come to the cancer clinic with us 🩺 | oncologist appointment for BRAF V600E inhibitors vlog
ฝัง
- เผยแพร่เมื่อ 15 ต.ค. 2024
- I had an appointment with a chemo oncologist at the cancer clinic today to discuss the BRAFV600E inhibitor medication. I thought I'd vlog today instead of a sit down update video 😊 A very strange appointment... but we're glad we won't have it again any time soon!
My brain tumour was a grade II diffuse glioma with BRAF mutation - this is a specific as they can be with me unfortunately . It's not the xanthoastrocytoma that the doctor referred to it as throughout the appointment.
I will be sharing my brain tumour Facebook group soon 😊💗
If you're also going through this right now I'm here for you ❤️ If you want to chat please feel free message me on instagram @diaryofeireann
SUBSCRIBE:
☆ Subscribe to my channel: shorturl.at/nqSU3
COME SAY HI:
☆ Instagram: / diaryofeireann
☆ TikTok: www.tiktok.com...
__________________________________________________________________________
Never stop asking questions. Always advocate for yourself. Please, if you can, get a second and third opinion.
Best wishes!
Thank you 😊
@@diaryofeireann 💯% agree, he may have been nice, but sounded as he was ill prepared for your visit. As this is your life depending on these doctors, don’t let them try to intimidate you into not asking your questions and if you find they do, my only question would be “Do I need to get a different doctor, one who has answers?”. They are the cancer oncologists, the professionals, they should be prepared to answer whatever questions you have!
Agree, please keep standing up for yourself. Get as much information as possible. I was diagnosed with a brain tumor last October. The first neurosurgeon said to operate right away. Better sooner than later, it could just get worse anf he scared me and my brother who kept me company. We decided to get a second opinion and saw a neurosurgeon who is known to be the best in this field. He said he wouldn't do the operation now and we should monitor it with frequent MRI's. Right now he would do more damage and its right at the brain stem which is pretty tricky. But he assured me even if the tumor gets much bigger he could still do operation. First I didn't know if he was just confident or arrogant but I trusted him and I decided to wait. I wish you all the strength in the world. You're very brave and strong and you're in my thoughts ❤b
Yes, I agree to ask all the questions as necessary. Unfortunately, some doctors may label you as having anxiety in their chart. Then other doctors see those notes and if falls into a circle of doctors thinking you have anxiety disorder and symptoms may contribute to those conditions. I've had that happen to me before, and I don't suffer from anxiety at all! I'm just making sure I'm understanding everything before I take x meds or x procedures.
Stand up for yourself please ❤get another opinion and an other one sending you love 💕
I'm hoping this video reaches a friend or family member of the greatest neurologist on earth and you get connected to someone who really knows what they're doing ❤.
Australian Dr Charlie Teo
Houston Methodist!!
Pat did they finally let this poor girl know if it’s benign or malignant?
I am a neuroscientist, how can I help?
In all honesty though, I do not deal with cancer very much. Sure, as I doctor I do. But as a scientist I am specialised in pain and functional stuff (BCI). What would be interesting for me to know though is her pain management. Did she mention that she was put on opioid medication this early on? Sure, for surgery. But if the cancer pain gets worse she would definitely talk to a pain specialist.
So yeah, I could be helpful in that regard. I practice in Germany though.
As a person with a chronic illness I find that the best way to get answers out of doctors is asking "if I were your family member sitting right in front of you what would your personal opinion be?"
I totally agree!😊
Yes! If it is an older male doctor I ask how would they advise their daughter? If it is a female doctor, I ask how would they advise their sister?
Just for information: BRAF is "B serine/threonine kinase of Rapidly Accelerated Fibrosarcoma". It is 766 amino acid long protein/enzyme. Your mutation is happening at amino acid 600 in which it switched the normal Valine Amino acid to Glutamate amino acid. This is a big switch because valine is short and does not have a charge, while Glutamate is longer and has a negative charge, making the enzyme unable to add phosphate to other protein in your glial cells leading to uncontrolled proliferation of these cells
It’s better they don’t tell you how long they think you are going to live. I asked mine and she didn’t tell me, a year later she told me at the time she would had given me a couple of months and here I am almost 2 years! ❤ good luck
I agree no one knows how long we all have no matter what diagnosis we get! Watch Joel osteen and his mom’s story on her terminal liver cancer diagnosis at 40 something and now she’s 90!
I agree with this. A doctor should never tell you how long you have to live because then that solidifies the finite for you. You have much more control over your fate than you realize. Just live one day at a time. That's what should be concentrated on.
That’s true because even doctors with all the schooling can’t predict time and life spans only god knows how long we have and I would rather them not guess and give false hope
Be strong! ❤❤we know its very hard for you and your family
Get a 2. Or 3. Opinion
No matter what happens, EVERYTHING IS GOING TO BE OK-----NO MATTER WHAT HAPPENS!!!
As the sister of a sibling who literally fell through the cracks of the Canadian medical system (my brother was also diagnosed with a rare and very aggressive cancer) my best advice is to get another opinion outside of Canada as soon as possible.
I'm sorry you and your family had to go through that!:( I agree as well! I know a fair amount of people who have gone to get surgeries in the US. They weren't as serious procedures, but the wait times were insane for them if they were to, try, to get them in Canada.
To be fair she has gotten very timely care in Canada which is not the case for many people. Medicine is not an exact science and when you have rare pathologies there aren’t always answers or treatments.
I would try to get into Univ of Michigan in Ann Arbor which would be under an hour drive for them!
Yes, I so agree!
What about the Cleveland Clinic? That’s not too far either and they have an excellent reputation.
Good luck. Strong people like you come out on top
Love your accent, Éireann. Hang in there, and remember: Perseverance Furthers!
So my 23 year old niece was misdiagnosed at Sunnybrook Hospital in Toronto: she had angiosarcoma and they said a “ benign adenoma”. Rare cancers are very hard to diagnose. Tragically for us angiosarcoma is pretty much the most aggressive cancer on earth. She was also misdiagnosed in Nice France where she went for her final year of university. She had the most wonderful time and fell in love with an amazing guy. When her breathing became laboured we decided to get her home to 🇨🇦. A lovely thoracic oncologist in France with 40 years experience told us he saw “ no evidence of cancer” in her lung biopsy so we were just beyond relieved of course. Then Sunnybrook did another pathology exam in liver and they figured out it was angiosarcoma. I think a big positive to take away with your experience today ( although holy 💩 Iget how stressful and frustrating) is that he DID keep saying that low grade one. Because we have found out through joining angiosarcoma groups that many people are misdiagnosed. There was no biopsy our first time ( MRI’s and tests only) and the dr I’m France obviously missed getting a good sample. Setting that aside we have discovered that whatever weird, rare, mix of certain cells they can grade the “ aggression factor” ( if that makes sense). I think with lower grade cells showing up and their belief in the pleomorphic it is showing slow growth. That’s the best case scenario with cancer! And we were told angiosarcoma pts maybe can live a year. Some only 3 months at dx . We literally have met so many pts and now friends if people living 25 years and one 40 years. Try not ( although SO hard!!) to put that expiry date stuff on yourself. There are cutting edge treatments ( for eg LMD ) that have just become available in the last few months. That mutation identification is a plus too. I would also look up “ Count Me In “ initiative which was started by Dr. Corrie Painter who was dx with angiosarcoma and told to get her affairs in order. She was 32 at time. 12 years later she is working high up on cancer research. It’s a $10 kit that is free and available to Canada and US pts . It creates a “ data bank “ because rare tumours tend to get “ siloed” on a dusty shelf. There ARE more pts out there with your same tumour and health professionals do NOT try to locate them and their txs. Thanks for taking us on your visit and I think their lack of urgency is a positive in a way? ❤❤❤
This is really great information and so helpful!
God bless you for providing this valuable, specific, and very encouraging information for Eirann and other patients!❤️❤️❤️
Are you able to come to the states at all? I work at the Cleveland Clinic in Ohio in neurosurgery and we have the BEST department. We deal with really difficult, rare cases and get visitors from all over the world. #2 hospital in the whole world!
Yea it's great of you have millions of dollars to piss away
@@erikhendrickson59 Rare cancers can be treated at teaching hospitals for no cost. All hospitals have charity programs if you can’t afford to pay. I’ve worked in healthcare my entire career and it’s not a cut throat “gimme millions or hit the bricks” situation.
The oncologist should never have said he felt like he was being interrogated, that is very unprofessional of him considering the situation you are in. I'm only just making my way through your videos, but I'm sending you all the best of heartfelt wishes.
God bless you, I will be praying for you
You've been sooooo brave & patient with the abysmal medical care you're experiencing.
The doctor sounds arrogant and completely detatched emotionally.
I believe in miracles. 🙏
I am blown away at your strength. I mean, to go this long, without definitive answers has to be agony. And how can a doc say, "try not to think about it". This is life. But OMG, you and Devin are precious, God is our ultimate healer, and maybe it's HIS plan for you to be the FIRST person to be cured. God rules. Will pray for you every day.
Wow, to go for this long without treatment! ... Or have you been started on chemo, any Radiation??
@@akitajapan1651she’s been untreated, they don’t know for sure what she has so no treatment has started
Surely a much better plan then would for not be getting cancer and go through this.
So he's planned for her to get cancer and then be the first person that gets cured is that it? He sounds like a sadist the way you describe him, just toying with us.
Have you seen the new CAR-T treatment that has been developed by Massachusetts General? It seems to hold huge hope. Please do research (I guess, very likely you are already aware). ❤
You can get your hands on all these reports. I am in Canada, and if you have a procedure or test done, you can request the records from that procedure or test. You usually have to fill out a form at the place you had it done, so it's usually easier just to get the form filled out at the site when you are there. it is a bit of an inconvenience, but it's a pretty simple form. Some results you can access online but I don't know if you have that option if you are here on a visa. Some doctors will also just give you a copy of what they have, but not all. We've gotten CD's of images as well as reports of these images. It is helpful because what I have learned is sometimes doctors don't fully inform patients, maybe because they think they won't understand so they dumb it down for you, and sometimes things get lost in that translation.
Would it not be best to get your second opinion in Northern Ireland before starting any treatment?
They've said no treatment should happen yet "because you'll need it later" for every option. I will be getting second opinions on everything when I get home 😊
@@diaryofeireann Okay, many thanks!! From an earlier video I thought it was only radiation therapy that was the once off, so sorry for my confusion. It seems a bit unusual starting *any* treatment without knowing *exactly* what's at play. Hopefully the NHS can eventually get to the bottom of it for you and things aren't as grime as they presently appear.
Look into the Mayo Clinic here in Minnesota, maybe a chance to be seen if doctors can’t figure it out there. Worth a shot , Godbless ❤
Rochester Minnesota
There's also a London branch. @@jennit9479
I love the way you and hubby look at each other so much love. Prayers continually going up for you and your family I know this journey is not easy for any of you. ❤
Hello Eireann, I’ve just seen the news about a new treatment called “CARv3-TEAM-E T cells” which has been tested by the Massachusetts hospital in Boston on 3 patient.
It has drastically reduced the tumor days and even hours after the injection.
It’s not finalized as they still have to understand how to prolong the life and effect of these cells.
Hi Erieann, I hope you are doing well and I’m looking forward to your next update. Stay strong beautiful girl.
Find a brain surgeon or oncologists to see. One that has done many cancer surgeries. In Tampa, Florida is the Moffitt cancer center. Highly regarded. Also Cleveland clinic inOhio. And Mayo Clinic in multiple locations. All excellent.
Doctors just don't have all the answers. They can be wrong, when they swear they're correct. The fact that you really weren't given a specific diagnosis, by everyone else, I wouldn't take to heart a negative prognosis by this doctor. You have every chance of a good future. You are the best advocate for yourself. I was in the medical industry for years. People who are able to advocate for themselves, or have someone who will do that for them, always do better. Never stop asking the questions you want answered.
Canadian medical system is amazing….. i have had cancer twice, two different cancers and had amazing care theough both instances. Cancer free today at 44 years old.
I think in this situation, this cancer is much harder to treat, specialists can’t be certain of anything, they can not give professional opiniona or answers, because they DO NOT KNOW. They do their best.
I know in Canada out medical system is world class.
Your emotions are normal. We understand and love you and are praying for you, sister! ❤🙏 ❤🙏 ❤
I appreciate that😊 thank you 🙏❤️
Funny how the appointments and scans/etc. Just become a new part of life. Thank you for courageously sharing your journey. It's inspiring.
Praying that she gets the miracle and that she is the special case that survives this I have no doubt that god will be with you every step of the way ❤❤
Watched this after saying another prayer. I applaud your calmness in a daunting dx. Hanging in there, I and others the world over are rooting for a better DX and always HOPE❤.
I understand too well what you are going through right now. I've had a brain tumor for 2 months and today we still don't know exactly what it is. the brain biopsy gave nothing, neither did the lumbar puncture... I'm sending you all the best vibes I can from France and wish you the best.
Hey there how are you doing
as good as possible. the wait is long and the uncertainty is heavy.
No comment for this doctor 🤦🏻♀️🤦🏻♀️
Thank you for sharing your journey, sending you lots of love from Norway 🙏🏼♥️ You’re such a beautiful soul! Xx
I am a german medical student and I dont know a lot about the canadian healthcare system, but to me, as to what you are portaying it, it seems seems absolutely messed up. I dont understand why you would wann go and see a standard oncologist having a rare case of Astrocytoma (not trying to blame you but rather questioning why there is noone telling you specifically where to go). In Germany it is brutally easy getting appointments at several doctor's offices and a case like yours would most likely be handled at a university clinic - and I'm talking long term and not just the operation. It looks absolutely incredible to me how you are simply sent from one doctor to the other. I would seriously recommend you to personally contact a doctor abroad (you can find their emails everywhere on the internet) and hope for some of them to take over your case and maybe clarify a lot things. I am not a doctor yet but in my (partly) experienced medical opinion I would assume that your case needs to be handled by a specialist and not just any "average" oncologist not specialized in the field of brain tumors. I really wish you all the best and hope that someone is willing to take care of your case. If it so happens that you are trying to contact german clinics I would absolutely be willing to help you find someone - of course I cannot guarantee for anything and I dont want to falsly get your hopes up too high. On another note - if it helps you at all - go open up that GoFundME. Best of wishes!
Believe she was seen at a university clinic if it was in London thought she mentioned London before. Also pretty typical to have both a surgeon plus an oncologist when you have many forms of cancer and then either neurologist or oncologist dealing with seizures. Believe the diagnosis is actually glioma which sadly doesn’t have great treatment options. Surgical excision and monitoring is first line therapy. Second opinion is always a great option but there are limits to what medicine can do especially when you have rare medical issues.
I was diagnosed w/Grade 4 Glioblastoma in January in Florida and made the choice to be transferred to Johns Hopkins Hospital for treatment. The delays you've had are just unacceptable! I don't know if you have the ability to get treatment in US, but at the very least send your pathology to MD Anderson, Johns Hopkins, Duke, Cleveland Clinic, Northwestern. Do NOT expect your doctor to present all available options/ trials...keep looking and searching for best options for you!! Order the book "Fatal to Fearless" by Kathy Giusti
We are our own advocate within our health care, it's hard to process unanswered questions, unfortunately unknown specialist. My almost 10 months trying to figure out my brain mass seen so many specialists over the months without answers. Just leaves me wondering when I will find the diagnosis, its draining and makes me feel like giving up on answers but each day got tell myself affirmations and try to be positive not just for me but those around me.
You are both so young and so beautiful and so strong. You will get through it together.
I would get another opinion to see if it is benign or cancerous and knowing what type of cancer is important, obviously putting your body through chemo and other cancer procedures are no joke and it important to know what you are treating...please start a gofundme to at the very least get the right answers even if you have to go to the United States. You have to be your own advocate, please I know it’s exhausting but please please please fight for answers! You will be so glad you did. Sending love & hugs and so glad you have a loving partner to help guide you through this.
No he’s consulted w other specialists
Edit
Hi Eireann. You are in my thoughts and prayers. I'll be cheering you on the whole way. You've got this. Stay positive and pray. You'll beat it.
Please make sure that you get physical copies of every report and doctor's note. Put in a request to get copies of everything so that you can take them with you when you go home.
E'ireann Always remember you have a right to your notes and if you need help ask for a Patient Liaison which all Hospital's Prayers Are Lifted for you !!
I just commented this as well and how to get your records in Canada. It isn't difficult.
I can’t believe the dr said he felt like he was being interrogated 😱 They are supposed to be there to answer any questions you have. Keep advocating for yourself and ask as many questions as you want too. Liked this vlog style vlog. I really hope you get more answers soon. 🩷
He probably meant that in a joking way because no doctor wants to tell a patient how long they think they have to live .
I have to say as nice a place as Canada seems to be, the Canadian medical system does not inspire confidence, at least going by some of the videos I've seen on TH-cam...
The fact that you're not getting consistent, irrefutable diagnoses and prognosis information from these doctors suggests that your case may be somewhat unique, and therefore unpredictable. I'd regard that as a source of encouragement in that you have just as much chance at beating this.
I am so sorry you’ve had to deal with such poor treatment during this all. I’m actually in shock about it. My friend had a brain tumour she’s in Ottawa. She had her first Seizure, she went the emergency room, had MRI that same day, stayed in the hospital for 2 weeks then had her surgery (while awake yikes). She ended up getting an infection but that was dealt with immediately. Tumour was cancerous so she had radiation and chemo pills. All of this was dealt with in the first month after her first seizure (luckily her tumours diagnoses didn’t take months like yours). Even if she gets headaches now years later she’s instructed to go right to the emergency and tell them she’s had brain cancer so she’s seen immediately. Your attitude and positivity through all of this is incredible. ❤
Please look into Thomas Seyfried and his research on metabolic cancer treatment. Also check out Pablo Kelly, who is an 8 year survivor of stage 4 glioblastoma. There are things you can do to take control of your health and have hope for a longer life.
In the US a patient always has the option or the right to request another pathologist runs a test on the tissue but insurance may not cover even here not at all sure about Canada. 🙏🏼 for you
PLEASE READ :-) Coincidentally, on CNN there is an article posted today about a new study called car-t therapy for glioblastoma that just was published with amazing results. I tried to link it, but I guess someone thought it was spam. It was published earlier this week by City of Hope Cancer Center in Duarte, California; the University of Pennsylvania; and Massachusetts General Hospital... "Three studies published within the past week have reported dramatic results with a therapy called CAR-T delivered directly to the brain. In some cases, tumors have seemingly melted away on brain scans by the next day."
I really wish you could come to the USA. The doctors that you have gone to seem so indifferent to your cancer. Not calling when they said they would. It seems after all this time they would get a plan and stick to it. Leaving you to worry about it, and not helping you with phone calls. You need an advocate to help you. Stanford University is a very good hospital and it’s your life, be a-little pushy and make them accountable. I don’t want to upset you, but it’s your life and you need all the help….please stay safe and we are all with you. You are a warrior ❤️❤️💐💐
Be sure to get a copy of your pathology report and keep advocating for yourself! ❤
1000x yes
Hiya Éireann, seen your video pop up in my recommended. Best wishes to you from back home! Sláinte a chara 😃
Sending Éireann and family much Love, Strength and the Courage to get NEW DOCTORS 💞💜💞
Why don’t you go to MD Anderson in Texas or if on the east coast, DanaFarber Cancer Institute. That is where my husband went with Blastoid Mantle Cell lymphoma and they saved his life. They are so knowledgeable there as is MD Anderson in Texas.
Please please go see a specialist or go to cancer treatment centers of America, John’s Hopkins or MD Anderson
It's always hard when doctors, or people in authority, give prognoses regarding survival. We're all headed for death, but most of us just go through life not knowing when it's coming, it's just something we know is out there, but we don't know when, so we go about our life living like we've got lots of time. But some of the 39k people who've viewed this video, who aren't sick right know, thinking they have lots of time, will not be here next year.
Some will have an unexpanded medical event, some will die in some other unforeseen way. For example, statistically speaking out of 39k viewers this video has recieved, 279 of them will die of unintentional injuries over the next 12 months.
I think acting as if you're going to live forever, and just try to do and be the best you can is all we can really do.
Very hard to tell remaining time. My father has cancer and I was making preparation for funeral 3 times. Why? He always somehow slows cancer (chemo, biological treat) so.. Hardo to tell. First time they told us he has months. Thats 8 years now. So thats why many of doctors wont tell. You might live long but they might tell you 5 years and you will be dragged by depression. hard hard hard..everything is hard..
\Can you just fly to the Mayo Clinic in the USA???
We just don't have the funds to do that unfortunately
@@diaryofeireann please do the go fund so we can help get you to USA for treatment. At least clear dx
Diffuse, pleomorphic, complications such an epileptic crisis, tumor unable to completely be taken out with surgery, ... are words you don't want to hear. However, it's not a Multiform Glioblastoma or something similar, which is very great news. The fact that they don't give many straight answers may be due to many reasons: still they don't know enough about the tumor, they don't know enough about new treatments response, they're hesitant to say there won't be brain side effects, ... However, snd this is very positive, if they suspected a bad outcome with mid or high probability, they'd have told you, and they didn't, so it's absolutely great news (amidst the confusion and everything). Feeling lost is normal, these things can be complicated even for us physicians, so don't worry about not understanding many things: it's us who have to understand the situation, know the plan, ... and sometimes it's not easy to tell it to the patients in 30 minutes. Anyhow, I wish you the best, I'm sure it will be ok in the end!
Make sure you get a copy of all you tests and resuts pathology included along blood tests. You need to keep these in case you plan on getting treatment elsewhere or for a second opinion. It takes hospitals so long to send records.❤
You got this, and thank you for these updates! We are all here, go out there and CRUSH IT. Miracles DO happen, did for me with another form of cancer at a young age too. Stay strong, we love you and are praying for you!
You're an inspiration!!! Thank you so much for sharing this with me and I can't wait to join you in that group of miracles lol 😊
I think your doing the right thing by asking questions one thing I will say your better off staying where you are
I understand you want to go to your home the health service in Ireland wont help anymore than we're you are
All the best for the next appointment ❤❤❤
Omg. These hospital people are crap. My neuro oncologist and his team are like my family. Come to the US.
At least check into the treatment used in the United States and see if they have better or more than 3 options. We would all help with a gofundme. You can check online research for treatment in the United States.
You have such a beautiful accent to match your beautiful personality. Never give up. Your journey will be filled with ups and downs. You're in my thoughts and prayers. Keep your head held high and you will conquer this.
I havent seen any of your vlog for more than a month. Watching all your recent videos right now. I hope everything is alright.
I'm so sorry for taking so long! Everything is good 😊
I seem to recall a recent report (from DFTBA so it's probably reasonably good) that there's hope to be able to use blood tests to reveal if a person has certain types of cancer. I would suspect that it would still be in the research stage but I really don't know. Anyway ... thank you for taking us along with you. Nice to see a bit more of your S/O. I'd probably be pestering my doctors, too. Cute shared doggie kiss!!! :-)
Listening to you from Germany as a medical doctor not specialized in neurosurgery or oncology, but as an anaesthetist having worked in neurosurgery as well in a university hospital.
Did you know in ancient times the very essence of a human being was seen as located in the heart, later on in the brain?
So firstly I want to let you participate how the minds of patients, doctors and staffers work when they are confronted with a rare disease where there is far less if any knowledge than in a common one.
There are also different characters, personal fears and so on. It’s way easier to talk about common paths of certain illnesses that are rather than those which are not.Some people are more likely to speculate, others are more cautious, as you walk together with you in unfamiliar territory.
Science -oriented people feel more uncomfortable in these territories than those who see uncertainties as inconvenient, but they can handle these situations, just sometimes by saying we are still looking in all directions and are in contact with specialized people on this matter. Or we don‘t know! Sometimes this is the most honest answer, though any patient wants to have a precise one.
Don‘t stop asking ! You have the right to do so, it‘s your health , your well-being. If some one can‘t handle your questioning, you will someone else.
My approach in your appointment as a doctor would be to appreciate your long time it took you to get to the appointment, having looked at everything you have experienced from the beginning and thought about it. I would have asked myself before seeing you which questions I as the patient would have and draw a picture of what is already known incl. Negative impacts and side effects of both the operation and the medical treatment. I like very much to talk in pictures. Then I would think about what to tell you to encourage you but also not to provoke false hopes( „ take this pill for four weeks and anything that bothers you will be gone“.
This would not be true und you would not trust me anyfurther.
I would put an impact which changes can be made to make you feel better. I would also like to have a phone conference with all colleagues involved to prevent another opinion to rise each time you see another doctor.
This doesn‘t mean all tell the same and „ lie“ to you, but you need people you can rely on.
You mentioned a female doctor about your age having the same special sort of glioma You have and that this encounter has been very helpful, you are not alone.
I would, if I were you, create a , I call it honeypot, where I put in everything , Avery knowledge, every joy I met and remember my treasure not only whe I feel sad, but also to know what I am grateful for and what nourishes me in case I need it.
To your question, „ How long will I live ? „ - it‘s a question you cannot answer, not because you don‘t want or dare to answer, but it‘s a total speculation.
I want to tell you something to encourage you:
Obviously the type of abnormal cells in your brain are very rare. So it‘s logical to me your healthcareproviders want to make very sure according to the rareness and to the difficulty to find out what it is exactly that affects your brain .
They want to be as sure as possible to give the best treatment possible. That‘s what I would rely on. As long as seizures might be looming I would not drive a car myself. I would live a fulfilling life and embrace everything, be it as small as a bird singing, just anything and I would not be mad at myself when being in an unhappy mood.
A group of others is very helpful, remember, even when you are the founder it‘s your obligation to treat yourself best possible.
No one is allowed to eat you up because you know more , are a very dedicated person or else.
I am grateful you have such a loving partner and such a cute loving dog.
Did you know animals who love you make you live longer? You do so not because you are responsible for them but because they 0:06 bring you joy, maybe feel when you feel sad and comfort you, when your partner is not around. Laugh together, enjoy yourselves.
If you are someone who believes in god as I do, I would pray every night , every morning and tell him all that makes me happy, ask for relief and a when I don‘t understand what happens to me and why and ask for guidance and angels to meet you in any shape or form.
Yours Regine Heine. I made some mistakes but are too tired to correct them I always look forward to a new video of yours.
Good morning. As a cancer survivor my heart goes out to you. Miracles still happen. I have been following your path. All the best from South Africa ❤️
Thank you so so much ❤️ You're an inspiration 😊
@@diaryofeireann Neil Peart the famous drummer, was diagnosed with glioblastoma, they told him he had weeks to live, and he survived 3 and a half years!!!!!
Dear Éireann, I just wanted to say I've been thinking a lot about you again today and holding you in my prayers. This must be a particularly difficult time - trying to process the information you've recently been given and make sense of it all and yet still just get on with your day. I've noticed how, in challenging times in my own life, I almost believe that mundane chores like putting the bins out or doing the housework etc will somehow stop while I focus on important things. Yet they don't, of course. The demands of every day existence are still there - the jobs still need to be done. Yet try not to let yourself get overwhelmed and just do what you can when you can and be happy or sad, anxious or calm when you need to be. And as I mentioned before, always be kind to yourself and never worry about meeting anyone's expectations. Do whatever it takes to stay on an even keel - probably taking Teddy a walk is high up there on the list! Wishing you and Devin all the very best, tc, Rob and daughter Sophie (in windy North Wales) xx
Please call Sloan Kettering in NYC and get then involved in the diagnostic side. This is ridiculous!!!
I am so sorry to hear about your frustrating experience. Good grief! Just a quick tip: It may be helpful to request a copy of all your test results and doctors' letters so you can review/bring with you wherever you go. Also, I'm not sure how much it would cost to send your patient file to somewhere like the Mayo Clinic for their specialists to review. Sadly, our Canadian healthcare system is so broken! I know lots of us would be more than happy to donate for Mayo Clinic specialist(s) to review your file/provide a course of treatment. Just something to think about...Sending big hugs and strength to you!❤😊
I hope this little piece makes you smile. I have a 5 month old daughter (my first born) and whenever I have your videos playing on the TV, she always looks at you and smiles and giggles ♥️ I have blonde hair and light eyes like you so sometimes I think she thinks it’s me on the TV lol either way, she loves seeing you! Hope this brightens your day a little bit! Stay strong ♥️
Hi. I found your video in my.feed. I had. breast 🎀 cancer 5years. ago. My husband😊Is from. Alberta,,Canada. We liive in the states. I hope to be able to 🙏 pray. for you. God bless
Get to the US. Mayo, MD Anderson, Sloan Kettering. You need the best care and you’re not getting it there
Stop thinking about it, really? An oncologist said that?! Since my cancer diagnosis, I have had people close to me say that (it annoys me to high hell), but I didn’t think an oncologist would DARE say that! 😮 I am usually only thinking of my cancer when I have to go to a medical appointment. However, when I was first diagnosed it was ALL I could think about. It’s NORMAL. Anyone that says that has never been through cancer!!
I would advise you to seek a second opinion at Sloan Kettering in New York City. I believe a second opinion consult is around $300. You can at least see if they have anything different to say, and take the information to your neurologist/oncologist.
I would most definitely be "interrogating" every medical professional I'd come in contact with. Even when medical people are nice, it's your life and I personally think I'd be thinking about it a lot and wouldn't want someone telling me not to think about it. Thanks for bringing us along. All the best from down South 🙏.
When I was diagnosed with advanced rectal cancer, my case was presented to a tumor board at the cancer center. I believe most new cancer cases get reviewed by the tumor board. The board is made up of a variety of oncologists, surgeons and other clinical experts. Cases are reviewed and recommended treatments are assessed and agreed upon and endorsed by the tumor board. You get a multi-disciplinary team reviewing, assessing and recommending a treatment protocol. You might want to ask your oncologist if there was a tumor board review of your case and if there were any treatment recommendations? There seems to be so many different interpretations of your situation. And you don’t get a clear understanding of your possible path forward. Perhaps the uniqueness of your tumor makes it challenging for the doctors to come to an agreement. But don’t let them frustrate you and always feel comfortable pushing for information. Even if they feel uncomfortable being interrogated. It’s not surprising they aren’t giving you an estimate of life expectancy. That’s a very difficult question to answer and no doctor wants to be accused of giving false hope. My oncologist, who was a friend of mine, was very hesitant to make any predictions about my survival. He focused on observing how my tumor was responding to chemo and radiation (I also had two surgeries) and would tell me how it was going - which is based on observations and facts. After three years of follow up, he started to be more optimistic, but never did he give me any numbers for years of survival. I’m now cancer free for four years. Which is quite nice. Most survival statistics focus on the 5 years after diagnosis, longer term survival rates are harder to find. But I think you have a general understanding that brain tumors are challenging. My advice is not to worry about years of survival but rather be focused on the near term. How you want to live life on a daily basis, but also cognizant that you have a cancer diagnosis to consider. I’m not saying live each day like it’s your last, but with an understanding that you are in a situation that will most likely limit your life expectancy. I was fortunate to have a more deliberate treatment protocol. I hope with time you will get a better understanding of your particular situation. You deserve to have that. Thanks for sharing a very personal part of your life.
My doctors didn't mess around, it was immediate surgery to remove it asap. Apparently I also had a pleomorphic xanthrocytoma. A mouthful, also a head full! But fast growing and malignant. After that, radiation for a month and fingers crossed, in two weeks I'll have another check-up, and in June an MRI. Maybe I will be clear for a while...❤
Hi Éireann, I've seen a couple of negative comments on here tonight which I hope won't upset you. Remember that there will always be people who project their own worries and insecurities onto other people in a bid to feel better about themselves. They do not possess the qualities of personality and strength of character which they clearly need to face up to their own difficulties. And so they hit out at others. Don't let them get to you. You have won the hearts and minds of so many people on TH-cam and elsewhere. We love you so much and we'll be here for you every step of the way. Take care, Rob (and daughter Soph!) xx
Im impressed at how well Devin knows the terminology etc, he cares for you so much. I am so sorry you have to deal with all of this at such a young age, you will be ok❤
She is BEAUTIFUL!!!
Continued prayers. ❤
Eireann , I think that I would be seeking another opinion. Are you still relaying your medical data back to Ireland ? Another set of eyes reading the raw facts may be helpful . It is amazing that in this day and age you would think that getting the facts lined up ,so that everybody you have to deal with is on the same page, unfortunately what you are experiencing is not uncommon.
In the past when we had to deal with similar situations regarding appointments and the dread , we would plan some positive reward for after . Sing , dance ,laugh, eat …. and always walk on the sunny side of the street. Its your life.
I was diagnosed a couple years ago braf v600e metastic colon cancer patient I’ve been in remission for over a year and a half I am msi high though as well! I wish you well and reach out if you have time ❤
You are so strong ❤ All of my prayers to you. Thank you for sharing this for those that love you and for comfort to those as well who are going through something similar ❤
Omg same things happened to me. A couple of doctors pointed out that I ask alot of questions, and both looked very irritated. One time a doctor told me my lesion was decreasing in size, when I looked over the report he was reading (he was near me) he was looking at my ovarian cyst notes - not the lesion from a different organ I'm seeing him for, he wasn't even an Obgyn. I pointed that out to him, and he was just like oh ok. Jeez. Yes, some appointments feel very pointless and I also get the sane feeling when going to a doctors appt.
interrogation ?Seriously? Maybe time to see a different doctor who doesn’t feel inconvenienced by your obviously important questions. You are interviewing them in a way , so maybe he didn’t pass his interview. I would want to have someone be supportive and open to all of my questions and concerns.
The degree of frustration that you must be feeling ~ it just blows my mind. You must be feeling numb at this point, because that’s the only way you’d be able to keep trudging along with that amazing smile on your face. Hang in there you sweet soul. You don’t deserve this disorganized medical care, but they’ve got to get it together at some point. Sending powerful good vibes your way ~ 🤗
Its not the same thing but when i had a second hip replacement on my right hip because the first failed, i was told I'd always walk with a limp and would never be able to run. Well, i decided to determine what i could and couldn't do! I dont walk with a limp, i joined a gym, lost 3 stone and have just completed my first half marathon! This is more similar to your situation....my aunt was diagnosed with stage 4 breast cancer when she was 38. She was told she had maybe 8 to 12 weeks. They would monitor her and offered palliative care but that was it. A devout catholic she told her oncologist that no-one but God could decide when she died. She then began a method of daily prayer whereby she thanked god for healing her and put herself into feeling what being cancer free would feel like. At her next scan, the metastatic tumours had shrunk. The one after, they had gone. Eventually, the original tumour went as well. The medical staff were astounded. My Aunt died at the age of 85 having spent every day of her life giving thanks for her disease free body. DO NOT GIVE UP HOPE, EVER. ❤
You have every right to ask questions. Don't stop questioning as you have the right to get the care you deserve.
Can you get a second opinion at an American specialty hospital? I'm not saying the usa is the all knowing country, but we do have world class cancer centers. My heart goes out to you!
Nobody should have to go through this. You are really strong. I lost faith in god long time ago because of all these horrible things that happen to people and I just cant stand it anymore. I dont want to see people suffer anymore. I hope you can stay positive!
Please Eireann put a fund-raiser up babe.
Thank you so much for being so kind 💛 I’m so sorry I’m only finding this now
You are such a strong young lady and my heart goes out to you. At 32 I had breast cancer and now I am 76 years old . My heartbreaks for you. I am sorry he was rude in saying you were integrating him. You have a right to ask him any question and as many as you want. I am sure if it were him he would be asking lots of questions. His remark about not thinking about it was so cruel. You can’t help but think about it because it is your life. God bless you. You are a beautiful young lady. I know Dr.’s are not God and don’t know all the answers. God has an appointed time for all of us. I pray you know shim as your personal Savior. God is the only person who holds all the answers. It is so hard to go through a scary situation. My prayers are with you and the Dr.’s for answers.
I am a cancer biologist and watching your video and learning what patients go through. I know this may not mean much to you but we are giving all we have got in the laboratory to find cures for the future patients. I hope that you will beat this with the help of good care and personalized medicine 💊
I will keep praying 🙏 for this beautiful young lady. God is good no matter what.
I don’t love the way this oncologist sounds. keep searching for your answer, wishing you strength and sending you love.
Wait. Is the tumor that was taken benign? I’m as confused as you!! Please let me know I have a daughter your age and I feel so bad.
You need another opinion from another group of doctors. I have had misdiagnoses, undiagnoses, etc and so many doctors (for other illnesses). You need more information.
I wish you could come to the Huntsman Cancer Institute here in Utah. We have some of the best oncologists in the world. I’m sure rooting for you friend. This kind of thing, I have found after living this life for 15 years chasing answers, is unfortunately par for the course and not the exception. You have to continually fight for yourself. I’d like to slap that doctor for saying you were interrogating him. Like yeah‽ that’s your role and his job to answer. Your life is on the line, not his. Self advocacy is often uncomfortable and unpleasant but never wrong because you deserve to be here.
I had to see 5 doctors before I found the one that actually knew what was really happening. Please don’t stop asking questions and follow your gut.
I heard that the canadian healthcare system is in a state of emergency but it's really horrible to witness it. I really hope it's going to the better back in Ireland
She is actually getting very good care. The Irish system is probably equally or more strained than in Canada. Medicine is not exact science. Looks like the advice is to wait and monitor. Sadly gliomas don’t have a ton of treatment options.
Éireann I really pray for you. You seem like such a humble person. God bless you ❤
Stuff like this makes me grateful to live in British Columbia, we massively boosted salaries for healthcare professionals meaning there are few shortages and get some of the best in the world. The rest of Canada(especially the maritimes) is really struggling though.
Of course, definitely pursue regular medical treatment. But in addition to that, may I encourage you to visualize or meditate on your body healing the tumor? Imagine your immune system fighting this tumor successfully. The mind is very powerful. It may not always work, but I believe it makes a difference! Also, I wonder if you would like to try making fresh vegetable juices at home (you can add a bit of fruit for taste)? These will give your body lots of antioxidants to ensure that you are as strong and healthy as possible. Best of luck xx