Richters maybe : Well, the dreaded word Richters... - CLL Support

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Richters maybe

Alex830 profile image
39 Replies

Well, the dreaded word Richters has come up. Next week going in for a lymph node biopsy and full body Pet/CT scan. Send positive thoughts my way please.

39 Replies
country76 profile image
country76

Oh no! Hope it isn't true. Sending positive thoughts and prayers!

MisfitK profile image
MisfitK

Hugs, thoughts, and prayers coming your way!

Newdawn profile image
NewdawnAdministrator

Sending every positive and supportive wish possible Alex. This must be such a worrying time for you but the results are not in yet and don’t forget that even if it is RT, that is curable!

Please keep us all updated.

Newdawn

Big_Dee profile image
Big_Dee

Hello Alex830

I am not a doctor. Went through same thing in August. Consulted with my CLL Specialist. He said LDH was too low and stable and I needed PET scan before doing lymph node biopsy. Second CLL Specialist said always do PET scan first, otherwise they are just guessing at which lymph to do biopsy on. CT scan should show if bulky lymph nodes are present. Two symptoms of RT are very aggressive CLL doubling time of less than every 6 months. Mine was 2.5 months doubling of ALC. Other symptom was massive bulky lymph nodes. When I went through possible Richters Transformation evaluation I also needed to start treatment for CLL due to low RBC and platelets counts. Hope you can deal with each separately. keep your chin up, there are a lot of false positives in RT evaluations. Unlike CLL, RT can be cured, many new treatments. Blessings.

AussieNeil profile image
AussieNeilAdministrator in reply to Big_Dee

LDH (Lactate Dehydrogenase), can also jump up to several times the baseline (average) result with RT.

Big_Dee profile image
Big_Dee in reply to AussieNeil

Hello AussieNeil

You never know. My LDH shot up to 900+ from 220+when I started V&O which was started one week after RT scare. Within one week after LDH 900+, it was down to 400+ and trending down to 120-140 average for 2-3 months. I was doing blood testing every week for couple of months until blood tests stabilized. I now blood test every month right before Gazya infusion. I am glad I don't have RT, as doubtful that I could have survived CLL long enough to do RT treatment. Seems like these RT scares come at real inopportune times.

Justasheet1 profile image
Justasheet1

🙏🏻💪

SofiaDeo profile image
SofiaDeo

When did you stop the Calquence? Remember, there can be a pseudo-Richters thing after stopping BTK's. I had one after stopping the trial drug CG-806, which isn't a "full on" BTK but similar mechanism of action. Is your LDH skyrocketing, do you feel awful? Or is it that bloodwork came back screwy, and they ordered the biopsy and PET? If only the latter, please consider a repeat bloodwork before all the testing. Or, at least in addition too. And even if it comes backpossible/positive, consider sending it out somewhere like the Mayo to see if not a true Richter's but another DLBCL.

Alex830 profile image
Alex830 in reply to SofiaDeo

I am still taking Calquence. I am supposed to start a trial mid December. Sudden onset of a lot of bulky nodes, LDH rise, kappa light chains doubled and big drop in GFR and hemoglobin. Bloodwork has been repeated. Hopefully the pet scan will give us some answers.

AussieNeil profile image
AussieNeilAdministrator in reply to Alex830

You can get these symptoms if you have developed resistance to Calquence, though the onset of bulky nodes is generally more gradual than sudden. My hope is for you to be accepted onto this trial for your CLL relapsing, not RT.

Neil

Guffy profile image
Guffy

Whatever happens, you have the strength and wisdom to deal with this, and you will. Peace and blessing.❤️

DoriZett profile image
DoriZett

Sending best thoughts to you. Please let us know how you are doing as results come in.

Fowey2009 profile image
Fowey2009

All the very best.

My husband was recently diagnosed with Richters (Hodgkins). They started chemo immediately and he has had an amazing improvement. He was previously very unwell but since he started chemo he is so much better.

His consultant warned us not to read anything more than 1 year old as treatments have moved on rapidly so there is much more hope for RT.

Everyone on this forum has been so supportive so please tell us how you get on.

Beryl

Cheltman profile image
Cheltman

Alex830

I had r the same feeling in March this year. Lymph swelling blood numbers all going the wrong way and feeling really rough. The pre diagnosis filled me with dread. I had the PET CT scan to identify the potential hot spot for the biopsy and waited for the results to come back. No hot spots located, the consultant said it doesn’t look like it is Richters. This was a relief more than I could imagine. I was was put on Venetoclax and started Rituximab in June and finished my last cycle yesterday and feeling good. Wishing you the same diagnosis and outcome, my thoughts are with you. Stay strong and positive.💚

MovingForward4423 profile image
MovingForward4423

when I was first diagnosed they thought I had Ritchers. Aggressive doubling of Lymphocytes, bulky nodes. Had PET, that was negative…. Keep your chin up, RT is rare.

Fran57 profile image
Fran57

👍🏻🙏

mrsjsmith profile image
mrsjsmith

Alex,

Sending positive thoughts to you. I still remember the horror I felt when a consultant said they thought my disease had progressed to Richters, but after various tests mine all came back negative, but if not I have a friend who who successfully went through treatment last year.

Colette 🤞

terryI_uk profile image
terryI_uk

Positive thoughts coming your way Alex, God bless, Terry

kitchengardener2 profile image
kitchengardener2

Prayers Alex stay strong 💪

LeoPa profile image
LeoPa

May it be a false alarm! 🙏

Ptown profile image
Ptown

Hello Alex, What a concerning time for you and your family! I hope you can feel the support being sent to you from around the globe and that this sustains you during this time of seeking answers and making new plans to tackle this situation. Your community is with you all the way. Carolyn

Samm22 profile image
Samm22

Stay strong Alex. This is worrisome but I have heard treatments for Richters getting better. My genetic markers give me a very high chance of getting Richters. Difficulty time but we are here for support. Suzanne

Suzieinwv profile image
Suzieinwv

Sending you much love & many prayers, Alex. I hope it isn't Richters, but treatments are giving much more hope.

noeagaman profile image
noeagaman

Sending positive thoughts your way and praying for you Alex. I had to stop FCR after four rounds about 5 years ago due to drastic blood count drops and they thought it was Rictors. After a bone marrow biopsy and several other tests, the ruled-out RT and said that I must have been allergic to one of the chemo drugs. Hopefully your reaction is something similar. If it is RT, then I pray that you will get through the treatment for that and be cured.

Chris

StrengthHopeLove profile image
StrengthHopeLove

Hang in there. I’ve had a lymph node excised a year ago and it was just a random infection not Richters. It’s always something they look to rule out. Sending you positive thoughts!

Bajabarb profile image
Bajabarb

Best wishes, Alex, for a positive outcome after your tests next week. Will be thinking about you!

Thundercat2 profile image
Thundercat2

Praying for the best outcome for you!

New-bee-cell profile image
New-bee-cell

🙂〰️〰️〰️〰️positive thoughts: lots of recent progress in treatment of RT; could be something more benign; we’re rooting for you. Hoping you holiday season is filled with peace and moments of joy!

Nelka profile image
Nelka

I was diagnosed with Richter’s in 2020 at the University of Chicago Medical Hospitals. Immediately went to Northwestern Medical for a second opinion. Richter's wasn't confirmed. In 2021 I had CAR-T thanks to my oncologist Leo Gordon. Now, a year later, no cancer, no medication, no vaccination, gym every day. My life is beautiful!! Be positive, switch to Macrobiotics (I practice it and highly recommend it), and take care.

GratefulOne profile image
GratefulOne

Sending prayers🙏🏻

Jetliz profile image
Jetliz

Some positive responses in your replies and all of us I'm sure feeling for you and understand your anxiety. Take care

Stamphappy profile image
Stamphappy

Hello Alex830. Thank you for shsring your journey. My heartfelt thoughts and prayers and with you along with everyone else on this site. I am 13q14 deleted, Trisomy 12, unmutated in Watch & Wait...I feel your fear. When you go into your appointment, please remember, this community comes together from all over the world and we are all with you...hugs!

Please keep us updated.

SKINOW profile image
SKINOW

My white count went from 55,000 on October 31 to 130,000 on November 20. nurse practitioner that I saw was certain that I had Richters transformation. I had a pet scan the next day, which showed no increased lymph node size and no hot lymph nodes. My oncology specialist indicated that I would need to begin treatment. Also experiencing fatigue. However, red cells and platelets rock solid. Before looking at treatment choices she immediately ordered the new NGS and FISH. First things first- Pet Scan. BTW, until I saw the pet scan results, I was devastated. Now, I'm just unhappy. And now, thinking about you. Try not to despair.

Also, which no one had told me, do not exercise the day before or day of the pet scan. I actually got delayed one day.

Ghounds profile image
Ghounds

Sending my best wishes, fingers crossed the scan shows nothing of undue concern.

Poodle2 profile image
Poodle2

Thinking of you. Also had an ultrasound biopsy done and it was full of CLL cells. Hope you have the same outcome 🙏🏻🙏🏻🙏🏻❤️❤️❤️

Analeese profile image
Analeese

So sorry you are experiencing this. I am joining everyone with wishes of a good outcome. It is somewhat comforting to see that even with Richters there are treatments available that are successful. Strength and courage with your testing. Prayers for negative Richters results.

Sixtyish profile image
Sixtyish

Dear Alex, nothing to offer in the way of experience or expertise, but you have my very very best wishes 🌷

SDK89011 profile image
SDK89011

I’ll be praying for you 🙏🏼☦️

bayside64 profile image
bayside64

Wishing you all the best.

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