My father was on watch and wait. In late FEB 2019 he caught shingles. The lesion was in his underarm( axilla region). His axillary lymphnode increased in size. The cause was unknown may be due to shingles.
Subsequently his cervical nodes also increased in size. The doctor orderd a CT. CT showed generalised lymphodentpathy with lymphnodes doubling or increasing in size in less than 3 months. Some nodes size didn't increase.
The doctor orderd a cervical excisional biopsy. The result came out as CLL/SLL. He was due to start BR shorty but the doc has put it on hold and orderd a PET scan.
Moreover his Serum LDH increased from 588 U/L to 722 U/L in 3 months.
He has no fever, night sweats, thrombocytopenia. He has raise TLC not that much but around 14. Very mild anaemia and mild fatigue.
He is due for PET scan on Thursday for in depth staging and evaluation.
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Haider98
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Sounds very scary. I remember our CLL Hero, Cllcanada used to say that the biopsy was the gold standard. Good news that it came back as CLL and not Richters though the LDH is concerning but not definitive of anything.
Did the shingles resolve? We had a cherished member have her shingles go systematic as her CLL was very aggressive.
His doctor seems to be doing all the right things. I’ll say a prayer for a good report from the PET scan Thursday.
It’s concerning for you all but impossible to say at the moment. I’d thought it unusual when you said he was having a PET scan on your previous post. However, the biopsy was negative and that’s usually the required diagnostic procedure as long as the biopsied area is right of course. His LDH is high but if he’s requiring treatment, the destruction of cells could be elevating that. Many people have a very elevated LDH as their CLL/SLL ramps up and requires treatment. Has his calcium level increased?
Hoping all goes well with the PET scan and no further suspicions are identified. From your previous posts he sounds to be reasonably fit and well though clearly getting close to treatment need.
We’ll all have our fingers crossed for the very best outcome and appreciate how worrying this must be for you all.
When I switched hospitals to Dana Farber in November my new doctor ordered a PET scan as part of his up front testing and I was on edge while waiting for the results. The results came back negative. This was after my BR treatment at another hospital. I believe part of the reason for the PET scan pertained to the fact I have SLL as you indicate your father does as well. I wouldn’t read too much into all the testing. It sounds like he is getting good care and a thorough evaluation which should be reassuring to you. Don’t jump to the worse possible outcome. I know it is easier said than done but it is usually incorrect to immediately assume the worse outcome. Stay positive!
So my fathers PET scan report came back. Max suv uptake was in one lymphnode around 3.7( Right Axillary one). Other suv values were around 2-2.8.
The oncologist ruled out richters. So happy.
The diagnosis is CLL/SLL.
In my opinion shingles lesion may cause localised lymphadenitis/lymphodenopathy.
To correctly diagnose richters the gold standard would be excisional biposy. The PET should be used to identify the suspected lymphnode( Suv max greater than 5). The histopathology would give a proper diagnosis.
No single factor can conclude richters such as serum calcium and LDH levels.
If anyone notice these factors, they should be immediately checked and monitored.
Surprisingly the PET also showed inflammation of the gut. This may be the reason he has on and off diarreha.
His SLL is stage 4 and he will be starting BR treatment soon.
He has started prophylaxis antiviral and antibacterial drugs before BR treatment.
He has also started taking allopurinol(xyloric).
I'll update on the BR treatment. He will get a CT done after 3 cycles.
Today was a great day. I felt happy after a long time. Well wishes for everyone. May you all get cured and live a long happy fulfilling life.
This is fabulous news and in the context of the whole diagnostic picture as it was emerging, perhaps not surprising. I can imagine the relief is absolutely immense!
No reason why your father cannot now start treatment if it’s clinically indicated and live a good, long life! The improved treatments are out there and it sounds like he’s in good hands medically.
Best wishes for your medical studies. You’ll feel more able to concentrate now and I hope it’s stimulated a professional interest in Haematology for you. We need doctors with personal commitment to the cause.
Thanks for your best wishes to all our members and we are delighted to hear this news! 😊
I agree that it’s best not to jump to conclusions. We had a similar situation and it turned out to be progressing cll, probably about the same time 11q came on the scene. Hope for the best as will all of us for you!
Shingles does horrible things to you and the reaction can appear Richter's like. I've got my fingers crossed that this is all shingles related especially as the biopsy says SLL/CLL.
This is a very good explanation Dennis though it must be stressed that no one symptom in isolation indicates a RT. The serum calcium level has been observed to rise significantly with this condition so is used in conjunction with a host of other prognostic indicators;
I am glad to hear that the shingles resolved. I did not have shingles, but I have had similar scans. My LDH was up to 725, and the doctor was saying that if we did not start treatment I might end up in the ER. I have SLL and he was worried about the lymphoma inhibiting organ function. I don't think that Richter's was ever suggested. I have now completed five months of ibrutinib and am doing well.
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