Brain Mets Sisters
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Thinking of you LFF!!
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Hoping for the best LFF!
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it V was a great day. Neck down CT came back basically NED.
Brain ZmRI showed no new spots ( first time in forever) and some of the old ones had shrunk. One area previously suspicious for metastatic disease not seen on scan. It’s working. My team seemed surprised by the response. It was more than stable.
First good news in a long time. Worth the troubles of travel and SE for these results.
Thank you for being there with me.
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Congrats! Leftfoot 🎉
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Wonderful news, LFF!!!
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Hello!
It has been a while since I’ve posted anything, due to Shellys change in therapy, radiation, side effects, and all that gross stuff. From what I’ve been reading and forgive me for not being personal, it sounds like some of you have had some things to celebrate. If not celebration, Tears! This past month has been quite a roller coaster for Shelly, one good result was her spinal MRI. It came back with absolutely no LM. However her oncologist ordered a reclassification of her cancer, biopsy and all. She came back <10% E +\P- her2- basically triple negative. Not sure what that really means other than we now know why she showed zero response to the last two treatments.
Shelley has been handling all this very well. And she’s glad that she put her self through all those tests. She has a scan coming up on March 4 for the radiation therapy so we’re still waiting. She starts second round of halaven tomorrow.
We pray for all of you daily and I’m glad to see some of our prayers answered.
Hope you all have a great Super Bowl Sunday!
Go Chiefs!
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Scott, best of luck with Shellys updated treatments and that they yield stability going forward. Sending positive thoughts your way.
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thinking of you Scott and Dhelley.
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illimae - hang in there. I'm glad you feel good about your choice. Heal well.
leftfootforward - I so get the scanxiety on thos one! I look forward to hearing about it.
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Hi Sisters. I was diagnosed on January 23 with mets to the brain. My first visit to the actual oncologist is on February 10.
Wow, what a shock. I thought that I defeated this beast in 2004. My tests have been clear for many years.
Around 6 months ago, I suddenly started having double vision. I couldn't read street signs anymore. More recently, I ceased being able to read the signs in the supermarket. I thought it had happened quickly, but put it down to my aging eyes needing new glasses. I mentioned it to my family physician. She ordered an MRI.
There were other signs that something was wrong. I have been going through a lot of stress because my spouse has brain damage from multiple brain hemmorhages. We have no family. I put everything down to stress and pressed on.
When an MRI for the blurred/double vision came back on the 23rd, I just about cracked. I don't have time for this.
Reading the possible indicators of trouble, I feel fortunate that my indicator was with my vision... for now. Both optic nerves are affected, according to the MRI
My original breast tumors were ER+ PR+ and HER2 about 50/50, just barely negative. I had surgery, chemotherapy and radiation.
Upcoming: Feb 10 - Oncology. Wish me luck. I am freaking terrified.
--Pam
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Pam Smith, I certainly empathize the terror you are feeling with this. I experienced the same fear when I started having symptoms including head pressure, seizures and confusion. When you are first told it is very scary.
I do want to let you know, there are better and better treatments that can and will help. Hopefully they have given steroids to minimize your symptoms until they decide on a treatment plan for you.
I had whole brain radiation after brain surgery to remove the 10 cm tumour. The surgery was easy, the radiation was tiring but I did recover and did not lose any of my cognitive abilities. 2 years after, I had some localized radiation to mop up the original surgical site. No side effects then.
I am now about 5 years from original breast cancer dx and 4 years or so from my brain met being found. I am now considered stable or NED everywhere.
There is hope to be had but please get social work and professional supports from whoever you see. That will help. Time will ease some of the most intense fear you are feeling. Take a friend or someone with you if you can to the appointments as a lot of information will come your way. Do not look up survival stats or even google a lot about it yet. A good website is listed below. Lots of good information there as well as support here. Feel free to PM me if questions come up. Hugs to you, I can totally empathize with what you are going through with it being fresh. With time and a plan, some of that will ease up. Listen to meditations at night so you don't spend the night wide awake for rest, even if it is just rain. It helps.
BrainMetsBC.org
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PamClark ...bless your heart! When you have a plan of action, ask if they have a nurse navigator for you. You can just call her anytime to find out anything you want and it really makes life easier. ((Hugs)) for you and keep us posted as you will find friends and good info here.
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Pam, it's a trip. You are not alone. It helps me to visualize all my people, in real life and online, walking with me. And for me, then being surrounded by guides and angels. It's hard when you feel alone. My mom is zero support and my husband goes in and out. I'm sorry to hear about your husband. Sending you both Healing Prayers.
Mara, thanks for the encouragement. I'm recovering from WBR and decadron, and have a follow up consult tomorrow. It's a lot. Encouragement is so so helpful.
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You are welcome. The biggest thing really is fatigue most of the time. It can take a long time but once you feel better, it happens fairly quickly. Get as much exercise and protein you can and that helps a lot too.
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Pam,
I found my metastases the same way, because of a distortion in vision. Turned out I had eye, brain, bone and lung mets. It was a very scary time since my prior diagnosis was Stage 0. Eight years before my mets were discovered. I thought it was all behind me because they had told me that I had almost no risk of becoming Stage IV.
Well, almost six year later, I've had WBR, Gamma knife, Cyberknife and all of the chemical treatments you see in my profile. I live a pretty normal, active lifestyle.
Glad you have found us here. The women are amazing! Supportive and knowledgeable. We're here for you!
Hugs, Susan
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Susan,
Wow. Actually, I am expecting them to find all kinds of mets. I was stage 2b, grade 3. I had A/C chemo, I refused Taxol because the other two almost killed me. I had surgery and radiation also, and felt fine for 15 years. Now this.
There are other symptoms that are worrying me, and make me think I am done for, like feeling ice water in my veins a lot. Chemo made me sooo sick in 2004, so I am worried....
I am inspired by your success. But I am terrified. Monday will be Day One. I will check in here later that day, and share what tests are in store, and what the oncologist tells me.
This group helped me get through it, all those years ago. I'm glad it's still here, with us all helping each other.
Hugs, Everyone.
_Pam
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pan- we are here for you. Treatments have come a long way even over the past 5 years. I hope they find something that works for you.
Best wishes wil be thinking of you on Monday.
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Pam, I am also in your corner. As LFF said, we are definitely in your corner and will support you. Good luck Monday.
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Hi Everyone,
Happy Monday! First off, Pam good luck today. I will be thinking of you.
I have posted about this before, but brain mets are my biggest fear. I have been stage IV with extensive mets for four years now (yay me!), but stable and with no recurrence and very little disruption to my daily life. As mentioned brain mets terrify me as I am a college professor and if my brain is affected, I worry that I will lose that. My work is my life these days and I know that it would be difficult to give it up.
Anyway, here is my question: I have been dizzy for the past two days. Yesterday, I just attributed it to getting up too fast in the morning. Today, seems a little worse as I had to sit down after letting my dog out and feeding my other critters. Even sitting here writing this I feel a little weird.
Has anyone with brain mets experienced dizziness/vertigo before the mets were diagnosed? I also feel a bit shaky and unbalanced, though my balance has never been great since being diagnosed and having chemo.
Thanks - my onc always says if I have lingering symptoms (2 weeks or so), it could mean something is wrong. Oh well, I would appreciate any insights.
Thanks and have a great day.
Nancy
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nowaldron- I was never dizzy. I hope it’s just you hit up too fast and your body hadn’t adjusted yet. Try eating a little something, sitting up, and moving slowly. There are a lot of viruses going around as wellvtgg HC st cause vertigo etc. I wouldn’t worry just yet. If you get a headache tgg HC st doesn’t go away with say Advil or Tylenol, Becom more unstable etc you might want to call your doctor just in case. Hydration can also be a problem.
I hope you feel better soon. I know what it feels like to question all the little things. They usually end up being little things.
Take care of yourself.
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Good luck today Pam!
nowaldron, like LFF, no dizziness for me. My brain met was discovered after it caused a seizure.
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I also did not have dizziness. I felt incredible head pressure like my eyes would pop out, morning nausea, and seizures due to brain swelling. I also could not always function, read or talk. That all has gone away for me.
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I'm sitting on the couch today and slooowly doing better. I finished WBR on Jan 15. The hardest thing has actually been the dexamethasone. I didn't realize- because no one told me - that it affects blood sugar to the point of temporary diabetes, and cortisol to the point of adrenal insufficiency. So I'm dealing with that and waiting for my MRI to know next steps.
I did feel some dizziness. Visual disturbances, nerve issues, trouble walking, and headaches, plus what I learned from research is called palsatile tinnitus.
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I did have some dizziness when I finished, tinnitus as well. The tinnitus has massively improved. No walking issues, nerve issues except those after my craniotomy, not from WBR and no headaches for me. Just extreme fatigue and depression for a while until I started recovering. My appetite was shot at the time as well. Your symptoms will improve and soon. I also agree, dexamethosone is hard to deal with. I went up to 250 lbs while I was on it thanks to the water weight and voracious appetite for junk when my appetite returned. Was glad when I could start walking again to lose that weight.
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I also had and still have the pressure, Mara, but it is getting better. For me it's my eyes and my ears. I get a wooshwooshwoosh in my ears. Lasts about 7 minutes, makes me cry. At this point I can't wait for my MRI so I can know what is next and what will just get better.
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I remember the wooshwooshwoosh as well. That will eventually go away. I don't get that at all now.
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Thanks Mara. Did it go away after radiation, decadron, or radiation boosts/gamma knife? It is getting better but so slowly. Feel discouraged today.
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Selkie, it went away after all of the decadron was out of my system. It did take sometime for it to go away completely after the WBR but it did improve day by day. The thing with the WBR is it can feel like you are not improving for a long time as the brain still has radiation active for months after treatment. Then you start feeling better and when that starts to happen, recovery can come quickly. My WBR was in Sept of 2016. I felt really shitty, depressed, exhausted and with all the weird little brain things. These were things like tooth sensitivity due to the nerves, not the teeth, the whooshing in ears, tinnitus etc. By about Nov 2016, I finally started to feel a little less exhausted, started marching in place at home. That started my recovery. I got my appetite back and started walking outside everyday for an hour. It helped a lot and I felt a lot more normal. If you are able and not already doing it, I do recommend to walk if you can. Outdoors is best but if you cannot, a treadmill is helpful. If not walking, a stationary bike or treadmill in the home helps. All of that helps your mood, fatigue etc. Those endorphins really help minimize the side effects. By the time I had local treatment in 2018 for a couple of new mets in my original location, those treatments did not give me any problems. Today, I am back to large amounts of walking after looking after my mother who died of lung cancer last year.
The short answer is yes it will get better and when it starts, recovery happens quickly.
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I don't know what to feel or how to react.
More tests coming, as expected. Spinal MRI with contrast, spinal tap, full torso scans.
The neuro-oncologist is not in agreement with the MRI doctor. I had a full neuro exam on Monday and "passed" ?!?
She doesn't know why my vision is deteriorating so rapidly. But she seems to be thinking that the brain MRI results may not be mets?!?!
I am so overwhelmed. The next MRI is Jan 26 but I can't get to the hospital for 5:00 a.m. No vehicle, no driver, no family. I have to call tomorrow and reschedule it.
Do I dare hope? I was stage 2b, grade 3, ER/PR + , Her2 -, two types of cancer, 3.5 and 2.5 main tumors.
How am I a) supposed to feel, and b) live in anticipation -again!- for two more weeks?
-Pam
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Pam, two weeks is a long time to wait. Sometimes doctors are not in agreement with MRI docs and this leaves us in limbo. It is hard to deal with when you are having symptoms of something. Glad you are calling to reschedule. They are usually pretty good at making changes as I am the same.
As far as how to feel, I would feel encouraged the neuro oncologist doesn't think it is caused by mets so that can be hopeful. Waiting is hard though. My best advice is to talk to friends and/or famiily. Failing that, keep talking to us here or a social worker. That saying hope for the best and prepare for the worst applies.
I am hoping that these are not mets and that you find out what is going soon so you can get out of limbo.
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