Richters Biopsy Update

[norahmaria]

Hi everyone, just thought I would post an update on my axillary node biopsy. The results showed that there was no evidence of RT in my lymph node. This good news was quickly followed by a warning that just because it didnt show up in the axillary node it didnt mean that that the richters hadnt returned as apparently doesnt show up in every node ! This left me feeling very unsure, relieved but still worried...certainly the news did not give me the peace of mind I was hoping for. My consultant mentioned that I may have yet a other bone marrow test to see how much the cll has risen in my marrow and that it may show up richters but then again only if it is in my marrow ! I rang the hospital to find out when my bone marrow aspirate is to be told that it was decided at the MDT meeting that in fact the aspirate may not be useful and so I am to have a PET scan. I see my consultant later this week and will update my post. Best wishes everyone xx

[Newdawn Administrator]

Thanks for the update norahmaria, wondered how it was going for you. What a very unsettling time you're having. Hope you are coping well and sending huge support to you and hoping for the very very best outcome.

Good news so far and a PET scan has got to be preferable to a BMB.

Stay strong and positive!

Newdawn x

[norahmaria in reply to Newdawn]

Thank you for your good wishes Newdawn. Yes I have very mixed feelings atm, it was good news, sort of, but not conclusive . I think the PET scan is to give the team a clearer picture as to whether the RT has returned or whether it is 'just' the CLL, in which case as long as I can cope withe fatigue and tirdness I wouldnt need to go back on treatment yet as my bloods are all good and within normal range ( tho the neuts are a bit low at 1.5). At the last visit my consultant mentioned that I may need to back on FCR which I had in 2009 (this was when he was talking about me having a bone marrow test and if the cells had risen significantly ....which is no longer happening !). At the previous visit he said I would probably be offered Ibrutinib if the biopsy showed the RT had returned .... which it didnt ! I hope to get a clearer picture when I see him on thursday as im getting a bit stressed about the length of time I seem to be waiting for decisions to be made, not that im in any rush to start treatment again ! My other concern is that ive read here that the compassionate use of ibrutinib is closing at the end of september and im worried im running out of time. I guess its good news that theyre not rushing and want to be absolutely sure whether the RT has come back or not. Thank you for your swift reply. I hope you are doing ok. Xx

[AussieNeil Administrator in reply to norahmaria]

Norahmaria, here's a fairly recent paper on the diagnosis and treatment of Richters:

bloodjournal.org/content/12...

Note: [i"]Although novel agents such as ibrutinib (a Bruton’s tyrosine kinase inhibitor) and idelalisib (a phosphatidylinositide 3-kinase δ inhibitor) have shown remarkable efficacy in CLL, little is known about their relationship to RS."{/i]

Then read the section Novel therapeutic approaches which goes into the use of Ibrutinib in treating Richter's Transformation.

I hope that you'll quickly find out via your PET scan results (which is the appropriate technique to identify any fast growing lymph tissue such as Richters), that this paper isn't relevant to you!

Neil

[norahmaria in reply to AussieNeil]

Thank you aussieneil. Just read the paper...im still hopeful and trying hard to be positive

[Cllcanada Top Poster CURE Hero in reply to norahmaria]

PET scan would be my choice... it will show if there RT-DLBCL is involved.

Sorry, I can't remember ...were you treated for RT with RCHOP or another variant?

[norahmaria in reply to Cllcanada]

I was treated with 6 rounds of CHOP and ofatumumab in 2012.. finished the maintainance period of ofatumumab in january 2013.

[Hidden]

Hi norahmaria

you must be feeling worn down with all this uncertainty and worry. Hope this soon gets resolved by the scan and that you will soon be feeling better. Thinking of you and sending best wishes.

Bubnjay

[norahmaria in reply to Hidden]

Thank you for your kind words of support Bubnjay. Best wishes to you too.

[fieldmeadow]

It's been a long cll journey for you thus far. Do hope your scan results bring good news. Keep in touch. We are all rooting for you.

[norahmaria in reply to fieldmeadow]

Thank you fieldmeadow. Sending best wishes right back to you x

[buckinhard]

It can certainly be difficult to be patient and calm while the time ticks away. You've gone through so much already, I'm hoping for a favorable PET, not RT. Keep us all posted !

Denise

[norahmaria in reply to buckinhard]

Thank you for taking the time to offer words of support Denise. Best wishes.

[buckinhard]

hi norahmaria ! I know it's difficult just waiting for an answer sometime in the future with something as important as Richters. I hope you find something to take your mind off of it while you're kind of in limbo. This cancer isn't an easy one to "wait on" till it shows it's "stripes" Praying for you and every one here on this site. Be as good to your self as possible and enjoy as much as you can each day.

Denise

[norahmaria in reply to buckinhard]

Thank you for your lovely, encouraging words Denise. I appreciate you thinking of me. Yes its a horrible disease having a black cloud constantly looming. We must enjoy the sunny days. Best wishes to you. I hope you are doing ok xxxx