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

Judy, sadly that’s par for the course with some of our blood diseases…fatigue. And with that drop in your husband’s hemoglobin, albeit small, it can make a difference in the oxygen level in his breathing along with the amyloidosis.

I’m sure this is so frustrating for both of you. It’s hard being the caregiver with trying to be the cheerleader. I hope your husband finds some positive activity he can do daily to keep pushing forward. Truly, I do understand and it’s easy to want to just give up. But it’s so vital to always look forward to something on a daily basis. We need longterm goals even when we don’t feel there’s a future!
I remember when my mom was diagnosed with kidney cancer many years ago. She mentally gave up! I did my best to encourage her but she was so pessimistic that there was no hope. Well, there was hope! And at one point, I even got a little miffed because her doctors had said that, though inoperable because of her age, she could possibly have several good years! So I ended up telling her that it’s her choice…she can either choose to abide in this sad, morbid existence which in which she is already on her ‘death bed’ or she can choose to live until she does pass away. Guess what! My mom chose life and had several really fun years resuming all activities she’d given up because she felt she was a goner. Our mental attitudes can really make an enormous difference in determining our daily lives.
I hope you’re finding some goodness in every day too. ☺️

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I am not a doctor, and you can certainly Google the two - but I have Splenic MZ lymphoma - which means it is located in the spleen. Hope that helps.

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Hi Sally,
I'm glad you were able to find the right oncology practice, well worth the drive I'm sure.
I have to go back to my oncologist 6/28 for follow up. I will have labs done prior to this appointment which will determine next steps. Overall, I am feeling great. I'm just hoping there is not disappointing news regarding my labs. I have a summer full of small trips planned and I really don't want to change anything if possible.
Where are you located?
I miss my old home which had an open fence to a greenbelt and lots of animal/bird sightings. However I don't miss the stress of living with my husband. My new home is much smaller, but much easier to clean and lots of friendly people nearby.

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Update - as of June I am in remission. I have read up a lot on my type and it appears it will be a course of constant monitoring and tests and possible relapses and then more treatments but my life will be extended. Hope you are doing well. @sally2022

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Sally, It is great to hear you are in remission. Always nice to hear the positives!
I wonder what determines the quantity of Rituximab infusions. From this forum, I have heard weekly regiments from 4 to 8 and have heard of some "maintenance" infusions added through the year. I suppose everyone responds differently, but is interesting. I think I'm getting closer to this treatment.
As mentioned I was diagnosed with chest fluid (Pleural effusion) and removal ( thoracentesis ) in April and in now again in July. At the moment they are uncertain of the cause for the fluid, but leaning toward SMZL as the cause.
It's complicated because of my lung cancer surgeries in 2019 and 2021, my SMZL since 2019, or fluid is caused by something else. . ......another struggle to deal with.....

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Hi Stan, yes I have been blessed. I wondered about the variety of rounds of Rituximab infusions myself. I see my cancer do in Sept & might ask her. I only know she said if it returns then they will put me back on a greater quantity of rounds - so 6 rather than 4 etc. You are right since you had lung cancer surgeries it would certainly be a factor in chest fluid, regardless of the complication of SMZL. What area of the country do you live? Under any insurance you always have the option of a consult and can bring all those questions to that one visit. Stay strong!

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Lori,
Thank you for your encouraging words.
Some days are more difficult than others, but I try to remind him of the things we are grateful for.
The challenges are many as a result of wild type and Al cardiac amyloidosis, persistent AFib, pancreatic insufficiency, B cell lymphoma ( MZL)?, diverticulosis, and bilateral severe hearing loss. There are times is truly is overwhelming.
One day at a time and deep breathing
Have a good day and thank you for your response.
Judy

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Sally I'm in the Minneapolis area and receive care at Mayo in Rochester. I've always been pleased with everything they've done for me. I have tests on Friday and hematology appointment on Monday. We'll see what direction they wish to go, Thanks

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Lori
It seems the question re: Paxlovid and blood thinners is one to be
reviewed and decided by cardiologist and oncologists. In some cases, discontinuing the blood thinner for the use of Paxlovid may be indicated. Like everything else definitive answer. I do feel when the antivirals are being promoted for COVID infection responsible information regarding possible contraindications should be included for its use.
Recommendations should not be made for calling a pharmacy for treatment and having a prescription on hand. That is irresponsible advice

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Hi, I whole heartedly agree with you. Any med we’re prescribed from our physician, I feel it shouldn’t have to be our responsibility to check with the pharmacist to see if it’s safe to take with our other meds. Though as I understand, there are patients who see several doctors and often aren’t aware of what each has prescribed. So that’s where a pharmacist, if using the same pharmacy for prescriptions, can be invaluable in making sure we’re safe.

However I do understand that with some of the drugs, especially the new antivirals for Covid, not all the facts are in yet. Makes this a grey area, I guess. Paxlovid is only on the market with emergency use approval at this time so maybe that gives them leeway. I did go to the Pfizer site and it has a list of meds which could interact but not very helpful.

But I did find an even better, more comprehensive source on the National Institute of Health site which lists which drugs are absolutely not to be used in conjunction with Paxlovid.

If it would be of help to you, take a look at the tables in this site. They’re broken down as to whether they’re safe to use with Paxlovid. Another for Contraindicated, or Can be used with monitoring, etc. Also, each table is then categorized by type of drug, whether it’s for Cardio, Digestion, Neurological, etc..

I take it you called the doctor yesterday and have a prescription in hand…but now it’s up to you to see if it’s ok for your husband to take? I’d be pretty upset too.

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