Brain Mets Sisters
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Wleeky, having an MRI next Friday, so then We'll know. Trying not to freak out too much.
Did anyone have any symptoms b4 they were dx'd with their brain mets?
Was quite dizzy and lightheaded today, and head is still aching.
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Hi Lita,
I'm sorry to hear your cancer has mutated and progressed. The only symptom I had of brain mets was headaches in my temple, but as I've always had frequent headaches, I didn't think much of them. Much love to you today. I'm praying for the best possible outcome for you.
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lita so sorry to hear of your progression. I have kept up with you on the threads and you are one amazing lady! I had dizzy nausea left sided weakness with my brain mets. The n&v was nothing new to me since I have vertigo. When the left weakness came, I pretty much knew there something was wrong. I and just finishing my 2nd week of WBR with two more to go and seem to be tolerating so far. So glad you are having MRI and will know for sure about the brain mets. They told me I may have short term memory loss but I have been doing that since I just turned 65. I told my family it's not over until the fat lady sings and I cannot carry a note in a 5 gallon tub 😂
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Lita, as I said on the other boards, your news really hurts! Hoping for a dx that leads to a great plan.
My symptom before the dx of my one brain lesion (over my right eye) was a numb chin and Ct revealed swelling in my temple area. Had rads to reduce it 20%. The frustrating part has been that none of the MRIs I've had can detect what level it is on, skull, lining or fluid. But, my lack of worsening symptoms leads them to believe it's not lining or fluid- at least for now. I never had dizziness, but did have some vision issues.
Lita, my best wishes and prayers to you. Hugs!
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Lita, I am sorry you find yourself here too. My symptoms were from one tumour. It was on my dhural layer so my symptoms were from the brain swelling. These included increasing skull pressure, think of a sinus cold but all over the head. I also had morning nausea. The pressure caused me to have periods of confusion, an inability to speak or understand other people. This was not constant BUT became more frequent. Once dx, surgery removed most of the tumour and whole brain radiation has kept me stable. Grueling treatment but no lasting effects. My thoughts go with you and I hope you'll keep us posted.
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Now I feel bad that I didn’t call this to my dr's attention much sooner, but it only started to get really bad in the last 2 or 3 weeks...and heaven knows we all DON'T want to be hypochondriacs.
I'll just have to wait a week and a half and see what the MRI says.
Sigh...
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Lita, I took months to report my brain met symptoms. I just blamed the chemo I had and that it would get better after finishing treatment. I probably started having issues about 4 or 5 months before I was dx with the met. Don't feel bad. We definitely do our best not to chalk up everything to cancer BUT it takes experience for us to know what is cancer related and what is our own health issues. I am confident that I will know if a brain issue comes up but I have the experience.
You simply cannot know what you have not had before. I hope it is something simpler for you.
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Wleeky, are you getting rads every day? I've had to do that for my spine, 2 sessions of 2 wks, every day. Kinda tough, but I got tnru it.
I'm hoping I can do cyberknife radiation; less cognitive function loss, but it depends on how many lesions I have and how big they are. They generally won't do cyberknife if the brain mets are over 1 cm.
Just praying we caught it in time.
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I am getting rads every day for four weeks. RO wanted to lower the dose and spread over longer period less SE. I am finding it very tolerable so far. I agree with cyberknife as much more tolerable. Most of mine are very small with the one causing trouble being 3mm (0.118 in). RO and Mo were in complete agreement with WBR. I have a wonderful team who I love dearly. I am retired from Hospice and Palliative Care and have worked closely with both MO-RO-NP-nurses. So we have known each other for awhile. I am sending Good vibes your way for a good MRI report.
Just found out tonight a fourth great grandchild is due in April🎉🎉. Who would have thought I would live to see my great children😍😍but here I am living life to the fullest and my faith never wavers.
Happy Weekend!
Wanda
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I shared this with another mets group I belong to on FB and I thought you might like to read it.
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I was thinking about how I had to fight to get treated. It was not easy or straightforward at all. I wanted to share this with you to empower you to not just to accept the status quo in your care.
It was in gathering documents to send to a HER2 brain mets researcher that my leptomeningeal carcinomatosis (LM) was first suspected on review of my SRS planning scans. I had sent the files to my dad and he was like, "what is this?" My team never mentioned it to me. Definitely get copies of all your scan reports because the radiologist might notice things and it might not be mentioned to you.
I asked my neuro-oncologist about this mention of LM and she said that the tumor board reviewed, a group of esteemed oncology professionals and neurosurgeons, and they didn't agree. Guess who was wrong?
I started having facial numbness in my right cheek about five weeks later. I mentioned it to my neuro-onc and she said it wasn't what they were looking for, then she said it was either atypical healing or atypical LM in my scan but they wouldn't diagnose LM. I had a consult at UCLA, they would have started me on Tykerb/Xeloda or Kadcyla but I got no further in having a firm diagnosis. It seems with brain mets there is a lot of deferring and wait-and-see.
Finally my LM was diagnosed, it went untreated though the radiologist suspected it, from early September until the end of November. Did they offer me any treatment? No. This was after I had been asking about the Ommaya Reservoir (a port into my skull) for months and had shown them that it was working for other patients with HER2 LM.
Several days later I dropped my son off at Kindergarten and then left a voice message that I was going to the ER at my oncologist's office. I called a friend and asked if she could drive me over to the hospital. I passed every neuro assessment at the hospital. They had me admitted and still it was unclear whether they would give me the surgery. I told them, "I don't know what the bad thing is that you want to have happen but my body has had enough". I did have symptoms, facial numbness on the right, numb toes mostly on the right. I only found out I would have my port surgery by trying to order food and having the kitchen say I was on a surgical fast.
I was offered whole brain radiation (WBR) multiple times, even as I was in the hospital; I declined every time. The damage rads causes is not reversible. They say about rads that it is "well-tolerated" but what they mean is that it likely won't kill you right now and it might work to slow the cancer. I had to find someone who would treat just the affected area in my posterior fossa (low back of brain), writing to an RO over the holiday weekend after New Year 2017 begging for help. It was just through hearing my neuro-onc say that she had seen partial brain rads done for prostate brain mets (once? A handful of times?) that I even had an inkling that there might be another option to WBR. I cried when that RO wrote back to me that Sunday, said that she would see me the next day.
Even 6 months later two neuro-oncs hesitated in my case, they wanted to say that it was pseudoprogression when instead it really was tumor growing again. It was a HER2 brain mets researcher I have been in touch with in Chicago who I shared my brain image with and he said it looked like tumor. Even as I had symptoms again, they were dismissed.
Finally they relented in September and put me on my current therapy which is off-label use of Topotecan and Herceptin, plus Kadcyla and Avastin (both of the latter since stopped) -- a protocol I found on the Internet -- and finally I have been stable since December.
I am here because, well, in spite of my docs. I am here because I didn't give up. I am here and went through this hell so that maybe you too can find it in you to fight back.
It was Anne Loeser who said to me, "you aren't the first one to have your case mismanaged". Honestly they didn't mean to do so I believe, it is just that the Standards of Care say what they do and the docs are just technicians most of the time. You have a vested interest in your survival, they can't ever, no matter how hard they try.
And when it comes time you also have a right to decline treatments that are too depletive, are hurting you too much. You have a right to say what is an acceptable trade-off, and it might be that dying is preferable to prolonged agony.
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I thought of another example, late last October a lesion appeared in my left temporal lobe, that's the part of the brain associated with hearing (and other things). This was in my forebrain, outside of the confined area where the cancer had been previously. I believe that it was allowed to spread there when my LM was growing again but I had gone for almost five months with only IT Herceptin and we had twice reduced treatment frequency during that time to every three weeks. It was a new neuro-oncologist who I had reading my brain scans who mentioned that it was there even before my most recent LM was finally diagnosed prior to him joining the team.
While he pointed it out he had no new suggestions for treating it. I remembered that my RO team (there were two involved in my care) had said we could treat any lesions that showed up outside the area that had previously been treated. I emailed them and said let's kill this. A couple weeks later I had Cyberknife to that lesion arranged by me -- it was not offered to me. At my last brain scan a few weeks ago that spot and any treatment affect (highlighted area that can't be determined to be new cancer) was gone. Gone!
I used hyperbaric oxygen treatment just prior to getting brain rads this time -- to try to make rads effective against this cancer cell line that had resisted radiation treatment months earlier. It looked like it worked. I added that in myself as well, got no permission -- if it didn't work that was on me, but it looks like it did.
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Congratulations on your new addition to the family Wanda!
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Agness- that is quite a saga. You can certainly fight for what you want!
I have one tiny brain lesion over my right eye. (Had rads to reduce 20%). What I've learned is that MRIs are limited in detail in some parts of the brain. They are still unsure of what level (skull, lining, or fluid) my lesion is located. My RO is judging by my lack of worsening symptoms in the last 4 months that it is NOT LM. So, I'm hanging on to that.
Hope you continue to get the treatment you want and need.
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Agness, I have Kaiser. I'll have my work cut out for.me.
Notorius for mismanagement.
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I just want to talk about WBR for a moment. Some of us do NOT have the option to do Gamma Ray, which I would have preferred myself. Though I can understand that WBR is a more intensive treatment, there can be recovery and do not like people who have not had it to scare the heck out of others. I was one of those people who was scared to death of it before I had it because of the negative posts of people who did not want it and would rather die than have it on this thread. Again, I am all for localized treatment but this may not be an option and second opinions are not always available. In the time it would have taken me to be referred to another doc, I would have died. I also do not have the option to travel for treatment and I am already at one of the best cancer centres in Ontario.
I want to say my quality of life has improved immensely. I recovered from my treatment a year out and am no longer looking back. I don't plan to far into the future BUT this is not because I had WBR. This is strictly related to my Stage IV diagnosis.
We should not look on our survival stats as gospel, and I would say the same about the cognitive risks of WBR. There are some BUT for those of us who have had it, we should have a more balanced view and live our lives in spite. Excercise, good food choices, Namenda (Alzheimer's drug) can lower the cognitive risk of decline and should be explored more than just the horror stories.
I am not asking for people to stop talking about the risks, but some sensitivity to those of us who have had WBR or will have and not give horror stories as the reason you don't want it yourself. It is enough to say you prefer localized and fought for that. That is still inspiring and not scaring the bejesus out of people.
Not trying to say WBR is the optimum way but to respect the feelings of those of us who have had it before completely saying that qol is gone after it is done is all. And certainly not saying that death is preferable to life after WBR. This is almost as bad as the friend or family member who might say "My grandmother had cancer, she suffered, it was terrible and she died". We can all agree this is not helpful and neither is bashing WBR quite so harshly. This is not true of everyone and I feel fine. I may not live years ahead, but I refuse to second guess my treatment choices. We should just be more considerate of each other.
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Thank you, Mara. Both sides MUST be heard. I am indeed thrilled that you've had such a positive outcome. Of course, not everyone will end up like my friend, A.D.; but we have to make our decisions with our eyes wide open.
Heck, people who have chemo can have a really bad reaction to it, go into anaphylactic shock and die right there in the infusion clinic. There are risks to everything.
In these situations, one should defer to the "medical experts", but nevertheless, even an expert can't give you guarantees.
Ya rolls the dice, ya takes ya chances, as they say.
But reading your post has given me hope, and I thank you for that. We are all here to support each other.
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Well said, Mara. You have been my best guide through this confusing brain stuff!
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Glad to help
All treatment is risky but hearing how different people have done it is helpful. Agness has provided so much info over the years too. I definitely am interested in all the treatments we undergo. Keeping myself educated helps me too. Lita that is true about rolling the dice. Good to see you Kaption.
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Well said Mara! Making decisions about treatment is never easy and feeling like you have no choice is even worse. We all do whatever we need to do to continue living our lives. Much love to all of you.
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Anyone have any nose bleeds? I woke up in the middle of the night with a nose bleed out of no where. Haven't had a spontaneous nose bleed since I was in 2nd grade!!!
It's not that hot here...actually people complaining of humidity, so we know it's not dry air. No nose picking, etc., so it's not that either.
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I did not experience any nosebleeds because of brain mets symptom. I do however get a very dry nose for approximately a week after my Herceptin/Perjeta infusion. Are you on any other chemo than what is listed in your signature line?
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Mara, no, not yet. Taxol won't start until late next week.
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Yesterday was pretty bad. I started having the dizziness and eye spots while I was sitting down at my friend's memorial. I used to only get them really bad when I stood up from a sitting position. And I was so dizzy at home, too. All I wanted to do was sit there with my eyes closed.
No better this a.m. I emailed the MO to see if there's anything I can take besides advil or alleve.
My eyes are having difficulty focusing, too. I'm really freaking out.
Have to wait one more day for brain MRI. THEN I'll have to wait for it to be reviewed, then get the team in place, see a radiation neurologist, etc., etc. In the meantime, my chances of having a stroke from the increased intracranial pressure go up and up. It wasn't nearly this bad less than a wk ago.
I've finally filled out my POLST (physician's orders for life sustaining Tx) and got it notarized. Taking a copy with me everywhere. If I have a stroke, I don't want to live anymore.
Sorry that this is such a depressing post, but I'm scared now. I didn't even eat dinner last night. I couldn't. I was too upset and concerned.
Time to take a valium. DH is going to get the paper work in place for his Family Medical Leave. Looks like I'll soon need round-the-clock supervision if this keeps up.
Trying not to panic.
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Hugs Lita. Can you go to the ER? They can stat your scan. That's what I did - I never had time to schedule things got scary so quick. Went to the ER with headaches and vomiting. Intense H&V and come out with brain tumor diagnosis. Especially good is a big university hospital. Can't believe they would make you wait even a day with the side effects you are experiencing. But sending hugs from across the country.
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Lita, I know I can't right next to you but please know I am here in spirit holding your hand. It is definitely terrifying until you can get the info you need to deal with whether these are mets or something else.
If the pressure is to the point you cannot function, please visit a hospital to get it looked after. I don't honestly blame you about not coming back if you have a stroke, but there has to be a way to control the intracranial pressure or control the overwhelming panic. That will also excacerbate the issue. At least the hospital could make sure it is not your brain swelling and if it is treat appropriately which would make a difference.
I will not tell you this is easy but I am thinking of you, PM if need be and do NOT worry about depressing us. We understand and support you on all your threads, even the ones that don't apply to me.
The valium sounds about spot on to relax you and get some much needed rest.
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MO emailed back.
I can take up to 3,000 mgs/day of Tylenol for head pain; she doesn't want me to take advil or alleve in case surgery is an option. But I worry about Tylenol toxicity to liver...they had to take me off norco/tylenol last year cuz liver enzymes tripled. Now they're fine since I'm not on it anymore.
She also said we'll start radiation right away b4 going the taxol route.
Thanks for everyone's support 😥
Just trying to rest in the LaZBoy.
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Start small with Tylenol, you may not need as much as she is mentioning. Taking over a day or two should not be an issue, but I certainly understand your hesitance taking it. I certainly have never taken close to 3000 per day, even after my brain surgery.
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Off to my MRI in a matter of hours. Hopefully they have good air conditioning in there. It's supposed to be triple digits all weekend.
Not sure when I'll get results back...it's Labor Day Weekend, so I may have to wait FOUR days b4 I hear anything, You usually can't ask the imaging techs anything because they aren't qualified to read anything. They're just there to administer the test.
My MO is off today, too. Won't be back until Tuesday after the holiday.
Headache kept me up most of the night. Tylenol doesn't do SQUAT! Might as well be swallowing Tic Tacs.
I bit the bullet and took a few drops of CBD tincture (derived from Medical Marijuana, but it's non-psychoactive) under my tongue at about 2:30 am and restlessly drifted off at around maybe 3:30 am or so only to wake up again b4 9, so that's just a mere 5 hours and a few minutes. Not enough sleep when one is fighting active cancer. I'll try to take a nap after I come home, maybe pop a Benadryl for the drowsiness, but Benadryl doesn't really do that to me.
I only took my usual vitamins this morning. I'm not going to take the valium I have stashed away. I want my brain scan to be PURE. I usually do okay with scans...I've certainly had enough of them this past 16 months
(. So wish me luck, ladies.
On a positive note (if there is such a thing anymore), I won't have to start my Taxol for a while. They'll radiate or do surgery first. But on the other hand, I'm worried about these little demons getting bigger in my spine, pelvis, pancreas, hip, scapula, etc. I can't dwell on that, however. The brain is way more important. If the brain goes,...well, it's adios Josefina all around.
Lita
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Thinking of you Lita!
When you meet with your MO, you might want to ask for a referral to a neuro onc too. I feel like I really benefit from having a neuro onc on my team. He takes care of the brain and it's scans and my MO takes care of the rest of me.
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With you, Lita.
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Goodie, that's on my list of things to do.
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