Gosh, I haven't been on this site fir quite some time. I have been on niraparib for PPC for 3 yrs with no issues until recently. I moved to another state and have a new oncologist. She did my ca125 and full blood workup. It jumped to 495 from 32 in may. Apparently it's not working anymore so she had me do a pet scan. Results show 2 enlarged lymph nodes. 1 by right lung and 1 by my diaphragm. This would explain why I have been having a hard time breathing. Anyhow, she scheduled me for a biopsy for next week. I have been researching and msybe its lymphoma. Has anybody gotten lymphoma from chemo and/or radiation treatments? Any information would be helpful to me right now. I'm not going to lie, I'm a bit frightened
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Rlenesue
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Hi Rlenesue,I’ve not heard anyone having lymphoma from treatment but I have heard of enlarged lymph nodes. You’ve been Googling, haven’t you?
I also read all those nasty possibilities. I still have enlarged hilar lymph nodes and get a bit breathless but my CA 125 stayed low and apparently they just sometimes enlarge because of an underlying inflammation (I have inflammation in some joints).
Googling can scare you unnecessarily, although I too would be worried about the rise in the CA 125 reading there are lots of things that will enlarge lymph nodes. Mine enlarged after my COVID 19 Booster shot (I had no side effects I felt). It must be worrying if you’re having breathing difficulties with it but do try not to head for the worst case scenario, there are lesser things it could be.
The waiting to find out always causes the greatest anxiety; the waiting makes us all feel bad. Your oncologist is looking after you by scheduling you for a biopsy and I understand that it is a simple procedure.
Try to find something to distract you from thinking the worst, something pampering or indulgent. Maybe some craft which will thoroughly absorb your brain, leaving no room for worry. Once you know the result of the biopsy you will be able to deal with it, just as you have dealt with your OC up to now.
I hope the biopsy goes well and it’s good news, please post when you know and remember that whatever the result you will cope, you have done up to now, you have support and understanding here.
Iris, that was the best reply I have ever gotten regarding my concerns. I got a covid booster too, maybe that's why they're enlarged.. it's so hard not to research, I need to be prepared. Its gotten me through 5 cancers and taught me to advocate for myself. Also, you ladies are my best resource, hands down. I thank you from the bottom of my heart. ❤️ ❤️ i will let you know about the results.
I do Google Rlenesue☺️ I just look for optimistic alternatives! This forum has supported me often and I’m glad it’s doing so for you too.I will keep 🤞🤞for you 🤗
What a super reply from Iris. I don’t have anything useful to add to that. It’s an anxious time for you but hopefully there’s a simple explanation for it all. You’re doing the right thing by getting a biopsy but I’d definitely stop the research and watch a new series on TV instead. I loved Anne with an E on Netflix. Distraction is crucial. Thinking of you. 🤗
My CA125 started climbing after 3 years on Niraparib and once it was over 35, a CT scan showed an enlarged lymph node near my diaphragm, as well as a small tumour growth. After a further 6 months on Niraparib which kept the progression slow, my oncologist stopped the drug and my CA125 started leaping up, until I started chemo again last summer. A recent CT scan has shown the lymph node is back down to normal size. I was getting breathless during chemo, but my mid treatment scan showed that was because I'd developed blood clots on both lungs, so I'm now on blood thinning injections indefinitely, which has resolved the blood clots and the breathlessness. OC can cause lymph node growth, so it's not necessarily lymphoma, which I would have thought would have been picked up in regular blood tests - I had tests every 4 weeks during my Niraparib treatment. Hope all goes well with your tests and you get a quick diagnosis and treatment. x
Hi,About 5months after frontline a PET scan showed inflamed inguinal lymph nodes. They did a biopsy, which was inconclusive but didn't look like a recurrence of OC, they thought perhaps lymphoma. I was sent to an oncologist who specializes in that, and she said it was not lymphoma. They had me do a cycle of Gemzar and Avastin, and I've had two scans since that no longer show inflammation in the lymph nodes. I have had bouts of autoimmune arthritis in the past, and I sometimes wonder if perhaps the inflammation was related to that rather than being cancer at all.
I know the thought of another type of cancer is terrifying, but lymphoma is very treatable. I remember almost hoping that it was lymphoma because it seemed less scary to me than a recurrence of OC so soon.
Trying not to worry is so hard, but try not to worry!♥️
I’ve been on niraparib for 3 years and 7 months. My CA125 is still 15. However there is now some new developments, my RBC are too big and too few, I also have immature red cells in my bloodstream that should never be there in any circumstances . My Oncologist has said my bone marrow is “under stress”. Molecular testing shows I have a developed a somatic gene mutation.
He referred me to a Haematologist who said I have something called. “ Clonal Haematoposesis of indeterminate potential “. She ordered a bone marrow biopsy and I had it last Tuesday. I’m awaiting results.
Unfortunately long term Niraparib can cause blood disorders such as Myelodysplsia etc . It’s a rare side effect but does happen.
I’m not telling you this to scare you but it might be worth mentioning this to your team. I really hope you are ok.
Just noticed your reply. The enlarged nodes were dealt with by 3rd line Paclitaxel chemo but since then I’ve been on 4th line Caelyx/Cisplatin chemo, which hasn’t worked and my liver has extensive metastases, so not great.
However, I am still enjoying life - with a bit more pain and analgesics. Life is slower but I’m still planning my future. An art diploma and a trip to see my sister in Spain in November (probably won’t get travel insurance for that).
it’s a scary journey but just find things to enjoy.
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