So I got the shock of my life. My hematologist wants to have me undergo a fine needle biopsy to rule out RS.
They will biopsy the largest node. It’s 5 cm.
Well that was a kick to the stomach.
Lymph node biopsy to rule out Richtors - CLL Support
Lymph node biopsy to rule out Richtors
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Lola69
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CllcanadaTop Poster CURE Hero
Oh my... Lola... I know that feeling... you know how to find me if I can be of any help...
~chris 🇨🇦
Hi Chris - I believe Lola is IGHV mutated - wouldn't it be less likely to develop Richter's?
Jm954Administrator
My fingers are crossed that you’re ok Lola x
NewdawnAdministrator
Sending supportive hugs Lola. How are you coping?
Newdawn
My moral is down after hearing they need to test for RS.
If it’s Richtors I am out of here
You’re going through hell at the moment Lola. As if bad shingles wasn’t enough to cope with!
Your nodes have enlarged now you’re off Ibrutinib and you know you need that drug to keep the massive nodes down. So as Mystic says, they’re following procedure.
We all live in fear of RT Lola but people are recovering from it now. Look at our own Chris!
Stay strong but find someone to talk to there because this is tough to cope with.
Best wishes,
Newdawn
Thanks Dawn!
Chris is a unique case. He had a de novo facto R/S which carries a better prognosis than the other one. I came here for shingles They removed my imbruvica due to the IV but I have them on me! ( no I won’t take them)
If you are going through hell keep going. —William Shakespeare
I remember casually asking the haematologist what he thought was going on with my tonsils. Up till then the debate was CLL vs regular to tonsillitis. When he said he thought it was most likely an aggressive transformation to a high grade lymphoma (essentially richters tho he didn’t use the word) that was a huge shock. But try to not pay the debt of worry that may well not come true. Think of the biopsy as an insurance policy rather than accepting the diagnosis already. Hard to do I know. So easy to allow ourselves to assume the worst especially when we are stuck in hospital (as I was).
Worry is indeed paying the interest on a debt that is not yet due and may not be due. Surprise surprise my massive tonsils were just regular CLL and the rest of my nodes were just a few months behind being a bit sluggish but they would grow too.
It’s good you have doctors who want to take good care of you and be safe.
It’s good that ibrutinib has been working so well for you except for the whole shingles thing.
Were you already on acyclovir or one of the other antivirals before you got the shingles? One thing I don’t understand is why some doctors treat everyone with prophylactic anti infectives and some don’t. And even what the correct protocol should be.
I’ve just had a third drug added to mine so right now I take acyclovir three times a day co trimoxaxole Mon wed and Friday and azithromycin Monday to Friday. I use a dosset box to keep on top of it all.
I’ve been told that if all that fails and I still get infections I’d be a candidate for immunoglobulin replacement and it was when I asked about that the doctor added the azithromycin. I believe you have to “fail” on prophylactic anti infectives AND have low antibody levels before they will get you on to the replacement therapy. Well worth getting your levels checked (they don’t seem to do that routinely unless asked) and getting all infections tracked by a visit to a GP and/or the Haem and making sure that at each visit you let them know what infections you have had.
But another huge bit of advice I have for any infection is to extend the length of antibiotic or fungal or viral treatments.
I had a very bothersome double whammy of bacterial and fungus throat infections that kept coming back a while ago. Eventually we have me two weeks of oral antibiotics instead of one and a month of anti thrush treatment (both of which by the way are discussed in the relevant SPCs as the approach for those immune suppressed or in the case of the thrush just actually a normal recommendation!).
Anyway those particular recurrent problems just disappeared after that.
The other thing that helps is the old tazocin bombardment they give you if they think you may be going septic. Boy does hat clear out the synuses etc nicely!
I honestly think we need to do a better job at preventing infection and then also at eradicating it properly when it comes and we are I believe susceptible to low grade on going low grade infections that can then recur and cause problems. Like my throat was. For months and months I always had a slightly red throat. After the longer treatment that was no more.
Weird that there’s not more universal agreement about what we should Take and when. Eg if you have a spleen removed for whatever reason you are always left on a specific antibiotic for life. If you have AIDS they have clear protocols. And there are various studies done in immune deficiency to identify good protocols. Not seen anything like that for CLL. If anyone is aware of any good studies would be interesting to look into it.
Sorry for the long winded reply!
Hope you feel better soon Lola and that this biopsy is just a false alarm and the result is reassuring.
I agree with you on the longer anti biotic treatment. 6 weeks of infections and 7 days of amoxicillin did nothing for my constant sore swollen and red tonsils, which my haematology doctor calls, my chunky tonsils.
One week of 2 x Doxicycilin cleared it up and 1 every day for last 2 weeks is keeping it away.
I take acyclovir twice a day.
If we are immune suppressed and open to both bacterial and viral infections, surely anti viral treatments and longer antibiotic treatments should be par for the course, shouldn't they?
Anne
Lots of great information there Adrian, thank you. Love the motto on worry. My CLL doctor put me on prophylactic and 500mg Valacyclovir recently. My GP lightly suggested it for the past couple years. I am WW since 2015 June - looking at blood work most likely came into being late 2013 early 2014. CLL metrics stable and not treatment “appropriate” yet. I had a severe Shingles outbreak - 1st one ever about a year after CLL diagnosis. Typical stomach/mid right back “tire tread”.
Since then I have been dogged by constant pain deep in my body, RIGHT side, (like a side ache when you swim too soon after you eat) itchy on top, and 2 or 3 “mini” skin eruptions events but no blisters. Tiny bumps, very itchy but not full blown.
This pain travels down my right side, ends up/stops at my right testicle which gets mildly painful. CT, Ultra-sounds, including testicles, zippo. Clear. Grateful. GP swears it’s the shingles virus, that has entered the lower vertebrae nerve bundle and is following a known path.
This condition strikes - months a year. Takes weeks to abate. Getting worse. CLL doctor not pegging to CLL specifically.
Going to see Kidney Doc and urologist soon to double check those but recent CT by CLL doc shows those normal - along with all other internal organs in the abdomen. Seeing the Gastro doc when I get my lovely colonoscopy in the next month also. I think the whole concept of secondary cancers has got me completely freaked out.
Fortunately, I also have an independent allergist who is also a immunologist. Without hesitation she separately ran all my blood work including Lymphocytes subsets, which includes antibodies, and also a streptococcus pneumonia panel to see if my body was developing the proper antibodies to the pneumonia Vaccine that she had given me. Turns out it has not and she has readministered the pneumonia vaccine and we will return retest those subsets in a month.
So, in regard to your comments about the need to have separate blood work done with respect to the whole antibody area this is something that is not standard for the CLL doctors or the GPs unless your condition is very severe or I suppose on the way to requiring treatment.
Even on watch and wait and a supposedly “healthy condition” my immune system is materially suppressed.
Immunoglobulin G is at 609 immunoglobulin M is at 22 and my immunoglobulin A is at 80. My T cells are also low - specifically CD 4 and CD 8. Basically like everyone else my B cells are not doing the job and are not producing enough or adequate antibodies. The CLL B cells are very lazy nonproductive cells! My white blood cell count hovers around 16,000 and my lymphocytes are about 72%.
My allergist/immunologist is going to recommend IVIG injections if next months bloodwork does not show an antibody response to the pneumonia vaccine. She will of course coordinate this with my CLL doctor.
But this has proven to me the value of having a team of doctors and not relying on one or two only. Not to throw my GP under the bus either, he is a highly regarded Internist that is widely known for his work in lupus, fibromyalgia, rheumatoid arthritis and immuno suppressed-disorders.
That is my long winded reply on the two areas that you have been talking about.
THANK YOU to everyone on this group/community who are so helpful and share so much information and my heart goes out to everyone struggling with all of the varying degrees of maladies caused by see CLL - you are all an inspiration and a source of great information
❤️❤️❤️❤️❤️❤️
My hematologist uses the word “ transformation “
I was not on any antivirals Adrian !
At first I thought the pain was from a kidney stone
We are all hanging in there with you Lola. I hope you may be beginning to feel a bit better. Still not clear to me exactly what’s been going on when. I’m guessing it’s all quite a muddle. It’s worth trying to get a handle on what’s been happening tho and ask the doctors to explain it to you then ask the nurses to explain that afterwards. Often I think the health professionals think that we understand when maybe we don’t.
I guess you’ve been off ibrutinib now for a while so some of your symptoms may just be the underlying illness coming back because of that. If for example the nodes have only been growing since stopping the drug that makes a lot of sense and wouldn’t be as concerning.
Sounds like ibrutinib was weakening your immune system which is probably why you got the shingles. One question is did you already have issues with platelets and neutrophil levels before stopping the ibrutinib or did they come on after.
It’s not clear to me if your doctors are still hoping to restart the ibrutinib at some point. And if so perhaps a lot of your problems would get back into control.
Alternatively maybe they are thinking of switching you onto something else.
It’s definitely worth asking them to explain simply to you what they believe is going on and what the plans are.
Really hoping that the biopsy result will just show plain old CLL.
We are all rooting for you Lola!
Lola,
I know what you are going through. Tested three times and all came back negative ! Wishing you the same.
Colette x
I was tested once (2015)it was negative but my immune system was not shot.
Lola I was sick each time ! 1st was when tonsils were 4+ and crossing over, lymphadenopathy and I was deemed ‘malnourished ‘ .... first ever ! Second was when they thought Ibrutinib had failed.
C x
Lola the immune system being shot and a possible transformation are two unrelated things. You are no more likely to be transformed just because you have shingles etc. In fact your immune system being shot may just be a case of the ibrutinib working a little bit TOO well! ALL treatments for cll make our immunity WORSE initially. This is something that I don’t think is stressed often enough to us or perhaps to some of our treating doctors.
How are your bloods looking now? Neutrophils in a more normal range?
Oh dear! Always something. Sending you a hug! 💕
Lola,
I know this must be so worrisome but I suspect this is routine practice. So glad Colette posted her experiences. Thoughts are with you and please keep us posted.
Big hug,
D.
Yes. It is a routine procedure to rule out Richter’s. I had a similar experience when I changed to my current CLL doctor in November. The first thing he did was order a Pet Scan. He didn’t tell me upfront that he was trying to eliminate Richter’s but I figured it out quickly. I held my breath for a week and it came back negative. Stay positive Lola. This disease is like a roller coaster. You are in a deep trough at the moment. It won’t last. I know it is difficult but be thankful you have a very proactive medical team.
He said my blood work is off wack and wants to rule out R! Well of course it’s off wack I am battling shingles
Exactly. He knows it could be the impact of the shingles but he must rule out Richter’s as time is of the essence if you do have it. Positive energy heading your way from Boston.
Boston Bruins rule!
Wow. From someone in Montreal that is high praise as generally the Bruins aren’t well liked there. And don’t forget about those Patriots!
Montreal has a huge Boston Bruins fans. My bro has over a 10K collection.
Every year it’s a big anticipation. Montreal Canadians - Boston Bruins.
We go way back as Bobby Orr
Lola69 how are you doing today?
I am ok was to weak to write. Dr. Assouline is taking over tomorrow bmb
Lola we understand that you’ve been ill and with your bloods all over the place it’s a wonder you’ve had any energy to write over the last week or so. Sounds like they are looking out for you and soon hopefully this set back will be a distant memory for you! We are rooting for you. Even if you can just manage one or two words that will be a huge encouragement for us Eg
“Bit better”
“bit worse”
“Still laughing”
“Food terrible!”
Etc etc
Hang in there. Know you have a global group of friends behind you. Being in hospital for a long time can feel like you are enveloped in a parallel universe. You will hopefully be out of there before too long!
Thank you, Lola for the word today. We are here and all are concerned when we don't hear, but your task is to rest and take care of you, not us, of course.
Is the Dr. who is going to "take over", the hemo/oncologist?
Hoping for a stronger you today--can you eat at all?
Thinking about you hun.
Newdawn x
Thx Dawn!!sorry could not write I was really out of it. x tomorrow Dr. Sarit Assouline will perform a bmb I trust her completely she also said she doubts I have RT. I hope she’s right.
Ask her all the questions you can think of. It will hopefully bring some reassurance for you. I guess my top one is have the nodes only been growing since you stopped the ibrutinib because of the shingles? If so then stopping the ibrutinib would most likely be the trigger perhaps? I’m not an expert but it sounds like you have a doctor there who is. Maybe write a list of questions for her for the next time you see her?
Dr. Assouline sounds absolutely top notch Lola and I’m sure will get to grips with all the issues for you.
You need the sleep because nights in hospital are not always restful.
Take care and post when you feel up to it.
Newdawn
Last night they woke me up at 2 am for an emergency chest x Ray. Said I have pneumonia.
Horrible thing is the machine was ringing all night nobody came to help.
I will report it
Wow! Now pneumonia? You sure are being dragged through the wringer Lola. Hang in there. I'm praying for a huge turn around for you and good health.
Chris
I don’t feel like I have pneumonia
That's good! How are you feeling Lola? Any news on when your biopsy results are going to be through?
Sending lots of good wishes xxxx
Thanks JM appreciate your good wishes. I say if it was a Richtors I would have known by now.
I feel ok. I am fed up of this place especially at night where they come up with mysterious illness
I just may have to put a private nurse.
Last night I had pneumonia now am breathing on my own.
I'm not surprised that you're fed up but I can't tell you how glad I am that you feel OK. 
It's horrible being in hospital and you've had a really tough time with lots of poking, prodding and worrying suggestions.
I hope you're right about the Richter's, I don't want to tempt fate but I'm inclined to agree with you hun.
How is the shingles and pain?
xxx
Have they started you on antibiotics for the pneumonia? Maybe that’s why you are feeling a bit better? Did the chest X-ray confirm pneumonia?
JigFettlerVolunteer
That IS tough. Do you know the reason for yr Drs concern re RS?
Pls tell us how you go!
Sending strength and good wishes.
Jig
Growing nodes and high LDH
I guess it's a good thing your docs are energetic and engaged with your CLL journey. Please do let's us know how it goes.
I have learnt so much about how to cope from this Forum, and the experiences of the members. My journey to date has been relatively straight forward.
Managing uncertainty is helped by knowledge and understanding. And sharing.
Seek joy!
Jig
Were the nodes growing before you stopped the ibrutinib due to the shingles or only after? If after then we know that it’s most likely just the fact you stopped the treatment. Even if before richters transformation is NOT the only explanation for that or even the most likely one. So we are all hoping with you for good news!
Oh Lola! You are having such a tough time. Fingers,eyes and legs crossed that test comes back negative. Hoping and praying that all will be fine.🙏💕
Sending hugs and positive thoughts!!!
Lola keep fighting and keep your chin up girl. I am hoping your test comes back negative and that you beat back the shingles. I was going through a really rough patch last year at exactly this time, it’s hard. Cll does suck. Keep fighting girl. Lots of people pulling for you on here. Jeff
cllady01Former Volunteer
So sorry to hear of your distressful situation, Lola.
Please ask for an RN or a social worker to talk with. It might help you to talk it out as far as the fear goes--not that it will not be there, but if you can hear yourself talking with one who truly listens (think NewDawn type), you can somewhat settle yourself down once you have "let it all out."
We are here sending as much love and positivity as cyberville will allow.
I have had many wonderful people come talk to me including everyone here on the forum. Odd thing is I don’t feel like I have RS
That's got to lift your spirits, given the rough times you've been through lately. I think that's very encouraging news .
You must be heartily fed up with having your veins punctured 
. Good to see you keeping in touch.
I dream of the day I can use both hands to wash my hair.
I am no longer in isolation and can walk the corridors. Good I will actually see what they do at night.
wheelchair races in the corridors, making water guns out of large syringes, making paper airplanes out of bandage wrappers - actually not really. Nurses are usually run off their feet even on night shifts especially in critical care areas or where patients are very ill and require very close monitoring.
Really hope that you will be receiving good news about the biopsy very soon, and that you are getting the care you need.
SB
Great that you are free of your four walls AND feel up to going for a walk. I find the restrictions of not being able to go for walks one of the more annoying facets of hospital stays when severely neutropenic.
People with Richter’s are said to feel very unwell.
I feel unwell with shingles. Shingles is the worse thing that ever happened because of shingles I had to stop imbruvica
I had conglomerat lymph nodes in abdomen 3x in 7 cm.I had'not biopsy,I had'not Pet Scan.My LDH was 800.Then begin Therapy R+Chl.
I beleive and I hope it is not Richter.You have good hematologist.
Greeting and good luck,Lola!
When you say "Odd thing is I don’t feel like I have RS", it reminds me that when I was tested for Richters in 2015 one of my haematologists said: "He doesn't look like he's got RT!" It kept me buoyed for the week it took for the results to come back after I had a node removed. When the surgeon rang with the results, my hands were shaking so much I dropped my phone and I had to listen to a voice message to hear I was in the clear. My thoughts and wishes go out to you. It's always a tense time. And you obviously haven't lost your sense of humour! ("Good I will actually see what they do at night" is very funny...
I most certainly don't feel like I have RT! I have none of the symptoms except tiredness but I work WAY too much and am a teacher! I am purposefully TRYING to lose weight and since all this started/stopping Ibrutinib I have *GAINED* 6 pounds in ~2-3 weeks!
But I do question how they haven't given you a PET Scan yet before even suggesting it. I had the CT at the ER then they said the Ibrutinib wasn't working BUT wanted to do a PET Scan "just to be safe and rule out RT"
How will they know which Lymph node to biopsy?
I'm so sorry you have to go through all this...
So sorry you are having to go through this too. It’s something we all fear as a community and our thoughts and best wishes are sent to you and anyone else going through this process.
Newdawn
Lola sending hugs and positive thoughts!. Keep us posted.
Hope your results come negative dear
So sorry Lola - hope you beat the beast back and finally come out on the other side - enough already ...
Lola .. I am wishing you the best and hope your test comes back negative. Best wishes your John
So sorry to hear this Lola, stay strong, sending love your way ❤️
wish you the best!!!
i had a pet- tc scan and a lymph node biopsy just before treatment ...my Dr didn´t mention Richter, but that she wanted to see if there were cell proliferations on the nodes. Pathologist said that nodes biopsy were normal small cells...I didn´t pay attention and didn´t even read the results , as i was put on Ibrutinib to begin with and focused on that. But now that i read this post i might read the Biopsy results . And discuss Richter on monday with her .
BTW 3 months on Ibrutinib good labs HGB has risen , platelels are ok RCC are good , almost no side efects.....WCC down from 350.000 to 86.000 lymph nodes in neck and under my arm dissapeared.... Did a new TC to see what´s going inside my abdomen... those were the lymph nodes that made me start treatment....
Anyway let´s think positive on your test !!!
Lola, about 10 years ago, I had shingles. They were located in a line down the right side of my head, then went down the right side of my face, and into my right ear. I woke up that morning thinking I had been bitten multiple times in the head by a spider. 😳 Many people talk about the pain of shingles, but in my case, I not only had pain, but I was very, very sick! I had multiple swollen lymph nodes throughout my face, my right ear, and in my neck. It was terrible. My point is, I can totally understand why your bloodwork is jacked up. Shingles can be a very serious illness, that can trigger a severe immune system response. Hugs and prayers to you. 💕
Keep us posted. We are all sending good thought and prayers. Xox
Keep on going Lola, you'll get through this private hell. Sending you positive hugs
Lola, so sorry to read that another layer has been added to your worry. Hope the test is done quickly because waiting for the results must be so anxiety inducing. Wishing and praying for best outcome for you.
They will do the needle core biopsy this afternoon
Wishing you all the best for the biopsy, Lola... I hope you get the result very quickly and that it will be good news...
Thinking of you,
Paula
Hi Lola69. I firstly wish you well in all that you are going through. Please excuse my igronance but what is RS. I have liver cirrhosis and I have a hard time understanding the jargon for my cirrhosis. So this is a new jargon for my. I will keep you in my prayers.💕🙏💕
Wishing you luck Lola x
MsLockYourPostsPassed Volunteer
Thinking of you and wondering what you've discovered about night life there. When I was locked down, septic , my favorite person was Kelly, my night nurse, who would do her rounds, then sit and talk with me between them, as I couldn’t sleep. I hope you have someone like her to talk to about whatever. I don’t remember that we talked about medical issues- just that she was company at a scary time.
Nobody here but me Ms. I think they sleep at night. Tonight I discovered the night nurse only plugged in one pump.
Lola,be brave and patient.I sincerely beleive that everything will be fine.You have cautious hematologist.💓🍀🌻
I hope so I just find he’s so serious. Rare he laughs
It’s so much easier if they have a sense of humour! Sending you strengthening love and hugs🙂
I love to laugh so yes it’s easier. I guess he’s focused
Wow, you really are being put through a very tough time and i am amazed that you even have time or inclination to post, but so glad you are.
I would be hiding under my duvet wishing the world would disappear if i was in your situation.
Shingles really is a nasty illness and i can't imagine what you have gone through given how serious yours has been. I can only imagine what it has done to your blood work and immune system. I wish there was something we could do, but i hope that knowing so many of your HU family are here to support you, makes you feel a little better.
I sincerely hope the test is done quickly and that the results come back just as quick with the right answer.
Best wishes and lots of thoughts and prayers
Anne x
Adding my good wishes that test results will be good and that you get back to yourself very quickly !!
Look how many of us care about you !!
Be strong !!l
Hoping for good news!
Keeping everything crossed for you Lola. You have been through so much. Best wishes Jacqueline ❤️
Thinking of you today Lola and praying for a great outcome. It was about a year ago when I had a really bad reaction from my fourth FCR treatment that hospitalized me for a week. They did an R.T. test to rule that out and I know the scared feeling just imagining getting the bad news. Luckily it came back negative and I'm praying that it does for you as well.
Hang in there. You'll get through this Lola...
Chris
My husband was tested back in October. They didn’t come right out and say that but I knew. He was negative for Richter. I pray that for you as well Lola.
Lola
So sorry that you are going through such hard stressful times. Please continue to reach out to whoever you can to just talk as it can have a calming affect on your mind and body.
I’m thinking only good positive thoughts about you!!!
Wish you very good luck, you are a strong lady and will go through this. Pray for you, Lola.
Better to check early to "rule out" instead of wait ages to find out later RS was there! Hope things start getting better soon so you can put the shingles episode in the rear view mirror!
I have my door open and free to walk the corridors. Waiting for platelet Transfusion
Aside from the richters, is Venetoclax an option for you as a second line treatment? At least for now it is working for me and with no side affects. Doctors debulked/shrunk my lymph nodes with Obinutuzumab prior to the Venetoclax.
Hope the biopsy is negative and the shingles go away.
JM
Imbruvica was stopped due to shingles and not because I relapsed. My doctor wants to rule out RS before proceeding to if I continue with imbruvica or move on.
Shingles took me down down messed up all my blood. But I am positive all will be ok.
I'm so sorry to hear that. Let's hope and pray it isn't Richters.
Sending love, hugs and best wishes xx
Lola,
Everytime I see your name, I begin to say it and spell it in a British accent as in the Kink's song. Sorry, I digress. I am so hoping for a negative on the Richters. I want to get one of those blow up clown dolls, name it CLL and let you beat the stuffing out of it. I am thinking of you Lo Lo Lo Lo Lo Laaaaaah!
Sandy
You crack me up!
Oh Lola, this is like your worst nightmare.It seems you have the worst case of shingles I have ever heard of and now this worry. Your instinct is telling you it isnt that so lets all pray it isnt. Anne
Cher Lola, so sorry to read that you are in hospital! From the south of France I am sending you lots of warmth ( although it's not very warm here right now) and hope. Stick to your gut feeling! Praying for positive results. Stay strong and alert. (oh and if you think the nurses and dr's in the JG don't laugh much you should see how they are here in France. Very skilful but oh so serious. I too love to laugh and I do so readily which isn't' always appreciated here. 😒🙄😊 ) sleep well and God bless. 🙏🏼
Merci bien Princess 👸!
I hope you have that trip!!! Keep us posted. Everyone is rooting for you!!
NewdawnAdministrator
Hi Lola, just a little message to say I’m thinking of you and hoping today isn’t as wretched for you. It’s no fun being in pain and separated from our family.
Sending warm best wishes,
Newdawn
I am reading this and wondering if I have lymph node problem. I was diagnosed in 2017 and I am female nearly 79 years old. I have what I think is swollen glands on the left side of my face just under the jaw. This seems to trigger a pain in my left ear (also have tinnitus) which continues up the left side of face resulting in a feeling of slight pressure in side corner of my lest eye.
Please see your doctor about this. It could be lymph node related, but could also indicate an infection, among other things. You really need to see a doctor to get a proper diagnosis.
Sorry to hear that. So if it is then what? What would they do different?
Treatment would depend on specifically what is found. It would be different from treatment for CLL.
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