Feeling really lost and scared.

[krisskross]

My husband did have CLL but had Richters Transformation to Lymphoma. He has been having Rituximab with Gemcitabine and Oxaliplatin. However yesterday his Consultant said his platelets are too low (50) to have the 6th and final planned dose. She does not plan to do a scan for a few weeks, has no other treatment planned and actually didn't seem to want to see him unless symptoms recur. His interim scan showed no disease progression but no real response either. After I said I was not happy with such an open ended plan it was agreed that he would be seen in clinic in 8 weeks. I feel he and I have been abandoned to just get on with whatever happens...he hasn't even got any blood tests planned. So no idea what to expect and we are both a bit scared.

He had 6 cycles of BR and then Ibrutinib before the transformation and has had 6 of R-mini chop during which his disease progressed and finally the Rituximab plus gemcitabine and Oxaliplatin since the biopsy confirming a CD30 transformation.

[Cammie]

Krisskross

It’s understandable that you are concerned.

However the fact that the medics have put consultations back and there is no specific plan to do blood tests could indeed be a positive!

With your husbands experience of previous treatments he will be aware that on occasions when blood tests give results that show platelets or nuets are low during treatments it is common for early termination of treatment.This could mean the treatment he has received has done a better job than normal due to his reaction to the drugs.

What you really need is discuss the reasons for the proposed ongoing consultations and the provisional results of the current treatments.

Your concern is obviously about prognosis so you really do need to discuss this fully.

It could be positive news!

I wish you well please keep us in touch.

Geoff

[Jm954 Administrator]

I’m so sorry to hear of your husband’s Richters Transformation and your feelings of abandonment which I totally understand given the circumstances.

I feel that there is a dreadful breakdown of trust and communication with your consultant which needs resolving quickly.

I see that you are in the UK and, in each hospital, there should be a PALS office (Patient Advice and Liaison Service). Please contact them, the details will be on the hospital website, and they will advocate and mediate for you to get the answers and care that your husband needs.

Very best wishes

[Justasheet1]

Is he being seen at a Cancer center by an expert? Time is of the essence. Please seek a second opinion.

Jeff

[cllady01 Former Volunteer]

kriss, Jm954 has described the best route for you to take to get some professional contact to help you and your husband. Having someone who knows the hospital, system, and Doctors to talk with is essential and my hope is you will followup with Jm954's suggestion.

Best wishes as you seek some answers for what now..

[Cllcanada Top Poster CURE Hero]

I'm a 6 year Richter's survivor... get a second opinion as other have said. Also look into a clinical trial, there are a couple of trials for Richter's proving quite good.

Have they discussed stem cell transplant or radiotherapy? Clinic trial?

~chris

[Hidden in reply to Cllcanada]

Hi ChriS how are you doing now ? Did you have a bone marrow transplant

[krisskross]

A consultant at another well known hospital actually favoured stopping active treatment and looking at palliative care and symptom control. Well this might be OK if they are sure he has reached the end of the road treatment wise BUT we both need to know what the plan is...assuming there is one. It is the not knowing and the feeling that his consultant is sort of washing her hands of him that is so difficult to deal with. We both know that he has co-morbidities that limit treatment options but we need information. His consultant did say there is a possibility that she could access Brentuximab but no idea when this could be.

[Cllcanada Top Poster CURE Hero in reply to krisskross]

Brentuximab is used for Hodgkin's type transformations... this is what he transformed too?

chemocare.com/chemotherapy/...

Sorry I just assumed it was diffuse large B cell lymphoma, DLBCL, the most common type with about 80% of cases....

[G1llHa1n]

That feeling of helplessness is dire - it is bad enough when it's for yourself, when it's for a loved one it's so much amplified. Please take the advice already offered and get to someone who knows what is actually what and how to proceed. Take of yourself too.

[MsLockYourPosts Passed Volunteer]

You do need to find out the type of transformation. Though unusual, a friend with CLL transformed to Hodgkin's lymphoma rather than diffuse large B cell lymphoma. I hope you can get clarification through the PALS system!

[krisskross in reply to MsLockYourPosts]

histology showed lymphoproliferative disorder(EBV positive/CD30 positive/CD20 positive) with no evidence of CLL or SLL. No idea what it all means.