1. < Blood Cancers & Disorders

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.

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stankent | @stanleykent | Dec 12, 2021
In reply to @cdwilm27 "Hello Coleen and Stan. I had my labs drawn last Friday, They are still fairly good...." + (show)
@cdwilm27

Hello Coleen and Stan. I had my labs drawn last Friday, They are still fairly good. H&H is 13.3 and 40.5 ( both of these up from last labs WBC is now 4.7 but was 6.4 on 11/16. I feel great and have still been trying to cut sugar out of my diet and drink plenty of water as well as eat as much protein as I can. I'm also increasing the iron I eat as well.
I will be getting another CT to measure the size of my spleen this week.
I am trying to maintain a good attitude but have my good and bad days. I will be seeking a second opinion on 12/17 at Mayo in Phx. I have 2 more Rituximab infusions, that will make it 8 total by 12/20. Good Luck with your SMZL journey. I believe this medication is helping me, at least at this point in time.

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It is interesting to see how the infusions are improving your health and like to hear comments on diet and exercise. Also of interest to me is to see the lab test changes. During my watch and wait, my doctor has labs every three months and seems to be watching for a drastic change. I was diagnosed in 2019 but blood tests back to 2017 started to show a steady change from normal. Total WBC went from 9 to most recent test 11.3, The Lymphocytes from 4.4 to 6.4. Platelets from 166 to 91. But Hemoglobin and Hematocrit have stayed around 14.5 and 44.5 the whole time. Spleen is growing and at 16.8 cm.
From everything I've read, there are a few variations of SMZL, and the standard of care seems to be evolving as well. All are things to discuss at the Dr. appointment.

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reneemp | @reneemp | Dec 12, 2021
In reply to @stanleykent "Renee. It is good you are not having to travel far for your care. Will your..." + (show)
@stanleykent

Renee. It is good you are not having to travel far for your care. Will your doctor keep you on watch and wait?

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Right now we are watch and wait. I have an appointment in January to review with my doctor. He did say he would monitor every 6 months. I already see him annually to monitor for pancreatic cancer (I have a gene and family history + breast cancer survivor) which is how the enlarged spleen was identified.

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stankent | @stanleykent | Dec 13, 2021
In reply to @pkh "Hi….am grabbing all the info I can on this SMZL. Rather daunting I think. I see..." + (show)
@pkh

Hi….am grabbing all the info I can on this SMZL. Rather daunting I think.
I see a couple of you are getting 2nd opinions, where? And are you doing the treatment
First?
I have been advised by my hematologist to wait to start any treatment after I get another
CT scan and labs done, probably after 1st of year.
I do not have any bothersome symptoms other than My energy level is not where I would like
It to be. Am a 68 yr old, fairly active female, grandmother of 4 active grands.
Some think I should get another opinion at Mayo, Rochester. I have doctored with a consulting
Dr from Utah and a retired hematologist from Rochester who have both concurred on the diagnosis yet one wants to start treatment the other is wanting ‘wait and see’……I am a little confused.
Can anyone give me heir experience in diagnosis and 2nd opinions or even 3rd opinions?
Any info is greatly appreciated. 💁🏻‍♀️

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I think you should do what is required to be as comfortable as possible with your diagnosis and care team. When this started for me, the mental strain of delayed appointments, and waiting was rough. Desperation for answers is why I called Rochester. They diagnosed my SMZL and also found lung cancer and have had subsequent surgeries. I am very pleased with the care I have received. If you have questions let me know.
Another thing to consider about a second opinion is with your Insurance or Medicare plan. Contact them if you are concerned about coverage.
I hope this helps.

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1 reply
HTRmoon | @pkh | Dec 13, 2021
In reply to @stanleykent "I think you should do what is required to be as comfortable as possible with your..." + (show)
@stanleykent

I think you should do what is required to be as comfortable as possible with your diagnosis and care team. When this started for me, the mental strain of delayed appointments, and waiting was rough. Desperation for answers is why I called Rochester. They diagnosed my SMZL and also found lung cancer and have had subsequent surgeries. I am very pleased with the care I have received. If you have questions let me know.
Another thing to consider about a second opinion is with your Insurance or Medicare plan. Contact them if you are concerned about coverage.
I hope this helps.

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That is a great idea!
Really do not want to go thru all the tests again or bone marrow biopsy…..getting in touch with insurance provider would answer many questions!
Thank You!

Be well. 💁🏻‍♀️

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1 reply
stankent | @stanleykent | Dec 14, 2021
In reply to @pkh "That is a great idea! Really do not want to go thru all the tests again..." + (show)
@pkh

That is a great idea!
Really do not want to go thru all the tests again or bone marrow biopsy…..getting in touch with insurance provider would answer many questions!
Thank You!

Be well. 💁🏻‍♀️

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You would have to talk with the facility, but typically, if your tests are recent, you wouldn't need to repeat them. With your authorization, many facilities can share electronic records . Or hand carry a paper copy. Regarding your CT exam, ask them if they just need the radiologist report or if they also require the images. Diagnostic mages such as CT are large files and think they are more difficult to share electronically. Mayo put my CT exam on a CD and I hand carried it to the "second opinion" Oncologist.
Stay in touch

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1 reply
cdwilm27 | @cdwilm27 | Dec 15, 2021
In reply to @stanleykent "You would have to talk with the facility, but typically, if your tests are recent, you..." + (show)
@stanleykent

You would have to talk with the facility, but typically, if your tests are recent, you wouldn't need to repeat them. With your authorization, many facilities can share electronic records . Or hand carry a paper copy. Regarding your CT exam, ask them if they just need the radiologist report or if they also require the images. Diagnostic mages such as CT are large files and think they are more difficult to share electronically. Mayo put my CT exam on a CD and I hand carried it to the "second opinion" Oncologist.
Stay in touch

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Thanks for the information. I will ask for the CT scans to be sent.

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1 reply
stankent | @stanleykent | Dec 21, 2021
In reply to @cdwilm27 "Thanks for the information. I will ask for the CT scans to be sent." + (show)
@cdwilm27

Thanks for the information. I will ask for the CT scans to be sent.

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Hi, just wondering how the treatments are going, health changes, and the appointment at Mayo. Am wishing you the best and Happy Holidays to everyone.

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HTRmoon | @pkh | Dec 21, 2021

The one symptom I have every 2-3 months, is stomach pain. I feel like I have food poisoning, nausea, but no vomiting. My spleen feels like it is the size of a watermelon for a couple days, then it all goes back to normal or as normal as an enlarged spleen can be.
Just wondering, is this a symptom that should be shared with the hematologist at the time it is happening or if it persists longer than a day or 2?
Any sharing of others with this symptom is appreciated.

Oh and Merry Christmas to All! 🎄🎄

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 24, 2021
In reply to @pkh "The one symptom I have every 2-3 months, is stomach pain. I feel like I have..." + (show)
@pkh

The one symptom I have every 2-3 months, is stomach pain. I feel like I have food poisoning, nausea, but no vomiting. My spleen feels like it is the size of a watermelon for a couple days, then it all goes back to normal or as normal as an enlarged spleen can be.
Just wondering, is this a symptom that should be shared with the hematologist at the time it is happening or if it persists longer than a day or 2?
Any sharing of others with this symptom is appreciated.

Oh and Merry Christmas to All! 🎄🎄

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HTRmoon, I think symptoms, especially persistent or recurring symptoms, should be reported to your hematologist and cancer team. I might report it whether you're experiencing now or not, take notes when it happens again and report it then too.

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stankent | @stanleykent | Dec 25, 2021
In reply to @pkh "The one symptom I have every 2-3 months, is stomach pain. I feel like I have..." + (show)
@pkh

The one symptom I have every 2-3 months, is stomach pain. I feel like I have food poisoning, nausea, but no vomiting. My spleen feels like it is the size of a watermelon for a couple days, then it all goes back to normal or as normal as an enlarged spleen can be.
Just wondering, is this a symptom that should be shared with the hematologist at the time it is happening or if it persists longer than a day or 2?
Any sharing of others with this symptom is appreciated.

Oh and Merry Christmas to All! 🎄🎄

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My spleen is pushing on my stomach and have discomfort continually, It seems to be getting a bit worse over the past year, and even a bit more after a meal. But does not change periodically as you have indicated. I agree with Colleen about recording symptoms and communicating with your doctor.

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