Update on my brain Mets : Hello friends... - SHARE Metastatic ...

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Update on my brain Mets

MyMiracle13
MyMiracle13

Hello friends. Here’s the latest on my brain Mets treatment protocol. Last MRI showed multiple tiny lesions and some larger lesions, largest of which is around 2 cm. Total is around 21. So my radiation oncologist decided to do whole brain radiation therapy (WBRT) over 10 days followed by SRS after a month to target the remaining larger lesions. I will have my brain CT scan tomorrow for the planning then the treatment a few days later. In the meantime. In the meantime, I am taking Exemestane only to control my lung and bone Mets as my oncologist does not want to burden me with the side effects of Afinitor while I am on radiation treatment.

I hope this treatment protocol works for me and please continue to send me prayers, positive healing thoughts and hugs. For those who have undergone WBRT followed by SRS or know someone who had undergone this procedure, please let me know how it was.

❤️Maria

92 Replies
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Hi Maria

Thinking of you and truly hoping your planned treatment is very successful.

Sending you a huge hug 🤗

Take care

Jo xx

Thank you. I really need it.

Sending lots of positive thoughts your way! Xxoo

MyMiracle13
MyMiracle13 in reply to lynzer

Thanks so much❤️

Sending positive vibes and virtual hugs. So many different treatments thank goodness to help us along. I hope your news will be more positive soon.

Take great care 🙏🏼💖

Hi and thank you. I do hope and pray that I will have positive news to share with everyone soon.

Hi Maria,

That sounds like a good plan of action on your oncologist's part, so I hope it will prove successful. I wish you every success with your upcoming treatment!

Take care,

Sophie

MyMiracle13
MyMiracle13 in reply to SophSP

Thank you Sophie. Will keep all updated.

Great to hear there's a plan, all the best with it, I'm sure you'll keep us up to date with it x

MyMiracle13
MyMiracle13 in reply to cazlav

Yes it’s good to know there is a plan. Just have to pray that the plan works🙏

Dear Maria,

Prayers and positive thoughts headed your way. It sounds like your oncologist has a good plan. Let us know how you are doing as soon as you can. Best wishes. Blessings Hannah

MyMiracle13
MyMiracle13 in reply to hdhonda

Thanks Hannah. The prayers and positive healing thoughts are much appreciated!

Maria,

I will pray, pray and pray some more that your treatment is successful, that your entire medical team is guided and that you will endure the procedures well.

I commend you for your strength during what must be a very very difficult season.

Big hugs!

Laura

Laura, thank you so much. It is a very, very difficult time for me and sometimes, I want to give up. But each morning when I wake up and pray for guidance on what to do, the Lord seems to answer me that it isn’t yet time to give up. So I’m giving it a go and see where it takes me. Please keep the prayers coming🙏

Yes Maria....lots of prayers for you. It sounds like a good treatment plan and I hope and pray it will be successful 🙏

Many hugs

Anja

MyMiracle13
MyMiracle13 in reply to SpiffyCJ

Thanks Anja. I am hoping and praying hard too that it will be successful.

Maria, sending you positive energy and a virtual hug. Sounds like you have a great team guiding your treatment plan. Please keep us posted.

Maura. ❤️

MyMiracle13
MyMiracle13 in reply to Tam-56

Thank you Maura. And great to hear that your scan results are stable. Take care.

Maria,

My gosh, I really am sending the most positive energy your way! I've heard great things about that treatment, so I hope it is very successful.

There's something about radiation that seems more physical/tangible, somehow reliable, than pharmaceuticals. The cancer can outsmart the drugs, but I don't think it can outrun the radiation beams!

Best of luck with it, I'll be thinking of you...

Lynn

MyMiracle13
MyMiracle13 in reply to LynnFish

Let’s hope it works. Except that I lose my hair yet again🥺

Here’s prayers and hopes the treatment works♥️

Thank you for the prayers🙏

Prayers sent!!! Xo

MyMiracle13
MyMiracle13 in reply to Pbsoup

Thank you so much!

My thoughts and prayers are with you Jo. Sounds like you are ready to do this. Keep in touch with how you are doing.

Much love Clare x

MyMiracle13
MyMiracle13 in reply to BellaE

Hi Clare. There are days when I’m upbeat and days when I want to give up. But my strength comes from the Lord. It’s prayers from everyone and positive thoughts thrown my way that keeps me trudging along.

Prayers and positive thoughts to you.xx Carolyn

MyMiracle13
MyMiracle13 in reply to Beryl71

Thanks Carolyn. The prayers and positive thoughts from everyone are what keep me going.

Hi Mymiracle

I had responded to one of your earlier posts I had SRS first then WBRT in October 2019. MRI last month showed no lesions left. I am still taking Nertanib, xeloda and herceptin . I did want to mention I also took mementine for six months after WBRT to help with any memory loss from radiation. Hang in there 🙏🏻🙏🏻

MyMiracle13
MyMiracle13 in reply to Amf1983

Oh thanks so much for your reply. You have given me much hope. I have been prescribed mementine but told not to take it yet. My WBRT starts in a weeks time so that’s probably when I start memantine too. Aside from brain Mets, do you have other extra cranial Mets? Once again, many thanks and please keep in touch!

Amf1983
Amf1983 in reply to MyMiracle13

Yes I started the mementine after the last radiation treatment.! I don’t have any other lesions in the brain at this time. Good luck with your wbrt and let us know how it goes 🙏🏻🙏🏻🙏🏻🙏🏻

MyMiracle13
MyMiracle13 in reply to Amf1983

I welcome any info you can share with me. Many, many thanks!

Sending love and wishing you luck Maria- you can do this.

Jackie x

I am praying really hard that I am able to get through this. On my own, it is difficult but with God’s help, I can do this🙏

Here's to this plan, which sounds very solid, working!

A great big thanks🙏

Hi Maria

I hope and pray all goes well with this treatment and that it is

not to hard on you 💕

Theresa

Thanks. I do hope and pray that the side effects are tolerable. And that my hair will grow back....

Praying for a complete healing! 🙏🏻💕

Thank you. I do hope and pray for complete healing🙏

Dear Maria, So sorry to hear about your new lesions. I am hereby sending you lot of loving caring thoughts. You must be beside yourself with worry! That does sound like a good plan for your treatment. Can you seek a second opinion? Even as the treatment proceeds? Not sure how easy that is for you. Wishing you well.

Cheers, June S.

MyMiracle13
MyMiracle13 in reply to 8576

Hi June. Thanks for the concern. There is not much choice in treating my brain Mets because although they are small lesions, there are many. Initially the radiation oncologist decided on SRS based on an MRI which I had done in one hospital. But when I had another MRI done in the hospital where they were going to perform the SRS, the MRI revealed more lesions. So she had to revise the treatment plan to WBRT first then SRS for any remaining lesions. Hope this plan works as there is no alternative.

Maria sending prayers to you as you face your treatment. May they zap that damn cancer out of there!

Ha ha. Yes, zap is the right word. Thanks for the prayers. They really help.

Yes they always do!

Sending positive thoughts your way Maria .

Thank you. I need them right now❤️

I am sure that God does not abandon us. You are a beautiful warrior and you will win this battle. You are special. I send you a bear hug 🌺🌺

Awww thanks loads for the bear hug❤️ I need a great big hug almost every minute. You are right in saying that God does not abandon us. I feel His hand guiding me every step of the way.

I'm sorry I can't help with your proposed treatment, but I am sending prayers and big hugs of comfort to you. Hope all goes well. Keep us up on what's going on.

Take care,

Susan

MyMiracle13
MyMiracle13 in reply to Aquadog

Thank you Susan. Your prayers and hugs keep me going when I feel down. It is not easy to face what I am going through but somehow I get the strength from God to not give up.

Hi Maria: Praying it all goes well & your side effects are manageable! ❤️🙏❤️

Thank you! Keep the prayers coming my way!

Your onc sounds very knowledgeable and pro-active. How lucky for you! More prayers and hugs are coming your way. May God bless and keep you. We are all here for you also.

My oncologist is not really proactive. He is very conservative which is why I am on Exemestane only for my extra cranial Mets. Thank God my radiation oncologist is on top of things. She is the knowledgeable and pro active one.

Maria it sounds like your team has devised a solid plan of attack for your new mets and I will be thinking of you and wishing you the very best as you go forward. Many ladies have given you some good advice. Take care.

Sandra

MyMiracle13
MyMiracle13 in reply to girlsptz

Thank you very much Sandra. I am very scared but I’m still able to stand and walk so I will plod on and see where the road leads me...l

Hello Maria: thank you for sharing your journey and treatment plan. We never know what is down the road for us. What would we do without God? He does give peace and comfort . Cheerio, Madlyn

Hello and thank you very much for your message. You are so right, we never know where the road will lead only that if you leave it with the Lord, he will guide us.

I will be thinking of you Maria and sending you healing wishes ❤️

MyMiracle13
MyMiracle13 in reply to Sarcie

Thank you so much.

Dear Maria

The fact that you have such a proactive treatment plan gives so much hope not just for you but for those of us in this who are praying for you and sending good wishes to you. Be well!

XXX OOO

Thanks. I thought I was at the end of the line but the members of my medical team are not ready to give up on me yet. I am grateful to them for that.

Your light will shine through!

XXX OOO

I just completed whole brain radiation (10 treatments) 4 weeks ago. It has not been the best recovery. I have extreme weakness in my legs and can't walk without a walker. They don't know why yet, so undergoing lots of additional tests. It is do frustrating - I just want some answers! Good luck - will be praying for you!

Oh I am so sorry to hear this. May I know what additional tests you are undergoing? Did you experience weight loss and muscle wasting before your treatment? Reason I ask is that I was experiencing this and I am now taking Prosure which seems to be helping.

Will be offering prayers for your recovery🙏 Are you still on steroids or have they discontinued them?

Hello. I just wanted to check in on you and to find out how you are doing? Has your leg weakness improved? I hope and pray that your are feeling better.🙏

No, I am not any better. Weak legs and unsteadiness will still not allow me to walk without assistance. This week I am meeting with neurology to conduct a nerve/muscle study to see if they can determine if this is a peripheral or central nervous system. I am praying for some answers, as we need to get to the bottom of this. It is very scary and frustrating. I continue to lose weight as I have no appetite,

I’m really sorry to hear this and I sincerely hope you can get to the bottom of this. Regarding your weight loss, maybe you can ask your oncologist if PROSURE or other nutritional drinks can help you maintain your weight. I too don’t have much of an appetite and eat only very small portions. I’m sure I’m losing weight too but what I am trying to do is to maintain my weight to stop it going down further.

Maria,

Sorry I’m so late. I hope your treatment is going well. I pray for all of us on this site everyday and I will specifically pray for you and your treatment. Please let us know how you’re doing soon.

Hugs to you,

Stacy

MyMiracle13
MyMiracle13 in reply to Staysha

Hi Stacy. You aren’t late at all. In fact you are right on time. I start the first of my 10 WBRT sessions today and I hope and pray that everything goes well. Thanks for the prayers and hugs! Maria

girlsptz
girlsptz in reply to MyMiracle13

Maria my thoughts are with you as you begin this journey. I am sending positive vibes that this will send those cancer cells packing. Thinking of you. Take care.

Sandra

MyMiracle13
MyMiracle13 in reply to girlsptz

Thanks so much Sandra. Your help and well wishes have sustained me. I finished my first round yesterday and so far so good. 9 more to go. I am on Aromasin as well but will defer taking Afinitor till after my wbrt sessions. Depending on how I respond to the wbrt sessions, I may start Afinitor soon after.

girlsptz
girlsptz in reply to MyMiracle13

Maria I am so happy for you. How often do you get your treatments? Usually the hardest part is making the decision and getting started. I'm a big believer in writing down a positive thought each and everyday and refer back to your thoughts on those bad days. Please keep us updated on your progress and hopefully just being on an AI will help you build back up your immunity too. Take care.

Sandra

MyMiracle13
MyMiracle13 in reply to girlsptz

Hi Sandra. Your suggestion of writing a positive thought each day and referring back to them on bad days is a brilliant idea. That’s because we all have good and bad days. My treatment plan is as follows:

1) WBRT 10 sessions, 1 down 9 to go.

2) Exemestane (Aromasin)

3) Afinitor after WBRT sessions (if my body can take it) start on 5 mg

4) SRS after a month from WBRT sessions to target any remaining larger lesions

5) In between WBRT sessions or after, find a lesion which can be biopsied to check on whether hormone receptor status has changed. The tissue will be submitted for genomic profiling as well to find mutations and possible treatment options that will work long term.

Once again, my gratitude for your concern.

Maria

SophSP
SophSP in reply to MyMiracle13

Hi Maria,

I’m pleased to hear that you have started your treatment. You must be feeling better now that things are moving along. I hope your first treatment went well and that the remaining ones do the job. It sounds like you have a great plan in place.

Take care,

Sophie 💐

MyMiracle13
MyMiracle13 in reply to SophSP

Thanks Sophie. I’m done with session 2 and 8 more to go. Hope all goes well.

Prayers and healing thoughts flying to you from Oregon! It sounds like you are in good hands with your radiation team. I agree with an earlier post, something about radiation feels more targeted and effective, and it really seems to help With brain Mets. I hope you can clear your schedule these weeks and just focus on healing, rest and prayer. Thank you for keeping us posted.

💕💕

Patty

MyMiracle13
MyMiracle13 in reply to MacroMom

Hi Patty. Thanks for the prayers and well wishes. I love this group, It is like having a personal cheering squad😄. In good and bad times, we are there for each other.

Wintervt
Wintervt in reply to MyMiracle13

Hi Maria,

I’ve been thinking of you and wondered how you are feeling. Sending positive energy and love!

xo Jade

MyMiracle13
MyMiracle13 in reply to Wintervt

Hello Jade. Thanks for thinking of me. I finished my WBRT and slowly recovering at home. Prayers and positive thoughts and wishes have kept me going.

Hi Maria

Will be praying for you.

Barbara

Thanks so much Barbara. Will be starting systemic treatment soon Xeloda 500 mg twice daily with Aromasin. Please continue to pray that this combination will work for me and that I get no bad side effects from Xeloda.

I will, good luck.

Barbara

Hi Maria, glad to hear from you. Continued prayers and please keep us posted.

Laura

Hi. Thanks for thinking of me. I’m recovering slowly from the WBRT but should be starting my systemic medication soon which is Xeloda metronomic dose 500 mg twice daily continuous with Exemestane (Aromasin). Please continue praying for me as I don’t want bad side effects from Xeloda🙏

You got it.

I’m wishing you get some good results .. ❤️

Thank you. I’m recuperating well🙏

girlsptz
girlsptz in reply to MyMiracle13

Maria so happy to read that you are doing well post radiation. I have been thinking of you. Thanks for sharing.

Sandra

MyMiracle13
MyMiracle13 in reply to girlsptz

Hi Sandra. I’m on my 8th day of Xeloda low dose and so far no side effects except for a bit of nausea on the 4th day. I’m eating more and able to walk a kilometer albeit slowly. Hope your next treatment works well for you. And many thanks again for always being there for us🥰

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