PET scan results not good. Take note ... - SHARE Metastatic ...

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PET scan results not good. Take note of my symptoms

MyMiracle13
MyMiracle13

Hello ladies. My PET scan results came back and they are grim. I have brain lesions, my lung nodules have grown in size and intensity, a spot on my vertebrae lit up and there is a spot that lit up in my liver and pancreas (although no lesion is seen on CT scan.)

I asked to have a PET scan because I was experiencing weight loss, weakness and a tingling sensation on my right arm. Sometimes it would feel like a bolt of electric current would run through it. Then I noticed that my arm was wasting and that there was no perspiration on that arm. Then 3 weeks ago, my right eye started to droop and I also noticed that the right side of my face would not perspire. I consulted a neurologist who diagnosed it as Horner’s Syndrome. Because I have lung Mets, he thought that there might be a lung tumor near the top of the lung pressing on a nerve. But the PET scan findings did not find a lung tumor pressing on a nerve. Instead, there are 3 brain lesions found.

I am scheduled to have an MRI of the brain to find out more details. For those who have undergone gamma knife surgery of the brain or any type of radiation on the brain, I would be very interested in your experiences. I’m not sure if Shoofoo has had gamma knife surgery thrice already. For those experiencing tingling sensations, best to have them looked into. It may be something ordinary like neuropathy but it could also be something else.

Please send me positive vibes and above all, please pray for good outcome of my next fight with cancer.

116 Replies
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Hi Maria,

I'm sorry to hear about your recent bad news. I've not heard of Horner's Syndrome before, but hopefully that can be successfully treated. I also hope you are able to have the new lesions radiated. Please take care. I hope you have some supportive family members with you to help and support you.

All the best,

Sophie

MyMiracle13
MyMiracle13 in reply to SophSP

Thanks Sophie for your concern and good wishes. Horner’s Syndrome is quite rare but it’s not really a disease but a symptom of an underlying serious condition. I shared what I have just gone through because if some ladies here experience it at some point, they will know to consult a neurologist right away. Once again, many thanks.

SophSP
SophSP in reply to MyMiracle13

You're welcome, Maria. I hope that you are able to get some great treatment that will push the cancer back. I'm glad you saw a neurologist and know what is going on. It is so thoughtful of you to share your symptoms in case anyone else has the same experience as you. 🌹

I’m sorry Maria, that is not good news. Take some time to feel bad and then pick yourself up and fight again. I know there are ladies in this group that have had all sorts of combinations of cancer and I hope they have the energy to speak of their experience. I’m having scans in 2 weeks and not expecting great results because my cancer markers have been going up quite rapidly, so I may be joining you. I pray that your docs will find the right combinations of meds and/or procedures to help you in the next stage of this fight. We are all strung out ahead of you and behind you and will be with you in spirit.

Hugs, Elaine

MyMiracle13
MyMiracle13 in reply to Red71

Hi Elaine, thanks for replying and commiserating with me. I sincerely hope and pray that your scan results are way better than mine. I hope too that my brain lesions can be radiated and that I don’t have to undergo craniotomy. It’s the worry and anxiety and the endless procedures that we go through that’s sapping my energy. Hope you have get better news than me.

Red71
Red71 in reply to MyMiracle13

I will definitely keep my fingers crossed that there is something better than a craniotomy. I’ve not heard much about them in relation to MBC and just the name would fill me with foreboding because I would worry about side effects. Surely they would chose chemicals above surgery. It’s the not knowing that saps my energy. I wish there was a clear path laid out for us that made it easy to see how far one wanted to go down the path until we decide no more. But I’m praying there is much more yet for you. Hugs, Elaine

MyMiracle13
MyMiracle13 in reply to Red71

Yes Elaine. I get what you are saying. There are times (like this) when I get tired of all the endless tests, doctors appointments, bad results and anxiety and wish to throw in the towel. But I will plod on and see where this road leads me. I will pray and hope for the best. I will pray for you too that you get good results from your scans.

Layla818
Layla818 in reply to Red71

Dearest Red, I so identify with you on the "clear path" I wasn't feeling bad until I started on Ibrance. This is not the walk in the park that is portrayed in the commercial! I started on ibrance 100mg and for the first 3 months I couldn't finish a full cycle. So tired and feel OK about just stopping and feeling good. In one week I will start on 75 mg to give more time for counts to recover i broached the topic about stopping and felt like a coward not to forge on. There is no clear path for us

Red71
Red71 in reply to Layla818

You will feel better on 75 but it is still no walk in the park. I’m not ready to throw in the towel yet but I know there will come a time when I am. We shouldn’t be made to feel like we are cowards. It takes a lot of bravery to keep doing this every day and when we think we are done, people should respect that decision.

You poor darling....cancer is so hateful and I feel angry for you at this moment

I hope your next treatment does the job and things improve

Love

Barb xx

Thank you Barb for your kind thoughts, I think I’m too spent to be even angry at this time. I’m just very glad I found this site and that all of you are so supportive. Will post updates on my treatment plan. ❤️ Maria

Oh Maria,

I am so sorry to hear this news. Thank you for sharing your symptoms. Hopefully, the MRI will give your oncologist more detailed information so that he or she can put a plan together that will help. Sending ♥️and a virtual hug.

xo Jade

MyMiracle13
MyMiracle13 in reply to Wintervt

Hi Jade. Thanks for replying and sending a virtual hug. I shared my symptoms because Horner’s Syndrome is apparently a rare occurrence. It’s not the disease itself but it is the manifestation of an underlying disease which can be life threatening.

Thinking of you Maria and sending you healing vibes and hugs. We are with you all the way and thank you for sharing your fears. To many of us have pent up feelings and can’t express them.

We all really hope new meds will be forthcoming soon. Research is a marvellous thing and as you know new drugs are being introduced all the time.

With all my heart I send you good wishes.

Cheryl.

Oh thank you so much Cheryl. After the initial shock of finding out, I am now ready to fight. I’m sure I won’t always stay positive in my outlook and will slide into feeling sorry for myself at times but that is how it is with us. Thank you for the healing vibes and good wishes. They are so much appreciated. ❤️Maria

Maria as you know we all feel sorry for ourselves at times, quite rightly so. You are entitled to. It’s so hard for us to come to terms with. Try and release those endorphins and stay on top of it all. Bat away negativity and look at the positive aspects.....modern medicines.

Take care and keep us updated.

Cheryl

Thanks Cheryl❤️

Hi Maria,

I’m so sorry you are dealing with this, hopefully your next treatment will be successful and your QOL will improve again,sending you hugs and prayers.

Anne

MyMiracle13
MyMiracle13 in reply to Amm1

Thanks so much Anne. Your prayers are much appreciated and so are the hugs❤️

Sending you positive vibes. Hopefully, finding out about this sooner, rather than later will mean a better outcome for you. Breathe. Scream. Cry. Vent.. Do what you need to do as -I am sure this is a shock to the system. Then talk with all the docs and specialists you need to in order to fully understand what is going on and find a plan.

Hugs and health,

Nama

Thank you so much. This development is still so new to me and you are right, until I get a better understanding of what is going on and what my treatment plan will be, I will be at a loss. I hope to find a way forward❤️

The doctor who cured Jimmy Carter's brain cancer is located in New York City. I don't know where you live but it would be worth a visit to Dr. Gil Lederman for a second opinion. The treatments are painless and he is a very positive doctor who has been doing steriotactic radiosurgery for many years. You can find information on the RSNY website and you can call and have a CD and brochures sent to you. They are happy to send the information. He also has a radio show on ABC 77 that you can listen to on the radio(770) in the NY area or on your computer elsewhere. I am not sure of the broadcast time but you can look up the schedule on ABC 77. I would recommend that you listen to the radio show as it is informative and can give you insight into his practice and radio surgery in general.. He does treat metastatic cancer. I have been going to him since February and I believe that he is helping me with treatments to my spine, liver, hip and tibia. I am hoping that my upcoming scans will confirm that. I went from crutches and a wheel chair to walking a couple miles after he treated my tibia. I have had only positive experiences with him and his staff. Good luck in whatever treatment you choose and wherever you chose to go. God Bless.

Thank you for this information. Unfortunately I live in the Philippines but I will definitely read up on Dr. Gil Lederman and will listen to his radio program. I am happy for you that he was able to greatly improve your quality of life❤️

Maybe you could share this with your doc in the Philippines and he could consult with dr Lederman by phone. Also there are so many new drugs that cross the blood brain barrier that you could use following whatever radiation they will do on the brain. There are so many new things out there!

My Miracle13, I’m sorry for what you’re going through. I am in another forum as well. I hope it’s okay to put it here. It’s breastcancer.org. If you sign up and go in and search “gamma,” there will be posts you can read from people who have had it. There is also a thread called “Brain Mets Sisters” which you could look at. Hugs.

MyMiracle13
MyMiracle13 in reply to KMBL_

Thanks very much for this suggestion. I have read some posts on breastcancer.org but I’m not yet a member. How do you choose which community or thread to join as there are so many?

KMBL_
KMBL_ in reply to MyMiracle13

Hi, MyMiracle. It’s not really like Healthunlocked. You can see all of the threads, but if you find some you like, you can add them to your favorites so that if anyone posts, you’ll see it in your Favorites. I have the Ibrance thread, and a few others in my Favorites. If you put the Brain Mets thread in your Favorites, you’ll see when anyone posts. If you go into the thread, you can go back to the very beginning. Once you join, you would click on Community to get to the posts. You can’t see that part unless you’ve signed in.

MyMiracle13
MyMiracle13 in reply to KMBL_

Thanks for getting back to me. I will give it a try tomorrow,

I'm so sorry to hear you're contending with brain mets, but the good news is that with three brain mets you should be able to have Gamma Knife which is very tolerable and effective. I know many people with brain mets who've done well for years, and there's every reason to think you'll be one of them!

(As an aside, I can empathize with regard to Horner's Syndrome because I too have it - in my case, it was the result of a lung met).

MyMiracle13
MyMiracle13 in reply to Bestbird

Thank you very much for your reply and for giving me hope. I’m still in shock and it will probably take me a few days to come to grips with my new reality. May I know if your Horner’s Syndrome resolved with treatment to your lung met?

Bestbird
Bestbird in reply to MyMiracle13

Good question! Although the lung met shrank, the Horner's never resolved. I had my droopy eyelid surgically fixed, although it's still not quite normal-looking. Thank heavens for wearing glasses since it's not noticeable with specs! Also glad that Horner's is not painful - just unusual.

MyMiracle13
MyMiracle13 in reply to Bestbird

What other symptoms of Horner’s did you have? Did you also not perspire on one side of the face? Did you have tingling and sometimes like a burst of electric current going through your arm? Because that is what I have aside from the droopy eyelid. I was prescribed Pregabalin for the tingling but I’m not sure if it’s doing any good.

Bestbird
Bestbird in reply to MyMiracle13

Hmmm... no tingling. The pupils of my eyes are different sizes, I don't perspire on the affected side of my face, and light seems to affect that eye differently (hard to explain).

MyMiracle13
MyMiracle13 in reply to Bestbird

Thanks for the reply. Just got my MRI results. I’m afraid it’s not just 3 Mets but multiple. I have to ask my oncologist if Gamma is still a possibility or if it will be WBRT. Any information you can share with me on WBRT would be most appreciated.

Bestbird
Bestbird in reply to MyMiracle13

Darn! I'm sorry to hear you have a few more mets, but depending upon the number and size, you may still be a candidate for Gamma Knife.

In my book, "The Insider's Guide to Metastatic Breast Cancer" which is also available as a complimentary .pdf, is the latest science-based information about treating brain mets. You can obtain the paper back, eBook or .pdf by visiting insidersguidembc.com/about

And if you do need WBRT, the book/.pdf has information about a novel hippocampal-sparing method which helps preserve cognitive function.

With very best wishes,

Anne

MyMiracle13
MyMiracle13 in reply to Bestbird

Thanks so much Anne. You are a mine of information and a big help to all of us. I will definitely look into this hippocampal-sparing method.

Bestbird
Bestbird in reply to MyMiracle13

MyMiracle13, wishing you the best and please keep us posted as to how things go. Fingers and toes crossed!

Sorry to hear this news and just to let you know that I am thinking of you and sending love from across the globe . I know you have daughters who are far away and hope you have others that can help and support you . Hope the next treatment is a success ! Much love x 💕

Thank you for the love and support. My daughter who lives in Singapore wanted to come home when she heard the news but Singapore Immigration makes it really difficult for foreigners to return after they leave so we just have to rely on Zoom at the moment. How is your daughter doing?

Yes , we too have been relying on Google Nest Hub with my mum (who is in her mid eighties and staying with a brother during the pandemic) and it has been a godsend ! We have just gone back into a regional lockdown here , as the number of cases started to increase again. I have been kept busy helping family redecorate and refurbish my mums home for when she returns , so that has kept my mind busy too ! I am fortunate to have my daughter home during lockdown after she graduated uni , but everything is on pause at present as she was hoping to start working in London in September . It’s all wait and see !

I hope you soon can start the next treatment .Keep in touch! x 💟

Maria my heart goes out to you and I'm so sorry that your results were not good. I know as we all would feel this is a total kick in the gut and you need time to process the information, get the MRI and know that when all the information gathering is done your oncologist will devise a plan of attack. There are a number of ladies that have posted here that have had Cyberknife done for brain mets with excellent results.....I hope they post to you. Another thing to keep in mind that within the last few years there have been many developments of drugs that cross the brain barrier thus making chemotherapy treatments very effective in this realm as well. I can't tell you not to worry as that would be impossible for any of us so allow yourself to be angry, frustrated and grieve but also know that your oncologist will create a treatment plan. I am sending you all the positive vibes I can from across the ocean and know that we are always there for you. Take care my friend.

Sandra

MyMiracle13
MyMiracle13 in reply to girlsptz

Your good wishes mean so much to me. Yes I haven’t yet come to grips with this new development so I’m totally lost. I hope that when I gather all the facts and present them to my oncologist, he will be able to map out a treatment plan for me. Would you know the names of the new chemos that can cross the BBB. Thank you so much for your concern. You ladies in this forum are truly wonderful❤️

girlsptz
girlsptz in reply to MyMiracle13

Maria I haven't spent much time online the last while but I will in the next day or two send you a private message with some resources around brain mets and latest developments for treatment. Stay strong and allow yourself to process but know that lots more living is coming your way. Continuing to send you positive vibes my friend.

Sandra

turbo60
turbo60 in reply to girlsptz

Can you send them to me also. Dealing with brain mets and leptomeningeal involvement with circulating cancer cells in my cerebrospinal fluid.

girlsptz
girlsptz in reply to turbo60

Will do....but probably not until tomorrow.

Sandra

❤️🙏❤️ all I can suggest other than prayer & love is Joe Tippen’s protocol. I pray you find a remedy. ❤️🙏❤️

Hello and thanks for the love and prayers. I need them badly!

I'm so sorry to read this Maria, but thank you for sharing it and the advice to pay attention to symptoms. I think sometimes we get so used to dealing with side effects that it's hard to know when to be more proactive. Good for you for asking for the PET scan.

A friend in a local support group had the gamma knife procedure with good results. I don't know a lot of the details but it definitely helped with his symptoms and shrunk the cancer.

Sending you positive vibes from Oregon. Like Elaine said, we're all on this train together, in one car or another, and we are with you on this journey too.

Patty

MyMiracle13
MyMiracle13 in reply to MacroMom

Thanks very much for the concern and positive vibes. I’m overwhelmed by all the good wishes coming from you all. I do hope I get good results from gamma knife and whatever new chemo or meds I will be on.

Maria,

Please know I’m thinking of you and you are in my prayers. Jimmy Carter comes to mind when I read your posts. I had SBRT on a tumor in my lung. It was easy peasy with no side effects. Hopefully you will have a good experience too and it will yield great results.

Much love to you,

Stacy

MyMiracle13
MyMiracle13 in reply to Staysha

Thanks very much Stacy. One of the ladies here gave me the name of Jimmy Carter’s doctor - Dr. Lederman. Unfortunately I live in the Philippines so can’t do a consultation with him but I will look for his radio show and listen to it. I’m happy that you had good results with SBRT on your lung met. I’m hoping radiation will work for my brain Mets too.

Sending prayers and healing thoughts to wrap around you for comfort. God bless and take care of you🙏❤️

Thanks so much for your kind words. I do feel comforted already by the prayers and healing thoughts you sent my way🙏

Hello MyMiracle,

I know where you're coming from. I am sending you positive vibes, healing prayers and keeping you in my thoughts and in my heart. Please let me know how you're getting on. I feel for you. I'm with you in spirit.

Love and hugs, Bev❤🤗🌟🙏🏽

Hi Bev. I really appreciate your prayers and good wishes. Having all of you send positive vibes to me has lessened the burden I am carrying. I am especially grateful for the healing prayers and love you and everyone else has sent me.

You will be in my thoughts all the time, I have just had a PET scan and they have found 3 tumours, please believe me I am at your side. God Bless and please keep me informed. All my love and care to you!🌟🙏🏽

Sending healing thoughts! I had 3 PET scans with bad news that led to surgeries, rads.....but I’m still going. This MBC has so many unknowns that make it hard but I’m with you!!

MyMiracle13
MyMiracle13 in reply to Duffles

Thanks for your reply. I am so blessed to be in this group and receiving all your love, prayers and healing thoughts. Only those things keep me going.

Sending love and wishing you strength and hope Maria- you can do this. We are all behind you. xx

Thank you so much for your reply. It’s the positive thoughts and vibes I receive from you ladies that keeps me going. Please know that I am truly grateful for your support.

Hi Maria,

My mum had radiotherapy to her brain (stereotactic radiotherapy) big blast and since has had a scan and all is good no growth and the radiotherapy got where it needed she too has experienced loss of the right side of her body arm and leg not fully but has lost strength! Tiredness was the most severe side effect for her. Hope you find the answers and treatment saps what it can good luck x

MyMiracle13
MyMiracle13 in reply to Ssm2019

Thanks for replying. I needed to hear this as I am hoping for good results. You have given me hope❤️ Prayers and good wishes I send to you and your mom,

May I know if your mom had whole brain radio therapy or gamma knife? My MRI results show multiple Mets so I’m wondering if I will be needing WBRT instead.

Ssm2019
Ssm2019 in reply to MyMiracle13

Hi Maria, sorry I have only just seen this, my mum had stereotactic radiotherapy (one large blast) it was just on one spot in her brain, they just said stereotactic radiotherapy and it was only on one part so wasn’t whole brain radiotherapy. Was just wondering if you have ever tried jo Tippens protocol? I have just ordered them for her to try what’s to loose? Hope you are doing ok! X

MyMiracle13
MyMiracle13 in reply to Ssm2019

Thank you. I have multiple brain lesions but I may still be a candidate for steriotactic radio surgery like your mom. I did try the Panacur C for a while. For a few months, my tumor markers went down but the started rising again so I stopped.

Maria,

Your current condition is news to me. But I want you to know that I will be praying for you.

Lots of hugs and prayers to you. Blessings, Hannah

MyMiracle13
MyMiracle13 in reply to hdhonda

Thank you so much Hannah. Your prayers and support give me strength to plod on.

I am so sorry to hear this. Hope and pray the doctors come up with a plan to treat this and that it may be effective 💕

Theresa

Thanks Theresa. The waiting for the a treatment plan is the most difficult part. I’m in limbo at the moment. Waiting for MRI results before my oncologist and I can move forward.

So sorry to hear about your results. It does sound like there are treatment options for you. I can understand that you are still reeling from this news. I wish you well and will be waiting to hear how you make out with your visit to Oncology.

Cheers, June S.

MyMiracle13
MyMiracle13 in reply to 8576

Thanks June. I’m speaking with my oncologist via Zoom tomorrow. I believe he will let me know what will replace my Ibrance for my systemic disease management but as for my brain Mets I still am waiting to get a second opinion.

I am so sorry dear woman. My heart is with you. God I’m so angry Maria ? is suffering— that we all are. My heart is with you. I pray for your heart, during this time of bad news. ❤️❤️❤️

MyMiracle13
MyMiracle13 in reply to TwithBC

Thank you so much for commiserating with me. I am so down at the moment. Waiting for a treatment plan is the worst as I don’t even know if the new treatment plan will work or for how long it is going to work. I need all the love and prayers❤️

I am sending you much love, prayers and good vibes. Stay strong, we all love you here💐❤

Thanks so much. You can’t imagine how much your support means to me❤️

I'm praying for you and for a miracle to bless your life and I ask it in the marvelous name of Jesus Christ, Name above all Names, Lord of Lords, King of Kings, amen sweet Jesus let it be so and thank You that you hear our prayers <3

Thank you so much for your healing prayers. I am doing a healing retreat right now and I am asking the Lord to let me have more faith and trust in Him.

It's all Him, Jesus already paid it all, we could never afford to pay the price He paid. You are loved; had you been the only one He still would have gone to the cross for you, I believe that with my whole heart! <3 Isaias 53:5 (KJV) ~ But He was wounded for our transgressions, He was bruised for our iniquities: the chastisement of our peace was upon Him; and with His stripes we are healed! (Isaias means Yahweh is salvation)

Thank you❤️

Oh, so sorry about your pet results. My heart, prayers and love go out to you. Thank God you took note of your symptoms. Your onc will have a plan...for sure.

Love and hugs,

Marianne

Thanks Marianne. It’s still a shock to the system right now but when I gather all the information, I hope and pray that there will a treatment plan that will work for me. Once again, thanks for commiserating with me.

We are all here for each other through this damn rollercoaster ride!

Thanks so much for your support Marianne. It means a lot to me❤️

I don't like reading posts like this. My heart aches for all of us. I will be praying for you. I'm also going to say something many people will disagree with. I don't want to argue just my opinion. I sincerely believe there could be a cure for certain cancers but they make too much money putting us through this. And I believe they don't care when we die. There's always more coming. In the long run if I'm correct they will stand before God for their actions. Sorry, I'm a bit emotional right now. I didn't get great news on my scan and my options are running out.

MyMiracle13
MyMiracle13 in reply to Selmac

I’m so sorry I did not know that you too are in the same dark place like me right now. I wrote the post because I wanted to share the symptoms I had prior to my diagnosis to help others be aware. I too will pray for you. Thank you for your prayers. May we both find faith and trust in the Lord.

So sorry to read this and sending prayers and hugs along with everyone else. My sister had both full brain radiation and then 2 years later Gamma Knife. In her case, the full brain radiation was better.

Thanks for your reply. This is great news for me because I may be having whole brain radiation. My MRI showed several brain lesions, some big and many small. May I know why you say that your sister was better off with the whole brain radiation? I’m sorry to be nosey but does your sister have other Mets aside from the brain? I have Lung Mets, and a couple of bone Mets. I’m just in a desperate situation now and any information you can give me will be so much appreciated.

I am hesitant to answer, my sister had inflammatory breast cancer and mets in her bones, liver, and brain. The whole brain radiation gave her and additional two years of progression free survival with very few side effects. She was able to continue working, living alone, driving her car, and caring for her two boys. After the two years, she had progression and Gamma Knife. I don't if it was the Gamma Knife or the six years of drug toxicity, but after that, things changed. I don't want to scare you as we all know many stories are different. I felt that the whole brain radiation was a good decision.

Thank you so much for your reply and for being honest. I know that brain Mets is life changing and can alter one’s personality. I was just told by another radiation oncologist who I asked for a second opinion that I may be eligible for steriotactic radiotherapy (SRS) evenwith multiple brain Mets. So we shall see when I actually see her next week. I just did a teleconsult to get another opinion.

You are welcome. I don't feel that we asked enough questions about the effect on cognitive function - we just wanted to zap those little devils away. Praying for you.

It’s the same situation for me now. Doctors seem to just want to zap the darn tumors but haven’t explained to me the pros and cons of either treatment. I have to ask them more about it before I dive in. Many thanks for replying to me and sharing your sister’s experience. It has helped me more than you know❤️

I am sad to hear that you are having such a struggle with your cancer. I don't know if I have any useful information but I wish to send you some hope My friend had cancerous lesions in her brain caused by her metastized ovarian cancer and radiation did eradicate the cancer in her brain. She did die a year or so later but it was not from the cancer in her brain so maybe you can get some solace from that. No matter how serious all this may sound to you it is still possible for you to heal. The books I have read have helped me stay positive and hopeful. Dr. Li "Eat To Beat Cancer" and Jane McLelland "How to Starve Cancer" are very encouraging. These authors can give you some hope. There are other good authors but those two are my favourite. If you have a juicer you could begin juicing beets, carrots, celery, apples. A daily drink of those fresh, organic foods could help you fight. Thank you for sharing your story and your obvious caring about others. I will keep you in my heart. Hugs Marlene

Thanks Marlene. Sorry it has taken me this long to reply to you and to thank you for your concern and well wishes. I’ve been consulting with a neurologist and my oncologist so the last few days have been busy and filled with worry. But I’m getting nearer to a treatment plan which is good.

Hi Maria, My husband had the gamma knife procedure. It was effective and the process was not difficult at all. I am praying for good results for you. Sending lots of hugs and prayers.

Audrey

Thank you so much Audrey. Sorry this reply is days late but my days have been a whirlwind of MRIs, consulting with neuros, my oncologist and radiation oncologist that sometimes, I don’t know where I am anymore. Hope I will soon have a good treatment plan that will work.

I'm a long timer with mbc (16 years) and while I have not had any mets to the brain, I have known several women who have and their experiences have made me alot less afraid of brain mets. One friend even went downhill skiing less than a week after gamma knife radiation treatments, and even went on the "expert" trails! When I attended the YMCA's exercise program for cancer patients, the Armstrong something, there was a woman in the group with primary brain cancer and she was in a clinical trial at the University of Chicago and work a head cap that periodically sent shocks into her brain......I have no idea how that trail turned out, but it is an example of the new treatments that are out there. I don't know anything about cancer treatment in the Phillipines....I hope you do well and will have confidence in your doctors.

viennagirl
viennagirl in reply to PJBinMI

Hi PJBinMI. I am so encouraged by the fact you have survived such a long time with mbc. I hope you live a lot longer but maybe you could share how you have done so well. Did you include diet and exercise and other types of alternate therapies. Anything you did could help us all live longer lives. Hugs Marlene

PJBinMI
PJBinMI in reply to viennagirl

I wish I had done something special that I could tell you about but my treatment has been quite standard. No special diet or exercises, just pure dumb luck! I do make sure to take my meds regularly and I let my onc know how I am feeling. I'm only on third line treatment and I really think I am lucky to have nice lazy easily controlled cancer cells. If I had known in 2004 that I'd still be here in 2020 I sure would have avoided alot of anxiety the first couple of years.

viennagirl
viennagirl in reply to PJBinMI

Thank you PJB. I think you must have a very strong immune system. Hugs Marlene

MyMiracle13
MyMiracle13 in reply to PJBinMI

So sorry for this late reply. I appreciate your thoughts and concern for me very much. I may be having SRS on my multiple brain Mets. And my oncologist put me on Exemestane for now and maybe add Affinitor after the radiation session is over.

Hello, dear MBC sister!

Please know that you are in my thoughts and prayers. May your MRI give the radiologist the precise information required to zap those lesions. I also pray that their removal will eradicate the neurological side effects you are experiencing. And thank you for providing the "heads up" to all of us regarding the tingling. God bless you and shine His healing light in your direction!

Always in your corner,

Linda XXOO

Hi Linda. Many thanks for your reply and for your thoughts and prayers. I need the prayers and positive thoughts to see me through this new development in my cancer journey. I hope that when all the facts are laid before me and my oncologist, that we will both find a way forward in my treatment.

All my positive thoughts and prayers are with you. God bless you

MyMiracle13
MyMiracle13 in reply to Beryl71

Thanks so much. I need all the positive thoughts and prayers right now.

Hi Maria

I’m thinking of you and wishing you all the very best with your next treatment. Cancer is so very cruel....

Sending you a virtual hug 🤗

Jo xx

Thank you Jo. I’m going through so much stress at the moment but your thoughts, concern and prayers are what keep me going.

I will pray for you and expect that there will be a good treatment to alleviate your symptoms! This crazy ugly disease has us all going nuts! I pray for more good research for the cure! God bless you, God is on your side!

MyMiracle13
MyMiracle13 in reply to Klamato

Thanks so much. I need the prayers to get through this. Hoping for a light at the end of the tunnel.

I am so sorry your fears were correct. You must be angry that they didn’t listen to you 😞. I am sending you strength both physical and emotional. I am here for you in any way I can be of service. I truly wish I was closer to offer you more support. I don’t know why they use CT scans when they don’t pick things up. I had progression to numerous bones in my body that the cat scan did not notice. Nor did it pick up my actual breast cancer. I will speaking to my oncologist about my scans.

MyMiracle13
MyMiracle13 in reply to Sarcie

Thank you so much. My spirits are lifted by the love and support I am receiving from you and everyone who has responded to my post. I pray for good results.

Hi MyMiracle,

I was originally diagnosed with Stage 0 DCIS in late 2016. I had two lumpectomies but margins were still too close so I opted for a unilateral mastectomy . I started taking tamoxifen as doctors said they were okay either way . I didn’t like side effects so stopped.

In early 2019 I was diagnosed with Her2+ MBC with mets to lungs bone and brain. Started on perjeta, herceprin , taxol and xgeva. Had stereotactic surgery for3 brain and changed to kadycla , Herceptin, xgeva . After 2 months stopped kadcyla because mri showed too many lesions to count as kadycla didn’t get through brain barrier for me .

Had whole brain radiation last October and switched to neratinib , herceptin , xeloda and xgeva. MRI last week shows zero brain lesions and lung and bone almost gone . Heard great things about tukysa so if neratinib stops working that’s next .

There are a lot of new promising drugs so stay positive 🙏🏻

MyMiracle13
MyMiracle13 in reply to Amf1983

Thank you so much for sharing this. I think I will be having SRS for my many lesions but will ask my radiation oncologist also about WBRT because a neurologist I consulted with thought it would be best. I am hormone receptor positive so those drugs you mentioned will not work for me. Having said that, I will be asking for a biopsy of any new lesions that can be biopsied because my receptor status may have changed considering the speed and growth of my metastasis. Thanks for letting me know how you are doing and please continue to give me updates❤️

Amf1983
Amf1983 in reply to MyMiracle13

Hi

I am also hormone receptor positive so maybe you can ask about those drugs. Please keep me posited at well ❤️

MyMiracle13
MyMiracle13 in reply to Amf1983

Oh thank you so much for this additional information. So were you diagnosed ER+/PR+ and Her2+ at your original diagnosis or did your hormone positive status mutate to Her2+ when your were diagnosed with Mets? Are you still both hormone+ and Her+ today? I’m sorry if I’m asking all these questions but I’m so scared right now and desperately seeking answers. Is Neratinib in pill form or IV infusion? That’s probably a new drug and may not yet be available here in the Philippines. Once again, many thanks.

Amf1983
Amf1983 in reply to MyMiracle13

There’s so much to learn and if you don’t constantly ask questions you’ll never know .So don’t apologize 😊

Yes it definitely mutated. My original diagnosis in September 2016 was DCIS stage zero and since it was non invasive it wasn’t tested for hormone receptors. In 2019 I was diagnosed and remain Mbc (ER+ PR- and Her2+) The neratinib is 6 pills every day .

I bought the book “starve cancer “ by Jane mclelland and follow her Facebook group that has had a lot of promising success stories (diet and supplements) I haven’t had a chance to read it yet as I just got it , There is a lot of information.

MyMiracle13
MyMiracle13 in reply to Amf1983

Thanks once again. I have to find out if one of the new lesions in the lungs can be biopsied to check for change in receptor status. You have been most helpful. I truly appreciate it.

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