That makes me so mad regarding the bone marrow w/o sedation!! How cruel and inhumane! I have PTSD from traumatic medical experiences similar to that and from dismissive doctors. I'm so sorry for you-like the mental stress wasn't enough to deal with.
I heard her say "light sedation" and I was shocked. I want to have heavy sedation. Total dark sleepy time (I've had an endoscopy so that's how I know).
I worked in a lab and seen so many non sedated BMB. It’s horrid to see these people in that much pain. Idly they don’t make them all sedated. No one should have to deal with that kind of pain, especially during such a traumatic time in their lives. Definitely inhumane in my opinion
Stephanie, another excellent interview with Michelle. I learned so much from Michelle and would like to thank her for her candor and authenticity. I wish her well with her ongoing treatment 💕
Thank you, Sam. If I can help evenone person, I am grateful. Stephanie is amazing, and did an amazing job putting this together. Thank you for taking the time to watch and comment!
Unfortunately, so many cancers have symptoms that seem innocuous…cold/flu symptoms, being unusually tired, feeling “weird” or “different,” needing naps, etc. Tragically, frequently it isn’t until the bad symptoms finally show up that scares people enough to take action, and sometimes it’s just too late. This is what happened to my precious dad back in 1995, after he’d felt crummy for a year & went to the doctor repeatedly, but didn’t get diagnosed with advanced colon cancer until he began to pass blood. By the time they finally operated, the cancer had spread to his liver, but he was only 64 and in great shape so his oncologist was sure he would tolerate the treatment. Tragically the surgeon who operated on him left surgical tape in his colon during his surgery, and my dad’s experienced terrible pain for weeks. The surgeon dismissed it as adhesions, and it wasn’t until we rushed my dad to the ER because of a 103 fever that we learned he had a baseball size mass in his lower colon that had to be removed. He was operated on again (2nd major surgery in 3 weeks) and we were told about the tape. As a result, my dad’s entire system was so compromised and he wasn’t allowed to even start treatment for 3 months (4 months after diagnosis). By then it was too late. He died 9 months after diagnosis. For everyone reading this, PLEASE don’t ignore seemingly mundane symptoms, especially if they’re relentless. And, most importantly, if you don’t like your doctor find another. None of us liked my dad’s surgeon at all; he was cold, arrogant, bragged constantly, and dismissed my dad’s concerns. We just had no experience with surgeons, this particular surgeon was the lead in the department, & the fact that he might have cancer hadn’t been shared with us. Ultimately, the surgeon’s response to his failure & my dad’s death proved his character; he said, “Well, he was probably going to die anyway.”
That is so so sad. My mother and father also died from medical negligence. It is infuriating and there is little that can be done, as they typically protect each other, and proving negligence is nearly impossible. That surgeon is horrible, and it is so difficult, when you just don’t know, to demand better. I am so sorry for your loss, your dad was far too young to die.
Lost my Dad after just 2 months Dr was useless... I wish I had gone to the appointments with him, I am sure I would have realised this Dr ( Sooooooo full of his own importance) could not have cared less about my Dad... My advice... Take your loved one to the Doctors, ( however independant they might be, insist on going with them) YOU might be the 2nd opinion, that determines a 3rd is necessary
I am so sorry for what you and your dad went through. Why are SO many doctors narcissistic a holes?! Humility should be the first doctrine of the Hippocratic Oath. THAT is how you do no harm.
My mother had cml. She was diagnosed at 54. She was going through menopause. She went to the doctor for a checkup and maybe some hormone replacement. Her blood test came back as a high white count. The doctor thought maybe she was having an infection from diverticulitis so gave her a round of antibiotic. I still remember seeing her looking at herself in the mirror and smiling that she was going to be fine. But the counts didn’t come down. Doctor sent her for bone marrow biopsy. Meanwhile she had a dream that I received a beautiful bouquet of flowers at the door for her and sat them on the counter. In the dream she saw them and they suddenly wilted. She knew the results were not going to be good. She was given 3 to 5 years and lived 7. Passed 10 days before her 62nd birthday. That was 1992
This was so cool to see Michele’s story, I think we are in some of the same CML groups. I have CML too and agree that you need sedation for a BMB. I’ve had two and I was not sedated, never again. Keep dancing!
I've been watching your channel for a couple of years now and have seen it grow and get better. You're a great interviewer-very empathic and you listen well and not obsessed with hearing your own voice like some folks, lol. 😊👍
I only had stage I breast cancer and needed only radiation. When the young female oncologist explained the three choices offered, I selected one in my mind and then asked her if I were her mother what she would recommend. She said the one I had decided on. (If she hadn't, I would have asked her why she would chose the other one and then decide for myself.) I was happy that she answered my direct question with no waffling or refusal to answer. Being only stage I is great and it could recur elsewhere, but I don't see myself as "a survivor." I reserve that for people who have it a lot worse as in more advanced stage and need chemo. I wasn't going to ring the bell after done with radiation, but decided at last moment that I did deserve to do that. Breast cancer may have saved my life because during diagnostics it was found I had a rather large brain aneurysm that needed to be stented by a neurosurgeon at a larger hospital. I am so lucky that all my doctors (now that my primary is an excellent CRNP) and surgeons were/are just stellar, personally and professionally.
@@bradleydurbin6784Hello Durbin6784 I had to fly to Malaysia/Kula Lumpur for work, 4 days before taking my fly back to USA I strong pain started in the Intestine and always feel FULL (even if I did not eat anything during the day), at the end I when to the Emergency room in the Court Prince Hospital in Kuala Lumpur, and the Dr. give me some pills for stomag issues but recomended me to do a blood test, I did agree to do the test she say will send results by Email in 1 day, next day nothing show out but follwing day a email arrive with the test, the blood test show a Count of white cells in the +/- 1000000 (The maximum acceptable as normal was 400000) with a observation saying "Possible Leukemia sugest testing" , the Dr. Call me and say to go to the Hospital ASAP and that they did not recomended to fly like that. that how I learn what I had. Thanks for asking and take care.
@@bradleydurbin6784 Hello Durbin6784 I had to fly to Malaysia/Kula Lumpur for work, 4 days before taking my fly back to USA I strong pain started in the Intestine and always feel FULL (even if I did not eat anything during the day), at the end I when to the Emergency room in the Court Prince Hospital in Kuala Lumpur, and the Dr. give me some pills for stomag issues but recomended me to do a blood test, I did agree to do the test she say will send results by Email in 1 day, next day nothing show out but follwing day a email arrive with the test, the blood test show a Count of white cells in the +/- 1000000 (The maximum acceptable as normal was 400000) , the Dr. Call me and say to go to the Hospital ASAP and that they did not recomended to fly like that. that how I learn what I had. Thanks for asking.
@@bradleydurbin6784 Hello Durbin6784 I had to fly to Malaysia/Kula Lumpur for work, 4 days before taking my fly back to USA I strong pain started in the Intestine and always feel FULL (even if I did not eat anything during the day), at the end I when to the Emergency room in the Court Prince Hospital in Kuala Lumpur, and the Dr. give me some pills for stomag issues but recomended me to do a blood test, I did agree to do the test she say will send results by Email in 1 day, next day nothing show out but follwing day a email arrive with the test, the blood test show a Count of white cells in the +/- 1000000 (The maximum acceptable as normal was 400000) , the Dr. Call me and say to go to the Hospital ASAP and that they did not recommended to fly like that. that how I learn what I had. Thanks for asking.
Thank you Michele for sharing your story. Your experience with your first bone marrow biopsy (BMB) was similar to mine. My blood pressure began dropping, & I was nauseated. It was tough! We left my local oncologist & went to MD Anderson, and there we insisted that I be sedated for my BMB. For me, it was a short nap, it was over, and I was ready to go have a CT scan next. FYI, my diagnosis is SLL. I look forward to hearing more of your story.
Yup! Easy peasy that way! My entire journey is on a blog, Dancing and Traveling my way through leukemia. There is a lot of yadda yadda there! Lol I hope you are doing well!
Same for me! My second one was over in a flash! Light sedation and that was that. I will never do that again! Did you mean CLL? I hope you are doing well.
@@MicheleTschirhart - I am currently on a drug holiday since March 2023. SLL is the same disease as CLL but primarily in the lymph nodes instead of the blood. Same treatments, etc. (Small Lymphocytic Lymphoma - SLL)
@@lynnbailey1948 I had never heard of it! I cannot believe how many different blood cancers that there are. Aren't drug holidays the BEST? I pray you are doing well.
@@00000714ful thank you. Wishing you the best outcome with your bone marrow biopsy. Thankfully CML is manageable...I struggle a bit with all the other issues that appeared since CML. Keep in touch as well.
I'm always dumbfounded that people often think ' how could this happen to me '. We are all human beings or animals. No one is more entitled than another. We are ALL susceptible to disease or illnesses. God Bless.
“Ask for sedation.” Ask the insurance company and also ask how much it’ll cost. Lots of people can’t afford extras. If somehow it’s considered optional, it is probably not considered medically necessary by insurance companies and the patient will pay.
Wow - you are so matter of fact yet flat out honest. I listened to you talk about how you will never have another bone marrow biopsy awake. I have my own story about the 2nd biopsy that they did (not bone marrow), at my local hospital, under conscious sedation deep within my gut. It was not an experience that I would wish on anyone. In addition to it being a traumatic experience, the results were inconclusive. Months later, the nurse supervisor @ Moffitt spent over an hour on the phone with me to eventually talk me into an awake bone marrow biopsy. (I was so terrified and had logistics problems in getting someone to drive me / basically stay with me for 24 hours so I almost skipped it. Luckily there was no bone marrow involved at that time). That supervisor actually scheduled herself to be there with me. She literally held my hand. There was just a bad few seconds. They stopped/corrected immediately. Thank goodness it went so well. The other thing I want to comment on is that you got 3 opinions before you found a connection. I am on my 3rd oncologist. She is the best of the bunch yet there is still something missing. Connection and feeling heard is SO important. AMEN to that! My journey and dx are atypical all the way around. So many twists and turns, I don't really fit into their differential diagnosis checkboxes. I keep reporting symptoms that can be related to my NHFL, yet they tell me my CT/labs are fine so my symptoms are not related to my CA. WHAT?!? How do you deal with all the uncertainties? I can relate to how so many Drs are so rushed/impatient or make you feel like what I am saying does not matter or is wasting their time. Thanks so much for sharing.
thank you for taking the time to listen! I am sorry for what you are going through. Wading through medical issues are so difficult, and my diagnosis being long term, I knew I needed to find my person. Not always easy, that is for sure. I wish you well on your journey, and hope you find someone special in your corner.
@@sharonthomson3366 Update- when I had my 2nd biopsy, I insisted on sedation and it was a much much better experience. I'll ask about the green whistle. Im being treated at UNC Cancer Center and am in remission now. CMML
Thank you so much for such an informative and thoughtful video! Pushed me to finally get a 2nd opinion from a specialist... I adore my current oncologist, but he isn't a blood cancer specialist that probably never/rarely sees a blood cancer patient! I'll also request conscious sedation for a bone marrow biopsy (if they ever do one, I've been wondering why not for 2 years now), if they sedate me for a colonoscopy they can certainly sedate me for a BMB! 🕊️🙏❤️🕯️
Those blood machines are amazing! They prolonged my dad's life with a similar or same machine and it pulled 10s of litres of water off his body when his heart, kidney and liver was failing. It's interesting that they can filter out white blood cells.
It was great hearing out Michele’s story especially the fact some people think CML just a good cancer and its totally normal they try to normalise CML though they intend well or to keep us positive but it’s important to understand TKI’s are still kind of chemo which target abnormal gene and cancer cells which lowers the immune system make our body weak and make us feel sick most of the time. Rest god know us better and how we feel.
My aunt died from CLL it was before gleevic was approved. My best friend has it she was super fatigued had no idea. Went for a physical and the dr called and said go straight to the ER. She is alive thanks to gleevic
Good information. My brother was diagnosed a year ago at the age of 80. He was always strong and a hard worker. He said in hindsight he had symptoms, but was stubborn and wouldn’t see a doctor. Doctors said he would have died if his wife hadn’t called their children. Who took him straight to the hospital.
My Dad was diagnosed with AML, Acute Myeloid Leukemia 9 years ago. He had anemia which Dr's thought was internal bleeding. After many tests the Dr said my dad had a marker for cancer. He the biopsy which they swore he was pre-cancer. My Dad was 81 in good health. Well it was full blown AML. He passed a year later. I miss him everyday. 😔
I thought by the title she disagreed with the diagnosis and explained away why she did not have it. Slightly confusing title. I hope she gets back to feeling 100%. Brave women and her story can help many. Nothing wrong with second opinions and switching. Just know some of the best docs are not the nicest and often many of the nicer ones are not the best. Clean communication however is very important as is his/her competency.
That is so very true, and when you have a lifelong cancer, you want to find a doctor that is both relatable and extremely competent! I believe I. Self advocacy and believe that more and more people, and physicians are getting onboard with that philosophy.
I am constantly surprised that people are so unprepared to see themselves as ever getting ill. I guess we think we are invincible. We are not. Learning that, we hope for the best I don't dwell on it but I am aware we all die of something. I do not know all diseases in depth and would not be happy, it takes time to assimilate the information. I would not be concerned about what the meds are doing to us but know the risks of the meds
I do understand what you are saying and am grateful for the meds that are saving my life, but the side effects can be brutal and damaging, so sometimes it is a catch 22. Take the antibiotic Cipro, which “may” and has caused permanent damage to my body. For me, the risks can be concerning. Fortunately, I am here and alive and able to enjoy life eleven years down the road.I am extremely grateful!
@@DecorTours while I use oils, and such to combat side effects, if I went holistically, only, in my treatment, I wouldn’t be around long! I am great for the treatment I have, and it was the first of it’s kind, but now being used to make other cancer treatments less lethal.
We have a 6min sally. Do not even ask you to sit to discus results. Biopsy still painfull some days (was done 2 years ago). I thought i was fine and drove home and hit a pole with extensive damage to my car.
I have CML. My first two bone marrow biopsies were awful. Done by the same doctor who I think was a sadist as they were done just with local anaesthetic. On the second one, he and his assistant were joking that I was a "good patient" compared to others on the leukaemia ward who were literally screaming in pain during the procedure. I mentioned this to my Clinical Nurse Specialist and she was horrified that I wasn't offered Entonox (gas and air) which is standard procedure, so I think he was reported to up his game and show some compassion to his patients. Here in the UK it is not particularly standard to be offered sedation for a BMB but you should be offered Entonox. Take it, it made an unpleasant procedure (I have hard bone too) so, so much more bearable. Even to the point where I was laughing at silly jokes! I just wanted to put this out there that Entonox is also an option.
I certainly would've taken anything, given the choice. I hope you are doing well, and I have on;y had the first two BMB when I was first diagnosed, thank God!
I underwent 2 bone marrow biopsies,and wasn't offered or given any anesthetic of any kind. It was very uncomfortable. Not exactly painful, but very uncomfortable.
@@davewagner5408 Surely they offered local anaesthetic, just for the drilling through the skin? Mind you, that in itself stings a bit! I had my 5th BMP just over a week ago with the same lovely doctor who insists on the patient choosing some music to listen to and told me to start on the Entonox as she gave the local. I was actually quite giggly during the procedure, only felt a slight pressure but it wasn't uncomfortable/painful.
I was given a local on the skin,but when they put pressure on to penetrate my hip bone,and when they drew the marrow out,I felt everything. It was t exactly painful,but it didn't tickle , either. And they scraped to get an actual piece of bone for the biopsy,also. The nurse showed it to me. Let's just say it was unpleasant. Necessary,but unpleasant. Id rather not do it again.@@fusspot57
I need CML ruled out because I think I have symptoms since July 5. But, my PCP is referring me to a wound specialist instead of a hematologist for a possible bone marrow biopsy. 1. Strange bruising 2. High GR% 3. Severe itchy skin 4. Bleeding under skin - petechie 5. Dark purple spots on lower leg(s) 6. Skin infections 7. Bedridden fatigue
I “finally” got a referral to oncology and my appointment is for July 15, 2024. I’m a Navy Veteran and in order to get this appointment I had to write to my Congressman and also, I now have a new PCP ☺️ right now, my fatigue is so bad that it’s interfering with my daily life, lost 15 pounds in a month (May) and got another skin infection only this time more serious (Stenotrophomonas & Streptococcus) was put on Bactrim. I currently (June 12, 2024, have cellulitis on my left arm and it’s stable but not healing and bleeds all the time. My “flow CYTOMETRY” last October 2023 was normal, however, there were noted some “abnormal WBC’s” only a few in my bone marrow called an”shift to the left.”
I did not. They were borderline serous tumors and were surgically removed. It took an entire year to recover from that surgey, and I was fairly young and in great shape! It was the worst! I am still monitored closely, as they were unable to remove all of the cells related to the tumors.
Didn't they numb it they told me they would sedate me I didn't feel any sedation but the numbing worked I felt 10 seconds of pressure it want bad I have a rare blood cancer called polycythemia vera there is no cure they just manage it
"They call it 'practicing' for a reason"? The 'reason' is plain old academic terms: practicum means "doing." Action. Vs theory or speculative knowledge. It's not because the doc is just experimenting in a trial run.
EVERY INTERVIEW I WATCH THE INTERVIEWER ALWAYS BUT ALWAYS ASK FOR GREAT DETAIL ABOUT PEOPLE HAVING A BONE BIOPSY. I DON'T KNOW IF THE SUBJECT FRIGHTENS HER TOO MUCH OR SHE'S JUST EXTREMELY INTERESTED BUT IT ALL SEEMS A LITTLE BIT ODD, IF ANYONE CAN EXPLAIN THEN PLEASE DO
My dad had bladder cancer and his first oncologist was a real pip. He ended up in emergency and met another oncologist and said to me “ gee I really liked him- very with it - just seemed to really know his stuff!” I told him - then we switch!” Dad was all oh you can’t do that - I said “ why the hell not? You get vulgar if you think the mechanic has done a poor job on your car- you mean to tell me you will sit idly by while a doctor gives you substandard treatment that will end your life? SPEAK UP MAN YOU HAVE YELLED AT ME FOR LESS! So one incredibly gifted oncologist later he went from zero to three grandchildren that he fully enjoyed till the oldest was 18. QUESTION EVERYTHING THEY WORK FOR YOU! If they have a problem with your questions and suggestions find someone else. Your are with the wrong doctor. Everyone isn’t this fortunate of course but no matter the length or outcome of your journey you should feel completely informed, un afraid to question, respected and your wishes are followed as best as possible.
![Jack Harlow - Hello Miss Johnson [Official Music Video]](http://i.ytimg.com/vi/Q86_nlRoIGw/mqdefault.jpg)
That makes me so mad regarding the bone marrow w/o sedation!! How cruel and inhumane! I have PTSD from traumatic medical experiences similar to that and from dismissive doctors. I'm so sorry for you-like the mental stress wasn't enough to deal with.
I’m 72 I would never let them do a biopsy without sedetion
I had an in office bone biopsy, it was no big deal. The dr numbed the site and I was fine.
I heard her say "light sedation" and I was shocked. I want to have heavy sedation. Total dark sleepy time (I've had an endoscopy so that's how I know).
I worked in a lab and seen so many non sedated BMB. It’s horrid to see these people in that much pain. Idly they don’t make them all sedated. No one should have to deal with that kind of pain, especially during such a traumatic time in their lives. Definitely inhumane in my opinion
They have been drilling into children's bones for unsedated marrow excision for almost 50 years for leukemia. Monstrous.
Stephanie, another excellent interview with Michelle. I learned so much from Michelle and would like to thank her for her candor and authenticity. I wish her well with her ongoing treatment 💕
Thank you, Sam. If I can help evenone person, I am grateful. Stephanie is amazing, and did an amazing job putting this together. Thank you for taking the time to watch and comment!
Unfortunately, so many cancers have symptoms that seem innocuous…cold/flu symptoms, being unusually tired, feeling “weird” or “different,” needing naps, etc. Tragically, frequently it isn’t until the bad symptoms finally show up that scares people enough to take action, and sometimes it’s just too late. This is what happened to my precious dad back in 1995, after he’d felt crummy for a year & went to the doctor repeatedly, but didn’t get diagnosed with advanced colon cancer until he began to pass blood. By the time they finally operated, the cancer had spread to his liver, but he was only 64 and in great shape so his oncologist was sure he would tolerate the treatment. Tragically the surgeon who operated on him left surgical tape in his colon during his surgery, and my dad’s experienced terrible pain for weeks. The surgeon dismissed it as adhesions, and it wasn’t until we rushed my dad to the ER because of a 103 fever that we learned he had a baseball size mass in his lower colon that had to be removed. He was operated on again (2nd major surgery in 3 weeks) and we were told about the tape. As a result, my dad’s entire system was so compromised and he wasn’t allowed to even start treatment for 3 months (4 months after diagnosis). By then it was too late. He died 9 months after diagnosis. For everyone reading this, PLEASE don’t ignore seemingly mundane symptoms, especially if they’re relentless. And, most importantly, if you don’t like your doctor find another. None of us liked my dad’s surgeon at all; he was cold, arrogant, bragged constantly, and dismissed my dad’s concerns. We just had no experience with surgeons, this particular surgeon was the lead in the department, & the fact that he might have cancer hadn’t been shared with us. Ultimately, the surgeon’s response to his failure & my dad’s death proved his character; he said, “Well, he was probably going to die anyway.”
That doctor harmed your dad. He should be sued for malpractice
See an attorney.
That is so so sad. My mother and father also died from medical negligence. It is infuriating and there is little that can be done, as they typically protect each other, and proving negligence is nearly impossible. That surgeon is horrible, and it is so difficult, when you just don’t know, to demand better. I am so sorry for your loss, your dad was far too young to die.
Lost my Dad after just 2 months Dr was useless...
I wish I had gone to the appointments with him, I am sure I would have realised this Dr ( Sooooooo full of his own importance) could not have cared less about my Dad...
My advice...
Take your loved one to the Doctors, ( however independant they might be, insist on going with them)
YOU might be the 2nd opinion, that determines a 3rd is necessary
I am so sorry for what you and your dad went through. Why are SO many doctors narcissistic a holes?! Humility should be the first doctrine of the Hippocratic Oath. THAT is how you do no harm.
My mother had cml. She was diagnosed at 54. She was going through menopause. She went to the doctor for a checkup and maybe some hormone replacement. Her blood test came back as a high white count. The doctor thought maybe she was having an infection from diverticulitis so gave her a round of antibiotic. I still remember seeing her looking at herself in the mirror and smiling that she was going to be fine. But the counts didn’t come down. Doctor sent her for bone marrow biopsy. Meanwhile she had a dream that I received a beautiful bouquet of flowers at the door for her and sat them on the counter. In the dream she saw them and they suddenly wilted. She knew the results were not going to be good. She was given 3 to 5 years and lived 7. Passed 10 days before her 62nd birthday. That was 1992
🕊️🙏🫶🕯️
I am so so so sorry for your loss. I can hardly believe that happened to your mother. How long ago was this? hugs
I am so sorry. So many people refer to CML as the "good cancer" while many still die from this blood cancer,
This was so cool to see Michele’s story, I think we are in some of the same CML groups. I have CML too and agree that you need sedation for a BMB. I’ve had two and I was not sedated, never again. Keep dancing!
Love that you're already connected! -Stephanie
Hello! So glad you enjoyed! Cool, not cool we are in the same “club”!
All cancers are tough and ongoing you never just walk away after ringing the bell thank you for sharing 💜
so very true....I guess I would just like ti be done with the ongoing daily treatment.
I've been watching your channel for a couple of years now and have seen it grow and get better. You're a great interviewer-very empathic and you listen well and not obsessed with hearing your own voice like some folks, lol. 😊👍
I only had stage I breast cancer and needed only radiation. When the young female oncologist explained the three choices offered, I selected one in my mind and then asked her if I were her mother what she would recommend. She said the one I had decided on. (If she hadn't, I would have asked her why she would chose the other one and then decide for myself.) I was happy that she answered my direct question with no waffling or refusal to answer. Being only stage I is great and it could recur elsewhere, but I don't see myself as "a survivor." I reserve that for people who have it a lot worse as in more advanced stage and need chemo. I wasn't going to ring the bell after done with radiation, but decided at last moment that I did deserve to do that. Breast cancer may have saved my life because during diagnostics it was found I had a rather large brain aneurysm that needed to be stented by a neurosurgeon at a larger hospital. I am so lucky that all my doctors (now that my primary is an excellent CRNP) and surgeons were/are just stellar, personally and professionally.
NP ugh no
I was diagnose with CML today, that why I get to this video, great Interview, grep channel , Thanks for sharing.
What were your symptoms?
@@bradleydurbin6784Hello Durbin6784 I had to fly to Malaysia/Kula Lumpur for work, 4 days before taking my fly back to USA I strong pain started in the Intestine and always feel FULL (even if I did not eat anything during the day), at the end I when to the Emergency room in the Court Prince Hospital in Kuala Lumpur, and the Dr. give me some pills for stomag issues but recomended me to do a blood test, I did agree to do the test she say will send results by Email in 1 day, next day nothing show out but follwing day a email arrive with the test, the blood test show a Count of white cells in the +/- 1000000 (The maximum acceptable as normal was 400000) with a observation saying "Possible Leukemia sugest testing" , the Dr. Call me and say to go to the Hospital ASAP and that they did not recomended to fly like that. that how I learn what I had. Thanks for asking and take care.
@@bradleydurbin6784 Hello Durbin6784 I had to fly to Malaysia/Kula Lumpur for work, 4 days before taking my fly back to USA I strong pain started in the Intestine and always feel FULL (even if I did not eat anything during the day), at the end I when to the Emergency room in the Court Prince Hospital in Kuala Lumpur, and the Dr. give me some pills for stomag issues but recomended me to do a blood test, I did agree to do the test she say will send results by Email in 1 day, next day nothing show out but follwing day a email arrive with the test, the blood test show a Count of white cells in the +/- 1000000 (The maximum acceptable as normal was 400000) , the Dr. Call me and say to go to the Hospital ASAP and that they did not recomended to fly like that. that how I learn what I had. Thanks for asking.
@@bradleydurbin6784 Hello Durbin6784 I had to fly to Malaysia/Kula Lumpur for work, 4 days before taking my fly back to USA I strong pain started in the Intestine and always feel FULL (even if I did not eat anything during the day), at the end I when to the Emergency room in the Court Prince Hospital in Kuala Lumpur, and the Dr. give me some pills for stomag issues but recomended me to do a blood test, I did agree to do the test she say will send results by Email in 1 day, next day nothing show out but follwing day a email arrive with the test, the blood test show a Count of white cells in the +/- 1000000 (The maximum acceptable as normal was 400000) , the Dr. Call me and say to go to the Hospital ASAP and that they did not recommended to fly like that. that how I learn what I had. Thanks for asking.
Thank you Michele for sharing your story. Your experience with your first bone marrow biopsy (BMB) was similar to mine. My blood pressure began dropping, & I was nauseated. It was tough!
We left my local oncologist & went to MD Anderson, and there we insisted that I be sedated for my BMB. For me, it was a short nap, it was over, and I was ready to go have a CT scan next. FYI, my diagnosis is SLL. I look forward to hearing more of your story.
Yup! Easy peasy that way! My entire journey is on a blog, Dancing and Traveling my way through leukemia. There is a lot of yadda yadda there! Lol I hope you are doing well!
Same for me! My second one was over in a flash! Light sedation and that was that. I will never do that again! Did you mean CLL? I hope you are doing well.
@@MicheleTschirhart - I am currently on a drug holiday since March 2023. SLL is the same disease as CLL but primarily in the lymph nodes instead of the blood. Same treatments, etc. (Small Lymphocytic Lymphoma - SLL)
@@lynnbailey1948 I had never heard of it! I cannot believe how many different blood cancers that there are. Aren't drug holidays the BEST? I pray you are doing well.
Very informative CML video!! I also have CML and struggles with other cancers and conditions, nice to hear other peoples journeys!!!!
So glad this resonated with you, thank you for leaving a comment! -Stephanie
hope the best rick . feel free to email me any time . i have the same thing i think . still waiting on boemarrow tests . so hope the best for you.
@@00000714ful thank you. Wishing you the best outcome with your bone marrow biopsy. Thankfully CML is manageable...I struggle a bit with all the other issues that appeared since CML. Keep in touch as well.
Hi Rick! Thank you so much for listening! I hope your journey is going well.
I'm always dumbfounded that people often think ' how could this happen to me '. We are all human beings or animals. No one is more entitled than another. We are ALL susceptible to disease or illnesses. God Bless.
Thank you for sharing your story, Michelle. You’re an inspiration ❤
Thank you, that is so kind!
“Ask for sedation.” Ask the insurance company and also ask how much it’ll cost. Lots of people can’t afford extras. If somehow it’s considered optional, it is probably not considered medically necessary by insurance companies and the patient will pay.
personally I would pay! Although it does not seem as painful for some as others.
Thank you for another video, I've learned so much from your channel.
Thank you for watching ❤️ please let us know if there are any topics that would be helpful for us to cover
So much good info in this interview. Excellent.
Glad you enjoyed it!
Thank you!
Wow - you are so matter of fact yet flat out honest. I listened to you talk about how you will never have another bone marrow biopsy awake. I have my own story about the 2nd biopsy that they did (not bone marrow), at my local hospital, under conscious sedation deep within my gut. It was not an experience that I would wish on anyone. In addition to it being a traumatic experience, the results were inconclusive. Months later, the nurse supervisor @ Moffitt spent over an hour on the phone with me to eventually talk me into an awake bone marrow biopsy. (I was so terrified and had logistics problems in getting someone to drive me / basically stay with me for 24 hours so I almost skipped it. Luckily there was no bone marrow involved at that time). That supervisor actually scheduled herself to be there with me. She literally held my hand. There was just a bad few seconds. They stopped/corrected immediately. Thank goodness it went so well. The other thing I want to comment on is that you got 3 opinions before you found a connection. I am on my 3rd oncologist. She is the best of the bunch yet there is still something missing. Connection and feeling heard is SO important. AMEN to that! My journey and dx are atypical all the way around. So many twists and turns, I don't really fit into their differential diagnosis checkboxes. I keep reporting symptoms that can be related to my NHFL, yet they tell me my CT/labs are fine so my symptoms are not related to my CA. WHAT?!? How do you deal with all the uncertainties? I can relate to how so many Drs are so rushed/impatient or make you feel like what I am saying does not matter or is wasting their time. Thanks so much for sharing.
thank you for taking the time to listen! I am sorry for what you are going through. Wading through medical issues are so difficult, and my diagnosis being long term, I knew I needed to find my person. Not always easy, that is for sure.
I wish you well on your journey, and hope you find someone special in your corner.
I had a bone biopsy 4 months ago without sedation and it was brutal. `next one I will be sedated and have someone drive me home
That’s shocking. I’ve had a dozen of them and Always offered good sedation. It was not an option. I use the green whistle it’s great.
@@sharonthomson3366 Update- when I had my 2nd biopsy, I insisted on sedation and it was a much much better experience. I'll ask about the green whistle. Im being treated at UNC Cancer Center and am in remission now. CMML
67 year old female, I had a bone marrow biopsy no sedation, no big deal some pressure is all.
Thank you so much for such an informative and thoughtful video! Pushed me to finally get a 2nd opinion from a specialist... I adore my current oncologist, but he isn't a blood cancer specialist that probably never/rarely sees a blood cancer patient!
I'll also request conscious sedation for a bone marrow biopsy (if they ever do one, I've been wondering why not for 2 years now), if they sedate me for a colonoscopy they can certainly sedate me for a BMB! 🕊️🙏❤️🕯️
no kidding!! I hope you are doing well.
Right? Seems crazy! My bone marrow biopsy was sooo painful!
Those blood machines are amazing! They prolonged my dad's life with a similar or same machine and it pulled 10s of litres of water off his body when his heart, kidney and liver was failing. It's interesting that they can filter out white blood cells.
It truly is!
It was great hearing out Michele’s story especially the fact some people think CML just a good cancer and its totally normal they try to normalise CML though they intend well or to keep us positive but it’s important to understand TKI’s are still kind of chemo which target abnormal gene and cancer cells which lowers the immune system make our body weak and make us feel sick most of the time.
Rest god know us better and how we feel.
right? people don't get that! lol
My aunt died from CLL it was before gleevic was approved. My best friend has it she was super fatigued had no idea. Went for a physical and the dr called and said go straight to the ER. She is alive thanks to gleevic
And now there are so many more options. Gleevec was a true breakthrough for CML
Good information. My brother was diagnosed a year ago at the age of 80. He was always strong and a hard worker. He said in hindsight he had symptoms, but was stubborn and wouldn’t see a doctor. Doctors said he would have died if his wife hadn’t called their children. Who took him straight to the hospital.
Oh, my goodness! Cml can get ugly if not treated, and I was super close to reaching that point. I hope your brother is doing well.
My Dad was diagnosed with AML, Acute Myeloid Leukemia 9 years ago. He had anemia which Dr's thought was internal bleeding. After many tests the Dr said my dad had a marker for cancer. He the biopsy which they swore he was pre-cancer.
My Dad was 81 in good health. Well it was full blown AML.
He passed a year later. I miss him everyday. 😔
I loved the cotton plant in the background I think I have leukemia I have all the symptoms plus nosebleeds my back hurts
Thank you! And oh my goodness,I hope you get checked out, and find everything is alright.
Please see a doctor, I pray you will be ok.
I had a bone marrow biopsy done without sedation or anesthetic mannwas that ever painful
I thought by the title she disagreed with the diagnosis and explained away why she did not have it. Slightly confusing title. I hope she gets back to feeling 100%. Brave women and her story can help many. Nothing wrong with second opinions and switching. Just know some of the best docs are not the nicest and often many of the nicer ones are not the best. Clean communication however is very important as is his/her competency.
That is so very true, and when you have a lifelong cancer, you want to find a doctor that is both relatable and extremely competent! I believe I. Self advocacy and believe that more and more people, and physicians are getting onboard with that philosophy.
@@Love2Dance48 True- hope you are well.
🙏 ❤️ 🙏
For You
Always & Forever
Great interview…love the dog too.
thanks.
They thought I had it too!! Turns Out I've had ITP for many many years!!!
What were your symptoms? How did they find out you had ITP?
I do not know what ITP is, but I hope you are doing well.
I am constantly surprised that people are so unprepared to see themselves as ever getting ill. I guess we think we are invincible. We are not. Learning that, we hope for the best I don't dwell on it but I am aware we all die of something. I do not know all diseases in depth and would not be happy, it takes time to assimilate the information. I would not be concerned about what the meds are doing to us but know the risks of the meds
I do understand what you are saying and am grateful for the meds that are saving my life, but the side effects can be brutal and damaging, so sometimes it is a catch 22. Take the antibiotic Cipro, which “may” and has caused permanent damage to my body. For me, the risks can be concerning.
Fortunately, I am here and alive and able to enjoy life eleven years down the road.I am extremely grateful!
@@Love2Dance48 ❣
Has she ever tried holistic therapies like from Hope4Cancer treatment center?
@@DecorTours while I use oils, and such to combat side effects, if I went holistically, only, in my treatment, I wouldn’t be around long! I am great for the treatment I have, and it was the first of it’s kind, but now being used to make other cancer treatments less lethal.
@@Love2Dance48 yes I meant in addition.
We have a 6min sally. Do not even ask you to sit to discus results. Biopsy still painfull some days (was done 2 years ago). I thought i was fine and drove home and hit a pole with extensive damage to my car.
I have CML. My first two bone marrow biopsies were awful. Done by the same doctor who I think was a sadist as they were done just with local anaesthetic. On the second one, he and his assistant were joking that I was a "good patient" compared to others on the leukaemia ward who were literally screaming in pain during the procedure. I mentioned this to my Clinical Nurse Specialist and she was horrified that I wasn't offered Entonox (gas and air) which is standard procedure, so I think he was reported to up his game and show some compassion to his patients. Here in the UK it is not particularly standard to be offered sedation for a BMB but you should be offered Entonox. Take it, it made an unpleasant procedure (I have hard bone too) so, so much more bearable. Even to the point where I was laughing at silly jokes! I just wanted to put this out there that Entonox is also an option.
I certainly would've taken anything, given the choice. I hope you are doing well, and I have on;y had the first two BMB when I was first diagnosed, thank God!
I underwent 2 bone marrow biopsies,and wasn't offered or given any anesthetic of any kind. It was very uncomfortable. Not exactly painful, but very uncomfortable.
@@davewagner5408 Surely they offered local anaesthetic, just for the drilling through the skin? Mind you, that in itself stings a bit! I had my 5th BMP just over a week ago with the same lovely doctor who insists on the patient choosing some music to listen to and told me to start on the Entonox as she gave the local. I was actually quite giggly during the procedure, only felt a slight pressure but it wasn't uncomfortable/painful.
I was given a local on the skin,but when they put pressure on to penetrate my hip bone,and when they drew the marrow out,I felt everything. It was t exactly painful,but it didn't tickle , either. And they scraped to get an actual piece of bone for the biopsy,also. The nurse showed it to me. Let's just say it was unpleasant. Necessary,but unpleasant. Id rather not do it again.@@fusspot57
Had local anesthesia only and to this day have never heard myself scream that loudly.
I used to have leukemia when I was 5
sounds like you got through it .
I am so glad you recovered, I pray you are doing well.
How do they do the BMB on someone with osteoporosis?
I have no idea!
I need CML ruled out because I think I have symptoms since July 5. But, my PCP is referring me to a wound specialist instead of a hematologist for a possible bone marrow biopsy.
1. Strange bruising
2. High GR%
3. Severe itchy skin
4. Bleeding under skin - petechie
5. Dark purple spots on lower leg(s)
6. Skin infections
7. Bedridden fatigue
May Thurner syndrome?
I hope you now have a diagnosis?
I “finally” got a referral to oncology and my appointment is for July 15, 2024. I’m a Navy Veteran and in order to get this appointment I had to write to my Congressman and also, I now have a new PCP ☺️ right now, my fatigue is so bad that it’s interfering with my daily life, lost 15 pounds in a month (May) and got another skin infection only this time more serious (Stenotrophomonas & Streptococcus) was put on Bactrim. I currently (June 12, 2024, have cellulitis on my left arm and it’s stable but not healing and bleeds all the time. My “flow CYTOMETRY” last October 2023 was normal, however, there were noted some “abnormal WBC’s” only a few in my bone marrow called an”shift to the left.”
I had plasmapheresis!
Did you have chemo with the ovarian tumors ? Great to see you are doing so well now 💕
I did not. They were borderline serous tumors and were surgically removed. It took an entire year to recover from that surgey, and I was fairly young and in great shape! It was the worst! I am still monitored closely, as they were unable to remove all of the cells related to the tumors.
Didn't they numb it they told me they would sedate me I didn't feel any sedation but the numbing worked I felt 10 seconds of pressure it want bad I have a rare blood cancer called polycythemia vera there is no cure they just manage it
We're looking to feature PV stories! If you're open to sharing yours, will you email me? Stephanie@thepatientstory.com
i so hope the best for you. no cure for me also i would like you to know your not alone in this .feel free to message me any time if not thats ok
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Oh, they claimed they did! But apparently it didn’t work! Yowza!
"They call it 'practicing' for a reason"? The 'reason' is plain old academic terms: practicum means "doing." Action. Vs theory or speculative knowledge. It's not because the doc is just experimenting in a trial run.
EVERY INTERVIEW I WATCH THE INTERVIEWER ALWAYS BUT ALWAYS ASK FOR GREAT DETAIL ABOUT PEOPLE HAVING A BONE BIOPSY. I DON'T KNOW IF THE SUBJECT FRIGHTENS HER TOO MUCH OR SHE'S JUST EXTREMELY INTERESTED BUT IT ALL SEEMS A LITTLE BIT ODD, IF ANYONE CAN EXPLAIN THEN PLEASE DO
Oh This Rich people who can Not believe That They could ever get anything bad
Right!😅
Such an ignorant and unnecessary comment.
You can’t really listen to this. You have to watch it because so much is typed on the screen.
Clot shot?
Happened in 2011 - so no.
I just switched drs I feel like I'm.going to die every single day.
how are you now?
I am sorry.
I just got diagnosed with CLL. Crap, I am 67 and in the best shape, health of my life! Sheesh!
I have hives itchiness blurry vision
I see Oncology July 15, 2024.
Good luck tomorrow!
@@Cremesure12 thank u 😊
How are you now
🤍 very true switch doctors and don’t hesitate if you feel like it’s not a fit or they make you feel silly for asking too many questions
Hate to say but I do "feel silly" ... Dr brushes off my questions. Making me feel like a waste of his time . New doctor hear I come.
@@deborahlanyi5535 absolutely! I just knew I had to have the right person in my corner. I am very “picky” when it comes to who I allow to treat me!
My dad had bladder cancer and his first oncologist was a real pip. He ended up in emergency and met another oncologist and said to me “ gee I really liked him- very with it - just seemed to really know his stuff!” I told him - then we switch!” Dad was all oh you can’t do that - I said “ why the hell not? You get vulgar if you think the mechanic has done a poor job on your car- you mean to tell me you will sit idly by while a doctor gives you substandard treatment that will end your life? SPEAK UP MAN YOU HAVE YELLED AT ME FOR LESS! So one incredibly gifted oncologist later he went from zero to three grandchildren that he fully enjoyed till the oldest was 18. QUESTION EVERYTHING THEY WORK FOR YOU! If they have a problem with your questions and suggestions find someone else. Your are with the wrong doctor. Everyone isn’t this fortunate of course but no matter the length or outcome of your journey you should feel completely informed, un afraid to question, respected and your wishes are followed as best as possible.