If you are not Stage IV but have questions, you may post here

dutchiris

Thank you, Chrissy.  I met my oncologist in the hallway as I was leaving after the biopsy.  She said she would set up an appointment for me for to see her at the end of next week or the beginning of the following week.  Am I ok to continue posting in this thread or should I post in a different one?

chrissyb

Iris you are welcome to keep posting here but you would get much more support from the board in general if you started a new topic.......you can choose what make you more comfortable.

It sure sounds like your onc is a good one and is going to keep a close eye on whats happening and that can only be a good thing.

Love n hugs. Chrissy

ps Should you start a new topic, I will find it and continue to support you.

Papillon1

hi,

This isn't really a stage 4 question but it does concern my stage 4 mum. And I know how knowledgable you ladies are so..

Mum (mets to brain, lung, bones, liver) is having a CT scan on Thursday after 5 months of no chemo. Is this just for the body mets? The doc hadn't mentioned her brain tumour in a long time. Even in his letters he only mentioned the reduction in size or no growth of the body mets. I don't live nearby so don't go to the appointments and mum and dad don't seem to ask questions.

He did once state in a letter to her GP that all body mets hadn't grown but he stated that her lack of appetite could be due to the worsening of the disease or chemo. She was on one that crossed the brain blood barrier some. But since in the letterthe body mets hadn't increased in size can I assume the brain met had?

I had hoped that the scans this month may give answers but no MRI...

Is it because the body mets would be the ones to worry abot? I kind of assumed it wild be the brain met that was going to lead to the end.

I know its all a bit of guess work, but it is normal to offer CT and not MRi for patients like mum? Could it be because they think no further treatment is likely so its not worth the expense or stss of MRI!? Or can MRI see the brain too?

Thanks for your thoughts.

Love and happiness to all xx x

chrissyb

Hi Papillon, CT is also used for the brain as well as MRI. Do you know if your mom's doc has ordered head CT as well as chest and abdomen? I would find it very unusual if he didn't, knowing that your mom has brain mets.

Hope the scans show some good news for her and you.

Love n hugs. Chrissy

Papillon1

I don't know. Even if he hadn't I don't think she would say anything before her consultation with him in the first week of November. She doesn't like to get too involved I think..kind of just let's him do his job. He is very highly regarded so I am sure he is doing what he should..but maybe I will ask dad to definately ask about the brain if nothing comes up. It's all been so odd for the last few months with no mention of it. Scarey now the chemo has stopped too, she is HER2+ so I am scared how fast things can change, she seems good right now, few side effects other than pretty much anorexia..

Thanks Chrissy xxx

chrissyb

Papillon, I'm sure that he is taking good care of your mom and doing all the right things. I know it's hard for you being so far away but sometimes older people don't want to know, they trust their doc to do the right thing.

I'm glad she is seems to be doing okay aside from the anorexia.

Love n hugs. Chrissy

Papillon1

I know. She isn't that old, 66, but yes, trusts the doc. Which is good for her.

Thanks.

Papillon1

so mum, (1met in brain, 2cm, mets in lung, liver and bone) her2+ ER+ stopped chemo 5 months ago, still having hormone therapy and herceptin, had her CT today. But they didn't scan her head. Why would this be the case?!?......

Am annoyed....no closer to knowing really and truely how long we have. Mum hadn't wanted to know, but I think my brother and I really hoped to find out...

Is it because there is so little that can be done for the brain? I am pretty sure chemo is finished for good. But its not be made clear and surely they need the full pic? Or maybe they are only taking scans to see if the herceptin works and if they need to continue that? Woild this be likely? I guess once herceptin doesn't work there are no more scans ever?

Perhaps a prognosis was made right after the radiotherapy, We just don't know? I know raiotherapy slowed the growth but didnt shrink the tumour.

She did then have chemo to cross the blood brain barrier, Xeloda. Would this even affect the prognosis? I don't believe she has had a brain scan since chemo, though I may be wrong.

Can't help but feel her head hasn't been scanned as it is the beginning of the end and any new developments are already irrelevant?! Seems such a blow.... But obviously its all just speculation.Anyone have experience with brain mets and any idea what it all means? If I lived closer I would go to appointments...hoping my parents will ask more t the next appointment next week, I can't stand all this guess work, its making a horrendously awful situation so confusing...swinging between hope (mum says she will discuss end of life choices one day, but not yet...she would know her own body right?) and doom and gloom fear (all this scan business). .... X

And while I have a zillion questions, why would a patient with brain mets be given herceptin and not lapatinib?...

ziggypop

Hi all, I have spent several hours reading all the posts here, and just wanted to say thank you. The calm, thoughtful, and encouraging responses that have been given to so many people amaze me. Thank you.

There was a topic that came up that I have a little bit of knowledge about. One woman was talking about an aunt who had chemo prior to surgery & wasn't 'staged'. I had chemo prior to surgery as well & it makes staging really difficult & not very reliable. I had a very large tumor - about 9cm across and clear lymph node involvement. So they gave me surgery first to shrink the tumor prior to surgery (which it did down to about half the size), and they removed all the lymph nodes from my armpit (three of them still showed some cancer). The reason the staging doesn't work so well is because they don't know how many lymph nodes were actually involved - it's possible that the chemo killed off the cells in some.

RangerMom

Papillon1 - would it be possible to have a phone consultation with him with your mother's approval to get your answers? I hear your frustration and concern, just thinking if the dr would do that for the family members?

Linda

Papillon1

thanks RangerMom. If my parents don't ask the questions during their consultation next week maybe I will think about that. But I fear mum would think I am snooping. She has never wanted a prognosis so it was silently agreed we must do things mums way. But it is so hard.

...not sure I am comfortable with asking for her approval. We have always been able to talk about anything, but things change when cancer comes along I don't want to upset her. I don't want to create any awkward feeling. I want to just make her happy.

mum's sister asked aout prognosis. she told her sister that when or if she finds out something she thinks she should know then she will tell her. i dont want to upset mum by going on about prognosis etc. I don't know....gosh this is awful. There is a lot to be said for living in the present, to loving your loved one right now. But it is hard sometimes. I am grateful I have her right now, so grateful. But I am scared and lost.

Sorry for moaning on. Maybe this isn't the right thread. It's hard to find a place I can ask though, since I am not the person with cancer myself.

Thanks. X

chrissyb

Papillon, you are welcome to ask here anytime and anything and if we can help, we will. Sorry I didn't get back to you sooner but I have been away for the last twenty four hours.

I was also going to suggest a phone call to your mom's onc to get the facts directly from him. Perhaps if you ask your mom's permission in such a way that would not upset her such as......' mom can I have your permission to speak with your onc as I have a couple of things I don't understand and he/she can explain them to me'.

I know it's very difficult when you want and need to know a lot more detail but your mom doesn't want to know........it sort of leaves you hanging. Hoping things pan out for you.

Love n hugs. Chrissy

chrissyb

Hi ziggypop and thank you from all of us. Thank you for your input.

Love n hugs. Chrissy

Papillon1

I truely don't feel I can ask her. Without it being obvious I am wanting prognosis. And I can't stand to upset her.

I will see what happens at the appointment next week.

She sounds so well on the phone lately. It's hard to believe this is all happening sometimes, when I live away.

ziggypop

Hi,

Papllion 1 - Hi & so sorry about your mom. I'm not stage 1V, but I dealt with a similar situation to yours with my father. He was diagnosed with cancer in his stomach, liver, lungs, pancreas, chest etc. They didn't even know where exactly it started. The whole thing is a long story - but to make that story short, eventually my dad asked for a 'prognosis' - and what the oncologist (who also became my oncologist said) was ' " Cancer is funny - it's unpredictable - sometimes it responds to treatment, sometimes it doesn't." I guess my point is this.. what does 'prognosis' give you? Ultimately the doc told me - "You'll know when there is very little time left." He told me, you will see your dad begin to nod off and not be able to answer questions. He won't like the taste of food, and he will experience dramatic weight loss. And I did. At the end, it went very fast & the time to 'prepare' made not much difference. What did make a difference was having some time of knowing - some time of knowing .. knowing that whatever time was left, it wasn't that long & I had some choices to make. Don't wait - go home and be with your mom now. Don't fudge things - you don't have time for that. Tell your mom and your dad that you love them. If you can't go, send them letters and cards and little presents, call & listen carefully. Make sure that they have somebody there to cook and clean. A 'prognosis' is at best a guess - until the very last minute. Don't wait for that. Live today, love today. Please know that I don't mean to sound like I have the 'answers' - I don't. I'm just going from my own experience.

bevin

Ziggypop - I love your message.

Linda-n3

Ziggypop, you are so right! Some of us who know we will eventually die of this disease have actually been given a sort of gift: we KNOW that we are on short-term. Yes, we can hope there is a new drug and a cure around the corner, but the truth right now is that the probability of dying sooner is greater for those of us with stage IV than those with stage I. I say it is a gift because we can plan. Yes, anyone can plan, but it is less "real" when you theoretically have your whole life ahead of you. But ALL of us should spend time with loved ones as much as we can, whether we have a month left or 50 years left. And if your loved one is on shorter term, take advantage of the time NOW.

[Deleted User]

Hi,

I hada cold last month and now seem to have throat irritation and phlegm that doesn't go away. Since I am 3c with supra-clavicualr nodes which often light up just before lung mets ... I've scared myself silly that this is a symptom of lung mets. HElp. what are the symptoms of lung mets? What else might it be? V

chrissyb

Hi HVV, please don't scare your self silly as I have had the same thing and I know I don't have lung mets. There seems to be a virus that is world wide that after a chest infection/cold it leaves you with the phlegm and tickley throat. Those that I have spoken to who have had this say it gradually gets better but does take ages. I've had mine for a month but it is getting less all the time.

With lung mets, it's more just that persistent cough with no phlegm.

Love n hugs. Chrissy

Kandy

Haven't posted in a while so I thought it was time to catch you up on my story. So like I stated my biopsy was negative and my medical oncologist was thrilled. I did not believe the results by the time I heard them. So I went to my radiation oncologist and he agreed that there was reason to believe that the biopsy may have not gotten the lesion. He ordered for another biopsy to be done. I had it on Tues, they confirmed today that I do have mets to my left pelvis. One lesion. So I am officially stage 4, I have an appointment on Mon to find out the treatment plan. Thanks for all of your advice along the way.

chrissyb

Oh Kandy, I'm so sorry to hear that you have joined our club. Once you have your treatment plan and your pain under control I know you will feel a whole lot better about it all. Are you going to have rads to that one spot? It is a very good way to eradicate the cancer in that area and alleviate the pain then with an AI you can remain stable for a very long time. Usually with stage IV the doc starts off with the most gentle of the meds as they realise that we will always be having treatment and that can mean for years. The idea is control and quality of life.

Hope you do well and I would love to hear from you when you have an update.

Love n hugs. Chrissy

Kandy

thanks Chrissy, I go on Mon to find out what the treatment will be. He has already mentioned rads to that one spot. It was such bittersweet news yesterday. Something that I knew in my heart was there but to hear it confirmed was still very sad to me. I will keep you informed as to what the treatment is. Thanks again.

Papillon1

thanks for your message ziggypop. However, as always situations in reality and ideals aren't always the same.

do visit as often as I can. I am not waiting. I go monthly, but live abroad and have three children (eldest only 5, youngest months). Four days each month are all i can afford financially and emotionally for my babies. i know how prognosis is just a guess or estimate. Bt I truly have little idea how short a time or long a time we may be facing. I need some guidance on what is going on. I read some ideas that brain mets have prognosis of months. Then I read of ladies living years so maybe the first reports were out of date. I really can't get my head around it. I could fly home every two weeks but can't sustain that financially for long and i worry of the impact of doing that long term on my immediate family, my husband and three children. If I lived around the corner I would be there every day. I guess I feel guilty for not being there more often and for financial issues to come into it at all. My father has paid for some of my flights which has been a help. Bt it all feels so awful to talk money..But life is like that.. I can't get us in debt and not have enough for my kiddies. And they need mummy here too. Which ofcourse my mother understands I have no doubt.

We talk daily, always have.

I have no idea of end stages for brain met sufferers. I don't even know if it is the brain met that will be our biggest issue, or the mets throughout her body. Forums always seem to give the answer to just think positive, to enjoy today, the here and now. No one seems to discuss the awful reality of what will happen. And I really do try and enjoy every day, i love her deeply. Every time we speak it is so much more precious.

My mum has had dramatic weight loss for the last 8 months so sudden weight loss isn't a clear sign of anything for us. I thought it was a sign when it started some months ago, but she is still here thank god. She has no enjoyment from food, she is repulsed by most of it. she eats less than my 3 year old. It's been this way for 8 months. She has lost 30% of her body. Luckily she wasnt skinny to start with. Though she is certainly getting there now.

There are some memory issues but we sill have perfectly clear conversations, she certainly isn't dozing off mid conversation, though she will go quiet all of a sudden. I do wonder where she goes in those moments.

I broke down and cried with her last weekend, she told me she had no plans on going anywhere any time soon. I am sorry to speak to you ladies about this, you are all fighting this awful disease yourself. But brain met sisters is obviously a private forum / thread for sufferers and the caregivers thread is quiet.

I am so confused.

She will see her onc next week, but if she doesn't want to talk time then I won't ask either.

Wishing you all well in your battles and wishing you heaps of love and laughter xxx

barsco1963

Kandy - so sorry that you have been dx with mets. Hopefully rads will take care of the mets on the pelvis and tx will keep you stable for a very long time to come. Keep us posted on how you are feeling and how tx progresses.

Papillon - Please don't feel guilty for anything. It sounds like you are doing as much as you possibly can to be with your parents during such a tough time. You are sensible in your thinking that you cannot use all of your finances to be with your mom when you, as a mom yourself, need to be there for your children. I am sure your parents understand that you cannot be there 24/7 and I am sure that they do not expect you to be. You say you are in touch on a daily basis, and that is more than some can hope for. Cancer is never predictive and takes it's own course. We just have to take it a day at a time, live for the present and be thankful for each tomorrow that comes our way. Sending you ((hugs)) and smiles and best wishes for comfort and well being for your mom.

[Deleted User]

Thank you Chrissy. Grateful, V

Papillon1

mums liver met has increased in size. Despite herceptin. Found out today. I know nothing about liver mets. She will be back on chemo, just what she didnt want. But a different chemo.

Maybe this explains her virtual anorexia

moonflwr912

Hello. My SIL is Stage 4. She doesnt want to know amything about her tx. Until it happens. My tx caused a lot of problems for me so I wanted to know everything! We are definetly different in thst respect. (During chemo she had the big C. I of course had the big D. ) So my question is: Is there a list of tx in the order they are usually tried? I know she is ER + PR+ her2-. (She only asked what she was cause i asked her. ) her first tx (what it was she never asked) led to some progression. She is now on Faslodex. Its not that I need to know what she's on, even though it's the opposite of me, who reads and wants to know every side effect because I have had so many "scenic detours" on my "journey". Its so I can give her the support she may need with side effects she might have so if she does have some I can at least reassure her its common or push her to call her onc its its not. She lives in a different state from all her family. We talk on the phone quite often. She is a very physical person and loves walks. If she thinks she is slacking off, id like to let her know its not her fault that she shouldnt push heself past exhaustion, it just is. On the other hand maybe shes losing red cells and its making her weak. So is there a normal (I hate to use the word progression) list of tx to try or is it just whatever onc chooses? Thank you.

barsco1963

papillon - sorry to hear that the lesion on your mum's liver has increased in size. I hope that this new chemo will knock it back for her.

Moonflwr - I can't help you out with your question on tx. I only know that tx for stage iv is more about QOL rather than obliterating the beast. Not everyone wants to know the "what ifs" or all of the possible SEs of their tx. I encourage you to make sure that your SIL would not be put out if you were to research her tx. However, you can still be a great support for your SIL without knowing all about the tx that she is on. Encourage her to rest if you see that she is pushing too hard, if you think a SE warrants a call to the onc then help her to make the call. As you know, what may be common SEs for one, may be totally different for another.

moonflwr912

LOL. She knows I look up all things, not just BC. My DH and i have been married over 40 years and she was 11 when i met her. She just doesnt bother! LoL. I also dont just tell her things I find unless its pertinent to something she told me and will be of help. Ive been on the boards long enough to know QOL is the thing with Mets. I did have to let my DH know the difference with my tx and hers. He was worried they werent doing enough..this past year they lost both their parents(90 yrs old- both) and had her dx and mine to worry about. Oh well ill just stumble through as usual. Thanks for the help.

Much love..

barsco1963

moonflwr - I can tell that you definitely have your SILs health and well being at the top of your list. There has been a lot to deal with in your family as of late. Best wishes to you all.