Want to connect with others with Splenic B cell Marginal Zone Lymphoma

Posted by April @sabtahis, Jul 24, 2016

There are over 80 different subtypes of lymphoma . This is a slow growing lymphoma.I'd like to know and communicate with any patient if possible.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

HTRmoon | @pkh | Nov 30, 2021

In reply to @loribmt "Yes! This is wonderful news. After reading your previous post with the comment about this being..." + (show)

Thank you for encouraging words!
Because of COVID 19, have not been active as I was……5 days a week working out plus walking. Plan is to go back to working out
…especially walking outside or on treadmill.
My blood counts were low back in October, will have new labs
Within next couple weeks.
The dr I have been working with will be leaving come Dec 30, so will
Be assigned to a new dr come Jan. Feel that will be a good move.
Don’t think much will change.
Anyone ever done a Clinical Trial at Mayo? Dr suggested this however we live 150 miles away, just does not seem feasible.
New saying at this house…’Motion is Lotion’!

Lori, Volunteer Mentor | @loribmt | Nov 30, 2021

In reply to @pkh "Thank you for encouraging words! Because of COVID 19, have not been active as I was……5..." + (show)

Oooo love the phrase…Motion is Lotion! That’s so true! It’s like the ol’, Use it or Lose it, but this is smooother. ☺️

reneemp | @reneemp | Dec 1, 2021

In reply to @pkh "Just returned from follow up with first hematologist dr., he has told me I do not..." + (show)

That is great news! I am in a wait and see pattern too. Have a bone marrow biopsy today so hopefully I will continue in this holding pattern. Wishing for a cup of coffee 😀.

Lori, Volunteer Mentor | @loribmt | Dec 1, 2021

In reply to @reneemp "That is great news! I am in a wait and see pattern too. Have a bone..." + (show)

Renee!!! Good luck BMBX today!! Snag a pack of Lorna Doone’s for me please! ☺️ Here’s a send off Hug!

HTRmoon | @pkh | Dec 1, 2021

In reply to @reneemp "That is great news! I am in a wait and see pattern too. Have a bone..." + (show)

Hope your Bone Marrow biopsy goes well!
Also am keeping good thoughts going your way for a great diagnosis
After biopsy.
I am still doing the treatment however waiting til January to forge ahead.
Keep in touch!

stankent | @stanleykent | Dec 1, 2021

In reply to @loribmt "Renee!!! Good luck BMBX today!! Snag a pack of Lorna Doone’s for me please! ☺️ Here’s..." + (show)

I hope the biopsy goes well and lab analysis will be in your favor..
On an SMZL general note, what I am wondering, what event(s), or test (s), triggers going from watch and wait to IV therapy? So would like to hear from anyone about their experiences, doctor discussions, lab results, etc I plan to have this discussion with the Hematologist, but would like to hear it from your perspective as well. Thanks

reneemp | @reneemp | Dec 2, 2021

Thanks for the kind wishes. All went well thanks to the sedative. I do not remember a thing. The blood draw and iv poke were worse than the biopsy - I have small veins so I’m it takes a few tries.

I have the same question as Stan. What are the indicators and/symptoms that move one from a holding pattern to active treatment?

Enjoy the day all. Renee

stankent | @stanleykent | Dec 2, 2021

In reply to @reneemp "Thanks for the kind wishes. All went well thanks to the sedative. I do not remember..." + (show)

Another topic for everyone with SMZL. If you are willing to share, how are you dealing with Covid 19? I have SMZL watch and wait and my hematologist feels that I am immunocompromised and encouraged vaccinations. I've had 3 Moderna shots in Feb, March, and October. I have not had Covid, Have you had Covid while on watch and wait or during/after infusions, the severity of illness? or anything else you can comment on. Thank you

reneemp | @reneemp | Dec 3, 2021

In reply to @stanleykent "Another topic for everyone with SMZL. If you are willing to share, how are you dealing..." + (show)

I have had three Pfizer vaccines and no Covid. I practice safe behavior yet my partner is a flight attendant which has been and is cause for concern.

cdwilm27 | @cdwilm27 | Dec 3, 2021

In reply to @stanleykent "Another topic for everyone with SMZL. If you are willing to share, how are you dealing..." + (show)

I had the Pfizer immunizations in Feb, March, and booster in October. I have not had Covid. I just returned from Thanksgiving in California and flew in and out of Burbank airport with no issues so far. I do wear a mask everywhere I will encounter the public in a closed, indoor space.
I used to love to sit in the aisle seat while traveling by plane, but now I choose a window seat and turn my body to face away from people while I read a book.

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