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It's always something... oncologist thinks I have splenic marginal zone lymphoma

zsazsa1
Posts: 504
Joined: Oct 2018

Well, the enlarged spleen that the first gyn med oncologist said was due to cirrhosis (even though I don't drink, and had normal liver function), now appears to be splenic marginal zone lymphoma, a slow-growing lymphoma, and I've probably had it for at least 4 years.

I'm having the  PET/CT on Wednesday to see whether I'm having a recurrence of the UPSC/clear cell, in light of the slow but steady rise in my Ca125.  The flow cytometry on my peripheral blood came back suspicious for a slow-growing B call lymphoma.  The lymphoma oncologist (recently trained at MD Anderson) wants some more tests, and of course the PET/CT, and then is recommending Rituximab.  Frankly, from what I'm reading about it, if the lymphoma is confined to my big spleen, I'd almost rather just have it out laparascopically, and go on with my life, and save the rituximab for if it progresses.  I mean, I have to think about how I want to spend my time at this point, if I'm not having a recurrence of the UPSC.  I think that recovery from a lap splenectomy will be easier than going through rituximab, but I don't have enough info yet.

I just cannot believe this.  I'm really pretty shell-shocked.  Could this all be the result of the approximately 5 years of poisoning with the Chinese NDMA-contaminated valsartan?  Just incredible - two cancers at once, and no identifiable genetic syndrome.

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

I am SO glad that you went to Yale.  Cirrhosis with  normal liver function tests?   I am so glad you have seen someone else.  At this point I agree with considering a splenectomy.   Lymphoma is slow growing.  I have a friend who has it, and been on medication for it for 20 years.  By the way, his father and sister also have it.  I'm not sure its the same type, but at least now you are going to get a definitive diagnosis.  I hope our medication stops coming from China.   Why add that to everything else.  You are right to wonder.  AND hopefully you are not having a recurrence and CAN go on with your life.  

 

 

 

Tamlen's picture
Tamlen
Posts: 264
Joined: Jan 2018

Your head must be spinning with such unexpected and unwelcome news. I'm so sorry, zsazsa.

I certainly understand your thinking about surgery over the rituximab as you consider how you want to spend your time now. We'll be here for you as you look into your options and work through a decision.

{{ hug }}

Tamlen

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

As you know, just went through trying to decide on my treatment and trying to get all the information and decide is exhausting. Hang in there and get all the input you can and need. 

zsazsa1
Posts: 504
Joined: Oct 2018

Next step is pet cct.  Once the results of that are in, I can plan.  It wasn't the doc at Yale who realized it.  I had a liver biopsy and pressure measurement of the venous drainage from the liver to prove I didn't have cirrhosis (boy, that was NOT fun).  Then my gyn med oncologist ordered a bone marrow biopsy (also a pleasure) which showed nothing.  I then sought out a lymphoma specialist - they have a new one at Hartford.  She ordered a lot of tests, which were all normal, except that somehow, they forgot to order the peripheral blood flow cytometery.  When I went back for follow up, she realized it hadn't been done.  I had it done with my next herceptin.  Yale saw ithe results last week, told me it was okay.  But I looked at it, and thought, "This doesn't look okay."  I called her for another follow up, which was yesterday, which was where she made the likely diagnosis.  The diagnosis does fit clinically with what's been going on.

The way I look at it, this is an indolent lymphoma.  Hopefully it won't convert over to an aggressive lymphoma.  I'll have the treatment, either rituximab or splenenctomy.   And take it day by day after that.  It does seem kind of odd, though, that all these gyn med oncs didn't consider lymphoma.  They all knew I had an enlarged spleen.  But of course, we had bigger fish to fry, with the UPSC. 

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

And been your own physician.  But someimes I see the gyne onc needs to refer patients when they are treating conditions outside the gyne system.   Skin diseases, and other conditions for their paitents that need another specialist.  You have been thgough so much  to get your diangosis.  Or probable diagnosis.  I am still hoping for a good PET scan.

 

barnyardgal
Posts: 261
Joined: Oct 2017

I'm so sorry. We're here for you whatever option you decide. I worry about all the China stuff as well. It does make you wonder.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Thank God you are so diligent. I'm so sorry you're having to go through this. BTW, my brother has cirrhosis due to obesity and his liver function tests continue to be normal. 

MAbound
Posts: 1086
Joined: Jun 2016

You knew something was going on and not knowing was certainly a big weight to carry. I hope it helps to have a clue of about it now and potential plans of action. I wish the news were better, but it sounds like you have things well under control. The surgery almost sounds like it would be easier than some of the testing you've had getting to the bottom of what's going on! You are one strong and persistant woman! Thank you for being here with us!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1687
Joined: Jun 2015

So sorry for this news zsazsa1. I'm glad you are finally starting to get some answers. It is incredible how much we have to research our own symptoms to get anyone to pay attention. It sounds like you have found a great doctor to help you through this one. Please let us know your next steps. We are all here for you.

Love and Hugs,

Cindi

LisaPizza's picture
LisaPizza
Posts: 324
Joined: Feb 2018

I'm sorry. Life is crazy, isn't it? I wonder if the lymphoma affects the ca125 or interferes with the test. It sounds like the diagnosis is at least a tiny bit uncertain, so maybe splenectomy would at least lead ti certainty with the pathology evaluation.

zsazsa1
Posts: 504
Joined: Oct 2018

Yeah, I've been wondering about that too, whether that could be causing the Ca125 to rise.  Well, the pet/ct will lead to biopsies, because any area that lights ujp could be UPSC recurrence, or spread of lymphoma.  If it's just in the spleen, it's either splenectomy or rituximab, or both.  I read that people can go many years with the slow, indolent lymphoma - and that's not as scary as a UPSC recurrence.  At first I was shocked, now I'm just kind of numb/paralysed.  Waiting game until I have more info.

zsazsa1
Posts: 504
Joined: Oct 2018

Just finished pet ct. Good news! The radiologist came and spoke to me after taking a quick look. Preliminary read is no evidence Mets, and the spleen uptake is relatively low, so probably an indolent b cell lymphoma, no evidence Mets. I'll have to wait for final reading, but I'm more inclined to have the spleen taken out because it's pressing on my stomach, causing nausea. Really, this may be as good as it could have been, under the circumstances. Thank you all for the support. Priceless to be able to share with people who understand.

LisaPizza's picture
LisaPizza
Posts: 324
Joined: Feb 2018

Glad to hear it!

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

I am so happy for you.  I thought it is so much better no serous spread.   What a roller coaster ride you have had.   Congratulations on your determination.   It has paid off.   Hugs to you.   

oldbeauty
Posts: 277
Joined: May 2012

Thank you for sharing.  That you are a physician gives us all an insight into symptoms and analysis that is so valuable to us all.  Best wishes for the treatment you seek.  Oldbeauty

MAbound
Posts: 1086
Joined: Jun 2016

Well, I'm sure having your spleen out won't be a picnic, but otherwise that is good news! Picture me doing my Snoopy happy dance!

MAbound
Posts: 1086
Joined: Jun 2016

Sorry, it won't paste. :(

zsazsa1
Posts: 504
Joined: Oct 2018

That's okay, I grew up with Peanuts, and the Snoopy dance image is ever with me!

I meet with the lymphoma oncologist on Friday to discuss options.  The recommended treatment for this is actually rituximab, but without tissue, we won't really know what we're dealing with, so I think i do want the splenectomy.  If they can do it laparascopically, I can't imagine it would be any worse than the lap hysterectomy.

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

You knew something was not right and were proactive about getting to the bottom of it. It sure pays to listen to our bodies. Hope your coming surgery gives you the necessary answers to enable your best treatment plan. I used to think that people having to fight two cancers was rare, but no more after reading our boards. Let us know how it goes.

 

Denise

Fridays Child
Posts: 185
Joined: Jul 2019

And I'm so glad it's good news.  How strange that they think you had that even before the uterine cancer was discovered.  And thank you for sharing your knowledge with us all. Knowledge is power and this is a great source.

zsazsa1
Posts: 504
Joined: Oct 2018

I saw the gyn/onc specialist at Yale today (truly a remarkable man - he does surgery, med onc, and cutting edge clinical research, really a one-man show for uterine cancer, so impressive).  Since no sign of UPSC recurrence on PET/CT, I'll follow up with him as needed, and continue seeing local GYN/ONC for exams.

Then I was seen by a Bcell lymphoma specialist at Yale.  God bless them for getting me in immediately.  He agrees with the diagnosis of a very slow splenic marginal zone lymphoma, says that the best choice is rituximab.  Doesn't want me to do both herceptin and rituximab, so soon I'll stop herceptin.  He's repeating the flow cytometry, and doing some genetic testing on the abnormal B cells, but from what he says, I'll do the rituximab and it will probably work, and then I can forget about it for awhile.  It will never be "cured", but it can be managed, maybe for a very long time, I hope.

It's one heck of a distraction from worrrying about a UPSC recurrence, that's for sure!

Armywife's picture
Armywife
Posts: 430
Joined: Feb 2018

I mean, relatively speaking, it's excellent news.  So thankful you have the expertise of the good specialists.  Do you live near Yale?  Sounds like you have a good plan ahead.  Praying for stellar results!

Fridays Child
Posts: 185
Joined: Jul 2019

Sounds like they think the Rituximab is a better option than removing your spleen.  My brother had Rituximab a number of years ago for his lymphoma but his was a different type.  Wishing you well with the treatments!

jjtrim's picture
jjtrim
Posts: 27
Joined: Mar 2019

Been holding my breathe for you.  So happy it's not a UPSC recurrence. Sorry to hear about the lymphoma but if it is slow and can be managed for a long, long time, then at least that is something to be grateful for.  All the best to you

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

I have been thinking about you and your mother. How is she doing? Did the new doctors work out well? Le5 us know. 

Denise

jjtrim's picture
jjtrim
Posts: 27
Joined: Mar 2019

We are still under the care of the same gyn/onc who is still absent and uninvolved by my standards.  Fortunately,we have a very knowledgable and caring NP and another gyn/onc fellow who do most of the face to face with us - then supposedly relay and treatment plan with the attending gyn/onc (Ms. absent-pants) and the tumor board at Kaiser. My mom is comfortable and wants to stay with her treatment team, and they do seem to be providing the same standard of care - but I try to keep up with all the options.  I have requested for a full genomic testing, which they have provided - something new called Strata testing.  That will give us options down the line.  But for now she is not platinum resistant so they are marching on with cisplatin/gemzar and Herecptin as she is Her2+.  I'm on this discussion board daily, scouring for anything that could help my mom, and also because I've become attached to the members and their stories. 

My mom initially completed the 6 rounds of carbo/taxol with good results, so much so that they discontinued chemo and continued on with Herceptin alone.  Unfortunately, that was not enough to keep her from progressing.  So we are currentl under the cisplatin/gemzar cocktail which showed mixed results on the last Pet/CT - good improvement in the peritoneum and full resolution of the lymph nodes, but at least 1 new spot lit up on her kidney.  

She's handling chemo well, but her WBCs were low so just gave her 4 days of injections to bring those up.  She also has chronic pleural effusions - 3 times drained so far - 1.5 liters each time.  She has trouble eating,mostly due to the metallic taste from the cisplatinum and is losing a significant amount of weight for  a woman her size.  

I oscillate between being scared out of my mind, devastated, and mostly hopeful because I can't function if I give in to the fear and sadness.  

Thank you for asking about my mom.  

I'm seeing your great CT result from earlier this month.  May you dance with NED forever!!!!!

Best,

Jenny

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

I was worrying about you and your mom as I had not seen a post for a while, but I am not always checking all the posts. Having some caring people on your team can make up for some who seem absent. It sounds like you have done everything you can and then some! You are doing as well as can be expected given your circumstances so pat yourself on the back for doing such a great job for your mom as she is unable to herself. Not being platinum resistant is huge right now for her. My eating problems did not come until about a month after chemo. I could barely eat, lost 20 lbs. Nothing tasted right and I could not get down more than a few bites of anything for about three months. Then it gradually went away. No nausea or vomiting, just could not stomach the notion of food. Yes, thankfully, I am NED as of early February, thank you for noticing. You seem to be reacting very similarly  to a cancer patient, I felt the same way for a long time, and I did not face any unusual issues during or after treatment. As time goes by I realize how easy I have had it , so far, compared to many, and I am profoundly grateful for that.  I believe these emotional issues are very normal. We have to give in to the grief and despair to be able to move on emotionally to the next steps of fighting, and hope. Releasing of pent up emotions is the most healthy thing we can do. It is all a part of the process of coping with being a patient or a caregiver. I am so happy that you updated us as we do become invested in each other’s struggles, as well as their successes.  Keep in touch, I am so rooting for a great outcome for your mom. 

Denise 

xxoo

jjtrim's picture
jjtrim
Posts: 27
Joined: Mar 2019

Thanks so much for taling the time to listen and offer your support...and for rooting for my mom. It's a hard journey but I'm glad this forum exists so people don't feel so scared and alone. A little kindness goes a long way.

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

((((((((hug,hug,hug))))))))))  Please know that you are not alone, there are many of us who were initially in the same boat being devastated by our dx, but we gain strength and friends as we share our stories, treatments, and support each other. I am glad to help!

Denise

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

Glad to see things are being handled by the best people. It must be a relief to at least get your treatment specified and started. 

Denise

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

You have been concerned about your enlarged spleen for a long time.  I am glad you have a diagnosis.  It's a lot to deal with,    The PET scan results are good news, and I think the Lymphoma is a chronic thing.  As I said, I have a friend who has been doing this for 20 years.  Maybe you can now get some time to just enjoy your life!  That is my prayer for you.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1687
Joined: Jun 2015

So glad you have answers and a plan! I hope all goes well during your treatments and you can start relaxing a bit and enjoy life again.

Thanks for always letting us know what is going on. I think it is very helpful for everyone.

Love and Hugs,

Cindi

 

zsazsa1
Posts: 504
Joined: Oct 2018

I saw the local med onc who is doing the herceptin.  She and the Yale lymphoma specialist say no way to be on both herceptin and rituximab at same time - no data whatsoever on safety of using them simultaneously.  Yale gyn/med/onc says he thinks it would be safe to be on both, but would defer to lymphoma specialist.

zsazsa1
Posts: 504
Joined: Oct 2018

Jenny, I think of you and your mom all the time.  It's so good to hear from you.  Here's wishing you and her an easy time with treatment, and lots of quality time together.

Lymphoma specialist at Yale (actually a B cell specialist - can you believe that they are that specialized, and Yale isn't Sloan Kettering or Dana Farber) repeated the flow cytometry and agrees with the diagnosis.  I'm having my last herceptin this week, and will start Rituximab next week.  I hope it helps.  The guy at Yale did genetics on the lymphoma cells, says there are no unfavorable mutations, and that I could have years of remission (I hope!).  Meanwhile, the doc here who is the one who diagnosed the lymphoma had the pathologist at her hospital review the bone marrow - and he thinks he sees slight infiltration of the malignant B cells.  Discouraging, but she says not to worry, that the rituximab will likely clear it all up.

Well, it sure has me distracted from worrying about a UPSC recurrence!  I'm thinking that maybe I should have an internal exam a bit earlier than it had been set for, just to make sure it's not back before I start on this rituximab path, but to tell you the truth, I think I'd still have the 4 weeks of rituximab before starting to deal wtih a localized recurrence.

cmb's picture
cmb
Posts: 554
Joined: Jan 2018

Wishing you have good results from Rituximab when you start next week!

dgrdalton's picture
dgrdalton
Posts: 130
Joined: Jun 2017

Oh my, you have been through so much. Thankful you have a plan to get the lymphoma in remission and that you don't have a UPSC recurrence to deal with. Wishing you the best with the Rituximab.

zsazsa1
Posts: 504
Joined: Oct 2018

I had the first rituximab today, got through it, but it was touch and go a couple of times.  First, within 5 minutes of beginning the infusion, I had pressure and pain in my head, chest, and low back.  They stopped the infusion for about 15 minutes, then restarted.  Next, I developed stinging/tingling in the back of my palate, tongue, and thoat, so they stopped it again for about 15 minutes.  It was okay when they restarted it, and I was able then to finish.  Entire treatment took about 8 hours.

Tonight I feel pretty good, since they gave me 10 mg Decadron before the treatment. And as you can see, I'm wired from the treatment, up late.  After this treatment, they can apparently give the subsequent ones much more quickly.  Hopefully, I'll have as easy a time with rituximab as I have with the Herceptin.

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

Good to hear that you did get through it and will have easier time with others. Pulling for you, as always. df 

zsazsa1
Posts: 504
Joined: Oct 2018

Had the second rituximab today.  After the first, I felt great for about three days, then very very tired for the rest of the week, no appetite then.  I had all the pretreatment again today, including 10 mg decadron, and again, I feel great.  I had no allergic reactions today.  My numbers dropped on the pretreatment CBC - platelets down to 92, WBC 3.5 I think, Hemoglobin 10.9 I think.  Not happy about that - I emailed Yale lymphoma doc as to whether that's a bad prognostic indicator.

I go in masked, wash hands frequently, wash as I leave, wear all washable clothing, everything into wash upon arrival home, including me, and phone and laptop get alcohol wiped.  The infusion center seemed very quiet.  Some of the staff wear masks all the time, many don't, and everyone sanitizes or washes very frequently.  You can see how hard they're trying.  I'm not afraid there.

Well, in my steroid induced optimism, life isn't bad - nice home, with family, all our material needs met, beautiful walks with the dog in the early spring.  Ask me again how I feel in 3-4 days, when the steroid's worn off!

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