight away to see them.

All of this made a big ifference to their quality of life, as I'm sure it would to you too. Do you have any family who could look into getting such a service in place? If not, and you cannot get hold of your GP, I would suggest asking you cancer care team to set the ball rolling for you.

A cancer diagnosis is a lot to deal with and is a big shock to the system. It is not at all unusual to feel anxious and depressed. Many of us have to take a mild anti-depressant to help us cope. Please don't even consider the "unmentionable". You still have plenty to live for. If you are feeling particularly low, the Samaritans are a great listening ear and source of help.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hello Lucie

Thank you so much for your detailed and helpful reply to my first post. I am so grateful that it is clear you took the trouble to read it thoroughly and give me some encouragement and suggestions. At present I do feel overwhelmed and that everything is out of control in my life but I am happy to report that my daughter has been in touch with the oncology team treating me and had discussion with our designated nurse, who in turn has managed the miracle in this area of getting me a GP appointment at our local practice as she feels an antidepressant may be helpful. When I feel more clear thinking and energised I will have a look at your website in the various areas you have directed me. I will TRY to be more positive but I am not this by nature being reclusive and also agoraphobic. I greatly admire the amazing "brave fighters", wish I was like them, but I am not. Thank you again for your swift and useful reply. GinnyVM