Non-Hodgkin Lymphoma Survivor Story: Mantle Cell Lymphoma | Shari's Story, Part 1 (Diagnosis)
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- Опубліковано 8 чер 2024
- Shari's story has three parts: 1. Diagnosis 2. Treatment 3. Reflections. This is Video #1 for how she got diagnosed. The other two videos are linked below! (Time codes listed also below)
Background:
Shari was bicycling hundreds of miles a month and loving life when she was suddenly diagnosed with a rarer subtype of non-Hodgkin's lymphoma, mantle cell lymphoma or MCL. As is the case with most people who find out they have MCL, she was already stage 4. The difference is she was very young in getting the diagnosis at just 50 (median age of diagnosis is around 70).
The great news is there are many treatment types with great success rates. After chemotherapy and a bone marrow transplant, there was no evidence of disease. 15 years later, Shari is still in remission!
Her full story: www.ThePatientStory.com
Thank you for sharing your story. My husband was just diagnosed with B Cell Mantle Cell Non Hodgkins Lymphoma. He’s waiting for an appointment with an oncologist in our city. He had blood work taken about 6 weeks ago and his test results were good. But he had some sinus issues and during that time 5 weeks ago the left side of his neck swelled up. Our doctor sent him to an ENT. The ENT had a CT Scan done which showed 5 lymph nodes in his neck were very swollen. He had 10 biopsies done last Thursday. We got the results yesterday afternoon. I am scared for my husband. We have been married 43 years and I don’t want to lose him. We have trust in our Lord and Savior to get us through this difficult journey with cancer. Your testimony has given me hope for my husband. Thank you.
🙏 my mother was diagnosed with mantle cell in 2013, found during a mammogram. She had chemo, which was tough but got through it and went into remission for 11 years. Just recently it has reoccured. So here we go again. She is 86 now. She is not having symptoms. 🙏 for successful treatment. They are suppose to have more treatments now. Wishing your husband good luck and successful treatment. ❤
@@karenwistner3770 hello, I’m so sorry your Mother’s Mantle Cell has returned. It was great to hear that she was in remission for 11 years. That also give us hope that John will also be able to get into remission. He hasn’t started his 6 months of chemo yet. They determined that He does not have the TP-53 mutation and his blood work has always been so good and he feels so good and can still work. But his chemo will begin next week or the week after. They have told us his mantle cell is slow growing and is considered indolent for now. But we know all that can change in a hurry. We trust in the Lord to get him through the 6 months of treatment. The first treatment will be for two days in a week or two. They will inject him with Bendimustine and Rituximab for 30-60 minutes on day one and again on day two. They want to see how his body reacts to the chemo. But the next month (he will have one per month) will be much more aggressive and will put him in the hospital for 4 days. They will infuse him every 12 hours with Cytarabine and Rituximab. We know this one will be tough but God is good and will see him through it. The Lord has given my husband much peace with his diagnosis. The Lord has a plan for each one of us. He tells us this in His written Word (the Bible) in Jeremiah 29:11. He also has the power to heal those who believe and trust in Him. This is a difficult year for us. But again, we are not alone in this journey. And your Mother is not alone either. I pray that your Mother will be able to get into remission again. I also pray that the Lord Jesus will fill her heart with peace and I pray that for you as well. God bless you both with strength, joy and peace during this difficult time.
It was useful to hear the bilateral bone biopsy showed positive in one side and negative in the other. I've only ever had it done one side at a time. (3 done so far) Interesting!
Awh, thank you girls! Bless you sweetheart. For sharing your story ❤️✌️😊
What a lovely lady😊🌹
Thankyou for being you! May i pls ask why, for you they chose allo over auto? Did u have a p53 deletion, mutation or blastoid? I ask because you and I have similarities, i have been told to do an allo in light of my p53 deletion. Hoping to find a good donor! Much love and respect to you, the interviewer and this channel.
I feel since covid the Healthcare system isn't handled as well. It's quite disappointing. Keep seeking for the right doctor. Roswell Park in Buffalo, NY used to have an outstanding reputation, not anymore. The doctors keep leaving. Im wondering what is going on?
Hi Shari I was diagnosed with MCL in February of this year. My doctor recommended a “watch and wait” approach as I am not showing any symptoms. I am at stage 4 with cancer being present throughout the body. After watching your video I am no longer comfortable with this approach, actually I don’t think that deep down I was comfortable with this but I am uncertain about wher to go from here. I am in Idaho falls and there does not seem to be any specialists in the area. Do you have any advice for me.
No that's not right, metastasized cancer isn't something you wait
especially Mantal Cell Carcinoma. Please move very quickly.
Go get a second opinion at OHSU in Portland, Oregon if at all possible. It’s probably the closest top cancer center even remotely near to you. They have a great cancer team there based on a friend’s experience who has multiple myeloma.
Go and start treatment. My mother had a wonderful doctor treating her for mantle cell 11 years ago when there was not a lot of treatment options. He did the watch and wait until it hit stage 3, then said we need to get on this. It just reoccured. Our wonderful doctor has retired. Hoping to find a doctor like that again. Don't be afraid to advocate for yourself. It seems since covid a lot of health facilities and dragging their feet.
Oh and my husband has had no symptoms other than the enlarged neck.