Wish me luck,

[BangorBelle]

Well I now have four out of four mets. I have liver, spine , lungs and now brain. Start my whole brain radiotherapy on Monday. Looking at this board it seems I am going to be exhausted for a couple of months. Not looking forward to wearing the mask either, as I am very claustrophobic 😢

[Sunnydrinking]

So very sorry to hear your news. Wishing you all the luck in the world with your treatment.

MBC truly sucks !

Try & enjoy the weekend and be kind to yourself.

Very best wishes.

Jo xx

[Hidden]

Hi Clare,

I wish you the very best for Monday. Would it help your claustrophobia if you wear an eye mask? I hope you are able to tolerate the radiotherapy and that it successfully zaps those tumours.

Take care,

Sophie

[BangorBelle in reply to Hidden]

No eye holes the mask

[Hidden]

I'm sorry to hear about the brain Mets. I may end up in the same situation due to a recent CT scan showing enhancement on the brain so I'm now waiting for an MRI.

Sending much love and will be thinking of you x

[Teddielottie]

Sending love to you in Bangor as you start your whole brain treatment and I hope it does the job and you can begin to enjoy the summer ! Take care ! x ❤️

[MyMiracle13]

Good luck! Just know that it will get better. The fatigue will lessen and your hair will grow back. You may just have a rough 2 months after the WBRT but it does get much better after that. At the moment, I’ve even forgotten I have brain Mets. You are in my prayers. You can do this!!! Maria

[Teddielottie in reply to MyMiracle13]

Maria , so happy for you to have pulled through whole brain therapy and are now reassuring others , starting out on a similar path . You’re an inspiration! Hope you continue to do well ! ❤️x

[MyMiracle13 in reply to Teddielottie]

Yes I am very grateful to God and I sincerely believe that I wouldn’t have pulled through without His help. I was so weak and experienced so much weight loss that I was pretty sure this was the end. I was even using a wheelchair during my hospital appointments and could hardly walk 100 meters. But somehow God had other plans for me. I hardly prayed before but during this period when I was at my lowest, things happened. Small miracles which I cannot explain. Now I walk up to 4 km for exercise, have regained lost weight and feel good. I leave it all in God’s hands🙏

[mariootsi in reply to MyMiracle13]

Amen

[Gingerann1 in reply to MyMiracle13]

May God continue to have His healing hand on you.🙏🏻

[ChrisVict in reply to MyMiracle13]

This sounds remarkable. Really would like to hear more about your journey from beginning. Having faith and the strength to go through the debilitating treatments. Are you Er+Her2-? How long have you been MBC?

[MyMiracle13 in reply to ChrisVict]

Hi. I started a reply to you yesterday and I was already so far into my story then I don’t know what I clicked but everything disappeared. So I will just tell you what I can for now. I am ER+Her-. Diagnosed Nov 2012 and had mastectomy followed by 6 sessions of IV chemo. Local recurrence on 2014 and had 38 sessions of radiation. Diagnosed with MBC in March 2018 with Mets to lungs. Was on Ibrance and Fulvestrant. In July 2020, I experienced tingling and pain on my right arm, body weakness and also diagnosed with Horners syndrome. I will stop here in case my reply disappears. The rest of my story will follow.🙏Maria

[MyMiracle13 in reply to MyMiracle13]

Hello again. To continue my story, after being diagnosed with Horner’s Syndrome and experiencing tingling in my arm and whole body weakness, I went for a PET/CT scan where it showed that I now had 3 lesions in the brain and that I also had more lung lesions and slight pleural effusion. Because of the brain lesions, I further had MRI which showed that I had 21 not 3 lesions in my brain. Hence the WBRT. By this time, I lost a lot of weight, had no appetite and had to use a wheelchair to get to my hospital appointments. Each morning that I would wake up, I didn’t know whether I would survive the day or not because most mornings, my head would feel full. It was very difficult for me to walk 100 meters and taking a shower was a chore. Fast forward, it took about 3 months for me to feel “normal” again. I started Xeloda on Oct 1 and by God’s grace my markers have gone down. But I credit my recovery to unexplainable miracles. For instance, on Sep 19 last year, I received a package from the brother of my sis-in-law. Although I know him, I don’t see or talk to him often. Not even once a year. And he doesn’t even know I had Mets. But the package contained a tilma of Our Lady of Guadalupe and he sent a note with it which read “for whatever reason that only Mama Mary knows, she wants you to have this.” He said that one morning while meditating, he heard a lady say my name and told him to send me the tilma. I can tell you that after I received that tilma, I was on the road to recovery. Will continue next time since this reply may disappear again. Maria

[kduck]

Prayers

[Hazelgreen]

Wow! That is not good news. I'm glad to know that you live in a beautiful seaside town, and have loving family around you. That should all surely help while you go through this treatment! You may also find Maria's reply below encouraging. Keep your courage up, with your positive attitude, and you too will certainly persevere.

Best of wishes from a Canadian whose grandfather came from Northern Ireland, Cindy

[SeattleMom]

Love and prayers to you, Clare. May you have successful treatment, and may your fatigue lessen as the weeks go by. I wish you God’s grace and healing light and the comfort of Mother Mary. Linda

🙏🏻🙏🏻💗💗

[Pachira]

Good luck on Monday! It’s easier said than done but deep breathing and the knowledge that you should be on the mend by Spring. My sister lives in Coleraine but is originally from Scotland. It’s amazing how the accent is so close. I’ve lived in the States for 35 years but still have my accent. Keep thinking of happy times. I’ll be sending you good thoughts!

Chris

[stardust1965]

I’d repeat what Jo Sunnydrinking has already said. Wishing you all the luck in the world. Vicki xx

[Feb1211]

All the best for your treatment hun xxxx

[MCBS]

I am quite sure you can do this ! You are blessed with strength and positivity.

[Joannaaaa]

Sending good wishes to you

[JPutt]

Thinking of you - sending hugs. Hold onto what Maria says - bless her x

[Thatflowerlady]

For your claustrophobia maybe ask your dr about a mild sedative . It helped me .

[LibraryGeek]

Sending lots of love and hugs. Take it easy and give yourself time to recover from the treatment. Will be thinking of you xx

[mariootsi]

I wish you well with your treatments and minimal side effects.

Love and hugs,

Marianne

[Amf1983]

Prayers for you 🙏🏻 I also had stereotactic brain radiation in May 2019 then whole brain Radiation in October 2019. Other than hair loss there were no other side effects for me .

Good luck !!!

[ChrisVict in reply to Amf1983]

You make it sound like a piece of cake! Good to know

[NPmary]

l am sad for your news. Wish you the best of outcomes. I didn't have brain mets but did have to wear a mask for the radiation l had to my neck, it was like being hammered into a cage mask, it wasn't for very long but claustrophobia can certainly make it worse. I suggest practicing lying very still in bed, try not to move at all, close your eyes, concentrate on your breath in and out let thoughts come and go paying little attention to them. They will offer you music to listen to while you undergo this, they should give you a choice about the type of music. It took me awhile to figure out that l did better without music. I hope this helps. I know it sucks, lm sorry.

Mary, ❤

[ChrisVict]

Very sorry but it sounds like you have found the courage. You are an example for all of us persevere and take care and you will be through with radiation and can go back to chemo as usual. This is the new reality and we all keep our fingers crossed for new

Treatments and cure.

[Aquadog]

I'm sorry to hear about the brain mets and I understand about the claustrophobia. When I had a brain MRI I had to have that big contraption over my head. That called for Xanax. Maybe you should ask for something like that? I don't know if the mask allows for an eye cover, but for all my other MRIs I used a washcloth I brought from home. Worked like a charm. Even when my crazy impulses urge me to open my eyes I couldn't see anything. I wish you the best of luck and pray your SEs are mild.

Susan xxoo

[jersey-jazz]

Dear one

I too am sending you prayers, kisses, hugs and much love. You are valiant and will do this and come out on the other side of the treatment, better and healthier.

XXX OOO

[MaryCos]

Thinking of you and sending lots of positive vibes your way. Will look for your updates on how you are doing.

Cos

xo

[Hidden]

Really sorry to hear of the tough news you have had, and the difficult time ahead. We are strong though and you will get through this and come out of it the other side.

We will all be sending you our best wishes and support to help you through it. Keep us informed if you can.

Clare x

[Topood]

Good luck on Monday! I join the others in hoping that treatment goes well, and that you are able to enjoy the summer! I will be thinking of you. I have 3 of 4 Mets....they checked my brain but, as I told my doctor, all they found was rock hits of t he 70s....hope you don’t mind the joke! I hope soon all you have in your brain is the hits of your favorite era!

[hurricaneheather]

it makes the heart sad to read this. keeping you in my thoughts. a Buddhist quote that helps me through challenges, "In the confrontation between the stream and the rock, the stream always wins- not through strength, but through persistence." may you be at ease.

[lynnhbtb]

I’m so sorry about this. You have a great attitude and will come through this just fine, hang in there. My heart is with you.

[ChrisVict]

I just want everyone to know those who are Er+Her2- that are unresponsive to hormonal treatment and looking forward to chemo IV I was reading an amazing article about a new drug trial ARTEST 3 at Dana Farber and Harvard Medical school collaboration that will give us hope works with androgen activators. Renewed research with new approach sounds so promising no idea how long to market.

[Pbsoup in reply to ChrisVict]

Here is some news. It looks. Like it is stage 3 so that’s promising assuming it works. google.com/amp/s/news.yahoo...

[ChrisVict in reply to Pbsoup]

That’s the article I read it does show results from the other 2 studies which appear very good. They are going 3rd trial how many do they need and how long to market?

[soleila3]

Thinking of you and praying for you.

[Onie54]

Keep repeating the mantra “I am strong and powerful” before during and after, you’ll get through this ❤️

[Hidden]

BangorBelle - I was off the board for a long time, but recently re-engaged, temporarily, but was disheartened to read your update! I'm so sorry, but truly do admire the "stand back from it all" way you describe it...

I have read really positive things about the whole brain radiotherapy, so I'm hopeful for you.

And I relate to the claustrophobia. Someone mentioned an eyemask...I'll second that motion...I'm very claustrophobic but somehow an eyemask...with no holes!...puts me into my own head, to where I can ignore the plastic tunnel?

Someone else mentioned mild sedative, I'm also a fan of this! I take 1.00 whatevers of Xanax prior, with .25 reserved in my sweaty fist for the last minute, to be placed under my tongue! It really does help, not sure I could get through it without!

Best of luck to you! I'm hoping for the best, wishing you well!

Take care,

Lynn

[Hidden]

I’m sorry. I am sending my very best loving wishes for you. We are here for you.