Richter Transformation possible?

[writepa]

While I'm waiting for my husband Fish test, I'm reading about Richter transformation and feel scared as my husband has some of the symtoms:

- enlarged spleen, quite massive, developed quite quick within one year

- always feel hot (sweat)

- lose weight - about 2 kg in 6 months

- low platelet -77 ( last year 127)

- fever: just one or twice last year

- enlarged liver -mild

- normal LDH

- calci ion is at low end

- RBC and HGB normal

- advanced stage of CLL (stage 4) when diagnosed this year - actually last year lymphocytes already high and platelet alread at 127 but doctor didnt say anything

So it he Richter transformation possible with this symptoms? or we have to see IGVH /Fish test or other tests to conclude?

Thank you.

[HopeME]

Hi Writepa

Many of us are diagnosed at stage 4. I for one was diagnosed at stage four two years ago this month. In our disease stage four is fairly typical and indicates that the disease is widespread in the patients body which is unsurprising given it is a disease of the blood/lymph nodes. Stage four isn’t as bad as it sounds.

You are making the mistake that many of us make especially at the time of diagnosis. That mistake is googling the various possibilities the disease can take and assuming they apply to us today. It is unlikely he is experiencing a Richter’s transformation. Rather, he may be in need of his first treatment or perhaps he is many months/years away from treatment. It’s hard to say. You are doing the right thing by getting your husband to a specialist. Please try and relax. It is highly unlikely your husband’s disease is as advanced as you fear.

Best

Mark

[writepa in reply to HopeME]

Thank you Mark. you really comfort me. My doctor appointment at MD Anderson is on Nov 4th with Dr Jain and between now and then it's really on fire. I may need to calm down.

Btw, have you started treatment yet or still in W&W?

[HopeME in reply to writepa]

Many would agree that MD Anderson is the best hospital in the world for treatment of CLL and Dr. Jain’s name comes up often as an excellent doctor. You’re coming a long way to get there but it will be worth it. Hopefully, after your appointment you and your husband will have time for some sightseeing. Please try and focus your energies on that aspect of your trip. 😃

[Awksom in reply to HopeME]

Perfect advice. We all worry to some extent. Dr Google unfortunately never finished his medical degree!

[AussieNeil Partner Administrator]

I wouldn't worry about your husband developing Richter's Transformation based on just those symptoms, which are more in line with standard CLL symptoms. (That's probably why his doctor didn't say anything). Richter's Transformation is an aggressive lymphoma and your husband's health would quickly deteriorate. I appreciate how frightening it is to have this worry about your spouse, but I hope you soon get more reassuring replies. It is more probable that your husband is approaching the need for treatment for his CLL. Should that prove necessary, modern drugs will quickly reverse the symptoms you related.

With regard to other blood tests, one FISH result can indicate a higher risk of Richter's Transformation, particularly if NOTCH1 mutation is present. That would take a while to check and only shows a higher risk if present.

Meanwhile, if you have a recent blood biochemistry panel, Richter's can often (but not always) be indicated by a very high jump in the LDH reading of several times his baseline average, plus a lymph node may begin to quickly grow.

Neil

[Morayfirth-loon]

Hi writepa,

Please be careful, for I think that you are making a lot of assumptions, which can sometimes be more mentally destructive than positive.

The symptoms you quote are common CLL symptoms.

I underwent a Richters Transformation in March 2018. I had a lot of symptoms, some similar to those you state, however, it is imperative to understand that every CLL/SLL patient is different. For me confirmation was only possible following a surgical biopsy of a neck node and of a tumour which had developed in the submandibular tract which turned out to be a DLBCL. This is the most common, although very rare, result of a Richters Transformation. RT is very rare only effecting a few CLL patients in any one year.

It is also dangerous to google RT, for in the main they only state the danger of a DLBCL. What is not emphasised enough is that DLBCL is completely curable with either a six cycle of R-CHOP, sometimes followed by a stem cell transplant or a transplant carried out initially.

In my case the R-CHOP worked even though my chemo cycles took much longer than normal due to the fact that I have familial thrumbocytopenia which keeps my platelets around the 30. I now get monitored every eight weeks for the first year to ensure that it is infact in full remission.

Good wishes for the future.

[writepa in reply to Morayfirth-loon]

thank you for your note. good to hear the treatment works well for you. Wish you in full remission for a very long long time.

[Hidden in reply to writepa]

Dr. Google is bad IF you don't pay attention to dates of articles AND dates or material they reference. Blood cancer articles are notorious for referencing old stuff and statistics. Most statistical stuff is only done every 5 years and then what it's referencing is still old.

[DaveGH]

Hi writepa

When I was first diagnosed with CLL my Dr told me to be careful of Dr Google. Make a list of questions to ask Dr Jain. Chances are that most of them will be answered before you even get to them. The chances are very low that your husband has had a Richter’s Transformation. Giving Google a rest for awhile will help you calm down.

I was similar to Morayfirth-loon. I also had a Richter’s Transformation and was diagnosed in February of 2019 through a biopsy. I was treated with R-CHOP and then a Stem Cell Transplant.

Good luck at your Dr visit,

Dave

[writepa in reply to DaveGH]

Thank you Dave. It was nice of you.

[Hidden in reply to DaveGH]

Hi Dave , how are you doing ?

[DaveGH in reply to Hidden]

Hi Mambo_taxi,

I’m doing ok. Still struggling to recover from my CAR T procedure. I go for my baseline CT scan tomorrow and then we wait for my 100day PET scan.

How is your father?

Dave

[emmiekay]

Hi, I had RT in 2007 and did not have any of those symptoms. My main symptom was itching and a tumor that literally came through my skin on my breast. Has your husband had any treatments yet?

[writepa in reply to emmiekay]

Not yet. But I think he will have soon after meeting with the doctor.

[cyclist22]

When my wife had Richter's transformation, her MD Anderson doctor told us that it didn't matter, the treatment was the same. That was 10 yrs ago and she is doing great. (I have CLL now too).

[DaveGH]

No, a bone marrow transplant is different than CAR T. It’s best to just look them up.

I had an auto stem cell transplant and that failed so I just finished CAR T.

Dave

[Jm954 Administrator in reply to DaveGH]

Dave,

good to see you here. Hope you are doing well.

Jackie

[DaveGH in reply to Jm954]

Hi Jackie. I’m doing ok. I struggle some days but that seems to be lessening. I’ve been working with PT and slowly I seem to be gaining strength. I go for my CT today. They will be doing a baseline of my neck, chest and abdomen.

Dave

[Jm954 Administrator in reply to DaveGH]

It's not easy is it? Fingers crossed for the best results possible on your CT.

Take care

Jackie