splenic marginal zone lymphoma treatm... - Non Hodgkin's Lym...

Non Hodgkin's Lymphoma Friends
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splenic marginal zone lymphoma treatments

lukidude
lukidude

Hi, new to site. Does anyone know of the next line of treatment if rituximab and ibrutinib has not worked? Is there something that can be taken for an elderly person? And I have seen some posts about tongue ulcers and ibrutinib; is this a common problem and what is best to treat? Is there any research trials for this type of lymphoma? Where and when are the support group meetings in the community?

Happy New Year to all

16 Replies
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Shar0n
Shar0nVolunteer

Welcome to NHL Friends and Happy New Year ! I am on w&w for Follicular Lymphoma so I don't have an answer to your question but hopefully someone here will give their experience.

21happy21
21happy21
in reply to Shar0n

Hi Shar0n are you still on watch and wait? How long have you been on watch and wait? I was diagnosed with same thing April 11, 2019. Thanks

Shar0n
Shar0nVolunteer
in reply to 21happy21

Yes, as of my last checkup at the end of May, I'm still on w&w - next appt. in November. Hopefully, you will not have to have treatment for a long time.

Ofatumumab Is Active and Safe in Patients with Relapsed/Refractory Splenic Marginal Zone Lymphoma (SMZL)

ash.confex.com/ash/2018/web...

Happy New Year.SMZL is only 2-7% of the total of other 70-80% sub-types. The next line treatment has to a mutual decision by the Oncologist and the patient preference. I highly recommend University Ctr. for the consult. Also, there are around 500 clinical trials going on for CAR T CELL THerapy nationwide. Your loved one can be a good candidate if this can be offered to him/her by the oncologist. Contact me for the support group. We are about 5 people informally sharing our experiences with each other. If joining this group helps I would be more than happy to add him/her to our group.

lukidude
lukidude
in reply to sunsetssr

Hello Sabtahis, thanks for that info. is the group in USA, UK or somewhere else?

sunsetssr
sunsetssr
in reply to lukidude

Morning. It is in the U.S. We are in different states but communicate thru email for more convenience.

Jackieyar
Jackieyar
in reply to sunsetssr

I have splenic marginal zone lymphoma and would like to join your support group. I’ve had numerous anaphylactic reactions to Rituxan. I’m scheduled to began Gazyva the middle of this month. Has anyone had this treatment and what side effects did you experience?

sunsetssr
sunsetssr
in reply to Jackieyar

Morning,

Will contact you soon.

lukidude
lukidude
in reply to sunsetssr

does any of your group experience very high levels of white blood cells? Now 165,000? Is this normal on ibrutinib?

sunsetssr
sunsetssr
in reply to lukidude

Hi, High WBC, Ab. the lymphocytes are a typical characteristic of SMZL. Dr. Susan O, Conner from the University of Irvine commented in one presentation a while ago; talking about very high WBC with no major symptoms. I heard from a lot of experts that numbers by itself are not a major concern if the patient doesn't experience major signs and symptoms. Pls, consult with your oncologist about this matter. With healing thoughts for your loved one.

lukidude
lukidude
in reply to sunsetssr

Thanks Sabhatis, that is re-assuring.

HOW LONG HAVE YOU BEEN TAKING IBRUNINIB?

САР Т - Zuma 5 trial

lukidude
lukidude
in reply to Val60

Thanks Val, is that the same as CAR T? Or did I mishear a video I watched? Is there just the one drug of this similar name?

Sorry it was typo. CAR T treatment . I know people who recently went through the trial treatment.

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