It's always something... oncologist thinks I have splenic marginal zone lymphoma
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I saw the gyn/onc specialist
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!
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Excellent newszsazsa1 said:I saw the gyn/onc specialist
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!
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!
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No surgery?zsazsa1 said:I saw the gyn/onc specialist
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!
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!
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It's complicated
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.
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So glad you have answers and
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
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Been holding my breathe forzsazsa1 said:I saw the gyn/onc specialist
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!
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
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Jjtrimjjtrim said:Been holding my breathe for
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
I have been thinking about you and your mother. How is she doing? Did the new doctors work out well? Le5 us know.
Denise
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Good news, Zsa Zsa.zsazsa1 said:I saw the gyn/onc specialist
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!
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
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I saw the local med onc who
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.
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We are still under the careBluebirdOne said:Jjtrim
I have been thinking about you and your mother. How is she doing? Did the new doctors work out well? Le5 us know.
Denise
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
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Jenny, thanks for the updatejjtrim said:We are still under the care
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
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
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Thanks so much for taling theBluebirdOne said:Jenny, thanks for the update
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
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.
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Here is a big virtual hug for you and your mom!jjtrim said:Thanks so much for taling the
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.
((((((((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
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Jenny, I think of you and
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.
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I had the first rituximab
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.
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Good to have one done
Good to hear that you did get through it and will have easier time with others. Pulling for you, as always. df
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Second rituximab
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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