CAR-T Cell Therapy: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Sep 17, 2018

Welcome to the CAR-T Cell Therapy group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people who have experience with CAR-T cell therapy or are caring for someone on CAR-T cell therapy. There are so few people who have experience with this new cancer immunotherapy. Together we can learn from each other, support one another and share stories about living with cancer and coping with the challenges of treatment.

Let’s chat. Why not start by introducing yourself? When did you or your family start therapy? How are you doing today?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

Colleen Young, Connect Director | @colleenyoung | Aug 7 7:30pm

In reply to @aalietz "Looking for CAR-T treated patients and their experiences with subsequent side effect" + (show)

Welcome @aalietz. I moved your post to the introduction thread of the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy support group https://connect.mayoclinic.org/group/car-t-cell-therapy/

@aalietz, I look forward to learning more about you. Are you a candidate for CAR-T cell therapy?

aalietz | @aalietz | Aug 7 6:08pm

Looking for CAR-T treated patients and their experiences with subsequent side effect

anthea29 | @anthea29 | Aug 3 12:49pm

In reply to @loribmt "Hi @anthea29, I think we all get stuck in our own headspace for a time after..." + (show)

Thanks Lori! Wise advice. I have worked at keeping a positive attitude all along and do feel it has helped me with healing.

Returned on day 30 and will return to them on day 100 to BMT but visit my oncologist (or nurse practitioner) every week for now. They are all part of my team.

Lori, Volunteer Mentor | @loribmt | Aug 2 6:18pm

In reply to @hanya "HAHAHA 😂🤩I love the bus joke !! You are so right ! Thank you for encouraging..." + (show)

Anna, now you have me laughing! I think the member you’re referring to is @dirtycowgirl. Does that sound familiar? Her name made me smile too. Memorable!

While it’s fine to contact members with personal messages, keep in mind that we’re an online forum where information shared among the entire group can be helpful to so many people! Ope, now I sound like my 3rd grade teacher…if you have something to say, share it with the class! 😂. Well, you get the drift.
And watch out for those busses. 🤣

hanya | @hanya | Aug 2 3:23pm

HAHAHA 😂🤩I love the bus joke !! You are so right !
Thank you for encouraging and coming statements !! I am very much a realist! Like to know what the facts are but certainly believe that no doctor can predict how much time each of us is given !!
Lori I texted a friend on secure site but can not find if she responded! Maybe she chose not to share personal details! I gave her a brief rundown on what my experience was and is .
She stated she had PV WHICH DEVELOPED INTO MF ! She had a funny handle like cow poop or similar! Anyway, maybe I will run into the i formation!
I find that friends or families can not comprehend the impact of any of theses MPN BLOOD CANCERS OR MALIGNANCY
SO AGAIN !! Thank you so very kindly! Anna
If you come across any one who needs to connect with me , feel free to give them my information!💕anna

Lori, Volunteer Mentor | @loribmt | Aug 1 10:26am

In reply to @hanya "I was phlobotomized many times! I took HU FOR ALMOST TWO YEARS!! Reduced need for nasty..." + (show)

Hehe I’m no angel…ask my husband!! 😇😂 It sounds like you’ve hit a sweet spot with the Jakafi dosage keeping your blood numbers steady! It can take some trial & error & fine-tuning to find the best dosage for each patient. We’re not ‘one size fits all’ when it comes to medicines and treatments.

The BMB will allow your doctor to check the health of your bone marrow. With MF, the usually spongy marrow becomes scarred and fibrous which can interfere with normal blood cell production. So a sample of the marrow tissue and blood cells directly from the source of the blood manufacturing site can give a clear picture to your doctor. It can also help the doctor determine the extent of any changes.

If the Jakafi has been working fine for you and your numbers are remaining steady then I would think, at least in my experience, that it’s encouraging. I’d put those thoughts of ‘how much time do I have’ out of my head and keep living life like ‘they left the gate open’, because no one knows how much time they have left. Heck, any of us could be hit by a bus…with no warning but a horn.
While there’s life there’s hope. But, just to be safe, look both ways when you cross a street. 😄

hanya | @hanya | Aug 1 9:40am

In reply to @loribmt "Good morning, @hanya. Thank you for such a sweet reply. Having gone through and survived my..." + (show)

I was phlobotomized many times! I took HU FOR ALMOST TWO YEARS!!
Reduced need for nasty phlebotomy but did not help burning skin ! Spleen did not decrease and blood numbers were still high !
Started taking JAKAFI! About a year ago! Took 10mgs twice daily! In four five months! It crashed my numbers down below minimum range ! Became fatigued and anemic!! Doc reduced JAKAFI BY HALF !
Taking 5 mgs twice daily!
Controls skin burning! Keeps all numbers steady !
Now ! Up to me now when I go back to YALE TO CONFIRM MF 🥵needed eye surgery so waited ! For BMB . My understanding is that my treatment will not change even if MF IS CONFIRMED with BMB !
My QUESTION IS ! Does BMB GIVE CERTAIN PROGNOSIS?? Another words , how much time do I have !!? Going to my local onc/hem in few days !
Lori !! Thank you again for your prompt response
You are an ANGEL

Lori, Volunteer Mentor | @loribmt | Aug 1 8:07am

In reply to @hanya "Thank you Lori for what you do as a volunteer!! None of my doctors have discussed..." + (show)

Good morning, @hanya. Thank you for such a sweet reply. Having gone through and survived my own blood cancer odyssey gave me the opportunity to pay it forward. As with so many other members here, we’ve ’walked the walk’ and in the unique position of being able to offer support and hope where we can. ☺️

It sounds like you have a great team of doctors at Yale. Having a specialist in MPN/MF is a huge advantage so that you get the right diagnosis and treatment. They’ll do their utmost in keeping you healthy so you can watch your grandsons grow up! What a special incentive for you to keep moving forward and staying positive! Our attitudes can make an enormous difference in how we cope with the challenges tossed at us.
Wishing you only good news on your upcoming BMB! ☺️
Please let me know how everything goes! I didn’t ask before, but have you been on any treatments for your PV?

shop516 | @shop516 | Jul 31 5:16pm

thank you for those encouraging words, you really hit the nail on the head.
we go through so much just to stay alive and then, its like, ok see ya, go live your life. wait, what? how do i do that ?
but I will look forward to getting my "AH HA" moment and thank you.
I go every month for blood work and every 3 months for PET scan.

hanya | @hanya | Jul 31 5:16pm

In reply to @loribmt "Hi @hanya. At this point in time, CAR-T has not been approved for the treatment of..." + (show)

Thank you Lori for what you do as a volunteer!!
None of my doctors have discussed BMT ! I have read much information about the process and potential benefits!! Indirectly, I am under impression that I am not a good candidate! First , my age ! Huge spleen, enlarged liver ! And other serious issues like coronary artery disease, high blood pressure! I am praying for 8 more years to see my grand sons grow up !! Have next oncology appointment in few days ! Going to YALE FOR FORTH BMB to confirm MYELOFIBROSIS!
Already saw MPN PV AND MF SPECIALIST AT YALE !
Thank you again !! Stay well

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