I’m currently going through treatments for MM. The one thing I learned is don’t allow what you read on google control your thoughts about the cancer. Listen to your doctor and go from there.
I'd like to hear your story. My aunt passed in 2014 just 3 weeks after finding out she had pancreatic cancer. I miss her so much. I hope you stay healthy and happy ❤
My husband died of mutiple Myeloma on September 17th of 1997, He had bonemellow transplant from his brother(4 matched) but his liver enzyme was too low(was 50 when he died, normal people has 4000)... My heart goes out to all the cancer paiients. One day if/when I have money I will spend for cancer patients.
My condolences to you and your family Harmoni. Thank you for sharing. As a community of patients and patient caregivers, we are stronger together! #PunchTodayInTheFace
My dad had multiple myeloma , not sure if it was a by product his kidneys started to fail and ended up with sepsis and died 4 days later . But he did live into his 80s I don’t remembered how long he actually had cancer probably 5 years he had chemo shots one a week during his last year
@@markgriffith2473 Condolences for your loss, Mark. I know fellow patients sometime encounter kidney issues, and a friend of mine is nearing the need for dialysis if things don't change around quickly. Currently, my doctor is happy with my liver and kidney functions per the data from my frequent blood tests.
I'm sorry for your loss. Cancer is a horrible disease to deal with. I lost an older brother to cancer in 1974. He was 24 when he passed on. Also lost an ex boyfreind to leukemia in 1981. He was 34 when he passed. I'm currently fighting stage 3 cervical cancer that spread to my left side of my neck. I dread going back to chemo. But l have a great support sysyem in my daughter and my 2 grandkids.
I was diagnosed with stage 3c colorectal cancer in late 2019. I did not have a recommended colonoscopy when I turned 50. My best advice is get your colonoscopy when you’re due for one. Colorectal cancer is highly avoidable. Colonoscopies are not as bad as people make them out to be. And certainly preferable to surgery, chemo, radiation and post-treatment side effects. This thought ties in to what Ray said about seeing your physician on a regular basis and taking responsibility for your health.
Couldn't have said it better - thank you for advocating for colonoscopies. They can be daunting but, as you described, can save us from dealing with far worse experiences like cancer treatment. -Stephanie
@@csnr1227 it was my fault. I put it off figuring the risks were low. Which they are generally speaking. I had no family history. And I believed they weren’t pleasant procedures - they really aren’t that bad. Plus there were many other challenging events occurring in my life and I was distracted by them. Then I developed symptoms which forced me to take action. Which lead to my diagnosis. So it’s all on me. This of course assumes that the beginnings of the disease would have been discoverable when I was 50.
I have had 2 colonoscopies and they were painless. The prep has come a long way and isn't as bad. You just go to sleep and wake up and talk to the doctor.
I'm really disappointed in the whole hospital system for my diagnosis. I've had Five bacterial pneumonia's since 2019, about every five months and nobody seem to know why but nobody cared to figure it out. Until I asked for a blood test to see if we can stop it. And then during that time, I had broken my T 12 and T8 vertebrae without doing any more than lifting heavy plates into a cupboard and bending over, so at that time I was diagnosed with osteoporosis. but my doctor never put any of that together and I had to find out the diagnosis myself by asking for a blood test and when I finally did get someone to review my tests it took me a month before I could get a first visit with oncology. I feel like I'm swimming upstream.
No doubt, you need better doctors. Patients need health care advocates. Keep advocating for yourself, and enlist those around you to help. Good luck, and keep up the fight. As a patient, you know your body better than anyone!
Everything is hurry up and wait with cancer. It took 11 months before surgery was done to remove a tumor for my spouse. Chemo and radiation was done first.
Ray, you are a super cool person, and very articulate about your emotions and subjective processes. I admire that internal strength. Hope new therapies work for you. Keep the faith and inform us.
Thank you, Erdem - your kind words mean a lot to me and I greatly appreciate it. I enjoy sharing my story because it gives me an opportunity to connect with patients and patient care givers, and I want to bring us together as a community. We're strong badasses on our own; together, we're even stronger! #PunchTodayInTheFace
My oncologist gives me an IV med before my bone marrow biopsies, I've had MM for 10 years, treatments have stopped working, I'm now looking at Car-T cell transplant!
My father was dx'd at 82 (now 87) decided to see an MD who is also a homeopathic doctor. He kept him healthy with various treatments, supplements and the like but just told him he no longer has any treatments to help (they knew this day would come). Now, he will be starting some kind of infusion x 8 weeks. Am very hopeful it will help. Thank you so much for sharing your story. You have given me hope and I wish you all the best in your journey.
Tired today…maybe I just am not sleeping well. I know I was awake at 2:30a last night. Maybe I finally nodded off about 3a, but bottom line is probably knowing I actually have cancer and how invasive that is in my thoughts. It never really leaves my thoughts. It is always on the peripheral daring me to have a normal day where I don’t have to have that invader tapping me constantly on my shoulder. Diagnosed with multiple myeloma June 22, 2022. I learned a new word today watching these videos…Scanxiety. I will be water and calmly flow around my obstacles.
Well said, in a nutshell right there. Been dealing with breast cancer for over a year now, you summed things up well. I watch lots of just simple no real topic RU-vid to try to keep my mind occupied lol. Traffic cams, people streaming walks or driving, till the wee hrs. If I sleep I do, if I don’t I don,t, I try not to let the lack of or get to me easier said than done as you know. …resuming my Disney character meet and greet:), cheers, be well.
I found the mental fight against cancer to be exhausting. In two weeks, I was just flat out tired. For me, it was - and still is - about compartmentalizing. What do I need to do today to 1) fight my fight, and 2) live my life. Then, I try to get to it. Wear today out and go to sleep looking over at tomorrow and let it know it's next on the list.
I fell backwards in my wheelchair (ambulatory wheelchair user) and hurt my head and neck. I was taken by ambulance to the hospital. I was taken for CTscan and X-rays. The doctor comes in and asked if I had a family history of cancer and specifically Multiple Myeloma. I said yes to both. My brother died of non-small cell lung cancer at 48 years old (wasn’t caught until it was stage 4), my daddy has non-small cell lung cancer which was caught early because he has COPD and has had 2 radiation treatments since 2018. Maternal grandfather and paternal grandmother had cancer. My Aunt had multiple myeloma and I knew what lytic lesions were. Many aunts, uncles, and cousins with cancer in multiple areas. The doctor told me that I had a concussion but she wanted to refer me to a Hematologist/Oncologist because there were some lytic lesions. I went to that appointment and the doctor was very nice and wanted to run some tests that would happen in stages depending on the results. I found The Patient Story channel and have been binge watching. I’m so thankful that people are sharing their cancer story. I feel prepared for my next appointment and have a list of questions.
@@ThePatientStory Unfortunately, I’m still waiting. There was a delay in getting a scan that postponed an appointment. Then I’ve had to cancel my last two appointments because of a family emergency and now my husband, son, and I have COVID. I appreciate you and the others for sharing their journey.
If they can give section for 5 minute esophageal scope , they can sedate for painful procedures……demand it. Having cancer and procedures is terrible enough there is no need for unnecessary pain
I am a registered nurse and i don’t drink ( vegan ( always been very healthy . But last july i came home from work ( fatigue . Vomiting and i thought it was a virus . Doctors did a lot of test . Relating to my gut health . But i have told the doctors i would have a rash at night , it would disappear next morning . Very weak . Vomiting , urinating all the time . After 5 months a different doctor did more test and i was diagnosed with multiple myeloma , i have had bone marrow biopsy . Renal biopsy . They held of on treatment and just monitoring me . But I noticed if i feel unwell . Pain i always panic is the myeloma on the move .
The site for my bone marrow biopsy weeped for weeks afterwards. I was diagnosed with smouldering myeloma at relatively high risk and I haven't had any treatment since. And that was in 2019.
God loves you Sir, please go and get a recent blood test, see what the status of the Smoldering Myeloma is at, and that way it puts you in control of your own health, instead of waiting for something to happen to you. God bless❤ be strong, have faith.
I had the bone marrow biopsy in the hospital out patient and I had twilight sedation as well and didn’t feel a thing. Best way to do it. Very expensive though. Luckily my insurance covered it all except $350. Would do it this way again
Thank you for encouraging annual physicals. I am a life insurance underwriter, and you would be surprised how many people don't go to the doctor... It can be the difference between living a long life and getting a Stage 4 diagnosis!
Is the bone marrow scan the only way to diagnose cancer? Is there no other way? It sounds so tortuous! What about a full body M.R.I. with contrast? Its so hard to navigate this health care tangle to make certain you make the best choices, despite often not knowing all options and few of the health experts are willing to fully inform you honestly. They just want to rush you on and out, assembly line style and refer you for test after invasive test that they rarely even look at, once done. Sorry about the rant.
Definitely ask to be sedated! That is your choice. They just automatically sent me to an imaging center, which is also where they send you for a colonoscopy. They sedated me and I didn't remember anything and I didn't feel a thing. The nurse said they wouldn't think about not doing it without sedation!
There are a lot of tests that provide hints. But, the only way to really know what's going on is to take a definitive look under the hood (the bone marrow biopsy). Not going to lie to you: it's not fun. However, some people don't seem to mind it too much. I've had two. The first was pretty painful. The second one, conducted over at Stanford, actually incorporated a drill. It sounded horrible. But, the pain was less. I also think the pain might be related to the amount of cancer cells in the bone marrow. The more cancer cells, the more painful the withdrawal. As my second biopsy came after several months of my induction therapy, there was less cancer in my bone marrow. Be strong, keep fighting! Take care; be well.
I just had my bmb. Because of this video I knew to ask my hematologist for sedation. I was completely out. Pain afterward was minimal. Waiting on the results. Thank you for these videos. Because of them I knew to ask my hematologist for a kappa/ lambda ratio test. The results were very off. Which led to the bone marrow biopsy
@@Prachi..75 My biopsy was negative! Kappa lamba ratio is now normal. My heme. thinks it was an inflammatory response that threw everything off. Im also very iron deficient so that may have had something to do with it
My 12 year old daughter had a bone marrow biopsy. The nurse used a technique to relax her with meditation. My daughter said that she never felt a thing. She was drifting off to her happy place and said she ‘enjoyed‘ the experience!
@@kathysherman501 yes, and fortunately it turned out that she had a chronic platelet condition that she will have for her whole life but that won’t shorten her life. Such a relief.
Ive had two bone marrow biopsies and it was extremely painful each time. The doctor performing the biopsy offered a shot to relax me, music, and massaging my shoulders to relax me. Bottom line it was painful. I have another bone biopsy in a few months and its not something I’m looking forward too.
I had one at an image center where they do colonoscopies and they put me out by IV and I asked him about doing it without any sedation and they said oh no that's too barbaric. We always do it this way.
Great video, after my cancer scare in January this year that was just down to wrong protocol by the general practitioner I noticed some itching at my bottom when out. I found a toilet and wiped myself to find a spot of bright red blood! Imagine the shock but I remembered I have had haemorrhoids in the past as my dad did. Nothing since until recently on wiping after an itch more red blood. I wondered if it was the lockdown and working for the past two years from home sitting down. So, imagine coming across this helpful video, I will make a call to my GP. As a family unpaid carer of an adult with complex needs it is always his needs I have attended to but I will get this checked for reassurance.
I reduce my anxiety and empower myself with research on legitimate sites such as NIH, American Cancer Society and professional medical journals. I formulate questions to ask my oncologist. I find I am able to process what my oncologist says much better than the first time I saw her. I am also able to challenge her treatment plan if I don’t feel comfortable with it. I got a second opinion and was able to change her mind. Cooperative risk management is empowering.
What to do when you have many symptoms, have severe anemia and are just exhausted, have been to a hematoligy/oncologist who was an a**, and kinda laughed me off, and my GP says "I read too much"? I feel something is off, I also have blood and protein in my urine and back and neck pain. Any thoughts? Thank you for any help
You need a new doctor. Don't ever stop being an advocate for yourself. Nobody knows you like you do, so if you don't feel right, try to see some other practitioners. If multiple doctors agree, then maybe you've got a clean bill of health. But, if your blood counts are low enough as to be anemic, then a hematologist needs to get to the bottom of the root cause. There could be many. But, you need to know.
My diagnosis was in March 2022 for plasmacytoma and I'm in the heat of the battle. My bone marrow extraction went well and my anemia is being managed with Iron. My first checkup with oncologist post diagnosis is in July, and I'm feeling better after colon surgery and tumor removal. So many emotions were very similar - thanks for sharing and prayers for survival 🙏. Feed the soul throughout.
Thank you for sharing, KL, as well as the kind words - they're greatly appreciated. Stay strong, and be well. If there's ever anything I can do for you, please do let me know. #PunchTodayInTheFace
Hi Ray, I just finished watching your story. Thank you for sharing so much about yourself and your experiences. It's very helpful to hear directly from people what they have experienced. About 17 days ago (3/23), I had my first appointment with a Hematologist, and was shocked to be asking myself, am I having the "You have Cancer" talk with a doctor right now?! We didn't know for sure, but after a bone marrow biopsy, and a PET scan, I got confirmation 4 days ago (4/5) that I have Multiple Myeloma. My next appointment is 4/20 where I think we'll go over the treatment plan. So it's safe to say I'm brand new to this and my head is spinning! Your story has definitely helped me realized what kind of treatments may be in store for me. Thanks again!
Tom, it pains me to welcome you to the club. I'm sorry to hear about your diagnosis. But, now that you're in the club, we'll move forward with our treatment, together - know that I'm in your tribe! Good luck moving forward with your treatment. They'll be good days, and there will be bad - it's to be expected. But, know that you're not alone, and that you are stronger than you know. And, please, if there's ever anything I can do to assist you and your caregivers, please let me know! Good luck, Tom! -RAY
I’ve had about 8 bone marrow biopsies. The discomfort is directly related to the skill/experience of the person doing it. I only get local sedation, BUT I ask for LOTS of it, way more than normal dose. And I have the person doing it talk me through every step, so there’s no surprises.
did they find out what you had after all the biopsies? my dad has just been told he needs multiple biopsies as they are not sure what he has after the first biopsy. I'm really worried.
@@west9383wow, my husband’s doctor practically knew what he had before biopsy. The biopsy and 24 urine test was to make sure his assumptions was accurate. Hope they found out what your dad has.
I wish you and your family well. As you pointed out, medical technology dealing with cancer seems to be positive and advances as time goes by. I wish you get all the help you need to fight back and be strong. Having a great support system as you do with family and friends is so very valuable!! It's everything.
My husband has multiple myeloma. Was feeling great. Regular CBC test came abnormal twice in his life, at 47 he had colon cancer, had a surgery, cut it out and was good till November 2023, diagnosed with multiple myeloma. He barely felt any discomfort with bone marrow biopsy. He’s had 11 chemo treatments as of now and listening to Ray and comparing, I think he has the same genetic aggressive one. My hubby’s mom had something similar, if not the same, she passed a year ago today at 87.
My initial blood test was slightly anemic. Then, we followed it up for a couple of tests to confirm that I was still, in fact, anemic. At that point, the tests became a bit more specialized, to first rule out things like possible internal bleeding. After that, it was a referral to a hematologist. From there, tests were taken that started down the road to a diagnosis of something that ends in an 'a." In my case, multiple myeloma.
My first test was slightly anemic. Therefore, we conducted another CBC to confirm the result. It too was slightly anemic, but a confirmation of the first. In fact, I think it was slightly more anemic. That second result began the journey to a final diagnosis.
@@paularodger8779 The road to my diagnosis started with low red blood cell count. As such, I didn't pay any attention to my WBC counts when going through my diagnosis. As I recall, my WBCs were well within range; not high, but normal, in range. The problem was my HGB, or hemoglobin, which originally popped at 11.9. A couple of months later, it it 11.5. Then, a month after that, my HGB had fallen to 10.3. Once I started my induction treatment, the Revlimid, Velcade and Dexamethasone or RVD treatment, then we began to look at the drugs effects on my WBCs. As I recall, they stood up to the challenge up until my stem cell transplant. Since my stem cell transplant, having WBCs below range has been the new normal for me. A couple of times a year, my WBCs pop above 3.3. Despite the low WBC count, my neutrophils are often above the minimum range of 1.2.
I have all the symptoms of MM and I’m going to see a Haematologist next week. I’ve been having a strange cluster of symptoms since new year and they are quickly getting worse. I’ve also been diagnosed with low platelets, low haemoglobin and high blood pressure. My kidneys are declining, fatigue, numbness in feet and fingers, bone pain etc
Unfortunately, no Susan. Multiple myeloma is incurable at this time, but treatable. I take Revlimid, a capsule, at a much smaller dose in maintenance therapy than I did in my induction therapy immediately after diagnosis. I take that capsule daily for three weeks, then take two weeks off. I also get a Velcade injection in my abdomen every two weeks. My medical team harvested enough stem cells from me to do two transplants, so that's a future possibility. There's also a promising treatment called CAR-T Cell therapy. The idea behind multiple myeloma treatment is to do a course of treatment for as long as it's effective. Then, the hope is that there is a new treatment, like CAR-T, for example, to try. So far, my doctor is happy with my progress thus far - it's been over 1,000 days since my transplant. But, every two months I meet with her to review my blood tests, and it's always a bit nerve-wracking :)
@@Livetoeat171 the stem cells are taken from the blood stream in a process called apheresis. Not painful at all. They take blood, skim off the stem cells, and return the blood to the body. The prices takes about four hours, and you can't get up and move away from the machine. All in all, it's probably the most enjoyable part of a stem cell transplant :)
@@RayHartjenI pray you are doing well. Whats the update on everything? My mama goes for a bone marrow biospy tomorrow and I am anxious bc I am praying it's not cancer and I don't want this barbaric procedure to traumatize her.
They absolutely can sedate a patient. They use the same medicine for a BM biopsy that they use for a colonoscopy. I wouldn’t recommend doing it any other way.
A great many patients get diagnosed with multiple myeloma when they suffer bone fractures from unlikely sources. Like, getting out of bed, taking a step or two, and suffering multiple compression fractures of vertebrae. That's not normal, of course, and it's a signal that something is going on. When others like me have abnormal blood values, doctors will look to see the cause. M protein spikes and the like are indicative of many cancers. To accurately diagnose multiple myeloma, you need to take a peek at where it resides - inside the bones, first in the marrow, and then left uncheck, into the bone itself. Thus, the biopsy.
