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So today markers are in 15.39 (0-10 normal range), just a little higher but feeling the terrible panic again.
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How's things, Hermana?Nick
Embryonal Carcinoma; Seminoma. Marker negative.
August 2001: Right I/O .
August - December 2001: Surveillance .
December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
December 2001 - March 2002: 3xBEP .
Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.
March 2012 - Ten years since finishing chemo.
Survivorship Blog is hereComment
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Hello all, hello Smartie, thanks for your interest.
Sorry for the silence, but the forum went under problems and later all have been a little chaos.
His tumour markers continued increasing, although very very slowly. His bHCG reached 35.56 three weeks after my last message. His oncologist wanted to do a PET-CT scan to know what was happening, and continue with Gem + Tax while we were waiting for the PET-CT scan results, I wanted to add IMATINIB, as the MAKE AN IMPACT genetic test showed that his tumour had a kit mutation that is sensitive to this drug, and I found a publication of a young men who was successfully treated with Gem+Tax+Oxiplatin+IMATINIB as third line chemo.
Well, just only 5 days after my brother started with the IMATINIB pills, his tumour markers went down from 35 to 21. They don't know if the IMATINIB was the "guilty", but we felt very relieved and happy.
The PET-CT scan showed a solitary lung nodule, and his doctor and Dr Einhorn agreed that it had to be removed.
Past Monday 28th October (two days ago) he went succesfully under lung surgery, now he is recovering very well at the hospital, we hope to be at home tomorrow if all things goes well. I hope so.
We have an appointment next 13th November and I just wrote to Dr Einhorn to know his opinion.
He is currently taking his IMATINIB pills, as it has almost no side effects, and we are waiting to know his tumour markers and the histopathology of the nodule.
We hope this war ends here. 1,5 years of nonstop fighting, I hope we beat this damned thing.Comment
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Two days after surgery his bhCG is in normal range!Comment
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great to hear!6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
7/7/15: bHCG 56, AFP 42, LDH 322
7/13/15: begin 4xEP, end 9/18/15
10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
4/20/16: RPLND @ IU - teratoma only!
10/22/19: all clears up to this date!
4/8/24: stopped monitoring something like 2 years ago, still all clear!Comment
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Hi Hermana,
So great news! You and your family went through so much, but this is good ending!Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal
08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normalComment
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Hermana, I am soo happy for you!!Comment
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Hello all.
Thank you very much for your words, I think you can't know how much it helps me, how knowing there is someone there comforts me.
We already have the histopathology of the lung nodule, is positive for choriocarcinoma (the histopathology of the testicular tumour was 100% pure seminoma). Nothing Dr Einhorn didn't already know, but something that his doctors here in Spain didn't know or wanted to believe...
I don't know about the next steps, I'm waiting the answer of the angel Dr Einhorn, but for anyone who is reading me...
PLEASE, PLEASE contact Dr Einhorn, please be brave enough to fight for you or for your beloved one, and defy if needed your doctor opinion if you think there is something wrong, if you don't feel well treated, if you don't understand anything o think you are not being listened... please, contact him. He is an ANGEL IN EARTH.
Many months ago I had enough confidence to defy his first oncologist here in Seville, I did what I thought was the BEST for my brother, no matter who could felt bad because of my behavior, but I have to admit that I felt bad, unsupported (how important is this), and even criticized by many, doctors and family, the only thing that kept me strong was my love for my brother.
So, as I said, my love for my brother kept me confident and still, but with this new information... it only reaffirms to me and us to the rest of our tiny world that we made right, we made the best decision possible, and it was well done.
I'm so sorry for this words, I can imagine this is not the appropiate place to write them, but I just needed it.
Please, keep strong, look for the best, and be in touch with the Angel in Earth, Dr Einhorn.
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Hola hermana
Mucha fuerza e fe vos deseo
Asi es, cuando no tienes confianza en el medico, hay q cambiar
Haz echo lo correcto en pedir una 2a opinion
Espero sinceramiente q tu hermano se ponga bien, y q Dr E vos ayude
Saludos y suerteComment
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Hi Hermana,
I am really shocked with this situation. Will they review your brothers pathology slides again? Is it possible to check the remaining one?
You are doing a great job. Also should never give up. Now the tumor markers are normalized. It is a good and positive sign. It is easy to say “stay strongâ€. But pain and fear will always there. Trust Dr.E, he will give a treatment plan soon. Sending a hug as a TC patient’s Mumm.
Amy, Ran’s MummSon Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal
08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normalComment
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One day before my I/O, doctor put some paper in my hand to sign. It was some declaration for participation in some TC research, they wanted me to sign that they could freely use my blood, semen and testicular tissue in some research. I didn't have problems with blood or semen, but I remember that I was concerned about the tissue (tumor): what if pathologist does something wrong and misdiagnoses my tumor, and rest of the sample is not preserved, but used for something else? I also remembered that everyone was really polite to me until I finnaly signed it, but I almost left the hospital without I/O just because that (almost) blackmail.
I know that misdiagnoses are relatively common in pathology, and it is not shame to be wrong, but what is the problem with some of the doctors just to try to think, not just to blindly follow procedures?45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
Waiting...Comment
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I'm thrilled to hear his markers are now normal!Nick
Embryonal Carcinoma; Seminoma. Marker negative.
August 2001: Right I/O .
August - December 2001: Surveillance .
December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
December 2001 - March 2002: 3xBEP .
Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.
March 2012 - Ten years since finishing chemo.
Survivorship Blog is hereComment
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thats awesome.. great news..painless lump rightside over 5 month
tumor markers- afp-14.9 hcg-773
06/2018- right i/o
path- teratoma/yolk sac/chorio
afp down at 2.3 hcg-3303
ct- no lymph involvement, lung mets (stage IIIA)
07/2018- start of 3xBEP +1EP
changed to 3xBEP
complete response
07/2019- 9 months all clear(bhcg<0.1 or undetectable from 5 months)
10/2019 - ct picked up small nodule on other lung (3mm) blood work normal
(one year mark after chemo)
11/2019- afp-0.7 bhcg-2.9Comment
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