CLL and transformation to Richter Syndrome after having the flu vaccine

[GreatDad]

Help all, I have been reading the posts over the past few years, I’m so relieved to have found this support group. My father was diagnosed at 69 with CLL 9 years ago. He is now 78. He has never had treatment so far as his heamatologist said his numbers were not high enough. We live in Australia. He had the flu vaccine 3 weeks ago as our winter is approaching here, (he has had it every year)

2 days after his vaccine 4 large lymph nodes swelled on his neck of the same side as his injection arm. He then started to get night sweats a week ago and an extremely painful thigh. Pain on his left side and stomach. The dr said today his cll number have gone down so she thinks his cll has transformed to another cancer. I’m guessing from this site it may mean it’s Richters.We are waiting on a ct scan this Wednesday and a pet scan too

The Dr looked shocked how aggressive the cancer had become Has anyone had any experience with vaccines and it’s effect on cll? We are hoping that it is his bodies response to the vaccine but it’s nearly 4 weeks and it’s getting worse

If anyone has had similar symptoms whilst at the same time lower blood levels of cll please let us know. His LDL is not significantly high either

Thanks

Worried Daughter

[Newdawn Administrator]

I can understand your concern for your dad but remember the diagnosis hasn’t been made yet and it will need a PET scan and preferably a biopsy to confirm a transformation. It’s very coincidental that he suffered this reaction just after the vaccine on the same side. We have had members report strange reactions to the Covid vaccine including feeling unwell and large swellings that eventually subsided. Obviously speculation is all we have just now but as you say, his levels remain good and his LDH hasn’t increased. Let’s hope this is just a very extreme reaction to the vaccine or something that can be resolved.

Please let us know how things go and best wishes for the results of his tests.

Newdawn

[GreatDad in reply to Newdawn]

Thanks so much for your reply Newdawn. It means so much to us to hear that. I will let you know how it goes.

[Sepsur]

That all sounds very scary. Each time I had flu or pneumonia jabs my lymph system also went into overdrive. Night sweats, nodes that felt like the size of tennis balls on the side I had injection.

I also had an episode of ‘pseudo Richters transformation‘ last summer, where, for a period of 3 weeks, it appeared CLL had transformed to DLBCL. Because of a head wound, I had stopped taking ibrutinib & I also was still carrying an EBV infection. I had every test going because of how I presented.

Lumber punctures, MRi, CT, regular bloods - eventually a PET scan showed no peculiar activity. 3 months later, I was in remission.

[GreatDad in reply to Sepsur]

Thanks for your positive response Sepsur. He’s having the CT scan today and Pet scan on Friday morning before the drs appointment. The pain in his thigh is so bad that he is limping heavily even on endone painkiller. So strange as his CLL in his bloodwork has gone down. His platelets and all are fine That’s why I assume that the Dr is worried about the CLL transforming to DlBCl. Do you know whether bone pain can be caused by CLL too?

[Sepsur in reply to GreatDad]

Bone pain & night sweats are some of the symptoms of RT that is true. I was told that if it was verified through PET scan that I had DLBCL - I would need quick treatment (and there is effective treatment @Priss69)

[Soundsinamotion]

Could you explain what richter syndrome is?

[GreatDad in reply to Soundsinamotion]

I’ve taken this from a health website

Richter’s syndrome (RS), also known as Richter’s transformation, refers to the transformation of one specific blood cancer type into a different, more aggressive type.

RS refers to the development of high-grade non-Hodgkin lymphoma in a person who has chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL). Other variants of RS are also known to occur, such as transformation to Hodgkin lymphoma.

[Soundsinamotion in reply to GreatDad]

Oh my! That certainly is a bit scary. I’m hoping it’s not this and that everything will get sorted out! Please keep us up to date!