4 long weeks, 2 hospitals, and about a dozen specialists it took to diagnose my very sick husband. They were all over the board with CLL, infection, no CLL, no infection. Bmb, 2 liver biopsies, PET, CT, ultra sound. His counts are down to nothing, bilirubin sky high. Finally they told us Friday that it was Hodgkins lymphoma. Not saying transformation but doesn't it almost have to be? The lymphoma specialist ( our original doc from CLL diagnosis ) delivered the news Friday. Said the plan is to treat with ABVD, but need to wait until all liver results are back tomorrow to be sure this is what is affecting the liver and not something else. Then they will start with a low dose treatment because of his counts. He really left us thinking it wasn't that bad, but I am not so sure. I think k am dreading Monday 
Now Hodgkins...: 4 long weeks, 2 hospitals, and... - CLL Support
Now Hodgkins...
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Dear Jules_
You poor things, you've been going through the mill big time. Sorry to hear about your very poorly husband. Must be a terrible worry for you. Fingers crossed that the treatment will improve his situation. Sending my thoughts to you both.
Caroline
How very stressful, let's hope they can find a way forward for you both. Keep strong, will keep you in thoughts and prayers
Marc
Hi Jules
How scary it is when clear diagnosis is unavailable, and you wonder what next. All the worse prognosis run through your head.
I hope today will give you some answers and even more important some solutions.
We will be thinking of you and wishing hubby the best outcome. Stay strong.
Warm hugs
Bubnjay1
Hugs to you as you deal with this really difficult time and I hope that the answers you receive give you comfort and the treatments are successful.
Praying for you and your husband Jules.
I do hope u can turn the corner today. if they have the right dx finally maybe the improvements will come more readily. Will say a prayer.
Sounds familiar, like pulling teeth getting info, I just went through it with a mass on my neck oct of 16 after I felt I pulled a muscle lifting something, went in, needed needle biopsy, couldn't get for 8 days, lump went away, 3 weeks later it was back, week later needle biopsy, several days later it was inconclusive needed more tissue, 10 days later core biopsy, several days later not enough tissue to determine, 5 days later meeting with surgeon to do sergical biopsy, wanted over month to do proceedure, with yelling and screeming as lumps were forming throughout I got in at 5 am the next morning, several days and large B Cell non Hodgkins lymphoma..... Started R-Chop treatment, after 4 treatments went to USC medical center to meet doctor to perform stem cell transplant when ready, this is the first time we ever herd the word Richtors Transformation, yea very nice to know..... Scan came back still showing to much lymphoma, so did first round of R-ICE in Hosp, got infection due to everything low and was hospitalized for 4 days, had to extend next treatment for week and a half and lump re formed on my neck... Just did 2nd R-ICE last week and not sure what future holds. Very concerning across the board, we have researched other facilities around the country, past doctors etc. It's a pathetic situation whereas you get nothing but the run around everywhere you turn 💰💰💰 and never clear answers. Everyone will say anything they need to to get you insurance 💰.. Makes it very very difficult to get straight answers but we keep looking and pushing for anything tgere might be better or on the horizon... Wish you well
Have you considered a clinical trial... the Mayo and MDAnderson, and perhaps OSU are running Richter's specific trials using a checkpoint inhibitor... Keytruda, combined with ibritunib, and early results are very encouraging...
Probably Scottsdale Mayo would be the closest to you...
clinicaltrials.gov/ct2/show...
Dana Farber has a Venetoclax and Epoch-R trial as well.
clinicaltrials.gov/ct2/show...
There may be other trials as well...
~chris
Thank you so much Chris, it was my understanding I didn't qualify until I went through the stem cell harvesting and had re occurrence? We know the Car-T cell re gene therapy could be next if this doesn't work but you have givin me energy to get on the phone again and push for more detail today. I'm finally over nasea and can handle some time on phone... This has got my wife, my daughter who is a PA and myself so worn out its unbelievable. Very complicated and so difficult to read between the lines..... Thanks so much again.
I will ask this morning about it but I am afraid he is literally too sick to wait any longer.
sending warm wishes. hang in there.
Last year my husband, who was diagnosed with CLLin2012, and received FCR x 2 treatments in 2013, was diagnosed with Hodgkins. A bmb in May 2016 showed Reed-Sternberg cells. He had felt very sick in Nov 2015, but it was thoughtto be a CLLrelapse, and he started on a clinical trial of acalabrutinib, which made him feel much better. However, thrombocytopenia forced a stopping of the drug, and symptoms came back with a vengeance. Then the Hodgkins was discovered.
We went to Mayo to be consideted for a trial of Pembrolizumab, but they required multiple tests and visits before starting. He was so sick, he couldn't do it, so he started AVD ih July at home. The B was not available, so we skipped it.
He completed 6 months uneventfully, got his hair back, and now has tons of energy; vacuuming, ran 3 miles last weeked, unbelievable!
Have faith. Here's hoping you will do as well.
You are in my thoughts and prayers. I was told 4 weeks ago that my so called indolent CLL/SLL has advanced rapidly and more test were needed to find out why. Dr. Byrd at OSU James Cancer Center mentioned DLBCL which would mean Richter's Transformation. Very bad prognosis. Said I may need Ibrutinib or FCR. I go back April 11. I live in Michigan and Columbus, Ohio is about 4 hr. drive. My husband said if I need to stay there to receive treatment maybe we could rent a little apartment for 6 months. I have a little Yorkie whom I would hate not to be with. But I love Dr. John Byrd there at the James Cancer Center. He is one, if not the top, expert on CLL in this country. He spends time with you. He explains things and asks if you have questions. He's great! Sometimes we with CLL have to travel to find that specialist who we really like and trust. Good luck! Let us know what happens.
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