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Canada. ❤❤❤❤❤

I have epilepsy, went into status epilepticus in June and they found my kidneys almost failed completely which led to finding the abnormal protein, I’m only 26 so my haematologist seems a bit concerned I’ve got it. I just had a full body ct scan and am waiting to hear back if I need to get a bone marrow sample 😮‍💨 it’s scary being young and having something uncommon for your age. Especially if it’s possible progression, :(

Safe and effective that what they said.

I got it at 42 and 120 lbs. I'm active, go to the gym, yoga. And eat healthy

Doesn’t answer the question

14:01 when doctor said that survival of general population, does that mean the patient live the full life as non cancer patient? Please answer in simple words, english is not my first language

Great podcast ❤❤

Thanks for sharing your story

Then , I am not alone 😢 thank you all

What a blessing 🙏🏻🙏🏻❤️‍🩹💯

My Platelet count was 1067 from September 2023. By Dec 2023 my Platelet count continued to rise to 1200. By March 2024 my Platelet count was at 1367. From April 2024 I started Interferon Alpha-2B injections. As of now my Platelet count dropped significantly to 440. I still have frequent headaches, leg spasms, stomach issues but not too bad. I suffer mainly from massive fatigue. I've also started to notice my behaviour has changed, my mood is very up and down. Im more angry and very irritable. I have no joy, i dont laugh as much but I am crying way more than ever in my life. We have recently reduced weekly injections to every 3wks to help with fatigue & signs of depression. Let's see what the future holds. Take care everyone.

All cure cancer removal not good it not healer it will come back using kemo

Quality of life rather than longevity of life is why I chose to go forward without hormone therapy. 69 years old, live a healthy lifestyle and feel great. Not giving that up. To live life in fear is not living.

How are you now dear

New blood testes? Please explain.

No chemo for me.

When can I get Cemiplimab, Pembrolizumab or one of the other newer treatments using monoclonal antibodies (e.g. Ivonescimab) - anything else is just BS. This is the year 2024, and all other treatments are rendered “antiquated” by the monoclonal antibodies treatment, now approved by the FDA for advanced or metastatic BCC, SCC, or melanoma. (Former President Jimmy Carter had melanoma spread into his brain and got Pembrolizumab and that cured his brain cancer.) My Medicare Advantage plan gets me 2 months of waiting and treatment like cutting and scraping and radiation. Both my arms are covered with what I’d guess is mostly squamous cell skin cancer (advanced) and my face and neck are covered too. My dermatologist just wants to hide the skin cancer. with some cutting and scraping, radiation, some skin grafts - but not going to work as any person with any reasonable intelligence can easily see. (Just too much skin cancer and too deep.) Only a monoclonal antibody treatment is going to be useful on this much skin cancer and in such sensitive areas as my face and neck - and given enough monoclonal antibody treatment the condition would probably be cured. And my Medicare Advantage primary care physician is not going to help me in any way to get onto a clinical trial. Just sends me to see a dermatologist. My dermatologist just wants to hide the skin cancer. Only I care about my health, and that’s the sad truth. I had to fight with my primary are doctor to get a referral to go directly to an oncologist, sort of. What he is doing is submitting a request for “approval” to Anthem Blue Cross, that they approve that I can see an oncologist directly from my primary care doctor. My dermatologist wants to start cutting - isn’t going to work (for such reasons I already described). I want the oncologist to take a few biopsies and give a proper diagnosis of the severity of this condition (i.e. locally advanced, or worse). In that way I might find a clinical trial to take me. The ones I contacted told me they usually get referrals for patients to join directly from the patient’s doctor. However, they will consider taking the patient IF the patient has a diagnosis of locally advanced or metastatic skin cancer. I might also mention I have a soft moveable cyst on my jaw, about as big as half a marble, and had that for like 7 years or longer. Thought nothing of it. I did poor it out to my dermatologist and they sent me to a surgeon but that surgery got canceled because of problems with my Medicare insurance that took about 6 months ago and I have not seen about another procedure to remove the cyst. But now there’s this skin cancer thing that wasn’t a thin until I started treatment for a few small crusty spots and a couple spots that would bleed when I shaved - treatment with 5-Fluorouracil cream (5FU). That cream revealed the presence of a massive skin cancer network all over my face and neck and both arms, with nasty lesions that won’t heal (though maybe if I treat with 5FU for a year or longer they will eventually heal). The point is that cyst on my jaw has a little companion nodule on it which is some sort of squamous or basal cell tumor. My question to the oncologist will be what is that all about and has the skin cancer gotten into my lymph system? I also have had a phlegm problem for the last 5 years (at least, and I don’t smoke. Could this skin cancer have gotten into my lungs? I my request to see an oncologist is not rejected I will ask about that too.

Uhhhh, as a Medicare Advantage patient I can get no treatment but scraping at the lesions and then radiation - but no skin to scrape, they would go down past the skin and so really nothing to attack with radiation and so… skin grafts? But soooo much skin cancer and so deep there’s not enough skin to borrow in my body to graft with. There is a cure though, and that’s the monoclonal antibodies Cemiplimab and Pembrolizumab. But they won’t even send me to an oncologist, I have to wait for approval. Madness.

Thanks for sharing your story sir

I am breaking down ,I don't know where to start , leaving in a third world where most Doctors are not much familiar with PV, no energy, lost my job cause of low productivity,am down 😢😢😢😢😢😢😢

Brilliant

Thank you for posting

🙏🏻

Any possibility recovery

This is the best explanation of the basics of CLL I've seen. Just a top notch video. Great questions and even better answers!

Thanks for that. I have no idea what I have, nor do the doctors. Maybe it's this? Epilepsy, stroke, fatigued but can't sleep, night sweats, depression... Mother died of leukaemia and sister of a brain tumour.

Well, I disagree with this doc. May be better in a few states.

Thank you 🙏

Excellent presentation. THANK YOU. The doctor is really good!

Thank you for sharing your story. I’ll try to follow your lead.

12:22

I have been starting to study in depth squamous cell cancer which was completely removed from the whole right side of my forehead and past my right eye with significant bone exposure 10 days ago. I am a Registered Nurse, BSN & PHN In Nursing for over 40 years. I have started doing the dressing changes as of yesterday, as I felt the surgeon did not do enough dressing changes which were done post op 4 days and then one a week later. When I discussed this matter with the surgeon he said they could do dressing changes “ if I Wanted”😳!!! When I read the literature online the procedure for wound care was daily! The surgeon was very thorough I thought but there was little or none written or verbal info given to me. I only have an HMO and had to get special authorization for both the Dermatologist and MOHS Plastic Surgeon so I do not have leeway in getting second opinions. What do you think? I’m afraid the skin grafting may never occur because the bone and wound site were not properly treated and maintained to provide my incision site optimal health for a skin graft.

What treatment is available for those who refuse blood transfusions?

As far as I know, no....not curable

What about proton radiation for stage 4 squamous cell on the left side of the head. Surgery is out, the surgeon doesn't believe the patient would survive 12+ hour surgery, patient ruled out chemo.

She oooozes intelligence ! I know first hand... smartest person I have ever met !!!!!!

deadly desease

Bless u

He didn’t answer the question, which means there is probably nothing they know about that us CLL patients can do to prevent Richter’s Transformation.

The idea of the disease feels like you can have a stroke any minute. especially when your Hct and platelets remain unaffected by phlebotomy.

Excellent discussion, I just had a partial glossectomy for squamous cell cancer on my tongue. Dr believes margins were clear so hopefully that is the limit of containment.. Early detection is critical.

So if the car t cells get passed the blood, brain barrier, is there an injection or IV that can stop or prevent neurotoxicity?

On my first breakout I was scared to death. I thought it was bed bug bites... until I saw a doc, but I googled and read a lot and realized the painful part is the blisters. For anyone who got the herpes virus the best thing to do is contact #Doctorojie And live healthy. let your immune system do the fighting ….

Thank you so much for sharing your story. More power to you.

Very informative

Excellent video. Living well with FL receiving Rituxan every 8 weeks as maintenance.

Thank you Dr.your video just easy my mind. I am peaceful

Es curable o solo lo desactivan ?

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I got the diagnosis of essential hemorrhagic thrombocythemia and I see my dr in two weeks to see what’s next