How I Got Diagnosed with Cancer | Beth's Multiple Myeloma Patient Story (1 of 5) | The Patient Story
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- เผยแพร่เมื่อ 28 พ.ค. 2024
- Beth dives into her myeloma experience and how she has managed to live her fullest life with the disease in this five-part series. (Time codes below for easier video navigation.)
She was just 29 years old and the mother of two young kids when she was diagnosed with multiple myeloma. After first-line treatment of radiation, chemotherapy, and a successful stem cell transplant, she lived 12 years with no sign of myeloma.
When the pain returned, eventually, more scans showed the myeloma was back. She was diagnosed with a relapse a few years later. All told, she underwent 193 sessions of radiation & 9 different treatments before her oncologist told her the myeloma was no longer responding to the three main classes of drugs used (refractory myeloma). That's when he offered a new combination: selinexor (Xpovio), bortezomib (Velcade) & dexamethasone.
Full story & transcript → www.thepatientstory.com/cance...
Thank you to Karyopharm for its support of our educational program. The Patient Story has full editorial control of our content. The interview has been edited only for clarity.
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Part 1: First Symptoms
0:00 - Beth's Story Summary
3:06 - Introduction: Tell us about yourself
5:08 - What finally got you to go to the doctor’s office?
6:34 - How did you advocate for yourself as a patient?
9:20 - When did you first think of cancer?
Part 2: The Multiple Myeloma Diagnosis
9:45 - Getting “The Call”
13:10 - It took longer to diagnosis because you didn’t fit the “myeloma profile”
15:00 - How long were you in the hospital?
Part 3: Processing the Diagnosis
16:22 - Getting your prognosis
17:02 - Dealing with the possibility of a “terminal” diagnosis + having kids around
18:53 - How did you break the news of the myeloma diagnosis + what support was most helpful from other people during this time?
19:48 - How did you handle the cancer diagnosis with young children?
22:27 - A silver lining to the shifting household roles
22:49 - “Let people help you”
I am 29 and in the process of possibly getting a diagnosis right now. This video has given me more comfort than anything I've read or seen so far
Hey , how did this turn out for you ? What happened ?
@@neshasummers20 I ended up not having it, thank goodness ❤️
Thank you for sharing this . I am currently in testing for multiple myeloma due to abnormal bloodwork. The oncologist says my bloodwork is indicative of it and so he ordered 18 x-rays and more bloodwork and after that a bone marrow biopsy. I'm so scared. I'm 40 and was not expecting this at all. I'm a single mom and i just want to be ok for my kids. Beth Ayen is very inspiring and this gave me hope. thank you!
Nora, so glad to hear that this was helpful! We are about to publish another MM series, with a young woman, as well. Hopefully these will help you, as well, but thinking of you and sending you big hugs. -Stephanie
Stay optimistic. My aunt age 55 at the time had breast cancer that spread to her brain. She was told she had 3 months to live back in 2002. She's still alive today in 2023.
Beth seems like such a wonderful + friendly lady.
To be diagnosed in 1996 + still be here to share her story seems too good to be true. I've heard that one's personality, in a way, can determine the success of the treatment - the "will to survive".
I can see Beth's very positive attitude. I want to "Congratulate" her for her amazing story + let her know that she has done so much to convey to all cancer patients that
there are people who survive this disease for decades + that Beth's story proves that.
Wishing you many more happy years Beth to you + your family.
Thanks for sharing your story!
We will make sure Beth gets this message - she is indeed, an incredible person and I am so blessed to have gotten to meet her! Thank you, Juliette :). -Stephanie
Such a fighter and inspiration
❤Blessings & Love for you Beth , you are an amazing strong woman…🙏🌹❤️🌹🕯
Thank you Beth. Praying for you.
Thank you for sharing your experience with Myeloma, Beth. I find it very informative and insighrful. God Bless you! 🙏💕😊👍
I have issues that no one is listening to me. I also have Sjogren's syndrome and smoldering gammopathy
I have the exact same thing. Not diagnosed w djogrens, but have all the symptoms. Declining Ig's way below normal. Was told to see a psychiatrist. Are you ok. Do you have any new news on yourself?
Seems like no one will investigate what's going on with me.
Hope to hear from you.
thanks Beth!
God your videos are so good. Gives me so much hope.
Are these leasions hard to see on xray?
So the tumor was holding up her spine where the vertebrate was eaten into??
Hi can anyone help me... recently I have developed a lot of heaviness of my chest n pain all throughout my ribs n I'm unable to sleep on any side n my right hip joint is sore since an yr or so n my right humerous is v v painful ...besides I had acute pancreatitis 9 months back which resolved on med but now shows inflammation again my stomach aches mildly no nausea weight loss or vomiting, my kidneys r normal according to USG, I'm anarmic n was treated for chicken pox 6 months back n for pulmonary kochs three yrs back...my head ache is only when I sleep for an hr or so but gets normal once I wake up, my bp has shouted up to 206/168 on antihertensives n tramazac pain killers now ...my pain is now much reduced after 5 days but still aggravates with mild exertion let me know pls I'm 45 now
So sorry to hear about all you've been going through. We are not a medical advice site and would encourage you to seek medical attention - you deserve to get your questions answered now.