Stage IV - Emotional Toll, Anxiety, Struggles,Sadness, Coping

dorimak

There's a similar board to this for those at all stages in their disease, but I feel like it would be good have a place to share our struggles and fears since this is a long term game for us. There's great support on the individual boards such as by med like IBRANCE but then people move on as their treatment changes. I think it would be good for us to have a place where we can vent or express our fears or concerns and encourage each other no matter where we are in the journey I am just not in a good place right now.

I was diagnosed Stage IV in Jan 2016. At the time it was limited to a couple of nodes under my sternum and suspicious metabolic activity on nodes in my right lung too small to biopsy. I am 95% ER+, 5% PR+, HER2-.

Hopes were high for me. I started on Femara for three months and the next scan showed progression. IBRANCE was added and I was stable for two years. After initial DX I learned to co-exist with the disease and led a fairly normal life other than significant fatigue from the meds. However it appears that my estrogen receptors seem oblivious to the AIs so it's the targeted therapies that have kept me somewhat stable but not enough. Since then I have done Faslodex, Afinnitor/Aromosin and have now started Xeloda.

In November I met with radiation oncologist to look at possibly radiating the two areas "to kill them off". He did a PET scan and mets were found on my brain. I have been reeling ever since. He treated them with targeted radiation. The Afinnitor/Aromosin didn't seem to do much so last month I started Xeloda but had to take a break with side effects.

I've kept a positive attitude all along and felt reasonably optimistic but am really struggling at the moment. It feels like since Nov that it's been one thing after another. Fasodex not working, mets on the brain, A/A not working. Now Xeloda. I felt really ill last month on it. Scared of the side effects.

Only thing that keeps me going is seeing all these wonderful woman and their encouraging stories. but I'm finding it really really hard now because I'm afraid to make plans in case I am not doing well on the meds like what happened a couple of weeks ago. I live alone and my family live across the other side of the world. I realize my challenges aren't near what some ladies on here are dealing with but I'm just feeling major anxiety and fear for what's next. Coping is just getting harder

Maybe this can be a board that we can share our fears. .

DivineMrsM

dorimak, I’m sorry that you are going through these difficulties. Please don’t minimize your struggles by comparing them to others who you think are “worse off”. An excerpt I read from an article on a new book coming out by a therapist addresses the emotional issue by saying “Pain is pain.” She says there’s no hierarchy of pain. You don’t need to apologize for how you feel. And you’ve been dealing with bc for a long time. That takes a toll.

I had recent progression for the first time and it’s hard to explain how that’s changed my perspective on life. I don’t want to say I’m melancholy, but there’s an even more real sense of the brevity of the rest of my life, more so than when I was first diagnosed with mbc.

pinestate51

Dorimak, This is a good idea, to have a place for coping issues in stage 4. I can very much feel for the situation you are in. Sometimes its like a steamship we are traveling in hits very rough seas, and things feel so different. Every time a shift happens in the disease itself, or in the tx plan, I go through some rough riding. Keep us posted.

Elderberry

Dorimak - excellent idea for a new board. Most of the other boards all mention "anxiety", "scanxiety" etc. This board could cover that and the toll it takes on everyone affected by this, including family members and dealing with them while caring for yourself.

candy-678

Dorimak-     Thank you for starting this Thread. I have posted about my fears on other Threads, especially the Ibrance Thread since I am still on that med for my first-line therapy.  But I wonder if I upset some by posting my truthful, honest feelings.  And I think we should be able to voice our true fears here.  To be able to be brutally honest about our situation, our fears, our anxiety, our anger, and our hate of this disease and what it has taken from us.  

Dorimak I am sorry you are feeling overwhelmed and fearful.  Please post your feelings here and I will try and help you and others.  And you can help me.  We can help eachother.

Elderberry

Dorimak, candy-168,DivineMrsM, pinestate51 -- I thought my chenmo was going to start this week but now I am told it will NEXT week when I actually find out when chemo starts. My anxiety about delays is making me crazy. I know a week or three makes no major difference - but still....... At least it is not waiting to hear if I have coverage. I'm Canadian. But how to cope with the waiting, waiting?

dorimak

Hi everyone, I posted this a week ago but somehow didn't get it added to favorite topics. Didn't know that anyone had responded. Thank you all for your kind words.

DivineMrsM - I'm really sorry to hear of your recent progression. I found I had really come to terms with my DX and was coexisting with it, but have to say when we get unpleasant news from our scans, it shows us how precarious our situations are. Looks like you are starting IBRANCE. I found it quite tolerable with fatigue being my main issue. I did have low white blood cells but they lowered the dose. Hopefully get a good run at it and can feel back on track. I figure every year we get means a shot at something new so may you get several years.

candy_678 - I agree that we should be able to express our fears and feelings Really only those with MBC have a true understanding what we are going through. If someone seemed upset, at what you posted perhaps they're just in a bad place themselves and it's not personal. Sometimes I get upset when I see the toll it's taking on others and wonder will that be my path. I think overall everyone seems understanding and try to respect each other.

Elderberry, yes I'm sure it's really a challenge trying to keep life normal for family members while taking care of yourself. I read somewhere that breast cancer patients tend to be natural givers at their own expense. Hopefully you can take time out to fill yourself up so you have energy for them too. I can see how the wait to start chemo can make you crazy. I feel the anticipation can sometimes by worse than the actual experience. Take it one day at a time. I've had to stop treatment over the years for one reason or another and they say a few weeks dosn't make a big difference. I understand though that you want to get going.

Thank you all for sharing. it's nice toh ave a community who understands what we're dealing with.

candy-678

I also posted on the Ibrance thread/my go to thread since I am on Ibrance as my first line therapy.  But I wanted to post here since it was appropriate for this thread.  

Hi all.  Just thought I would check in this afternoon.  I just got home from my 3 month CT scan.  I had a little more anxiety with this one.  Usually no big deal having the actual test, but today I just didn't want to do it. You know the feeling, just didn't want to face it today.   I am nervous for the results.  Last CT in Jan showed somethin somethin on the liver and we will relook at that area this time.  I have my appt with the MO next Tuesday, but she said she will call if any issues and will see me before Tues.  Just feeling anxious. 

50sgirl

Candy, Of course you feel anxious. That is perfectly normal. I know everyone says this, but I know exactly how you felt today. I can think of a few times that I would have driven right by the hospital without ever having scans if my dh hadn't’ been driving. I suspect that I will have scans in a couple of weeks. To be honest, I just don’t want them this time. I know it is crazy, but I would like to go on thinking that my current treatment is working it’s magic and killing cancer cells all over the place. I do hope that your fears are unfounded and that you do not have progression. Our minds can sometimes play cruel jokes on us and imagine horrible things. Your mind is focused on that Your identified “thing” that was noted on the January scan report that might or might not be of significance. Luckily, the fears in our minds often do not come true. Many times those “things” on scans disappear from the next scan - no explanation, just gone. Even if you do have progression, it will be caught early, and there are many more proven treatments available to you. MBC is a nasty disease. It seems like every time we get in a good place and start to feel comfortable, mbc steps in with a nasty surprise to disrupt our peace and joy. I know you will have trouble thinking of anything else, but do something good for yourself. Take a nice bubble bath, watch a good movie, go for a long walk, listen to your favorite songs, call a good friend and just talk and laugh and cry and then laugh some more, have your favorite snack - maybe something full of empty calories, just because, yell and scream if it makes you feel you feel better. There are no scripts or rules for those of us with mbc, so just do whatever you have to do to get through this. We are all here for you. Just tell us what you need. I am sending you a great big (((HUG))) because that is one thing that i would want!

Hugs and prayers from, Lynne

candy-678

Thanks Lynn for the good vibes and (((HUG))). Yes I think the mental aspect of MBC is just as bad as the physical.  Our minds can be our worst enemy.    I just wonder how much more time I have with Ibrance.  I am ending my 16th cycle.  And it is my first line treatment.  I have not faced progression yet.  What will be the next treatment.  And will it be worse.   People tell me I "look good".  In fact I heard that today from the x-ray receptionist.  But when I had the cancer growing in me and I didn't know it I "looked good".   And boy I don't feel good.  But I think that is from the meds---hot flashes, aches and pains, fatigue.  I am going to bed tonight early.  I just feel so tired all the time.  No stamina on the days I have errands to do--I fizzle out easily when I used to go go go. 

Prayers for your scan coming in a couple of weeks. 

This site is a blessing.  I can vent my true feeling and I know we truly get it.

Hugs   

candy-678

Elderberry---Prayers for you that the week waiting will go quickly for you and you will get answers soon.

dorimak

Gosh candy and 50sgirl, I thought it was just me that wanted to keep on driving and avoid the scans or just not show up for t he appointment and run off to a beach somewhere.. It's a cruel and constant reminder 0 this disease that we have to be monitored for something lurking in our own bodies. And candy hearing about somethin somethin when you're a MBC patient can be torture. 50sgirl gave some sound advice. Sending positive vibes and prayers (for whatever worrks for you) that we hear from you that it's nothin nothin. I got two years out of IBRANCE. My main issue was fatigue and low white counts so was on the lowest dose and at times had to be taken off it. There are lots who seem to get quite a run with it.

exbrnxgrl

I think the emotional toll that living with stage IV takes on so many of us is not widely acknowledged. I have been spared much of the physical complications of bc and live a mostly normal life, yet find myself emotionally and physically exhausted. It’s really hit me recently and I'm feeling unsettled.

dorimak

Yes, sometimes we may even underestimate the emotional toll it takes. I know there are some who have kids at home, jobs etc. and it's a tough balance to try and live as normal a life as possible but the flip side is we carry that cloud. I chose to keep my DX fairly private only sharing with family and a few friends because I don't want to be talking about cancer all the time.