7 ай бұрын
8 ай бұрын
8 ай бұрын
8 ай бұрын
8 ай бұрын
8 ай бұрын
8 ай бұрын
8 ай бұрын
9 ай бұрын
Пікірлер
@LaurenRandolph-m2z 2 күн бұрын
Swift Track
@DonnaWhite-z8d 6 күн бұрын
Jamar Rapid
@kevanhubbard9673 6 күн бұрын
I have stage 2B Mycosis Fungoides T Cell Lymphoma and got tingling in my fingers and toes from Brentuximab which hasn't gone 6 months later plus it didn't work!Now a Stem Cell Transplant looms.
@ritaallford9339 7 күн бұрын
Garcia Larry Hernandez Helen Rodriguez Jeffrey
@TomlinsonCyril 7 күн бұрын
8388 Corkery Courts
@deusexmachina1421 7 күн бұрын
My mom started to have tingling in both her feet & calves after her last hematology appointment. Dr perscribed her with calcium tablets but the pain won't go away (only getting worse according to mom) could that possibly be something to worry abt?
@kimberlybegonia2869 7 күн бұрын
My husband just passed away from MCL after 10 years of treatments. First tumor was at the base of his tongue 😮 then 5-6 years later relapse was a tumor in his upper R lung hilar region. My only advice is after you gain remission first time just live your life because this is incurable and it is unpredictable. 🙏🏼💜
@louclarke2338 8 күн бұрын
Looking for the English translation. Is one available?
@zippyustar6350 9 күн бұрын
What is follicular lymphoma? Symptoms? Where does it show up? Scalp chest shoulders? Is thrush part of it? How does sugar affect the body?
@tomjenkins8817 17 күн бұрын
Thanks for the great information.
@at6969 20 күн бұрын
Awesome
@gudmundurgaukur282 Ай бұрын
<3
@indefat Ай бұрын
Really good lecture.
@iamyou8416 Ай бұрын
Just had a biopsy. Waiting on the results. Been 24 days so hoping no news is good news.
@jennas17 Ай бұрын
My mom was just diagnosed with B-cell follicular lymphoma grade 1.
@giannimolluso5846 Ай бұрын
Im 55 years old and I was diagnosed with Stage 3 Follicular Lymphoma. I had 4 treatments of Rituxan only and going for my follow up PET scan soon.
@foteinikaouri3539 Ай бұрын
Ελληνικα
@Anjanya1948 Ай бұрын
What happened to the lady whose abdominal nhl came back? What else was tried?
@sookie4195 2 ай бұрын
I was just diagnosed. I’ve had a very painful but briefly so, bone marrow biopsy (request Fentanyl & Versed as I didn’t know that it was an option). I’ve also had a plethora of labs and a PET scan. Follow up this Tuesday at KU with Dr. Hoffman, Oncologist. I’m a retired RN and started my 31+ year career in oncology. I know enough to be afraid. God watches over the tiny sparrow. He will surely watch over me. Praying for us all. 💚
@guadalupecarraminana9943 2 ай бұрын
Thank you for helping us to understand better the treatment of follicular lymphoma.
@karenharris722 2 ай бұрын
My mother allowed pesticides to be sprayed in her house which I'm sure led to her lymphoma dx. This is the same cancer that Jackie Kennedy had, and she used hair dye consistently. I wish people would wake up to the fact about how chemicals can cause cancer!
@Sypossc 2 ай бұрын
Great talk Jamie!
@joethompson9101 2 ай бұрын
Very helpful information. Thank you.
@diwobi1 2 ай бұрын
Habe auch sezary Ecp ist ganz gut bade puv auch und für den juckreiz empfehle ich kortison creme.
@조재철-m5f 2 ай бұрын
Thank you for sharing
@mikaeljonsson2078 2 ай бұрын
I have CTCL and gone through different kinds of treatments for 10 years now, but at best it just subdue the progression I think. I listened to another cancer expert, who said cancer is basically a metabolic disorder. And what he meant by that, is that essentially cancer cells can live without oxygen, as opposed to normal cells, and that cancer cells draw their energy from glycose. So if you deprive the cancer cells of blood sugars, for an extended time, with keto-therapy, you could actually reverse the progression of cancer radically, and in some cases irradicate it. Would you say that this is possible also for lymphoma patients?
@Bee-Kind-Baker 3 ай бұрын
Does anyone know where this doctor practices? Really need an appointment . Thank you
@Alamgadeed1 3 ай бұрын
Very good explanation. Thank you 🌷🌷🌷
@VRey-fd1yp 3 ай бұрын
Thank you for your presentation. 6/17/24 at 4PM. I was recently diagnosed with low grade lymphoma and was looking for a diet for foods I can eat. I still need a colonoscopy and some things give me diarrhea. After everything is evaluated in will be getting Rituxan injections.
@MaureenWalsh-vz7pg 3 ай бұрын
God Bless!
@shubikl9826 3 ай бұрын
Very interesting!
@shubikl9826 3 ай бұрын
Thank you: that was very clear, positive and encouraging compared to other confusing and depressing content out there. From a MCL young patient. ❤
@BalajiBalaji-bb5dj 3 ай бұрын
after relapse Hodgkin Did immunotherapy treatment is effective????plz reply
@mwizanyimbiri2253 3 ай бұрын
Amazing 🎉🎉🎉❤❤
@baqar.shahbaqar7046 3 ай бұрын
My daughter suffering from anaplastic large cell lymphoma stage 3 cancer she is 3 year old she is admitted in shifa international hospital islamabad pakistan and her crp level going to high 382 doctors fail to come over the blood infection plz tell what we do
@noelnemeth1318 4 ай бұрын
Chris, I hope you are doing well in 2024 and it's inspiring that you reached your goal to survive until your children were in college. Terrible you lost your wife so you're children completely relied on you. It's incredible you survived multiple relapses as the statistics are very poor for relapse situations. If you could comment on what treatment(s) you got over that time it would be appreciated. Your video sounds like it was made in 2020 so you had this disease for 10 years from the time of your youtube posting making you a long-term survivor :)))
@noelnemeth1318 4 ай бұрын
I have PCNSL diagnosed in April 2015 and now its May 2024. No stem cell therapy or surgery or whole brain radiation for me only massive doses of methotrexate plus other drugs done at the Cleveland Clinic. I am now 67 years old and live independently. I largely live a normal life and I retired at the end of 2020. I have my good days and bad days and I also use medical marijuana as needed. That is probably a bad habit and not helping things but when you're confronted with this disease you figure live life while you can. I get an annual MRI and have one scheduled in July 2024. I suspect I got the lymphoma from taking immunosuppressants treating my Crohn's disease leading to a permanent illostomy in 2007. I still have bouts of confusion and they are getting worse and the Marijuana doesn't help either but I don't do it every day but 2 to 3 times per week. Slowing down in many ways and I don't know how much longer I have but I have been fortunate to get these 9 years so far. I can only say the worst and scariest feeling in the world is being aware your mind is going and you're helpless. Also, I had personal problems in 2015 and I lost the one person who was willing to take care and help me (and it wasn't my wife with whom we eventually divorced). I can only say I hope those of you out there who find this will have similar or better success with this disease. I was on the fence with whole brain radiation and said I'd do it but the doctor said my decision was too late and I was only allowed the chemo. Best fortunate outcome for me as whole brain radiation will cause long term damage. I decided I'd rather have the shorter live with quality of life than longer life with the additional cognitive impairment from radiation which I was told can be quite debilitating. Everyone's story with this disease is different and I hope anyone out there will have great success but regardless enjoy every additional day you have as a gift and this disease gives you an appreciation for each day...and if you can enjoy life and help others as you can as that is one of the purposes of life too....to help others. let me also add that in 2015 as I was having vision problems in my right eye I kept seeing eye doctors until I was sent to an eye doctor at Cole eye institute at Cleveland Clinic. Eventually that eye doctor ordered an MRI for me to eliminate unusual possibilities (he said don't worry about it it's unlikely). Well, unfortunately (or fortunately) they found a large tumor on my brain stem basically inoperable. It took them a while to determine what kind of cancer I had. I had a spinal tap but those results didn't reveal anything. They were talking about doing a brain bioposy (which is risky) but my eye doctor talked the other doctors in doing a vitrectomy (removing the fluid in my right eye). That was done (who likes having someone doing a procedure with a needle on your eye while awake (in twilight sedation). The fluid had the lymphoma cancer cells in it and that was how they identified it. I am very grateful for my eye doctor and the excellent call he made. I think the other doctors there respect this eye doctor which was an impression I got. So I'm just adding this to say it's a process to figure out what's wrong with you and then determining a best path forward. And to add another piece of information on my specific circumstances, I have a family history of autoimmune diseases. My only sibling (brother) died in 2004 at age 52 from complications from Type 1 diabetes he got when he was 5 years old. My father died from complications from having severe Rheumatoid Arthritis to the point he was completely bed bound towards the end. And then I got Crohn's disease as previously mentioned around the year 2000. So just to add a little history here. Another thing as I recall I was having cloudy vision problems in my right eye and when I closed my eyes I saw an odd pattern like tendrils going to a center point. It was odd. I had this vision situation for I think like 2 years prior to my diagnosis and I felt increasing drawn and listened to the Christian radio network called "family radio". I liked listening to the stories although I'm not particularly religious it still gave me comfort. Maybe my body was telling me something or maybe something else I can't explain was calling me. They say there are no atheists in a fox hole. I have to agree with that and I can hope everyone has a strong social support network. But in the end it's just you and your maker. I have not felt this "closeness" for the last few years and it kind of feels a little like a "loss" but occasionally I remember and tune in the radio/internet in those times to get that comfort.
@noelnemeth1318 3 ай бұрын
One thing I would also mention were some early symptoms I had and how quickly they came. I had mentioned the hazy vision in my right eye that was my initial symptom and I had that for quite some period of time. So in late January of 2015 I gave a 20 minute presentation of my technical work at a professional conference. Up to that point I had no cognitive problems except odd episodes of confusion if drank too much of a liquor I had been given as a gift and later decided I liked it. And I was a little bothered by it but chalked it up to alcohol. But by mid February or early March I was suddenly having more difficult problems. I started having trouble getting to work as I nearly got lost over the following weeks(s) or so. I believe there were some other lapses and symptoms too that I don't specifically recall. I also had the eye doctor appointment at the Cleveland Clinic Coel eye institute and I seem to recall that the vision in my right eye had gotten worse. I had previously seen this doctor and he was giving me eyedrops for possible UVeitis. On that visit after my technical presentation in Florida I saw the eye doctor again (regular follow-up appointment from the eyedrops). The doctor noted that the drops did not seem to be improving my condition. He then said "Lets eliminate unusual possibilities". He wanted me to take an MRI as a precaution but said don't worry about it because it was an unlikely possibility. Well, I had the MRI and was called to see the doctor about the results and to bring someone with me. That part I thought was odd but I got my brother-in-law to take me. That's when I met the eye doctor and another doctor he introduced and said they wanted to talk to me. The other doctor turned out to be my future oncologist. Well of course I was devastated by the news that the MRI showed a brain tumor. And while it was a tumor of some kind (and larger than average---fortunately there was already a lot of empty space up there to take up the growing tumor mass ;) ). After that everything was kind of a blur. They didn't know what kind of cancer it was. I think I mentioned this previously. It took several tests including a spinal tap that let up to the vitrectomy my eye doctor performed. This avoided the brain bioposy fortunately. The fluid they drew from my eyeball revealed the Primary Central Nervous Lymphoma. At this point it was a race to get a treatment protocol set up and the insurance to OK everything. The insurance delayed the OK (I didn't know that) and was pushing doctors to get things going ASAP. That's when an extremely tragic accident occurred and I lost my brother-in-law caregiver. I recall talking to the hospital about starting treatment which I did a couple of days after the tragic auto accident. Initially I was put on heavy steroids dexamethasone or something like that. Eventually I put on 60 lbs. and I still have most of it left on me. And I mentioned the treatment protocol previously of that being massive doses of Methotrexate and other drugs. OK, I just wanted to add a little color to the previous post.
@noelnemeth1318 3 ай бұрын
And one last weird thing I want to mention. One of the odd symptoms that was also going on were things like losing the ability to write the number 7. Sounds simple unless you get a brain tumor. Writing letters and numbers got a lot more difficult yet I was able to still touch type (never all that good) without any problem. That was great as I was a technical writer of the computer work I preformed. So I was still able to work (largely for) the whole time I was under chemo either teleworking from my hospital bed or when I was between chemo cycles back at my workplace office. Just wanted to add that personal experience as everyone's experience will have its quirks along with the devastating experiences this disease can cause.
@noelnemeth1318 3 ай бұрын
And another thing I would like to add (I write these things as I recall them in my scatter brain) is the importance (at least to me) of getting aerobic walking exercise while at the hospital and at home. Also getting an IV access port implanted too for drug delivery. While I wasn't allowed to leave my hospital bed when I was getting the actual Methotrexate infusion, when it was just other things being infused like saline solution or whatever else, they did let me get out of bed and walk around with the IV pole with a wheeled walking base. And I would try to "power walk" around the halls of the hospital ward (around and around) with that IV pole in hand. I was a little self-conscious about disturbing other patients, nurses, and doctors but I had an urge to do it. I felt I had to do it ! Eventually I was walking all over the hospital complex (Cleveland Clinic is large !), exploring the complex of the many connected buildings. (And by the way I live in a Cleveland suburb which is why I went to Cleveland Clinic in the first place as it was local to me.) I think it was the walking that caused me to quickly expel the methotrexate from my system. They monitor the drug level in your body to see how you expel it because of the potential for organ damage (kidney I recall). In fact I was expelling the drug so fast at times they warned me that if I didn't stop walking they were going to tie me down to the hospital bed ! But I felt it was important and I had an urge to walk. Once when I was walking the large hall of Glickman Tower with IV pole in tow and wearing a hospital gown someone kept calling my name while I was walking. I thought I was imagining it. When they said it louder I turned around and there was my work supervisor right behind me !!! It turned out he was also a cancer patient at the Clinic and we was just coming back from an appointment there when he spotted me trundling around with the IV pole and in my gown. Funny coincidence ! They also have a connected building with an upper story observation deck for visitors, staff, and patients. And I would go there on nice days with IV pole in tow. Once a visitor there commented to me "if anyone is going to make it out of this place alive it is going to be you !". I laughed at that and thought to myself "gallows humor" but I appreciated the comment. So I just want to emphasize that I feel walking is very important and do as much as you can. Also, vital to get the blood-access IV port !!! Initially I did not have the port and just had the chemo delivered through an IV connected to my arm or hand (I have small veins and it's difficult to access them). That led to situations where the IV needle could get shifted or something and my hand would swell up and they would disconnect me. After a couple/few weeks of this a nurse recommended I get a blood access port implanted. I asked about it and the doctors agreed. That was done in early May of 2015. Having that port made a HUGE difference and I can't recommend it enough. The chemo got into my body much more efficiently. And I still have that port in my body 9 years later (as this cancer tends to come back I figured I'd better keep it). That's a long time for a port ! So in summary I want to emphasize the importance of getting "vigorous" exercise while in treatment and at home between chemo rounds and getting that venous access device implanted as soon as you can !
@noelnemeth1318 3 ай бұрын
Also, I want to add (again) that I did not have too many side effects from the treatment. I did lose some hair and it fell out but not too badly. The steroids early on gave me a lot of energy....so much so that I was jogging around my block at 1 and 2 am. My appetite was never that bad and unfortunately I like to eat and I'm obese. I wasn't careful and once did some yard work back at home and I cut myself and it started to get infected and was looking bad but fortunately it turned around and healed as the chemo effects wore off between 4 cycles that I had. So a warning that when you're under treatment don't try to do normal things when back at home. You're immune system is very weak and minor cuts or abrasions can get infected and badly so try to be careful !!! Another odd thing was I had some of those seborrheic keratosis (pre-cancerous skin lesions) on my face and the chemo seemed to really help those and eliminate them (at that time although some later returned). So that was a silver lining in that I thought the chemo helped with my skin lesions. Just another thing to note as an odd experience. I'd almost recommend whole-body chemo with methotrexate at times just to get rid of any bad stuff inside you but I realize that would be really bad advice but that's just the way I felt about it.
@noelnemeth1318 3 ай бұрын
I was pushing the doctors to get things going. My insurance company was not pushing to get my treatment started ASAP to my knowledge. I was the one pushing the hospital. I don't know what my insurance company did or not do to expedite things. Just wanted to correct that.
@LetsgoB 4 ай бұрын
If anyone has been given an HSTCL or NK lymphoma diagnosis I have information extremely helpful.
@adrenamims7233 4 ай бұрын
I have this also
@nicoleotilia 4 ай бұрын
I'm not sure you're aware that you did this, but every time you mentioned us going to a doctor, it was a man. Using the gender-neutral "they" pronoun leaves room for anyone of any gender to be a doctor. This simple change of language can have an impact on equality in the medical field.
@patriciabradley2085 4 ай бұрын
😊
@vampkillr 4 ай бұрын
just got diagnosed with cancer at 17 years old. :( about to turn 18z
@aravindjgd 4 ай бұрын
I mean Hodkin lymphoma
@LS-fm2zt 4 ай бұрын
This was an extremely helpful and informative discussion of the disorder. Thank you.
@cakesinspace3194 4 ай бұрын
ive had like 4 swolen lymph nodes on my head and upper neck, they havent gone down but also havent gotten bigger, and are moveable. I have noticed them about a year ago and dont know whether to be concerned, as I have been to the doctors multiple times but they have all said its fine
@laurakahn5011 5 ай бұрын
Thank you for this excellent video!
@disender 5 ай бұрын
A great summary of the patiënt specific info I got as an European/Dutch survivor of DLBCL.
@rosalindgerber 5 ай бұрын
what about the root cause?
@adithyavikram7 5 ай бұрын
What is the incidence of cytokine release syndrome after car t cell therapy, Greetings from Dr Adithya knv md medicine Chennai India.
@Odo55 5 ай бұрын
This is so very sad to hear. May your daughter be free of this torment 🙏🏼
@gregfraser2763 5 ай бұрын
How do you help under 60 year old FL patients who fall in the cracks that don't have health insurance, and can not qualify for a trial?