Brain Mets Sisters
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Tricia,, to echo what LFF said above, I only had to have one spot treated so far and that was not unexpected because there was still some tumour wrapped around a blood vessel that they could not remove. So far the rest of the brain and body have been clear, body since 2015 and brain since 2018.
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LFF,
How are you feeling?
Got my first COVID shot today. Pfizer.
Hugs, Susan
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hi susan,
I’m doing ok. Have another big week this week: CT scan tomorrow, treatment Wednesday, and echocardiogram Thursday. Then, I hope I’m done gor a bit.Congrats on the Covid shot.
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LFF - I'm praying that you will be rewarded with a period of progression-free calm after all your incredibly busy cancer weeks!!! I'm rooting for you! I don't know how you make it all work with a houseful of kids... Theresa
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Thanks Theresa.
found out today that my CT from yesterday showed a lymph node by my heart snd spine that had grown. New plan is to do radiation treatment to it . Will have pET scan ASAP and consult radiologists and IR to formulate plan. This one doesn’t look to be a contender for SRT but we will wait the pET scan results before we decide. Most likely I will have radiation treatment every day (5 days/week) for 3-4 weeks.Good news was it’s only one spot everything else looks great. I just have to wack another mole.
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LFF,
I've got a bunch of enlarged lymph nodes, retroperitoneal and left periaortic. I believe, and this is refuted by Hope, that your lymph nodes become enlarged because they are trying to fight cancer or some other malady. Years ago, I let them do sentinel node biopsies twice and I regret that decision. Now, most of my cancer is on my right side and I can't use my right arm for blood draws or blood pressure measurements. Also, at initial diagnosis I had some enlarged lymph nodes in the middle of my chest, didn't do anything to them, and they are normal-sized now. Lastly, a woman in my metastatic group lived for over 20 years. She refused to remove any of her lymph nodes.
Lymph nodes are a part of your lymphatic system that support immunity and carry away damaged cells and bacteria. It is a circulatory system like blood so you don't want to block the circulatory paths.
Just my crazy-ass beliefs but wanted to share them with you, my dear.
Hugs, Susan
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thsnks Susan.
I agree with what you have said. this one is a big worry done as it has grown so fast that the middle actually died as it expanded outward. If it keeps expanding or worse spreads out of the lymph node, it would hit my spinal column snd heart. Not in a great position,
mom still weighing my options but your perspective helps.0 -
LFF – I'm so sorry that your CT showed that a lymph node has grown and that it is near your heart and spine. I have mediastinal nodes that are cancerous. I had a couple of them treated with proton radiation therapy in 2017 which did work. When I spoke with the Stanford radiologist at the time (Stanford does not have proton radiation), she was worried about potential damage to the heart if she treated the nodes with conventional radiation. I spoke to her recently and she said that the machines and radiation planning have improved. So, they are treating more mediastinal nodes now. I would ask lots of questions about the risks to your heart, lungs and lymphatic system. Esophagitis could also be an issue, but that is usually temporary. They also are doing more radiation of lung mets now than they did 5 years ago. Radiation has controlled my cancer well in the past and I believe in the whack a mole approach. Susan brings up really good points about the lymphatic system. I wish you the best with your decision and treatment! On the very positive side, I don't believe that they would be offering you radiation for the lymph node unless your cancer was considered well-controlled in other areas. That's great news! Hugs! Theresa
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LFF,
Your lymph node situation, position and rapid enlargement, do sound like removal would be a good idea if it can be done safely. How do they see that the middle of your lymph node has died? I don't think my scans are detailed enough to detect something like that. My largest lymph node is 1.6 x1.9 cm. Hope said she isn't worried about them. We are more focused on the new liver met.
I agree with Theresa. Sounds like your other spots are under control. Hope you are feeling ok and that the radiation will go well.
Hugs, Susan
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SusaninSF, I think your reflections on the lymphatic system are interesting. I also had misgivings about lymph node removal from the beginning, but in the end I allowed lymph nodes to be removed in hopes of getting rid of this beast. I feel that I am much worse off for it now that I am metastatic.
For example, I recently developed a massive cellulitis infection on my right side. It was good that my chemo was working, but the right side of my body has difficult time clearing out all the cellular waste and dead cancer cells. During that infection I had a lump the size of an egg in my collarbone area, which was putting abnormal pressure on several blood and lymphatic vessels. That obstruction and inflammation, coupled with the fact that my bloodwork is already wonky due to a heavy burden of metastatic disease, led to the formation of two blood clots, one of which was a DVT and landed me in the ER and the hospital. Meanwhile my left side, which is never had any surgery, radiation, lymph node removal, or anything, fares much better and has none of these problems.
True, it may not be all because of the missing lymph nodes, but even my doctors seem to think that is contributing to these problems. I find it extremely frustrating that I had life-threatening things happened to me because of that. I personally think modern medicine should find a way to move on from lymph node removal altogether, whether through better imaging or other means. In the meantime I'm afraid we are stuck with this brutal practice.
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susan- you have a new liver node? The apologize for missing this. You doing ok?
Thank you for your wise words. I will take them with me as I discuss radiation with my team. PEt scan confirmed it’s just the one node.
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thanks Theresa. I will also take your experience and sage advise with me when I meet with my team. Good news is the the PET confirmed it’s only the one lymph node. I have a few other issues to deal with, but those can wait.
I do appreciate your support.
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Hi all
I have been reading this thread for a while as I have had one small possible lession in my frontal lobe. It had not shown growth over several mri s. So even I stopped worrying. Well my tumor markers inched up and I complained of mild headaches, so new mris show 15 new lession some much larger. Next week I consult with the Gamma knife neurologist and he is open to treating all 15 after seeing the scan. I feel hopefull but super nervous. I am amazed by all the women in this group. Many of you have had gamma knife any wisdom???
Thank you
Mary
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3-16-11, great that your neuro onc is willing to treat 15 lesions with gamma. I found it pretty easy, I’ve had 5 over the years. My advice would be more specific depending on whether you’ll have the mesh mask or the metal frame, so let us know which one, both have difficulties but I prefer the mesh.
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3-16-2011 I'm so sorry that you are dealing with more brain mets. I had 6 brain mets treated with Cyberknife in April 2020 with I believe 6 days of treatment. My Cybernkife doc used the mesh screen shaped to my face. It was psychologically difficult, but physically the treatment was not hard. My Cyberknife doc said that the treatment is 90-95% effective in breast cancer. Hugs and Best wishes for successful treatment!!! Theresa
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I found the making of the mesh mask the most unpleasant. Hot and almost smothering feeling. I have had all radiation treatments to my head in a mesh mask as well as MRI as well when planning treatments.
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Thanks illimae, Theresa and Mara,
It helps to see others have gotten through this. I think I have had a mesh mask for skull radiation and it took some work but I tolerated it. I think the neuro has a different system. I meet with him a week from Wednesday to get it figured out. I do hate the waiting.
So greatfull for your responses. Thank you.
Mary
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LFF,
Great news that it's just one lymph node. When do you start radiation?
You didn't miss anything. I was keeping quiet about my liver met until I completed a biopsy. Looks like it is the same type of tumor I have everywhere else so that is a relief. Always an outside chance that it is liver cancer. Hoping to have it radiated but still waiting to hear back about the treatment plan.
Started Verzenio and Exemestane. Haven't been able to keep the diarrhea under control so we are trying a lower dosage. Apparently, Verzenio crosses the BBB so hopefully it will keep my brain mets stable. Though at this point, I'm more worried about my lung and liver. Had 2 liters of pleural effusion! that was causing a lot of shoulder nerve pain. Had most of it siphoned off. If it keeps coming back, will have to install a Pleurx device so I can drain the lung myself.
Hugs, Susan
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susan I am sorry to hear of more things you have to deal with. You have an amazing spirit and attitude. Wishing you the best and a good response to the new treatments.
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recently found two bald spots frim my recent radiation treatments. Has anyone had this happen? Did your hair grow back or am I going to be rocking a comb over now?
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I hate to be the bearer of possibly bad news but when I got radiation both whole brain and local treatment, I rock a male pattern baldness, hair came back on the sides at the back, never came back on top. I am 5 years almost from WBR. When I got local treatment for a couple of mets at original surgical site, that hair left as well. Both permanent.
In short, if it grows back, may be slow to come back, if not, a combover or wig topper might be in order. I can honestly say, wigs are the best thing that happened to me, my own hair was awful growing in after chemo and radiation.
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Lff,
I likewise had local hair loss with local radiation treatment to my skull. It was slow to grow back about 6to8 months, but then it was back to the same unruly hair. Good luck with the comb over efforts. I find myself, now bald due to abraxane, buying hats on thredsup my favorite second hand website.
Mary
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Good Morning Ladies,
Happy Sunday :-) Well, I am back again inquiring about symptoms for brain metastases. I am ER+, HER2+ with mets to bones and liver and have been stable for 4.5 years. Brain mets are my biggest fear as my brain is the only gift I got on birth - the pretty genes went to my sisters LOL. Also, I know that HER2+ cancers are more likely to spread to the brain. I am a teacher and avid reader, thus my anxiety is off the charts.
Anyway, I pop in here whenever I have concerns about brain mets and I am so appreciative of the support and information I have received from everyone in the past. So for the past week or 10 days I have had a weird headache; not so much a headache but more like pressure. It almost feels like there is something on top of my head. I usually keep my reading glasses on my head while I am working during the day, but I tried to stop doing that as I thought that might be causing the problem. I thought it might be too much screen time, but I have been on-screen for much of the day for more than a year now (work from home during pandemic).
The second thing is that I have a weird ringing (sort of) in my ears. I noticed this within the past few days. Of course, I am super vigilant right now, so I think "everything" is "something." I emailed my oncologist late last week and I am going for an MRI this Thursday.
I've been very lucky for the past 4.5 years to have been symptom free while continuing H+P every three weeks. I am not really scared as I know there are other lines of treatment and one new treatment that does pass the blood-brain barrier. I guess I'm just looking to hear from those of us who do have brain mets as to what symptoms you experienced (if any) when brain mets were discovered. I read every post in this thread last night so I know there is a variety of symptoms.
Any info would be appreciated. Also, thank you all for your prior responses to my queries. Aside from my medical team, this is my leading source of information and inspiration.
Be well everyone and thank you,
Nancy
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Nowaldron, I didn’t experience those symptoms and my headache that lead to a brain mets diagnosis was actually unrelated but you’re right to get the MRI. I hope they find nothing but I can say, speaking for myself only, because of early detection and successful treatment, brain mets have no had much of an impact on daily life. It certainly hasn’t turned out to be nearly as scary as I once thought. Best of luck to you.
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Nowaldron
So sorry for your worries. I was just recently dx with brain mets. But I have had skull mets for four plus years. Some of the symptoms you share, headache and ringing in the ears I have had since skull mets. I do think they attributed the ringing to medication.
My skull mets were always quickly treated with local radiation.
Best of luck to you
Mary
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I apparently had BC cells in my brain from the beginning but were not found until a 10 cm tumour grew the next year. My symptoms did involve pressure, not pain, morning nausea and some some seizures. The pressure and seizures from my brain being swollen. Had my family not called an ambulance while I was still out of it, ER probably would have sent me home again as about a week before, I was in ER but waited so long, I was back to normal. I had a CT of my head and the large tumour was found, I was immediately given high doses of steroids and moved to another hospital as an inpatient in order to get all the scans i needed and for doctors to make a surgical plan first. I would have preferred to wait at home but it was faster to get scans as an inpatient.
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Nancy,
I didn't have any symptoms despite living with over a dozen brain tumors. Glad you are getting a brain MRI. That was how I discovered my brain mets. They must have been there for awhile.
I hope you can find peace and lessen your fear of brain mets. As you can see from the experiences here, radiation has a high success rate as does surgery. There are many treatments that cross the BBB and since you are ER+ and HER2+ and are still on your first-line treatment, you have many treatment options.
I'm in a group of young, metastatic BC women and I think only one woman many years ago has died of brain mets though many have/had brain mets. From what I've seen, most people have died from liver mets.
Hugs, Susan
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I remember reading your quote about more people dying of other mets in other organs than just the brain. Made me feel better when I was newer at dealing with being dx'd stage IV and just all of the treatment I had to have.
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Hi illimae,
I always appreciate your advice as we have the same type of cancer HER2+, ER+, PR-. I am going for the MRI tomorrow and am anxious, but not totally freaking out. I still have low grade headache, slight nausea - more queasy, than nauseous - and the weird noise "inside" my head. i just hope that I get the results of the MRI before the weekend.
Thanks for helping to settle me down a bit!
Nancy
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Hi SusaninSF,
Thanks for your well wished. I've had my brain done three times in the past 3.5 years at my request. This time is a bit different, however, as I am having weird symptoms. I am fortunate to still be on first-line treatment. Also, I read that there is a new drug that does pass the blood-brain barrier. Let's hope I don't need it!
Appreciate your response,
Nancy
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