Lisa's brain mets update

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21

hi Zotam

i understand exactly what you are all going through, check my history. but in sep 06 i had brain radiotherapy which kept things at bay for 5 months. when they started to grow back and as i am her2+ i was put on the the lapatanib/capectaibine trial which again worked for 1 year until i had 3 fits in feb 08. off all cancer treatment now while they sort out fit tablets and steroids. have just finished 5 days of brain radio so lets hope it works. i have a 17 year old so every second counts, all i can say is keep fighting keep strong and take anything they offer you. i have sorted all my affairs letters to Louise/husband/sister/brother, said what i want had my funeral etc its all about having control for as long as possible.

there is another girl kitkat on the secondaries forum who also had brain radio in aug 06 and she is still clear of any symptoms so there is hope.

i do hope this helps but i do sometimes feel desperate, feel free to contact if you want. my birthday monday age 48 never thought i’d make that.

Mitsou

22

Dear Sue

You are right; her brain tumours actually seemed to be under control. The largest tumour was at the base of her brain. This seemed to affect her the most. She developed a twitch in her right hand which ultimately resulted in her having very little use of that hand. Surprisingly enough she became very capable using her left hand and managed to apply makeup including mascara using her left hand better than most people do using their “proper hand”:-))

In May 2007, a year after her diagnosis, she was doing so well. We thought that if we could keep buying her pockets of time, one day we will put the TV on and there will be breakings news that a miracle drug had been found. (A bit of wishful thinking hey). Towards the end of May she started feeling nauseous and really struggled to keep food down. She felt full all the time. She thought it could have been a tummy bug. When she went to see her Oncl he told her that her liver cancer (the one that we thought was the lesser of all the evils) had spread rapidly. He did start her on new chemo but in hind sight I think that was more for our benefit rather than him expecting this massive result. So ultimately I would say that her liver failed.

A South African friend of mine told me about some “chemo patches” that could be implanted into the brain/skull. His wife had passed away from breast cancer a few years earlier and he was still in touch with support group she belonged to. One of the ladies had recently had it done. It might be worth investigating. I did speak to my sister about it and she brought it up with her Oncl but as her treatment was going soo well they felt it best to stay on that track.

Sue, everyone is so different. And people respond differently to different treatments. I unfortunately don’t know what “strain” my sister had. I just know that it wasn’t herceptin receptive and that it was a particularly vicious strain. For some reason she didn’t seem to know much more than that and when I asked her she just said that she had BC – does it really make a different what type…so I didn’t push it.

She too was taking steroids and at one stage was taking 8 tablets a day. She did manage to wean herself down to a much lower level as she hated the “moon-face” side effects. They definitely made her feel better though.
She also used to get very tired although she felt that this was partly due to boredom. She did start taking small walks which seemed to help build up her strength.

I just want to echo what Sunbird said. Be kind to yourself and take good care of yourself as you are going to need your strength to support Lisa.
We were lucky enough to have a spa near us which had a floatation tank which I would go to with her. She loved it and to be honest so did I. Also our local hospice had pamper days which she was able to go to. It was something small to look forward to.

I also found these sites really supportive. It was somewhere where I could ask the questions I was perhaps to scare to ask my sister outright. Also, you could chat to people who had an idea of what you are/were going through. None of my friends had ever experienced losing a sibling so really couldn’t begin to understand how we were feeling.

How is Lisa coping with this all? Is she shutting people out?. Is she really angry at the world? My sister really shut people out. One of her friends said to me that she didn’t know what to do as she felt that my sister didn’t want to see her etc. I said to her that it wasn’t about her and that she really didn’t want to see anyone. She hated seeing the sympathy in their eyes. I just said to her to keeping banging on the door which she did and eventually my sister started letting her friends back in. Being a sister I had the right to just barge my way in :slight_smile:

Kind regards
Arlene

23

Hi Arlene
Thanks for that.
Lisa is very frightened at the moment because she doesn’t feel well … ‘funny’ head is how she describes, like permanent flu symptoms and is very tired and lethargic. Gets pressure in her head when she walks upstairs or moves around . She only manages a few hours a day usually in the middle of the day where she doesn’t feel too bad. I am hoping that some of it is the steroids and also anxiety. At least the steroids stopped the headache pains and sickness.She is worried that having to wait another week before her op is going to be too long and that the tumour will have grown again making the whole situation worse. It is quite a big tumour in the front. Yes she is too shutting people out. Doesn’t want people to see her like this … so lethargic and washed out and doesn’t feel like talking to people … she is Ok with us and her boyfriend ( fiance). She has her MRI ready for op on Monday and is going to say how scared she is at having to wait and that she feels she is getting worse each day. The problem is the theatre at Southampton … the first free day he can get it is Sunday … we were so hoping the way he was talking last Weds that it would be before then … thats why she is so worried. We live in Bournemouth by the way but have to go to Southampton for the brain surgery.
Will keep you posted … I feel so screwed up about her being so frightened … so helpless… just want to cuddle her up and make it go away. She says she just doesn’t know how she will go through another week feeling like she does.
Love Sue x

24

Hi
I come on here now and again to see how people are getting on so thought would give my input. My sister died at end of Nov she had brain mets which ultimately led to her death. Although it is devastating your daughter is still alive and new treatments become available so you have to keep positive (extremely difficult) my sister was told she had 6-12 months with WBR ,she died after 4 yrs.Her treatments included WBR gamma knife and various chemos , the mets make the blood brain barrier “leaky” so certain chemos have small molecules that are able to cross into brain. Capcitebine worked for just over a yr.This time last yr she was still working, we lost a wonderful sister and 2 little girls their mum but those 4 yrs gave her the time to see and do things she really wanted. One of the most important things I can say is read everything you can about new treatments and always ask about them.
Hannah

25

Hi Sue,

Your post takes me back to places that no-one, never mind a parent, should ever have to visit. The waiting will seem like an eternity and you will feel as though your life is on hold. I know there are vast differences between my little girl and Lisa but I just wanted to give you some timescales as to what happened in our case, which may/may not help.

MRI on Friday afternoon - surgery on Friday evening to relieve the pressure and to have a shunt fitted (this is a device that drains the build up of fluid away from the brain into the stomach - not sure whether this will be needed in Lisa’s case).

Surgery on the tumour was carried out a few days later on the Wednesday.

One of the jobs that the steroids will be doing in the meantime is to help stabilize the area around the tumour.

One of the hardest times to come will be when Lisa is in surgery - what do you do when your daughter is having brain surgery??!! We had no choice but to try and keep going as we had our second child with us who was only 4 weeks old at that stage. You don’t want to go anywhere, you don’t want to talk to anyone but you will need to do something as brain surgery can last a long time. Also be prepared in case you are met by a whole team of medics with surgical masks on - this happened to us and I think that was the point it hit me that this was not a nightmare - this was really happening.

Avon and hanbags above are right to keep researching, at least this will give you something to focus on. Avon talks about wafers and I think she is referring to Gliadel wafers which are what they say wafers but with chemo on which are inserted at the point of surgery. However, I think these are only licensed for primary brain tumours at the moment - maybe you could check the NICE guidelines.

For the future, something to enquire about for Lisa whilst she is recovering, there is a charity called The Willow Foundation, which is run for adults aged between 16-40. It was founded by a former goalkeeper for Arsenal, you may have heard of him, Bob Wilson. His daughter died in her early 30’s from cancer and he set this charity up in her memory. It helps to improve the quality of life for adults with serious/critical/life threatening illnesses, from special days out to breaks away.

Thinking of you all. Lots of Love xxx

26

Dear Sue LIke others all I can do is say that I am thinking of you.I too have a 33 year old daughter and your situation is unimaginable to me.As someone else has said I am so glad it is me not my Jo who has this horrific disease.No young woman should have to suffer like that and no mum should have to go through what you are experiencing.My love and prayers to both of you.Valx

27

Dear Sue

Like eveyone else, your worry over your daughter has made me think about you all day

I just want to say that I have a very amazing dad (i’m 36 and still his baby) I have seen this illness destroy him, my illness has taken over his life, my fear has become his, he is constantly there to hold my hand and reassure me, I have had 2ndry BC for 4 years and I can honestly say that 20 hours a day 7 days a week is spent on him finding the very best treatments, options, opinions…I have travelled all over the UK seeing various specialist to ensure i have the right treatment, I feel so sad to hear you say ‘to have your daughter for a few extra years would be wonderful’ its not a lot to ask is it? I am also a mummy to a 9 year old little girl ( who is my life) and the feeling of leaving her behind eats me away. As parents we feel responsible for our children - we crave them, we want to protect them, and the out of cotrole helpless feeling that we are left with, is a feeling like no other. I can really only understand how you feel, the fear your daughter feels (i suffered with terible panic attacks - shut myself away from my friends, I would only ever want to be with my dad and my partner) There is so much to take in, but the only advice I can give …is to take one day at a time, think about today and tomorrow, and gradually build yourself from there after her operation. In my 4 years I have heard of many miraculas storys. As a human being you must beleive there is hope for your daugher that she will have some kind of future, ( you have heard of some of the storys the girls have written) this will help you all to get through this, you must NEVER give up hope (its what keeps my dad going) by thinking in this way you have nothing to lose, a lot of people go into denial, but I can clearly see that you know where your at. . I had a fabulous day arranged by the willow foundation - which was mentioned in the thread a couple above. It is a very big step to get your confidence back after something like this, I also found that the steroids where making my panic attacks worse. I can relate to your worries at every angle , being a mummy and a daughter. If you can get your head around it, maybe look up some specialist surgeons, there is a web site called Dr Foster online - i think you have to pay to go onto it, but it will tell you all of the best surgeons and how to get appointments with them.
I wish you all the luck in the world and lots of strength for your coming weeks
Love Amber xxxx

28

Just wanted to send you my love at this difficult time. I have no experience in this area of mets, but I know the ladies on this site offer valuable advice and comfort when they can. I will keep your daughter in my prayers.

Take care

Debbie

29

Hi Sue

My words are few, but I would like to send my love to you all at this very worrying time. I sincerely hope some effective treatment will be available for Lisa.

Look after yourselves and take care.

Love, Jen x

30

Thank you everyone. The big day is Sunday when she goes to S’hamton to have the operation to remove or remove part of the large tumour in the front of her head. I pray that she comes through it and I also pray for strength to get me through it for her sake. If all goes well she will then have WBR for 4 weeks to hopefully get rid of small tumour in base of skull and to clear any other mets that may be lurking there. She is in for a bumpy ride for a few months but to start with we have to get over Sunday … we know this op carries big risks but if she comes through that we will have a thread of hope for a little while longer.
I so appreciate all your thoughts and comments … it really does help to know there are people out there routing for us and who understand.
Love Sue x

31

Dear Sue,

You and Lisa are in my thoughts and prayers. I too have no experience of brain mets but have read the messages from those who do have something tangible to contribute. I have followed your posts about Lisa over a long time.

Margaret x

32

Dear Sue

I have read all these posts, and my heart goes out to you. I would like to say that I hope Lisa’s operation goes well on Sunday and that it is successful and you can then move onto the next step and Lisa starts to get better (as much as can be possible), and give you, Lisa and your families more precious and memorable times together.

Will be thinking of you all on Sunday and hope everything goes OK,.

Lots of Love
Dawn
xx

33

Sue

I have been following your posts and my heart goes out to you all. I really hope that everything goes well on Sunday - my thoughts will be with you.
All of us on here send you cyber hugs and good lucks - for more precious time with your daughter. I can not imagine what you are all going through. Keep strong.

Please take care,love

Anne x

34

Hi Sue and Lisa

I am so very sorry to hear of Lisa’s brain mets, we spoke regularly as I was going thru my dx and lat dorsi and I was so inspired by the way Lisa was coping back then.

It just breaks my heart to hear of how this demon illness has invaded your lives and I just want you to know that you are in my thoughts and prayers and that I will, like everyone else on this link be anxiously awaiting good news following the surgery on Sunday. Lisa has been so brave and you too Sue.

I wish I had a magic wand to make Lisa better and as a Mum myself I can only imagine what you are going thru Sue, you are strong I know but this will have shaken your foundations. I know you will be strong for Lisa and I do hope that your family are supporting you as well as Lisa. All the very best for Sunday to both of you and to your family.

Take care both of you,
much love and hugs Carole xxx

35

Only just realized that you had answered on here Carole … I had just written to you on the other thread. thank you so much for your thoughts and comments. Sunday will be my longest day. It all seems so unfair seeing as she was doing so well. We keep saying that surely we are going to get some good news soon. as long as she comes through this op on Sunday we can breath easier for a while. I will keep you posted. She is being so incredibly brave.
Love Sue xx

36

Dear Sue,

I’ve been on the point of adding a comment for so many days as I have been following your posts only to be stuck for words.

All I can add is that I pray everything will go well on Sunday and for the long road of treatment ahead. You will all be in my thoughts.

Take care,

Love

Denio xx

37

Dear Sue and Lisa,

As Denio has said, I’ve wanted to add something, but have found myself lost for words. I will be thinking of you and Lisa on Sunday, sending positive energy your way by the shed load!

((Hugs))

Sara.

x x x

38

Thinking of you x

39

Sending you my best wishes for Lisa and you Sue on Sunday - will be thinking of you both.

Love,

Sally xx

40

Dear Sue,

My wife was a regular here, also diagnosed with secondary bone mets at age 31 in February of 2005. She went so well for a long time with the mets spreading, but all the while only in the bones. She was taking Biphosphonates which worked so well, and had radiation on her spine, which took her from a wheelchair to full mobility again. Other than the kyphosis (collapsed spine), she was doing well on a day to day basis.

She decided in November 2006 she would no longer do treatment, as the markers would rise just days after she would complete a cycle, and so she decided to focus on ‘quality’ rather than ‘quantity’. Something I, and her family found hard to accept, but we supported her out of love.

With BRCA Brease cancer, she started getting headaches in May of 2007. Despite this all organs were OK. Come July, she had numbness in the lower side of her face, and spasms in her hands at night when sleeping. Following tests, she had mets in her Brain fluid.

In July she had WBR which worked wonders! It alleviated the numbness, the spasms, everything. To be honest, radiation worked well - the obvious downer was the permanent loss of hair, and the fact she had to take steroids with the associated side effects.

In August she deteriorated a fair bit and we found the mets was now in her liver, as well as in her lungs in a condition called lymphangitis. Thankfully, she never saw the effects of the liver mets as this was only new.

It was actually the lymphangitis that caused her to pass away, so I do have every faith that with successful WBR, your daughter will have good results in terms of brain mets and symptoms.

As someone else said, everyone responds differently, depending on age, genetics and strength of immune system, but I have every bit of faith that the WBR in conjunction with the operation, whilst understandably delicate, will yield excellent results indeed in any brain related symptoms.

Sending you and your daughter lots of strength,
-Taz