Brain Mets Sisters

Tillycat

Laurie - I hope they drained lots of that pesky fluid and let you go home again after. Salcombe is so lovely, you really deserve to have a bit of R&R there. The docs are always saying that we should have holidays so hopefully they will work hard to make sure that you can go. At least you can be fairly confident theat the havalan works when they give it too you, didn't the fluid build up really slow down after the first dose? You just need the neutrophils to come back up and then you can get back on the chemo train heading towards stable (it's what I keep hoping for anyway) 😃



Spark - Sorry that you are struggling with the pain and other SE's

In the UK the medics sometimes arrange for people to go into their local hospice to get their pain meds sorted.  It's where the experts are.  I was admitted to hospital a few months back when my pain got really bad ( it was over a weekend so I went in through A & E) They were lovely people but didn't really know how to sort it out.  In the end it was a Macmillan nurse who came to my home and worked with me on which meds were best. she was great. I see her very month or so now and so far my pain and other SE's all seem to be well controlled.  Do you have anything similar in the states?



frapp and Cathy2 - I kind of played around with Apples scarf after it arrived to get a look that stayed on my head and didn't look too silly.  In the photo I have used the basic tie shown in a you tube clip - it is called



 'the easiest way to tie a headscarf without knots'



I usually put the scarf on asymmetrically and then use the hair tie at the side instead of at the back.



You can also find it on her blog - 



http://eyelineher.blogspot.co.uk/



The eyeliner application  video is really good too, now I'm losing my eyelashes again I have been trying eyeliner out (although not quite as dramatic as hers!)



Another you tube clip is 



'how to tie a double wrap head scarf'



When I do this one I tend to twist the ends as it adds more bulk - the girls in these clips are so pretty they can have a tight scarf close to the head.  I need something a bit softer framing my wrinkles 😊



Only 2 days til blood tests and 1 week til onc appoint. I'm feeling loads better, surely. That must mean that the chemo's working (keeping everything crossed!)



Mxx

Frapp

Thanks Tilly.  That scarf looks beautiful on you.  I've tried searching internet for scarf instructions but never thought to search utube.  THANKS!!  PS, that scarf looks so nice on you that I ordered one.  I hope it looks half as good on me.

Pat

Tillycat

Aww thanks Frapp, you've made my day.

Now remember, and this includes you Apple, we must never go out together until we have confirmed that we arent wearing the same Apple scarves :-))

Mxx

Cathy2

Thank you Apple and Tilly! Love the no knot tying video, I will be ordering new scarf and trying that out!

Spark I hope they have your pain meds worked out and you feel better!



xoxo

mauimom

that no knot video is awesome!  i've never known what to do with the long tails i end up with when i tie my long scarves.  perfect - thanks, friends!

 and i'm off to my 4th weekly intrathecal herceptin treatment in a bit - here's hoping it knocks out more of the bad guys today!

 sending love and aloha to you all. 

K-Lo

Good luck maui mom.

I think im killing brain cells with 4 select 55's every night. I really want that buzz. Select has 2% alcohol so it takes longer and tummy gets full faster. Still why harm the little gray cells ( as Poirot would say)

Eireanna

Hello ladies,

this is my first post, so I will start by telling you a little bit about me. 

My name is Ana, I am 50 years old, single, I live in Dublin, Ireland, (been living here for the past 16 years), but I am not Irish and English is not my first language. Please excuse inevitabe grammar and spelling mistakes

Medical history : I am a BRAC 1 gene carrier, my mother died of an ovarian cancer (she was 38, I was 11), and in January of 2011 ( I was 48), I was diagnosed with breast cancer stage IV (IDC) and ovarian cancer stage 3C. Two different tumours, two different types of cancer attacking at the same time.

I went through the treatments : mastectomy, ovarian debulking surgery, chemo Taxotere + Cyclophosphamide and then Gemcitabine + Carboplatin. I even managed to get to a partial remission and my numbers were looking good.

To cut a long story short, a few weeks ago I started suffering from killer headaches and fearsome vomiting.

Went to the hospital covered in vomit, CT scan of the brain followed : multiple brain mets. They can see 4 or 5 tumours (but they are most probably more), largest around 3 cm, smallest a few mm. Swelling through out the brain.

For the past week I have been kept in hospital, on the usual steroids and antinausea. Symptoms have improved. No more vomiting, headaches almost completely gone.

Treatment plan : I start my first WBR session today, in a few hours. (Keep your fingers crossed for me, please!).  There will be 10 in total.

A break of about 2 weeks, then more chemo will be tried.

For now they're still treating.

Prognosis: I asked them, (many, many times), how long do I have to live, but they are very reluctant to give me any meaningful data. Without radiotherapy - 2 or 3 months. With radiotherapy - 6 months, 1 year or more, but it cannot be guaranteed and I can die a lot faster.

I cannot stop crying, I can't explain into words my level of desperation.

I need your help ladies, will you please spend a moment with me and give me a bit more info?

For the past few days I have been desperately reading every post in this thread, trying to learn as much as possible from your experiences.

It has been lovely meeting you all, and so helpful, but I'm looking for a bit more organized info. Please, I would like to ask you to write me a short line about your brain meds history. 

- How long ago were you diagnosed with brain mets?

- What was the treatment?

- How long have you managed to survive it? 

Obviously, I know all about the stories about 2 - 3 months, but I am looking for real data, from real women. Good or bad, I will take it all. I need to know. I want to stay positive (not easy), but also realistic.

Please take a moment ladies and help me.

 I am also thinking of opening a dedicated thread to - 'Brain Mets - Survability', where we can all write our short medical history and offer a bit more information about survability, for us, already here, and the ones that will be visiting in the future.

Sorry for such a long post, any help is much appreciated.

Ah! And by the way! You are indeed a bunch of amazing, wonderful, beautiful women! Good job on being who you all are

Thank you,

ana

K-Lo

Dear Ana,

I know you must be in a state of shock.  Thats ok  feel your feelings.

As you can find in this thread and others, many women have lived a long time with brain mets.  I know of a woman who lived 10 years.  But everyone is different.

I know for a fact that my original prognosis of 2 years was way off.  Either that or I have a few days left and yet I will be precleaning my house today, going to the Y, a birthday party, and finally getting my hair colored tomorrow.

One day or hour at a time.

((((Ana)))))

formygirls

Ana,

Welcome. My onc will never give a prognosis. It could be days, months or years. Try to take it one day at a time. I was dx with brain mets in April and had targeted radiotherapy in April since the then I had new tumors last month and will get new tx again soon---either radiotherapy or WBR. ((hugs))



KLo-- I like the sound of the select 55. I have never liked beer but I think I will give this a try today. I am more of a margarita, martini and sangria person.

Eireanna

First session done!

I'm just back from the radiotherapy ward, (still in hospital, but going back home tonight), with session no. 1 under my belt.

For others worrying or wondering, the procedure itself it really is not that bad and only lasts for a few minutes.

No flashing lights that I could see, but definitely a strange smell and taste in my mouth.

My legs suddenly feel woobly - not very bad though.

My jaws hurt. When I try to eat, the jaws hurt.

Other than that, not much to complain about. But I'm only 1 hour out of my first session, much too early to say.

I will have to have 10 sessions, 9 more to go.

Regarding prognosis from qualified medical staff, I will have to give it up. I've asked everyone and anyone, doctors and nurses and janitors included.

They either do not want to tell me, or simply do not know.

 2-3 months without radiotherapy, 1 year and they even mentioned 3 years (or more), with it.

It's not good enough, I'm hungry for more factual data and that is why I went ahead and asked about your own, real experiences. You're the best, ladies, by far

Can you please share your experiences?

How long ago were you diagnosed with Brain Mets? What was the treatment?

The idea that all I can get out of all this misery is going to be something like 2 months extra time drives me up the walls. I am weak ladies, I am not a strong person and I'm trying hard to learn how to cope with all this.

But then, I also have you!

Many of you here have successfully survived the darn Brain Mets diagnosis for a year, 2 years or even more.

That is so encouraging and I thank you so much for sharing

I am going to try my best to cling on to hope, to cling on to you and keep on fighting. At least for a while, at least for as long as they're still agreeing to treat me.  

Ladies, the nurses are looking for my room. I have to go now, but I will be back from home, soon.

They arranged for a taxi for me, so nice

Talk to you soon, please keep on sharing

Many thanks to all,

ana

alesta29

Ana



I was diagnosed with brain mets a few months ago and had WBR x5 followed by steroids on a tapering dose.



I didn't ask how long nor do I want to know. I an ER/PR + and HER2- and apparently it's relatively rare to get brain mets with this combo but you know what BC is like - totally unpredictable.



Take things a day at a time if you can. I find I don't worry about the brain that much as I figure my liver will get me first :-(



It's good to gather info. Have you looked at the site specifically for brain mets? Can't remember what it's called but google and I'm sure it will come up.



Laurie x

Mzmerz

I have a question regarding brain mets.  If you are diagnosed with them, are you automatically banned from driving?  

I've just had a brain MRI due to my passing out while driving (which I really think I just fell asleep) and am waiting for the results.  Nothing was picked up on CT, but my new onc said he would rather have an MRI done to catch anything early, if there is anything there.  My 16 year old is dying to get his license and I might have to let him get it if that's the case.

Thank you. 

formygirls

Msmerz,

Not in the US. I think it is different in Europe. IMO, in the US it depends on the location and the impact of the mets and is a decision made by the patient and the onc. This is what has happened in my case. I continue to drive based on how I feel.

alesta29

In the uk you are supposed to declare anything that may impeed your ability to drive. This covers everything from brain mets to diabetes!



So far I have had no symptoms from my mets but I tend to go with how I feel so if I have fluid building which makes it uncomfortable to sit or feel tired I don't drive.



Lx

Eireanna

Hi ladies,

how is everyone today? Feeling well? Living your lives and enjoying your time?

I certainly hope so, you're all so wonderful and deserve a bit of a break

My update:

yesterday I completed my second WBR session. It was fast, there was a blue light, strange smell and taste, but nothing much else.

However I can feel that my speech is slower and typing is becoming more difficult.

I can still walk, vision is as bad as ever, hearing is as usual. And, unfortunately, I hadn't suddenly started speaking Chinese That would have been something

Steroids are a problem. My legs are very swollen, I think my face is starting to swell too, and I am certainly becoming a nastier person. I'm not as forgiving and as kind as I used to be. I snap.

Luckily, I live alone. I can only snap to myself, no need to punish other innocent souls.

In another bad news, my ovarian cancer (not yet to the brain, but all over the belly), is growing and active as we speak. Not much pain, but I'm swelling up, getting bigger in the belly. They intend to give me some chemo for that after I finish WBR, but I will have to think about it first.

My most annoying problem so far has been the horrendous taste in my mouth. It's terrible. I can't eat a thing. I can't drink a thing, not even water. Heartburn is a real problem too. It burns my throat.

Having said that, these side effects might not neccessarily be just because of the 2 WBR session. It's about a month since my last chemo session ('Myocet) and I was suffering with horrible taste already. Problem is, I was just about to get better. Taste was slowly coming back, (I was so happy for that!), but now,  since I started WBR it's gone again.

Darn! I hate this taste!

Did you have taste problems too? Did they last for long? What did you eat? Any ideas?

Also, ladies, do you know of anybody who went through WBR + Chemo at the same time?

Is it possible? Did they make it?

I'm asking because my ovarian cancer is certainly on the growing, it's becoming painful and I'm not sure I can wait much longer.

Mentally speaking I'm making some progress.

Today, first time since the news of Brain Mets, I haven't cried AT ALL. I guess that's good.

Laurie, thank you for your kind words. You, and all the other ladies here, are my only hope, my inspiration and I desperately cling to you.

 I have somehow accepted the idea that I will die soon. I'm still adjusting to it, but I will probably come to terms with it in the next few days - weeks. The mental torture has been horrendous and I'm just happy to be able to find some peace in my soul and frightened mind.

What I would love, love to have though, would be 3 - 4 months of reasonable quality life. I am single, have no family, but there are a few things that I need to finish first. Nothing major, and not important for anybody else, but important to me. I wish I was able to accomplish that task.

3 - 4 more months of reasonable, functional life would be wonderful.

I am going to go for it, but if things start declining fast I will probably give it up. No point in prolonging pure misery.

I apologise for being such a downer, it's just that I'm lonely and very fragile. Please forgive

Any other news? Anything else to share and chat about?

Ah!

By the way ladies, what do you think happens after death?

I know! I know! It's an impossible question, but just to share some opinions

Thank you for everything, talk to you soon,

(PS typing is becoming difficult, and I can only use very short sentences)

ana

marieibrahim

dear eireanna

i ve lost my mother nearly 8 months away,i wanted to know badly that she is in peace ,you cant know but hey the worse thing would be nothing , nothing happens ,no pain no suffering , the best ,if you can believe, that you would be in the company of your beloved ones, this thought helps me thru the difficult times i m going thru right now.

but you shouldnt let your self carried away with such thoughts ,live every day as good  as you can,

accept the idea but never succumb to it ,

marie

jodimomoffour

If someone pretended to know the day it would be over for me, I would slap them, and then I would fire them.  How would they like it if I did that to them?  No one knows.  I am not living to die.  I have been on the top 3 chemo drugs for 3 weeks.   No side effects.  I threw the list away, because the power of suggestion and the amount were ridiculous.  I have my2nd round on the 4th.  In the meanwhile, I have been super busy.  Going to lunch almost daily with my daughters,sisters and friends.  Fabulous places.  Our garden is abundant, so the dinners my husband has been preparing....awesome.  Yesterday I transferred $310.00 in our 31 year old's account for his B day.  Get it?  I thought I was clever!! All of our kids are busy for the weekend, so I am happy.  Our oldest daughter has to work all weekend, so we're pretending it's sad she can't be boating with the other million kids who give us heart failure.  Tragic huh??????  Tonite I am going to a cute restaurant for Linner and drinks, and we are having a bbq with sisters, the in laws and nieces and nephews.  Oh, this is fun.  I bought 30 hobo peace sign purses for friends and rels.  The web site is called Rising International.  They gave me an excellent deal, once I played me C card. I love the idea of everyone representing peace and love in such a cute way.  I really don't have anything to say,besides hey! Hope you all have a beautiful weekend.  Live Plan Live somemore.  xoxoxo   

K-Lo

Dearest Ana,

I wish so badly I could drive to see you. 

are you asking for the best quality of life possible for whatever time possible?    Have you flat out asked each specialst, "If this was your wife, your mother,,or you, what would you do?"

Do you have good pain control?

Oh my goodness here I am a frustarted retired nurse and there you are way over there.  I would love to give you the TLC and support you need.

Keep talking!

(((((Ana))))))

Tillycat

Dear Ana 

I was feeling all sorry for myself and then I read your posts.............



You are not 'weak'  just as most of us are not 'strong' we just do what we have to do to get through the day.  You are doing the same, and if that involves crying and being emotional, then why not? I think it's allowed when you have so much to deal with.



I was diagnosed with brain mets last May so it's been about 16 months for me. I had targeted radiotherapy but I keep getting new ones popping up. Each time they have found them I have had to go back for more treatment. (apparently recurrence is much less common with WBR).  My most recent treatment was in June of this year.  Having said that the brain mets actually don't cause me too much trouble at the moment.  They are monitored very carefully with an MRI every 2-3 months and so any new ones have been zapped before they were big enough to cause symptoms



I am on chemo as well at the moment.  Chemo was only stopped for 1 week when I had brain radiotherapy, but that might be different with WBR.  The chemo is to control the mets in my liver, like alesta29 my liver seems to be the one that's not playing the game at the moment.  



I think that the other ladies on this thread will be able to tell you more but I believe that WBR can make you feel pretty rough for a few weeks/months even after its finished.  I'm not trying to depress you but I think that you might find that the next 2-3 months are going to be tough even without the chemo.

You need to be kind to yourself and live each day as it comes.  Do you have friends who can help you out?   



The hospital or your GP should be able to put you in touch with the Macmillan nurses (or something  similar ) who will come to your house and help you with pain relief, applying for benefits, organizing extra care or support etc. I don't know why they don't automatically do it -  you do need to ask.   I have one who comes every month,  she is lovely and I feel like she is a good friend.  



I don't know what kind of hospital you are at but lots of specialist cancer hospitals have a centre where you can access support and complementary therapies.  I have been to see a counsellor at my hospital but also had reflexology and aromatherapy treatments.  The counsellor was useful as she helped me to come to terms with my diagnosis.  The complementary treatments were very nice and completely free which is a bonus.



Finally if you look up 'breast cancer care' on the Internet then you will find they are an organization that offer all kinds of support in the uk, it's mainly based in England but they do have a very good help line where you can phone and talk to someone about pretty much anything for as long as you like.  I have always found the people who answered the phone to be really lovely



Sending hugs to you Ana 

Love Tillycatxx

banjobanjo

Ana,

Things are overwhelming for you just now but you are already seeing that WBR treatment is manageable.  I did 21 sessions of WBR at the same time as my first chemo.  I was extremely tired during that month of treatments. However, the WBR shrank my 20 brain mets to nothing and I hope yours are as responsive.  I last had a brain MRI in May and the results were good. I am going for another tomorrow and am obviously nervous that they might have started recurring but hoping for the best.  One day/week at a time - cliche but true.  My best wishes to you for effective treatment.

apple

Dear Ana... Eireanna - what a gorgeous name.. you've really had a tough row to how. (a Kansas saying indicating a rough time).  I thought i was going to die 3 years ago, but am still here and feel pretty good.  Tired, but good.

Your posts are wonderful.. so much information and so many pertinent questions.   You mentioned being fragile and for me that is the most frightening thing.  I have always been so sufficient and able.  Fragile is a good word.

Where are from?  Where did you get that beautiful name?  I'm sorry you don't have family and wish you the best.  WBR is super hard to endure but it took care of the brain mets (most of them) for me.  WBR and chemo together is super hard.  I lost so much weight.  My oncologist put me on a drug - megace, that immediately turned my appetite around.  You want to stay strong.

Best of luck to you.. I'm wishing you 4 years, not 4 months to accomplish the things you want.

I don't know what happens after death.  I would like to imagine I am flying in the air, helping people out of life threatening scrapes.  I was raised Catholic and sometimes my faith is of good help to me.  I am a church organist and go to Mass 4 times a weekend.  I should be holy but I am not really.  I have 3 absolutely wonderful kids, even when they are frustrating and a lovely husband.

I hope you find some real support as you carry on.  Nice to meet you.

Eireanna

Hi ladies,

first, let me tell you that I am so grateful that you exist and agree to spend some time with me.

Thank you! Thank you! Thank you!

Yesterday I was telling you that it was the first day since Brain Mets Diagnosis that I didn't cry at all.

Today, things have changed.

I'm crying rivers now, but it's not because I am sad, it is because of your words and because I am so grateful to you. You gave me tears of kindness and hope.

With you, even if only over the internet, I don't feel that alone anymore, and it makes a difference. It helps ladies, it truly does.

I know that I can come here once a day and write a few words to you and for a few moments I feel better.

I wish I was able to write funny stories and bring a smile to your face, I wish I wasn't such a downer. Right now it's difficult though, and I apologise.

Another problem I'm encountering is difficulty of expressing words. I can only use short sentences and typing is slow and complicated.

For those who have missed my earlier posts, a short update:

- diagnosed in January 2011 with stage IV, metastatic breast cancer (supraclavicular lymph node, chest wall, neck). IDC, Estrogen stongly positive (99%), HER2 - . Cell grade 2

- at the same time, in the same day, I was also diagnosed with ovarian cancer, high grade, stage IIIC

- 2 different tumours, 2 different types of cancer attacking at the same time

- it's genetic, (I am a BRAC 1 carrier) and hormonal

I went through all the treatments (double whammy, for both cancers) and about 4 months ago I was stable and in 'partial' remission. Things were looking good, I was feeling good, but I was always aware of the fact that I am incurable and will die of the cancers. I just ... you know,  hoped for a few more years of good life.

It didn't happen.

About 1 and a half month ago I started having killer headaches and vomiting. At the time I was starting a new chemo regimen ('Myocet') and I was blaming all those side effects on the chemo.

In fact, I had brain mets.

The irony of it all?

I was always told that, word by word, - 'Don't worry about your breast cancer. We can control for a very, very long time'. Translation : don't worry about the breast cancer, worry about the ovarian instead. It will kill you faster.

Somehow, I believed that. I always thought that my ovarian cancer will get me first. An ovarian is much more aggressive and harder to control.

What do you know?!?

The ovarian (although growing right now) reacted easily to chemo and gave me much more time than the breast. It was the breast, the 'easy manageable' one, Estrogen 99%, cell grade 2, clear lungs, liver, bones, that went straight to my brain! (supraclavicular lymph node - gateway to the brain)

To tell you the truth, I didn't expect it to go there so fast, (always expecting it to go first to the bones - liver - lungs first), but it did.

Lesson to be learned : unpredictability of a breast cancer. Never really trust it, it can do things against all ods or statistics.

Family history : I will tell you more, (all!) about me in later posts, but I am 50 years old, (diagnosed at 48), single, (truly single, not even a kiss on my cheek) for the past 11 years. I always kept busy and kind of liked my life and indepenendence although, in reality, I have to admit that I always longed for love. It's in human nature

No children, no family. I was born in Italy, came to Dublin Ireland 17 years ago and never left. I am being treated at 'Beaumont Hospital' - Cancer centre of excellence. They are all aware of my situation and are trying their best, I love them They are my only family

I am a photographer / graphic designer and used to spend most of my time on the computer, working. (not anymore though, I'm incapable of functioning).

I live in one room, in a small attic, on top of a house. Been here for the past 7 years. It's tiny and very expensive, the shower doesn't work, there is no hot water, gas, cooker, just a small room, a single bed and toilet. Not great and I am dirt poor.

I have a few friends, (women), but they are all married, have families and problems of their own. I feel guilty calling them and becoming a burden. I don't want to make them feel sad. I want them to enjoy their lives and forget about me.

I read your wonderful stories about families and children and friends. Lunches! Barbeques! Gardens! Parties! Great food, great fun and lots of love, and I have to admit that I feel envy (hate myself for that). Sitting here, on my one single bed, facing so much cancer, I am breaking apart with every single second.

But don't you worry ladies! Don't you worry!

You go ahead and live your lives, you go ahead and tell me about your lovely days and yummy lunches, the fun and the joy. Such stories bring a smile to my face, a bit of hope and make me feel better!

Go ahead and LIVE and LOVE and ENJOY!

For  1 more year, for 4 more years!

Go for it ladies, fight the cancer with every cell in your body, do it for your wonderful families, for the love they give to you, and let's prove statistics wrong!

It is truly possible, and I know YOU CAN DO IT!

Let's go for it, together, united!

This is becoming very long and I am afraid I will bore you to death (hahaha! If it's not cancer, it's me!)

Side effects update : 2 WBR done, (last on Friday), so far no vomiting, no headaches, no pain. Steroids are terrible and the taste in my mouth is horrendous. Can't eat a thing. Ovarian cancer, on the rise. Growing as we speak, but today not much pain.

I want to come back and talk to you some more about 'what will happen after death', just a bit of a chat, to spend some time together and exchante some of my ideas. I'm lonely and clingy, as you know

I wish we were closer and some of you would agree to come and visit me from time to time, a cup of tea (green tea, healthy! ), a bit of a chat, one hold of the hand.

Nobody in this world feels closer to me than you. But it's not possible to have you closer, so I have to rely on the internet only.

Thank you for all your kind words, thank you for the hope of 4 more months (and even more!), thank you for being you and allowing me to be part of your group.

Thank you Tilly, Apple, Banjo, K-Lo, Jodi, and all! I am devouring every word you say and please remember that it truly, genuinely helps

I'll take a break now, (eat something? Should I try?), but I will be back later in the day, with some more chat and a few more ideas about the eternal life awaiting for me.

I need to find a mental way to deal with it, it's torturing me right now and it's becoming obsessive.

Love you all,

ana

PS : ovarian is growing. They agreed to treat with chemo, but right now I'm not sure I would be able to take the 8 more WBR session + Chemo at the same time. Let's see how things evolve and how bad the pain becomes. I'll talk to them and let you know. 

PS: I'm thinking of going at the shop, around corner, and getting some milk. Perhaps trying some corn flakes? I'm dizzy on my feet, hopefully I'll get there.

Hopbird

Eireanna-

I have a brain met but because it was just the one I had SRS and no WBR.  However, I did have steroids which affected my eating...I ate more, but couldn't taste a lot.  Also, my oncologist told me steroids affect your quads (or thigh) muscles most.  Just thought I'd share that again.    I'm off the steroids now, my tasting is fine again, and I'm working on the thighs... 

Eireanna

Hi ladies

I'm still around, still alive

Came back from the hospital, (3-rd WBR done!), a few hours ago. I crashed and slept for a few hours. A bit of a headache, but better now.

I would say, without taking into account the growing ovarian that is 'flaring up' and attacks me right now, so far, WBR itself was not as bad as I was expecting it. Easier than chemo. However, I only had 3 sessions, things can and probably will change for the worse soon.

After finishing the WBR, (shorter this time, max 2-3 min), I was seen by a young radio doctor. Just a routine check. He asked a few questions : - any seizures? headaches? vomiting? nausea? loss of balance? hearing or vision problems?

My answer was no, to all of those. At least for the time being.

I asked him : - realisitically speaking, do I have a chance for six more months?

He was hesitant, no guarantees, but rather hopeful.

-'Yes, realistically speaking ... realistically speaking, yes, there is a chance for 6 more months. One thing to keep in mind,' - he said, 'is that we would not have offered WBR to you unless we thought it would work and extend your life for 6 months.'

There is, of course, the problem of the growing ovarian at the same time.

I asked him: - 'have you ever had people going through WBR and Chemo at the same time?'

His answer was clear: - 'yes, we do that all the time. People go through this kind of treatments all the time and survive it. It's possible, and you can have chemo at the same time, if you want. You need to talk to your oncologist and discuss the options.'

I am going to try to get to the half-way point through WBR, at least 5 sessions completed, and then ask to talk to my oncologist and discuss about things to do against the ovarian cancer. Something that I can take to try to slow it down for a few more months, if possible.

I also asked about SRT. 'Will it ever be an option? Later on, in time?'

-'Yes, SRT is an option, but it's highly dependent on circumstances at the time. We won't know for a few months. Radiotherapy takes time to work, and we do not normall scan the brain for a few months after finishing treatment. We need to let it work first.'

He also said the the primary goal, right now, is not to completely eradicate my brain mets, but to stop them from growing first, and try to shrink them. Keep them under control, for a longer time.

It is also possible that the mets will disappear completely, but in my case at least, this is not their primary goal.

There you go ladies, that was my daily update.

The reality is that I'm clinging to it, to life, and I would do the best I possibly can to get to 4 more months of life. There are a few things I really, really want to finish first, and I need these few more months of extra time.

I also found something that I can barely eat. The taste in my mouth is as horrible as ever, but I can somehow manage a bowl of plain cereals and a slice or two of toast. At least is something, better than nothing.

Well, that was my update. What about you? Any new stories? Anything else you would like to share?

I hope you're all doing great and enjoying your lives, now and for a very long time to come!

You're my hope and my only place in the world I can feel at ease.

Talk to you tomorrow, thank you for your kindness and for listening,

Hugs to all,

ana

Tillycat

Hi Ana

The doctor you saw today sounded nice.  He seemed to be giving you honest answers,  and it wasn't all bad news :-}

Have you tried eating yoghurt or icecream?  I have lost my sense of taste with the chemo I'm currently on, I also get a very dry mouth from the steroids- not the same as you I know but yogurt and/or ice cream are good at the moment. 

The other thing I like is sweet and sour sauce (weird I know) I think it's the salty,vinegary taste that works.  I guess the yogurt and icecream are soothing and help my mouth not to feel so dry and the sweet and sour is strong enough to give me a sense of actually tasting something.  

I'm not suggesting that you rush out and buy Chinese food just saying that sometimes really odd things work,  if you fancy it then give it a try! I am sure you will get other (probably more sensible ) suggestions soon

I am off to see my onc tomorrow.  I had some blood tests last week so I shall find out how my liver function is doing as well as hopefully getting some tumour markers (not good indicators for everyone I know, but so far they have been pretty accurate for me)

He will be deciding if I should carry on with this chemo or not.  I hope that I will be carrying as that will be because he feels it is working.  My big fear is that it is damaging my liver so I'm hoping that liver function results are ok and TM are going down.  Fingers crossed.

I wont know anything about the brain mets for at least a couple of weeks as I don't have an MRI until later this month - still waiting for the date at the moment.

Anyone else waiting for appointments for scans? I have to make a big effort not to allow myself to spend my whole life waiting for the next scan.

I found out today that a friends husband died from his very widespread stomach cancer a couple of weeks ago.  We all knew it was on the cards, he was terribly unwell. No one wanted to tell me about it incase I got upset- I can't imagine what they thought I was going to do, and of course I was upset, he was a lovely man with a great wife and kids.  The only thing is that I'm afraid his wife is almost angry with me because she has known me for a long time and has said to me things like 

'if you can do it then so can T' 

(I was originally diagnosed 8 years ago, T was diagnosed 2 years ago)

More recently as T has become more unwell she has said things like 

'oh look at you, you look far to well' , 

'you're as strong as an ox, cancers never going to get you' & most recently

 'I think you're going to outlive us all'

She doesn't have a mean bone in her body but I think that subconsciously she is angry that I am ok (in her eyes) when her husband became very unwell and has now died really horribly quickly

I dont even know if i should go to the funeral which is this friday, especially as i know i look pretty well at the moment (steroids have made me look plump and pink!)

Oh, how I hate cancer :-((

How is everyone else doing?

Tillyx

K-Lo

ANa, ty for writing out those questions and answers.  Perhaps we would alll learn  more from the real conversations like that.

Anyway, you did a really good job of asking what you want to know!

Tilly, I bet you're correct about the friend resenting your relative "easier time" than spouse.   My DF had a hubby die of pancreatic cancer and I guess that was a horror show from  dx to death.  Something like 14 months of pain, starvation, and inability to do anything to help w their two small children.. 

Once again, we have to wonder if some tpes of BC is the kinder cancer.   Sorry if you are suffering as you read this. 

Love,

Kathy

formygirls

Hi Ana,

Icecream and sorbets also helped me. Maybe it is because of the dry mouth or because steriods made me want sweet things. Your doctor gave you honest answers. I hope things get better.

Tilly,

Hope you great liver function numbers and low tumor markers tomorrow and can continue on Taxol. Mine are also very accurate and I get nervous every time.



I see three oncs tomorrow for my brain mets. Radiation onc, neuro onc and neuro surgeon. I have some new tumors and they will decide whether to treat me and if yes whether I should have WBR or radio surgery. I had radio surgery in April for my 10 tumors and I found that doable. I hope they can do that again.

banjobanjo

I had a brain scan yesterday and I had approached it with all the usual hopes and fears.  My last one had been clear after WBR had done its work.  My lovely radiologist was off sick but his number two told me there were two microscopic white dots and they were too small to identify or investigate further at the moment.  He said they could be new mets or they could be scar tissue from the WBR.  I, without being unduly negative, am thinking they are probably mets because if it was scar tissue wouldn't there be more of them?  He wants to scan again in eight weeks when they will be better able to judge what they are and treat if necessary.  On the scale of wonderful to terrible, I'm taking this as good news - isn't it funny how our judgement changes because of this disease?

banjobanjo

Hi Ana,

It's a good thing that you have found this website and are feeling supported and helped by the women here - we all recognise the warm feeling that comes from responses that show they share and understand us.  However, much as we would like to, we cannot join you for a cup of tea.  I would suggest that you speak to a medical social worker at your hospital, who can put you in touch with a cancer support group where you can find more people who understand and who you can have tea with.  I know that I need both my internet friends here and my 'cup of tea' friends. There must be many women cancer patients in Dublin who need you as much as you need them.  The social worker might also be able to help with either rehousing or improving your living arrangements in a practical way.  You need to ask and you will find there is a lot of help available.  I wish you well and hope that your admirably honest doctor takes good care of you.

Barbara 

apple

that would be cool if you could just dispense tea from the video screen.    so easy.