Cancer Patient Story: My 1st Symptoms, Tests & Diagnosis (Multiple Myeloma) | Ray (1 of 3)

Ray is a self-described family man and musician. He doesn’t hold back in our 3-part conversation about his multiple myeloma experience.
In this first part, he describes his first symptoms, the process and timeline of learning his cancer diagnosis including getting through bone marrow biopsies, managing through “scanxiety” or the wait for results, and processing the final diagnosis of multiple myeloma.
Thank you for sharing your story, Ray!
Videos:
1) My 1st Symptoms, Tests & Diagnosis: This Video
2) 1st Line Treatment : • Myeloma Treatment, Sid...
3) Living with Multiple Myeloma (& Maintenance Therapy): • Living with Multiple M...
Full story & transcript → www.thepatientstory.com/cance...
The interview has only been edited for clarity.
Join Our Community:
Website : www.thepatientstory.com/
Facebook: @ThePatientStory
Instagram: @ThePatientStory
Twitter: @patient_story
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Contents of the Video:
00:00 - Intro
00:51 - Tell us a little about yourself
01:42 - What was the progression of the symptoms?
05:57 - Realizing symptoms could be a red flag for cancer
06:52 - Experiencing a bone marrow biopsy for the first time
08:58 - Advice on getting through the bone marrow biopsy
13:01 - Dealing with "Scanxiety"
15:57 - Processing the diagnosis
19:30 - Discussing myeloma treatment options
21:58 - Breaking the news to loved ones
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#thepatientstory #Multiplemyeloma #Bloodcancer #patientstories #cancerstories #cancerpatient #cancersurvivor #cancer symptoms #cancerdiagnosis

[@ThePatientStory]

We’d love to hear from you: what was the biggest lesson you learned in your own cancer diagnosis? Leave us a comment below!

[@marianadazdyova5089]

Wish you good luck and stay strong, it really matters. Take care.

[@RayHartjen]

@@marianadazdyova5089 Thank you, Maria. Strength in numbers - together, we're stronger. Take care; be well!

[@roys8003]

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.

[@superbob1548]

luv to share my story.. 10 year Pancreatic Cancer Survivor... Whipple Surgery.. 2012 God Bless

[@violets6113]

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 ❤

[@direfranchement]

May God continue to bless and keep you.

[@patriciacruz6485]

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.

[@harmoni4499]

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.

[@RayHartjen]

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

[@markgriffith2473]

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

[@RayHartjen]

@@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.

[@nicolepalachicky8033]

Sorry for your loss.

[@battybethc8061]

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.

[@redparrot53]

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!

[@venusserafico1161]

Have you already tried stemcell transplant?

[@marimarxuach7180]

Praying for you

[@roch145]

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.

[@ThePatientStory]

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

[@minkumishra280]

Stephenie as I have seen from ur interviews that you are also a cancer survivor....so I want to see your story of fighting with cancer

[@csnr1227]

Why weren't you referred for a colonoscopy at 50?

[@roch145]

@@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.

[@GalinaUlavana]

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.

[@erdempekoz5164]

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.

[@RayHartjen]

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

[@erdempekoz5164]

@@RayHartjen What a great answer. Count me in please in that community.

[@RayHartjen]

@@erdempekoz5164 You are in! Side by side, together we stand!

[@EEE-ij8lv]

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!

[@VikiAnderson]

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.

[@summerz8867]

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 KZbin 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.

[@RayHartjen]

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.

[@Livetoeat171]

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.

[@RayHartjen]

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!

[@MF-ty2zn]

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.

[@kathymandala9456]

God bless you Ray! You are so well spoken! You have a great disposition!

[@PersonalIncomeSolutions]

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.

[@RayHartjen]

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

[@joancahill4446]

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 .

[@andreah6379]

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.

[@RayHartjen]

Thanks so much, Andrea! Happy New Year!

[@lorrainebaldridge568]

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.

[@RayHartjen]

Good luck, Lorraine, and stay strong. If I can ever be of assistance, please do let me know.

[@ThePatientStory]

Lorraine, so sorry for the late reply. I hope you've been able to find the answers and the care you deserve. Sending you hugs. -Stephanie

[@lorrainebaldridge568]

@@RayHartjen Thank you

[@lorrainebaldridge568]

@@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.

[@pinkflamingo5320]

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.

[@PersonalIncomeSolutions]

Thanks for posting. I related to so much, and found our responses to be very similar. Thank you!

[@courgette3401]

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]

What a blessing. I’m so happy she had a great experience❤️‍🩹

[@RayHartjen]

I'm glad she had a happy place. I sure tried to get to a happy place, but my journey was rather rudely interrupted by the PA and nurse :)

[@courgette3401]

@@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.

[@roys8003]

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.

[@Livetoeat171]

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.

[@marimarxuach7180]

Praying for you

[@DCFunBud]

What a convoluted explanation.

[@alexg1668]

What a great guy and thanks for those thoughtful questions too.

[@RayHartjen]

Thank you, Alex - your kind words are much appreciated!

[@timlittle1286]

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.

[@RayHartjen]

Keep getting your check ups, Tim, and stay on top of it! Good luck; be well!

[@timlittle1286]

Not good but I am just waiting to die because the medical system won't help me.

[@heidipucci9078]

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.

[@patrice19791]

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

[@RayHartjen]

Good luck, Patrice. Keep up that fight. Take care, be well!

[@patrice19791]

@@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

[@nana2five790]

I had a bone marrow biopsy earlier this year. I was put into a twilight sleep- didn’t feel anything. The only way I would do it.

[@molive9246]

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

[@janwillard6708]

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.

[@west9383]

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.

[@pinkflamingo5320]

@@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.

[@sonnysnavarro6860]

Good advice

[@jodiebird1551]

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.

[@RayHartjen]

Yeah, get that check up, Jodie. It's probably nothing. But, if it is something, better to start remedies early than late. Good luck!

[@tomreed456]

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!

[@RayHartjen]

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

[@Whatt787]

Sorry to hear this but new MM updates on KZbin are better and better, avg lifespan has been increased 3 to 4 fold since the late 90's

[@bojigirl5672]

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.

[@RayHartjen]

Good insight, Bojigirl - thanks for sharing!

[@jaelancaster5506]

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

[@heidipucci9078]

I still had pain on the hip from the BMB for a month.

[@mtio2807]

I’m going through cancer treatment alone. It’s incredibly depressing

[@poonamsharma5732]

I want to be interviewed. I did.BMT is sept 2023. I am 52 years & my cancer is in remission.

[@maureenhannivan8043]

Like I mentioned my sister had mugus but my other sister has mugus marker. Is it hereditary?

[@kandacepatterson7965]

Hoping to get a petscan 4 of my dads sisters had this

[@amyjenkins9187]

What did your blood work look like?

[@scottiehall8695]

Why can't you be sedated into twilight sleep for something as painful as a bone marrow biopsy?

[@justagirl5593]

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

[@justagirl5593]

@@Prachi..75 I have cancer but they think it’s either gastric, pancreatic or gallbladder.

[@artandrea5348]

So sorry to hear, prayers for you!

[@Whatt787]

Sorry to hear this, please keep us updated, how low were your platelets and hemoglobin, and how old are you?

[@interrupted9671]

Best Of Luck!

[@venusserafico1161]

Sorry to hear, what is your diagnosis?

[@smallbeginning2]

May I suggest you use multiple 5 second and breaks instead of 3 minute ads that must be skipped manually please

[@BJ-bc7sl]

Are there doctors that will put patients to sleep during a bone marrow biopsy?

[@VikiAnderson]

Yes, I had a twilight anesthesia, I did not feel anything.

[@Livetoeat171]

Absolutely! You I have that option don't let them tell you you don't!

[@suzangriffey8001]

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

[@Lacenmilk01]

You could get a referral for a new specialist

[@RayHartjen]

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.

[@suzangriffey8001]

Thank you to all for the input. I appreciate it very much! So sorry to hear of everyone's cancer stories. I will keep you in my prayers!

[@bookbeing]

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.

[@Livetoeat171]

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!

[@RayHartjen]

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.

[@direfranchement]

For this particular cancer yes, the bone marrow biopsy is necessary.

[@bookbeing]

@@RayHartjen thank you.💙

[@marycombs6517]

My calcium is slightly elevated and my PA wants me to go have additional tests. I am not anemic and nothing else exact elevated calcium level.

[@Whatt787]

Good you're not anemic, 70 per cent of MM diagnosis starts with anemia

[@venusserafico1161]

I have MCH that low and neutrophil and low monocytes does it my indicates MM?

[@karenbruestl9688]

Was the blood test a very anemic level or just slightly??

[@RayHartjen]

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.

[@RayHartjen]

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.

[@RayHartjen]

@@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.

[@maureenhannivan8043]

My sister has myeloma, they couldn’t find what was wrong with her till her kidneys crashed. She’s on full dyalsis now

[@RayHartjen]

Please do pass along my best to your sister, Maureen, and if there's anything I can do for either of you, please do let me know.

[@beinghuman12349]

Hi How is she now

[@heidipucci9078]

I can't believe they still do BMB in offices and without anesthesia...geez

[@virginiaolson1368]

No way will I submit to a local injection for a bone marrow test period. Mine is in 6days. I will be totally unconscious 😊

[@dianerooney6012]

Medcare won’t pay for a CBC, you’ve to ask for it.

[@blueangel1414]

Why can't they put u to sleep for biopsy?

[@AB-nf3mw]

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.

[@amoferia]

why have the bone marrow? There is no cure for it, doesn;t it pop up some place else?

[@coimbralaw]

Where did you get that garbage prognosis? From the University of KZbin? Don’t talk about things about what you have no idea

[@RayHartjen]

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.

[@susanbowman1566]

So are you "cured" of myeloma now after your stem cell transplant?💖

[@RayHartjen]

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 :)

[@susanbowman1566]

@@RayHartjen. Thank you for your reply, I realized it probably was a silly question, the aim is to stay healthy for as long as you can. Best wishes ❤

[@Livetoeat171]

@@RayHartjen How do they get the stem cells from and is it very painful?

[@RayHartjen]

@@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 :)

[@Tubigirl]

​@@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.

[@IamParalegal]

One reason people get so emotional when telling their family is because you don’t want them to hurt. 🥹

[@leaveittolefty]

no one skipped a beat when i told them-it was “oh bummer” . very lonely feeling

[@RustyShakleford1]

​@@leaveittoleftyI'm so sorry I know the feeling of a neglectful alone family we have to be our own best friend and advocate

[@lorraineamico42]

Didn’t get diagnosed yet but was said a little multi myeloma now feb 14 th will get a answer 2024 69 years old @lorraineamicothemakeupartist ❤😢

[@lorraineamico42]

God bless you ❤@lorraineamicothemakeupartist