Cancer Patient Stories: Getting Diagnosed with Leukemia (CLL) | Michele Nadeem-Baker
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- เผยแพร่เมื่อ 28 พ.ค. 2024
- Michele Nadeem-Baker was a TV news journalist turned PR pro for a global company when she started feeling flu-like symptoms. She chalked them up to being a workaholic. Soon after she felt more symptoms including dermal changes, bumps on her head, and swollen lymph nodes.
She finally got diagnosed with chronic lymphocytic leukemia (CLL), a slow-growing form of blood cancer, and was shocked further when her doctor told her there would be no immediate treatment.
Hear from Michele as she shares openly about all she went through, and her guidance to other patients on how to fight for themselves through the treatment decision-making process.
Thank you for sharing your story, Michele!
Full story → www.thepatientstory.com/cance...
Videos:
1) Cancer Patient Stories: Getting Diagnosed with Leukemia (CLL) : This Video
2) Starting CLL Treatment (A Clinical Trial!) & Then Relapse - What Next? : • Starting CLL Treatment...
3) Finding Purpose After Cancer: Fighting Myself & for All CLL Patients: • Finding Purpose in Can...
The interview has only been edited for clarity.
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Contents Of This Video:
00:00 - intro
03:19 - Describe the 1st CLL symptoms
06:43 - Next red flag: high white blood cell counts
09:09 - How did you find your hematologist?
12:39 - Waiting for results and answers (AKA scanxiety!)
16:47 - Other tips for doctors on how to communicate with patients
18:58 - More communication is key from physicians to patients
20:08 - How did you process news of the cancer diagnosis?
26:19 - What is "watch and wait?"
30:15 - What is the follow-up schedule on active surveillance?
32:08 - Different factors for different people signal the need for CLL treatment
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#ThePatientStory #CLL #Bloodcancer #Cancerstories #Leukemia
Here’s the thing. I’m a nurse and have been for a long time. If you aren’t comfortable talking to people and giving them what they need don’t become an oncologist!! It’s a tough job but what a way to treat someone. Talk about throwing you under the bus. They should have a packet of information about your diagnosis available and have time to spend with you.
I am ha c ing a lobe removed from my right lug soon because of cancer
I am most afraid of the hurt bb after the surge t y may I have some out put from oth n n& others who have been through this please thank you kindly
@@seanizad7684 ask them for a nerve block + a local infusion. It can really help. I’ll keep you in my thoughts.
@@seanizad7684 I pray you are doing well, Sean.
It's unusual for a physician to not order a CBC when you have a bad infection. I went in for bronchitis and the blood work showed an elevated white cell count at which point I was sent to the Cancer Center and diagnosed with CLL. (8 years now, with no treatment required so far, so yay for that! =)
Love all of your videos! 💞
PS I have a tee shirt that reads: "I'm living with Leukemia. What's your superpower?" 🤩
Amy, I LOVE that t-shirt! Thank you for sharing and so glad that you have not had to go into treatment 🙌. -Stephanie
I live in the UK my mom was diagnosed with breast caner stage 2 at age 47. They have done so many tests on her but she was always told what are they doing the never done something with out her permission they done her all scans she needed all other tests. I am really greathul for all of the doctor’s that have her treated her she is now 10 years after chemotherapy and radiotherapy a thanks lord everything is fine she is just having regular mammography every 6 months done.
I’m 46… went into to see a doctor last year complaining about swollen lymph nodes that would not go away and a missed period… the very dismissive doctor told me I had cat scratch disease and told me if I wanted to discuss menopause I should make an appointment for another day.. gave me an antibiotic and rushed me out🤦♀️ boy was she way off…. I found out I was pregnant (not menopausing) at 7 months pregnant when the baby kicked and CLL after seeing a very nice empathetic OBGYN who referred me to a head and neck/Ent doctor for a mass on my thyroid, saw 3 doctors after that because I kept insisting and advocating for myself, ended up seeing a hematologist/ Oncologist and he gave me a CBC which came back normal and a flow cytometry and finally diagnosed me a month ago with CLL…. If it doesn’t seem right, advocate for yourself. Only you know your body best
I'm a CLL patient (in Brazil) myself. Patient Stories are very important to me! What surprises me a lot is the way many doctors give the diagnosis of the disease to patients, not explaining well (or at all) about the illness and treatment and that's why I also think MEDICAL DOCTORS should see the interviews of Patient Stories! Doctors are very important but they are no gods and shouldn't be behaving as if they were! "I think you have the C-word disease!" How stupid and disrespectful can some doctors be! My doctor took her time, explained everything and I left the diagnosis consult hopeful and tranquilized, I still had a future!
Thank you Stephanie, thank you Michele Nadeem!
P.S. NOT automatic subtitles could help us, from abroad, a lot!
Felikes, thank you for your message! Do you mean turning off the subtitles would be better?
@@ThePatientStory No, no! I prefer having subtitles, but when they are automaticly generated they commit errors in the translation and are not always exact. So I prefer 'official' subtitles like some videos - for example Michele's - have, with edited and corrected subtitles. However, I think it would be more expensive to do that and I suppose the main destination of the videos are people in the US and Canada and not in the rest of the world. In any case, I am grateful for the videos, they help a lot!
I don’t think you should assume no person should be told alone that they have cancer. I would not want someone else with me. I’ll tell them when I decide to.
Glenna, thank you for taking the time to leave your thoughts! You're right, it's very personal. I think we can agree it'd be nice for patients to be able to make that choice for themselves. I've heard many times where people weren't expecting such bad news and were caught alone, which is not what they wanted.
I've always been told bad news, including both cancer diagnosis etc., alone. None of them had ever asked if I had anybody else with me or could come with me. Likely a time issue ie wa ting to get right onto tx as opposed to waiting to divulge info after making another appointment that works for 2 people. (just looking at both sides)
Yep, totally agree 💯.. Let's you focus on your feelings & yourself, instead of worrying about their needs & feelings when you havent even felt your own feelings yet..
Giving you that important me-time, Then you can work out how best to tell them.. 😌☮️🌏
It must be a common thing with oncologists. I was told something similar, there was no rush from the doctor or his staff; I actually had to pry my diagnosis out of him because I got my blood work results before my appointment. I’m now waiting for another appointment. Thanks for sharing your stories!
Recently diagnosed CLL. Took 8 months. Finally after exploratory lap. They got Bx of lymph node. Thank you for this video.
Michelle, thanks for this interview. I am 70 and was diagnosed with CLL on 24 May 2020. I so relate to the shock/horror you went through when it was revealed to me! I knew I had to let my kids know...but other than that I prefer to keep it private. I was also told that I have CLL, I looked at the doctor and said, cut the jargon, speak English. Apparently mine is in the “early stage” going to see the Oncologist Wednesday afternoon South African time. Blessings to all!
So glad yours is early stage and that you are getting care! -Stephanie
Hope you're doing well 💜
My husband kept about his CLL for 5 years didn’t tell anyone
Anyone in Johannesburg you can recommend?
It would be nice if mds would have a printout with differential diagnosis with some sort of plan in place for the person they are treating.
Wow omg would that ever be so helpful!!!! Instead they gaslight you and suggest a mental health problem.
I’m so fortunate that my PCP at the initial referral to hematologist said “ we need to rule out leukemia”. So helpful in preparing me for results.
Michele I hope alls good with you thanks for sharing your story ❤
I
Thank You for sharing you are a strong woman God Bless You
Teresa, appreciate your kind words for Michele! She's a total rockstar :). -Stephanie
I’ve had malignant melanoma and the doctors have ALL treated me so blazay, like “oh, you’re ok…” so I stopped getting checked up because it was always told to me like it was no big deal. Another doctor was shocked at me for not getting checked anymore. But moving forward … now I’m dealing with my daughter who is 8. She had a bad bruise on weird stuff so I got her blood checked. They said they were going to refer us to a blood specialist. I thought it was no big deal. Then the Seattle Children’s Hospital hematology / oncology department called me and i panicked… they did more blood work and they’re now blowing me off even though I’ve seen the blood work is still off. (Blood not clotting, high white blood cells low platelets) and she’s having bone pain headaches and other symptoms every day. It’s so frustrating.
Another excellent interview. Thank you.
thanks Michele!
Oh girl, I am going through the same mental horror at the moment. At the moment I am mentally very fragile because something in my body is not working how it should. Until now I have no diagnosis and that is what makes me crazy...I feel that it all gets worse the more I worry.
And now, some days ago, I also found some of these blood spots...really few till now, but I instantly thought of leukemia and I was totally broken...so I am so glad that I found your video here, that calms me down.
Mentality is so important for your well being. I was worrying so much I couldnt even eat anymore. But as soon as I concentrated to calm down, bring my blood pressure down and giving myself positive thoughts I felt a lot better
Thank for the positive reinforcement. Very informative.
A lot to take take in this past week. I hit a deer in Southern Maine… it died along with mangling my car. Two days later CLL is confirmed. What Halloween that was Watch and Worry begins. Low Hemoglobin for the past two years. Several Iron fusions brought it back to low normal. But white blood cells went from 11 to 17.5 and platelets are dropping. Fish Test shows 11q del and Flow cymetry reveal CLL I’m 56 and optimistic thanks to you. you both look healthy and beautiful. Sounds like I’m not too far away from this Dana-Farber CLL specialist you speak of as I am in Southern Maine. I’ll be watching for more of your videos. Thanks, Steve
Steve, so glad you found Michele's story. We will be posting more content in CLL here and at our main website: thepatientstory.com. Hope it will be helpful. -Stephanie
Hi, I'm rosemary and live in the UK last Tuesday 23rd August 2022 I had a bone marrow biopsy, I'm still waiting for.The results
I suffer from copd and I'm after 55yrs a lot of my symptoms I put down to the menopause, I had a blood test that showed elevated white, red and platelets I don't know why still waiting xx
Rosemary, thank you for sharing. I hope you get answers soon!
Any news?
I have severe hive outbreaks constant itchyness fatigue extreme tiredness swollen belly pain in neck going down arm .brown patches on my back out breaks scalp itchness periods of insomnia blurred vision .all bloods come back normal saw Dr yesterday told me to make another appointment to discuss these months of long term symptoms after watching this I think I need to see a hemotogist I've been referred to dermatology now past few days bad pain in pelvic bone
did you get vaxxed for Covid?
Wow, I just saw this video and read this comment, but your symptoms are my exact symptoms....plus I have chronic constipation, low grade fever, shortness of breath, etc. I was actually referred to hematology and they denied my referral. I'm afraid by the time anyone finds out what's wrong with me I'll be eat up with cancer. Prayers for you
I have all these symptoms and more, some up and down CBC. For me it is Mast cell activation, Dysautonomia, Gastroparesis and many other comorbidity association with this “Mast cell”.
I swear….. so many folks eat well and are into fitness have cancer that I’m beginning to think eating well and exercise are precedent.
Good morning! Lol waking up now
Being told you have cancer is very stressful, so my guess is that the doctors don't want to state cancer as the diagnosis / possibility until they know for sure.
What is on her arms?
No. My dr is younger then me and he did exactly same.
What was your white count at time of disgnodis?:my white count continues to remain elevated 😊
I do not understand... Why no doctor at least did a blood tests?
That oncologist was not providing you with effective decision support nor standard of care. He should retire! I am so sorry you didn’t get good care from that oncologist!
It’s not clear to me why she didn’t start treatment right away after diagnosis like with any other cancer.
Often it is best to watch and wait - only starting treatment when it is needed. This is well documented.
Lymphoma and Leukemia are not like tumor cancers, watch and wait is often prescribed because once a treatment is used if there is a recurrence that same treatment will no longer be effective.
I'm sorry but that was a horrible doctor. He starts with you have the c word!!! Really...
Prayers for healing, Friend. Unfortunately, your story is identical to thousands more I'm seeing on my You Tube feed on a daily basis now. The most healthy, fittest age group in our population, those in the prime of life and not screened medically for disease precisely because they were generally unaffected, are now being diagnosed with all types of cancers, many rare, most aggressive, advanced or late stage at diagnosis and not responsive to conventional treatments. These are individuals who basically had little to no symptoms and were in premium health 6 months earlier but are suddenly found to have Stage 3 or Stage 4 disease?? Analysts who monitor these trends for insurance companies, Wall Street, etc., have never encountered the rise their data has bore out since 2021 and the shot. There is mountains of proof out there now by legitimate scientists from around the world proving it was poison. I no longer trust medicine and our medical system is an absolute joke. It has been transitioned into a for profit model and patient health is not at the forefront the way corporate profits are. My heart goes out to you and I will pray for guidance, comfort and healing as you travel this difficult journey.
try dealing with cll aione you have no clue