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Newly diagnosed with brain mets please help

11 REPLIES 11
bill-ben
Member

Re: Newly diagnosed with brain mets please help

So sorry to hear that you have joined the brainy band! I have mets in my spine ribs and liver and brain. I was initially diagnosed with the breast in March and the rest followed in the next couple of months. I had 5 sessions of radio on my brain first followed by chemo. Long story but I landed up with an infection in my scar then couldn't eat at all! After not eating for nearly 6 weeks and not drinking alot either I had to be taken off the chemo as I lost 3 stone in 2 months. Not the right way to go about losing weight but  much needed and still more to go! I am now on Letrozole and bone strengthening injections and calcium & vitamin D tablets. Before I was diagnosed I broke a rib leaning over the armchair to stroke the dog but apart from that I have no symptoms from the bones and liver. My legs are still a little wobbly but how much is due to the brain and how much from the severe weekness I had from lack of food and now the Letrazole I don't know! I have lost about 80% of the vision in my right eye because the tumour is pressing on my optic nerve. Since coming off the chemo I feel really really good. I still get tired but can manage to do basic house work and cooking and go out for a short walk every day when it's not raining. We have two options we can sit in a corner feeling sorry for ourselves ( which naturally we are intitled to do every now and then) or we can get on with life and try to enjoy every minute. I am ever optamistic that there is some treatment that will hold things at bay but talk to your family and friends about what you want. AND laugh alot. I know that it sounds odd saying laugh about something like cancer but I find it really helps. Great  for excuses for things. Don't fancy doing the house work because you in the middle of a good book, oh dear bit tired today!! I can think of a list of excuses I have used!!! I am really lucky that I have a wonderful family friends and neighbours round me and hope you to have good support. I also have a Macmillan nurse who I can talk to at any time so it might help you if your health team can recommend you for one. Anyway stay positive laugh alot and enjoy your family!! Cancer is a very individual thing what seems to work for one might not work on someone else but there is a magnitude of treatment out there. Read the posts there are some really inspiring stories and alot of support if you want it  Vicky. 

SDP
Member

Re: Newly diagnosed with brain mets please help

I used this last time my hair fell out and have just bought some more http://www.yinyangskincare.co.uk/organic_skincare_shop/organic.asp?skincare=Scalp%20Cream.  They always seem to suggest E45 cream but I'd rather use something a bit more natural.  My forehead looks like I have chronic sunburn! I made myself a load of nice soups and smoothies up for beginning treatment but to be honest all I fancied eating was toast and marmite (probably the steroids). Have put on about half a stone in the past few weeks - always nice before Christmas!

Princesspea
Member

Re: Newly diagnosed with brain mets please help

Oh and I'm HER- and very slighty ER and PR positive. I've been told it's aggressive, gulp xxx
Princesspea
Member

Re: Newly diagnosed with brain mets please help

SDP, you have really lifted my spirits, thank you for taking the time to share you experience with me. I hope you continue to recover well from your WBR and that things improve and remain stable for you. I will not lose hope for my children's sake, I want to see some more birthdays.
Any tips on getting through the WBR would be welcome, did you put cream on your head? I used aveeno for breast rads and it was fab.
Lots of love xxx
SDP
Member

Re: Newly diagnosed with brain mets please help

Hi there ... I'm sorry about your diagnosis - I was diagnosed with brain mets in October and it totally floored me. I had got to a good place dealing with my original diagnosis a year ago of lung, liver and bone mets and didn't expect anything new to have happened at all. Have you a treatment plan in place? I felt better about things once I knew the plan and have been assured there are still options. Are you Her2? I've had 10 lots of wbr and just in recovery mode which for me seems to be just feeling really tired. My hair has also completely come out but I'm told it's not the same for everyone. I like to think it means it has done its job but won't get a scan for a few months to know where I stand. Try and stay positive - they tend to treat the brain very separately to what else is going on and I've been sent some very hopeful stories of ladies doing very well after treatment. Wbr doesn't rule out either surgery or gamma knife or tomotherapy for the future and there is cape which is v effective and crosses the blood brain barrier. Since my diagnosis I think I have also seen some other combinations which may be an option! Xxxxx
Princesspea
Member

Re: Newly diagnosed with brain mets please help

Abi,
Thank you so much for sharing your experience, I'm so glad that you are enjoying family times. You are so right not to let this awful disease ruin the time that we do have left. We loved our holidays as a family and so hope I get to go on another one even if I can't fly. We only just got back from Tenerife where I was swimming, cycling and even surfing and then felt strange when we go back and boom! It's in my brain! Such a shock for my poor family, i knew something awful was going on but they just couldn't believe me.
Good luck and lots of love to you and here's to many happy memories ahead for both our families xxxxx
abilucy
Member

Re: Newly diagnosed with brain mets please help

I am so sorry you are in this position, it's just dreadful. I was diagnosed with primary and secondary in lungs in May and honestly wondered how I could function as I was absolutely devastated. I am 44 with a 6 year old and a 2 year old. 6 months on and I feel so much more positive, finished chemo recently and it has been really successful. As a family we are doing lots of lovely things and planning hols etc for next year. I couldn't imagine feeling like this back in May and I am sure it is because you have to put a brave face on and get on with things for your kids. I seem to take more joy from family life than I did before. There are loads of treatments out there and I am sure you will see lots of your little ones birthdays.

Abi xx

Princesspea
Member

Re: Newly diagnosed with brain mets please help

Thank you for your words ladies, I know tough times ahead but got to be strong for my children, my youngest isn't even one yet as my orginal diagnosis was in pregnancy. How can life be so cruel?! My onc has promised I will make her birthday but beyond that it's scary even to think about. I will check out the thread you mentioned and pm you Jo xxx
bertie1
Member

Re: Newly diagnosed with brain mets please help

No princess pea so sorry to hear of our recent diagnosis but you will get plenty of support from the lovely ladies on this site.You will have good and bad days but try to stay positive and take each day as it comes.
Take care
Kaye xxx
Mitch23
Member

Re: Newly diagnosed with brain mets please help

Hi princesspea
I'm sorry to hear of your recent diagnosis. I don't have brain mets but have liver mets. I'm 46 with 2 children (44 when first had breast cancer) I'm currently taking capecitabine and on fifth cycle. There are lots of really helpful and supportive people on these forums. They tend to hang out on the cape site (xeloda) and the bone mets site. It's a horrible time and you really do have to force yourself everyday to keep going. You will have good days and bad but you have two beautiful children and everything to fight for. Take each day as it comes - one step at a time. Is you want to chat off the forum private message me. I don't mind.
Sending hugs jo xx
Lucy_BCC
Member

Re: Newly diagnosed with brain mets please help

Hi Princesspea

I am sorry to read that you are having such a difficult time, I am sure you will find lots of support here to help you and please also feel free to call our helpliners for further practical and emotional support. Lines are open today 10-2 and during the week 9-5 on 0808 800 6000

Here's a link to the BCC secondary information and support which I hope you will find helpful:

https://www.breastcancercare.org.uk/secondaries

Take care
Lucy BCC

Princesspea
Member

Newly diagnosed with brain mets please help

Hello ladies,
I've just been diagnosed with brain mets and wondered whether anyone else out there is dealing with the same nightmare and had any words of wisdom or support.
I'm only 35, have two young children and I'm absolutely devastated. How do you keep getting up in the morning and get through the days ahead??
xxx