this is only my personal experience stay healthy 💘 #cancer #MPN #bloodcancer #blooddisease #health #awareness #myeloprolifefativeneoplasm #fibrosis #ET #PV #hematology #cancerawareness #oncology
I'm afraid to say it, but getting all these videos popping up on tube, of young people such as yourself going through all sorts of cancers and other. Only one thing comes to mind. I'm so sorry you have to battle this. Wishing you and everyone who is suffering, healing and improved Health. Please stay strong 🙏
My first ever video on RU-vid ever was about cancer as well. I’m still here 7 years later and have not beat it yet, but you will become better for it. Please always advocate for yourself. I have a gene mutation as well and I’m also like you. A very rare case. Please let me know if you have any questions. I relate very much! Follow your gut instincts always and take care of your body in the best way for YOU! Whatever u feel is right. It’s your body and no one else’s. This all happens really fast and you’re right. The less you have to wait, the better. You’re beautiful and you now have a great community here on RU-vid. Bone marrow biopsies are just horrible and I’m so sorry you had to go through that. but You will learn a lot from this experience and in many ways it will increase your qualities of life in ways that are probably unfathomable at this time. I promise you. And please know you have a friend in me if you ever need one. Doctors don’t know everything. They are very educated but please don’t live with this and dwell on the next 20 years just waiting to die. That’s no life to live. I really can not explain how much I relate to you.. the blood clots, all of it. All my love from a cancer Sister here in the Us 🇺🇸 xo, Britt.
@@ardormorte Oh really? You dont say. I dont hear an accent to be honest. I hope you are doing well and get through this! Maybe setup a funding page in the near future. As a global community we must never stop fighting against cancer! The best of luck to you!
Wow this is an almost identical story to mine, i was 27 with iso high platelets (1100). After mutation test and biopsy was dx with Calr mutation Et. Its a crazy feeling and like you say its feels like a jackpot scenario. Im 29 now, so only two years in. Thank you for sharing and if you like id be happy to chat anytime 😊
woow, this is exactly why i started a youtube channel, i thought maybe someone like me will find it and feel better, I'd love to chat, please lmk how we can do that
@@ardormorte Your channel will definitely help alot of people with that feeling of isolation, especially the younger group. My emails in my channel description, can find a better way to chat from there, looking foward to hearing more about your story!
It's crazy how recent this happened. I've never heard of an onco psychologists but definitely need to look into it. I'm very proud of you for putting your story out there I didn't know how rare this really was. You did amazing though 😊
Thank you so much! You really inspired me ❤ and I will make more videos about my therapy with an oncopsychologist soon. In my country there is a free therapy service for cancer patients
@@ardormorte I can't wait to watch it 😊 and I wish the U.S. had things like that, but unfortunately I haven't found much that doesn't cost an arm and a leg.
My husband was diagnosed with an MPN about six years ago and his progressed into a very rare form of leukemia called biphenotypic acute leukemia, which is Jack2 negative, Philadelphia positive Acute Myeloid and Acute Lymphoid Leukemia with a rare mutation added. He did get a bone marrow transplant, but unfortunately he passed away two months later from the leukemia returning. it was very aggressive. I'm so glad yours is being caught early and you're on top of it. It sounds like you're in better circumstances especially with your age. I believe my husband had an MPN for years without knowing. Sending you lots of prayers and love and thank you for sharing your story. It can help so many people. ❤🙏
Oh god I'm so sorry your husband had to go through that and for your loss too. This is so scary 💔 How old was he? I was told I'm at a low risk of progression and that a bone marrow transplant is possible for me in the future but it doesn't guarantee recovery.. Once again, I'm very sorry about your loss and all the pain your family was put through ❤️🩹🙏
@@ardormorte Thanks for your reply. He was diagnosed with MPN when he was about 56 and he managed it initially with phlebotomies once or twice a week and then he took the chemo drug Hydroxeyrea, which he stopped due to horrible side effects. I think that's where he went wrong was stopping the meds. His symptoms were completely out of control , he was getting so hot and he was always tired then he started losing weight rapidly even though he was eating so much food. Then came horrible pain which is how they figured out that he had progressed into leukemia at a very aggressive rate. The pain was in his back, chest and abdomen and it was 10 out of 10! I think in your situation, you're probably being monitored better than my husband was. He was told in the beginning that it wasn't that critical and that he could manage through phlebotomy but that turned out to be not enough. His dr retired and he had a new dr who had a completely different outlook on his condition. It seems his first dr didn't know enough about his condition which led to progression. That's just my opinion though, I could be wrong. Please, if you have strange symptoms, get yourself checked because we let things go too long and I wish to God we could go back in time and do it all so differently knowing what I know now. He may be alive today.
@@SarahLee-rs7ks oh god that scared me!! i have been loosing weight even tho I'm earing normally and I have back pains, I should really talk to my doctor about it...
@@ardormorte I don't want to scare you or tell you what you should do, but if I were you, I would get a second opinion if you are worried. We initially were dealing with Hematologists from St. Lukes Med and they told us that his wasn't serious at first. Once his got out of control they transferred him to KU Medical and we found out that KU treats more MPNs, leukemias and bone marrow transplants in the nation. They beat MD Anderson and Mayo at this. But MD Anderson and Mayo are excellent too. Unfortunately, my husband's was so progressed and rare with a rare mutation, that they couldn't save him even with chemo and a transplant. Not all drs are specialized and we learned the hard way. If you ever have questions or anything, I would be more than happy to help if I can. I don't want you or anybody to go through what we did.
I didn’t develop cancer after 1 Moderna jab but I developed a very rare form of clotting disorder that’s autoimmune and will affect my kidneys and liver in the future. I’ve been in ICU 2x and somehow survived a Femoral Artery clot that was advanced and not survivable yet I’m here. I also had to have a type of stomach bypass due to severe Gastroparesis that required the emergency stomach surgery. My overall health is declining and I regret the day I got it knowing it was all poison being injected but we don’t always have an ideal choice sadly. Millions of people are left suffering unprecedented and bizarre symptoms after getting a jab and people have terrible autoimmune symptoms and gastrointestinal problems, heart and liver problems. My liver enzymes are very high and it’s not diet related or substance related and it was perfect just prior to my stomach surgery. My body is unable to catch up it feels like and my INR levels will not regulate and I fear more clots. My labs are so bizarre drs cannot explain and I hear people saying they can’t stay not being sick and always getting sick and not actually recovering from sickness and cancer diagnosis and suddenly dying from heart attacks but no previous heart issues and no reason to die from heart attacks. I am petrified every time I get labs only because I fear another issue that can’t be explained and knowing the drs agree the jabs caused the problems. I am praying for you and science is forever improving and I’ve no doubt they will discover an actual cure for your cancer and stay healthy and active 🥰
Also think about the other thing that could do that: the covid jab. If you want to get healthy, you must be open minded and explore any possibility in regards with both the cause and the treatment.
@@seanthundercock6770 i mentioned it in the video: mine is unclassified for now with a CALR mutation, it will later be classified as either ET or PM (essential thrombocytemia or primary myelofibrosis), right now it's too early
hi beautiful hope you do just fine im also in very suck situation in my life i was very healthy then i had surgery in my abdomen and the doctor did pretty bad jop giving me no antipoitic 5 days later my wound burst open ! my gut was opened for days after that i had heart disease as complication of that stupid surgery 💔 and i feel you when you said your bone felt like want to vomit coz my heart was ill and i felt like my heart want to vomit .. keep us updated 👍🏻
thank you for sharing your story here I'm very sorry you had to go through this bad surgery and complications 🙏 I hope you heal and get back to normal as fast as possible, wishing you the best health and luck 🌟 and haha I'm glad that someone can understand what I mean when I say my bones want to vomit 🙃🙃
I have a rare blood cancer too called Mycosis Fungoides which is a T Cell Lymphoma.Mine started as a skin disorder and was mistaken for Eczema and later amended to Psoriasis when I didn't respond to the 30 substance patch test.Then some tumours came leading to an amputation and eventually the true cause came out and now a Stem Cell transplant looms otherwise it seems fairly certain i will expire from T Cell Lymphoma.
Oh my god I'm so sorry to hear that!! I've never heard of that and it seems like most doctors also haven't heard of that, hence the long time with no correct diagnosis I get the stem cell transplant part, I also have to think about that being on my to-do list in the future... I wish you all the best, I will read more about what you have 💌🙏
With all the amazing progress being made on the medical front, I hope that they find treatments for your type of Cancer. What country are you in? the reason I ask is because you seem to be getting very good care. Hoping you have a long happy life
Ask your doctor if Vitamin C therapy would benefit because it's directly into bloodstream. I definitely wouldn't wait till progression. Plead the blood of our God. ❣️ Your still very young. God is our life source not our grasping which you know in ways. Don't let the enemy trick you into thinking your ill. By his wounds we Are healed. They came to hear him and were healed,hearing pushed out the negative because hearts were convinced
I'm sooo sorry you were diagnosed with this. You're obviously stuck with it it is what it is. Don't think you could do right now is be grateful that you got what you got and not Jack 2 because it could be worse. This is bad yes but at least it's not aggressive like Jack 2. And at least you can have a chance of a long and happy life and treat it.
So even though you caught it at an early stage, there’s nothing more you can do about it to cure it at all? It’s the first time I’m watching a video like this of cancer where they didn’t start on chemo.
hi yes my cancer is different from other types, there is sort of a "chemo treatment" in a pill format, but it only slows down the progression and since I'm not progressing yet, I don't need to poison my system. Also as of right now my cancer can only be "cured" by a bone marrow transplant, but it's effective in only like 40% of the cases, so that's a big risk. The usual route of treatment is not chemo though, but an interferon treatment
hi well the treatment that exists right now is tied to a lot of different risks and side effects and since it's not a treatment to cure the disease, just to slow it down a bit, the doctors will wait until I'm further into the disease progression to start it. Basically if we start now the side effects are gonna outweigh the help from the meds
@@ardormorte peewee toms, Brian barczyck, Apple family, all channels like this. Hopeful at the start. Now all gone... It is a sad existence. Cancer should have not been made to exist. But we live in a cruel world with a cruel god. You don't seem to be a bad person and yet this happened..
@@sparkdrive2900 jeez, i literally said in the video that my doc gives me at least 10-15 years before the cancer even starts progressing and causing any minor issues, my general lifetime might slightly be affected but saying "the end is near, accept it" to anyone with any type of cancer is absolutely insane
@@ardormorte life is but a blink of an eye. You nor me can escape it. It is a fleeting moment that is deeply designed by the cruel creator. As we breathe now, we are approaching the end of our lives. Spend each day as if it were your last.
sorry to hear u have cancer it's a scary thing, i'm just suprised you have it at such a young age but then again its not like its uncommon for children to get cancer either
