Living with Multiple Myeloma & Maintenance Therapy | Ray's Story (3 of 3) | The Patient Story
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- čas přidán 27. 07. 2024
- Thanks to Ray, who's shared his in-depth multiple myeloma story from first symptoms through 1st line treatment, stem cell transplant, and recovery. In this segment, Ray talks about living life with multiple myeloma, undergoing maintenance therapy (Revlimid + Velcade).
Videos:
1) My 1st Symptoms, Tests & Diagnosis: • Cancer Patient Story: ...
2) 1st Line Treatment : • Myeloma Treatment, Sid...
3) Living with Multiple Myeloma (& Maintenance Therapy): This Video
Full story & transcript → www.thepatientstory.com/cance...
The interview has only been edited for clarity.
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Contents of the Video:
00:00 - Intro
00:54 - Maintenance therapy regimen
03:14 - Adjusting life with a chronic illness
07:25 - Last message message to people looking for guidance
09:41 - Getting help and support from the people around you
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#thepatientstory #Multiplemyeloma #maintainancetherapy #Bloodcancer #patientstories #cancerstories #cancerpatient #cancersurvivor #cancer symptoms #cancerdiagnosis #stemcelltransplant #cancerhairloss #mmsm
Thank you for being here. I'm a little over a couple months into this journey. My mind is still all over the place. A lot of things have been happening and it seems all at once and too much at one time. I've already been getting my chemo and a lot has already been brought to light since my diagnoses. I don't have anybody to talk to except my wife and I think she's already tired of of hearing me.
Ray, I have been on my slow walk to active Myeloma since 2018. Thank you for your candor and helping me understand what is in front of me. I am being treated by my local Oncologist but also the head of the Myeloma Center at MD Anderson in Houston. My local Oncologist believes I will be in treatment before the end of the year so we will see what God has in store for me. For those who read this and do not have a relationship with Christ, please find a local church and explore how this rich experience can provide additional support during this journey. Much love to you Ray!
@Bradhansonwrites Thank you for sharing what you're going through. I would love to personally talk to you about your myeloma experience if you're up for it. If so, please write me stephanie@thepatientstory.com. Either way, so glad you are in great care! -Stephanie
Ray, I’m a lymphoma survivor (so far) and had thought I had my advanced degree in all things cancer. I gotta say, you opened up new ways for me to think about things and get more outside of myself. I really appreciate your thoughtfulness and candor, and wish you all the best.
You two are incredible humans. Grateful to have your voices on our platforms ❤️ -Stephanie
Thanks, Luis, I greatly appreciate your kind words. You're not just a lymphoma survivor, you're a warrior and a hero in our community. Keep up that fight, brother, and if I can ever do anything for you - or, if you just wanna chat - just let me know!
@@RayHartjen
Ray,
Thanks, and likewise! Your story really has made a difference for me in terms of engaging with my own life and the world around me. Keep up the struggle!
@@luisvera5362 You too, my friend. We'll lean on each other and move forward, one step, one day, at a time. Take care; be well!
It's real good that you had a caregiver in your home already and someone you could at least talk to you about this while you're going through it. My treatment starts soon and I'll just have to turn the radio up higher.
Thanks Ray & Stephanie for this 3 part intro- right when I need it!
Thank you Stephanie for this important series and Ray for sharing. Having cancer is hard work: physically, emotionally and spiritually. I have endometrial cancer and like Ray, cancer has not only taken away things from my life but has added. There is more awareness, more softness, more gratitude. And yes, sometimes there is fear and sadness. Great to have a community - like this online one Stephanie created - to share. Wishing you alle the best. Lots of love from Amsterdam ❤
Cee Cee, thank you so much from the bottom of my heart for leaving these kind words and for sharing your own experience. I would love to connect with you to share YOUR story if you'd like to - we don't have resources for endometrial cancer and we definitely should. No expectations at all, but you sound like someone who would inspire many others :). If you do, please message me (stephanie@thepatientstory.com). Sending you big hugs! -Stephanie
You’ve got mail :)
Thank you, Cee Cee. Stay strong, be well, and if there's ever anything I can do for you and your tribe, please let me know.
Thank you Ray, I am a new Multiple Myeloma patient June 22, 2022. This was great information!
Vicky, thank you for your kind words. It pains me to welcome you into our club - it's my sincere hope we can make the club so exclusive that it ceases to exist. If there is anything I can do for you and your peeps, even if you just want to chat, please do let me know. I will be here for you, Vicki. Stay strong, be well.
@@RayHartjen I am so new to this, I did not realize how much is ahead of me. It is daunting for sure. I also have chronic heart failure and so far a transplant is not an option for me. I am walking and trying to strengthen my heart. I had never heard of Multiple Myeloma before this diagnosis. I struggled with depression the first 2 months trying to process the information I had. There is clearly so much more. I read a book that really helped me. “Be Water My Friend” by Shannon Lee. It is not about dealing with illness, it is about dealing with obstacles in your life. I will be water and calmly flow around my obstacles. I am journaling as well. It really helps to write my thoughts and then close the book. Your insight gave me a lot to think about tonight. But at least it won’t keep smacking me in the head from behind.
@@VikiAnderson Be water, my friend. You are strong!
Thank you Ray and Stephanie for this insightful and very helpful series of interviews! Ray you are so generous, insightful, positive, kind and smart. You and your family and friends seem like wonderful human beings, I'm glad you're in the world. Stephanie, your work is important and benefits so many, thank you!
Thank you so much, Marina. Your kind words just brought tears to my eyes. I'm not crying, you're crying! :) If there's ever anything I can do for you and yours, Marina, please do let me know. It's takes a village #PunchTodayInTheFace
What a great guy! Thanks for sharing your story Ray.
The best...so informative, thought provoking... thanks! To hear your experience and ideas , SO helpful!
Thank you, Deborah! Be well, stay strong!
Such a helpful video. great and much needed perspective.
Thank you, Amber. Take care; be well!
Thanks for sharing your story. Means a lot! All the best, Ray!
Thank you. I appreciate your good wishes. And, if there's anything I can do to help you and yours, please do let me know.
Thank you.❤
Thank you Ray...Best of heath to you.....
thanks Ray!
It's my pleasure, Michelle. Together, we're all stronger! #PunchTodayInTheFace
@@RayHartjen so agree. 😄
You are awesome 👏
Thanks, Caroline - your words are most appreciated. If there's every anything I can do for you, just holla. It take our entire community!
Does anybody know of a multiple myeloma program online where we can speak to each other or share directly?
Does Ray have a CZcams channel and if so what is it?
Hello, Annette. I do have a CZcams channel - I think you can just click that cheesy looking photo of me rockin' a Movember mustache. Please don't judge :)
@@RayHartjen thank you
I might be facing this and for me, it sounds like the "new normal" sucks. I don't see any quality of life.
I have no help just my 11 year old dog toy poodle 😢@lorraineamicothemakeupartist
Thank you 😮I’m prepared for what’s down the road ❤@lorraineamicothemakeupartist