how do you manage fear?

[Yikes123]

I’m stage 4 with inoperable brain tumor. Xeloda is holding things back. I meditate occasionally,, exercise when I have the energy. I’m afraid of thee next stage and whether to try enhertu and endure side effects or try a graceful end with palliative care. I had a lot of nausea when I was first diagnosed Stage 2 20 years ago.

[jersey-jazz]

It is written somewhere that all of us get completely panic ridden when we are first told that we have stage four and that we will never recover from the affliction. It seems that it is your turn and will be until you realize that it is like any other illness that requires fixing every day like diabetes or like some other disease that requires constant attention. It is no fun and I am sorry that we on this forum have to welcome you to our very special group that no one of us wants to belong to. Welcome! I hope and pray that you do not suffer too much.

Incidentally, palliative care is very helpful. XXX OOO

[FiJaLo]

I’m sorry you are having to go through this. Wishing you positive and peaceful energy to help you keep on one step at a time.

[Discocat]

Hello Yikes

Sorry that you're going through some fear and anxiety. I don't know anything about having Enhertu treatments....may be others with insight can tell you of their experience here and that might help you decide...or if you do a search online you will no doubt find a specific group on the treatment that you could join.

As far as trying to manage fear, I've recently posted in response to another thread about how my tactic is to try and maintain normality. Keep doing the things that make you feel like you....I'm an interior designer but I now don't do external projects anymore and instead focus on my own place and do various small scale creative projects of my own....it's a case of going to your happy place. I find doing something creative takes me out of time as all my focus is on the actual activity and not on any worries....gardening also does that for me and the physical side is also good for exercise and getting some fresh air outside.

I have heard of others here on this site who have had treatments for brain tumors....there are targeted radiation sessions that are called cyber knife ....but of course every situation is different and this might not be an option for you....although possibly getting a 2nd opinion might be something to think about?

I hope you find some comfort.

Thinking of you and sending positive energy your way.

Zoe

xxx

[Yikes123 in reply to Discocat]

Because my brain Mets is diffuse, I’m told gamma knife is not effective

[bikebabe]

Sorry that you’re having to deal with these horrible choices and hope you have loving people round you to give you support. Is the brain tumour inoperable because it’s diffuse like lobular or because of where it’s situated . Is it hormone driven? Can they biopsy it even if can’t remove it. Maybe worth getting a second opinion on merits of whole brain radiation for former and cyber knife for latter. Then looking at enhertu. Only you know what you can tolerate and when it’s right just to accept and live out your best life with what you have but you won’t know unless you try it. Are there trials near you? If it’s hormone driven can they try different variety of blocker?

[Yikes123 in reply to bikebabe]

It is diffuse and gamma knife can’t isolate and treat it

[Timtam56]

I agree with everything that Discocat said. She often has such a good outlook and helpful ways of liking at things. I have no idea about things of the brain, only that I have heaps of Mets to my skull and I often worry about this. But it’s no use us telling you not too worry. It must be scary. I’m losing my sight and that’s scary. (Maybe nothing to do with the cancer) but it’s really scary as I live alone. So, I will still do the art that I can do, and only what I can do.

I’ve just been in tears cause I’ve worked so hard on a piece to submit for a completion. But every time I try to name my photo and upload it, it’ changed the size of the photo and renders it useless for the criteria. (Four hours I tried to do it tonight, and I can’t see what I’m doing) So. I’ve just decided to give up. And it’s bloody hard. Tomorrow’s the deadline.

Why am I telling you this? Because sometimes it’s just so *$(*ing hard! And it’s just hard! So sorry you have to go through this. O hope you get some answers though.

[AvidBooklover in reply to Timtam56]

In haste...try a site called PicResize.com. I use that a lot.

[love2golfwell]

I'm so sorry you are dealing with this situation. It is scary to think of the next stages and the best course of action. I think meditating and exercising when you can are good and keeping busy with activities you like to do. I would talk more with your doctor about possible treatments that might give you more time. Don't give up yet. Try to take one day at a time. Know that we are sending you hugs and prayers.

[Gingerann1]

Hi Yikes123! The choices we have to make are so difficult sometimes. You know what is tolerable with side effects for you but it may serve you well to give the Enhertu a try and if it is too hard on you you can make that choice then. This may buy time for you to be considered for a new trial/explore a few more options. I, like the others have mentioned would definitely get a second opinion. Wishing you peace as you consider your options and make your choices.

[HelenWi]

Dear Yikes, I also have brain mets and I understand that it’s scary to think of “what next”. My advise is to be aware/educated about some options but then to really put it aside and live life, like Discovat says. Activities you love help put you in the present. Whether it’s a knitting project, going out with great friends, a concert, a great tv series, your garden, reading a great book , etc. I also evaluate what I do and stop doing things that don’t bring me joy. I just stopped one thing and during that time am taking an Adult Ed course on Van Gogh with an amazing Stanford professor. I try to have something to look forward to all the time.

I’m currently on Xeloda with Tukysa. Tukysa is supposed to enhance the power of Xeloda. I’m HR+ but have a HER2 mutation which may cause Tukysa to target my mets. This might not apply to you but it doesn’t hurt to mention. I would get a genetic test like Guardant360 to see if you have any useful mutations in case you haven’t done that.

On Enhertu, I would think of it a great possibility and not be afraid. At the start of my treatments, I developed lung inflammation from Ibrance , and I was aware that Enhertu can cause that too but now I think: it might not and why worry ahead of time. It will be worth trying when the time comes. Just need to have a good plan.

I would also definitely get a second opinion. My onco is chomping at the bit to go to Enhertu but my second opinion has a perspective on other drugs before going there. She is from a cancer center that does research and is on top of breast cancer trials past and present which highlight new drugs and drug combos. Having her to consult with gives me great confidence. I really recommend second opinion.

I recently listened to latest updates on brain mets by Dr Nancy Lin and had posted this on another thread. (You could do second opinion with her! )

youtu.be/7L5H-jP_4Cw(Not working as expected?)

Best wishes to you. XO. Let us know how you’re doing.

Helen

[mariootsi]

Sending prayers and hugs. The fear is horrible! Enhertu may be in my future too.

[CTGirl1962 in reply to mariootsi]

Hi Marianne!! I’ve been on Enhertu for 9 months and so happy I have!!! You won’t be sorry! At first, the side effects are horrible, but after 2 or 3 treatments, your body gets used to it. If you want to plan on meeting for lunch one of these days…when the weather gets nicer, I’m game!! Glad to see you are doing well!!

Jody

[mariootsi in reply to CTGirl1962]

Sounds good!

[Phillipians4and6]

the initial fear is common for most of us. With many prayers and lots of positivity it gets better. However it will creep in when it’s time for scans or you hear something about someone with stage 4, or your mind starts to fill your head with thoughts of doubts. My remedy to that is again prayer and positivity. BIG Faith!!! God is ABLE!

[Totheriver]

Sending hugs and prayers 🙏💕

[Healthplus1]

I am so grateful you have brought up the reality of fear and decision making process to stop treatment. Sometimes I think I keep fighting more for my loved ones than myself. Just last week back in the hospital for a celiac plexes bock for the pain in my pancreas which has given me some relief but still on meds that make me sleep a lot . I have no strength to do anything that resembles life. My only real joy is spending time with my children despite a large support system of friends around me. I am truly grateful for all I do have but next week I start on Trodelvy and I ask myself how much longer can I and maybe more importantly do I want to continue this battle.

I appreciate your candor. It has given me an opportunity to say some things I needed to say.

[FiJaLo in reply to Healthplus1]

My mom is facing those questions right now - it is so hard because part of me wants her to try the new medication and the other part wants her to be able to possibly enjoy her final time without suffering awful side effects.

I wish I had an answer for her - I think you have to make the decision based on YOU and what you can tolerate. 💕

[Nocillo]

So sorry you are going through this. I agree with many others here, live in the moment and try not to focus on the future. None of us know what the future will bring. I always say I could get hit by a bus or choke on food. We never know and there is no reason to waste our precious time worrying. Easier said than done, but worth it. You might have 20 years left! None of us know. Do what gives you joy!

[Artesa]

I think palliative care can help you sort out your next steps and how you want to run your life. I try so hard with this stage 4 to live one day at a time but it's so so hard. Actually, I think palliative care would be good to have (for me) just having advanced cancer. I am thinking of you and wishing it weren't so hard.

[Jmarkova]

Dear Yikes123,

When I get too scared, I remember that my oncologist tells me not to lose hope. Please, do not lose hope and consider trying enhertu. I wish you all the best.

[Dragonfighter]

It is not easy to manage fear. I sat in a chair for two months after diagnosis. when I realized that wasn't helping I had to learn to live one day at a time. This was difficult for me as I am a planner and worrier by nature. I imagine different things work for different people. I try to keep busy and live in the moment. Wishing you all the best.

[CalGal56]

Hi Yikes123,

I so appreciate your reaching out to our forum. Fear is one of our common denominators and I find it is helpful to just talk about it with others who share a life with cancer. I have lived with breast cancer since 2000. I have been diagnosed 3 times the most recent in 1/23 with MBC. I have learned to live with cancer and the fear that comes up for me through meditation. I have practiced mindfulness meditation for over 15+ years. I am actually being trained to teach it as well. Look for a program called MBSR (Mindfulness-Based Stress Reduction) it is an 8-week training program. You may find it helpful. Many hospitals and colleges offer it. I don’t know where you are but UCSF has a program which you can participate in remotely. It has been life changing for me. I also have a simple question I ask myself when fear raises its ugly head, “What is true right now?” My answer, “I am breathing which makes things more right than wrong with me. “

Sending you many blessings. ❤️

[CTGirl1962]

Hi!

I read through all the responses and everyone here is so helpful. For me, palliative care is a Godsend. They help me so much. I definitely would give them a try. Also, I have been on Enhertu for 9 months and I find it very tolerable. My only complaint is that it makes me so tired (but most of these cancer meds do!!!). The first couple of treatments were awful as far as other side effects, but my body began to tolerate it. Give it a try!!! You have nothing to lose.

I wish you all the best and pray you find your happy place!!!

Hugs,

Jody

[Yikes123 in reply to CTGirl1962]

What were the terrible side effects? Are there any medicine or treatments that mitigated the side efffects?

[CTGirl1962 in reply to Yikes123]

I had severe diarrhea, but had Imodium to quell that. The exhaustion was so bad that I could barely lift my head. This lasted for about a couple of months. Then, I was ok!!!

Some people have worse side effects and some people have no side effects. We are all so different. I wish you lots of good wishes!!!

Hugs,

Jody