Richter's Syndrome - Possible relapse - CLL Support

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Richter's Syndrome - Possible relapse

Priss69 profile image
39 Replies

Hello friends.

I noticed a lump under the right jaw the size of an olive. Start noticing it two weeks ago. It is hard and painful to the touch. My neck hurts and I feel that I have fallen asleep. My family doctor sent me an antibiotic in case it was an infection. As you know, I have Ricthert and they gave me the R-CHOP that ends in August. I panic about a relapse. I've been with antibiotics for three days and it doesn't seem to reduce it. I don't know if anyone of you has had a relapse of the Ricthert. If it were a relapse, I suppose they would do a transplant now. A hug.

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Priss69
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39 Replies
PlanetaryKim profile image
PlanetaryKim

Sending you strength Priss! I am sure it is stressful waiting on answers for this. <3

Priss69 profile image
Priss69 in reply to PlanetaryKim

I am afraid because doctors are always very negative when they talk to you about the disease. They told me that when they told me I was in complete remission, it was very difficult to cure him. I am praying that it is not the lymphoma again.

schmitthj007 profile image
schmitthj007

Priss I am so sorry to hear about your issue. This certainly needs to be evaluated by your hematologist ASAP. There might be other explanation, however , like swollen saliva glands that can block and get painful and infected. Wishing you all the best.

81ue profile image
81ue in reply to schmitthj007

I agree, for peace of mind, see your oncologist or hematologist, not just the family doctor. I hope this resolves

Priss69 profile image
Priss69 in reply to 81ue

I'll keep you posted on everything. Thank you for being supportive.

DaveGH profile image
DaveGH

I know it is difficult not to panic. If you haven’t you should contact your Hematologist and they will probably do a CT scan. Hopefully it isn’t a lymph node. If it is they will probably do a biopsy to see what it is. Keep us up to date.

Dave

Priss69 profile image
Priss69 in reply to DaveGH

I also pray that it is not. I have two years with treatments and a leukemia, lymphoma and two breast cancers is more than enough.

DaveGH profile image
DaveGH in reply to Priss69

I agree with you. At some point enough is enough. It becomes so stressful even if something small happens. I recently bit my lip. Not a big thing except it was extremely painful and I struggled to eat and brush my teeth. Because my immune system is so poor it took 4 weeks to heal when it normally would be a few days. I was very upset.

Dave

Priss69 profile image
Priss69 in reply to DaveGH

I have broken bones. Joints, my back hurts. One thing as simple as tying my shoelaces is an ordeal for me. Cutting my toenails is an odyssey. I don't know if I could bear what I lived with the R-CHOP again. My neck is not inflamed just that lump that hurts and does not have to be there.

Italianpainter profile image
Italianpainter in reply to Priss69

Oh dear! The anxiety is the worst and it just weighs you down. It's so hard to let it go. This stinking disease made me turn back to my rosary and amazingly, it helped. I felt like I had "offered it up" and for me, i felt the lift when I started praying again. Sometimes moving beyond yourself to offer help to another can lift your spirits. You can tell me to go away, what do I know? So I'm going to ask you to help me. I read that you'd had broken bones. Was this determined to be from the CLL or lymphoma? I recently suffered a spinal fracture that my oncologist did not at first accept that there was a correlation with my cancer. I've been sending him articles and abstracts about this issue. Now hes agreed to a new bone density. Previously, mine was as good as a young woman. I'm still praying it is. Can you help me by telling me about your bone breaks? I wish you the very best. Stay strong. Pat

cajunjeff profile image
cajunjeff

Priss, sending positive waves your way. Please give us update. Jeff

Priss69 profile image
Priss69 in reply to cajunjeff

Yes. This it is. To have all my case updated to help others.

1ofakind profile image
1ofakind

Here’s hoping that this is just a glitch that can be resolved quickly ....

We can all identify with your anxiety... Any symptoms are scary but please know we are here for you to vent and we do care .... !!

Be Well... Feel Better !!

Priss69 profile image
Priss69 in reply to 1ofakind

Thank you. With Chronic Leukemia I always had nodes in my neck but it is the first time I have it under my jaw. My neck does not grow but the lump is still there. I will keep you informed. Thank you

in reply to Priss69

I don't know if this would relate to your situation, but I have the lumps under my chin . I found out a lot of it had to do with fetal problems. The Radiologist that read my CT scan even wrote about my tooth. I just wondered if you were having any dental or gum issues?

I hope it gets better and resolves soon. Take care

Paula

in reply to

I cannot seen to type anymore it was supposed to say dental not fetal sorry😕

grammydi2 profile image
grammydi2 in reply to

This is a very good point! I was going to bring up the idea that it may be a dental problem! Prissy, you might just be having some issues with a tooth that you don't realize. Maybe a trip to the dentist is in order?

Priss69 profile image
Priss69 in reply to grammydi2

They did an ultrasound and they found a 4mm node. I have a visit with my hematologist for two weeks. It has not grown anymore but it has not gone away either. Now with the Coronavirus problem I can't go to the dentist. They canceled all queries. The node if I touch it hurts, but if I don't touch it it doesn't bother me.

kensim9 profile image
kensim9

Could be blocked sub mandibular (posh for below the jaw it has a long) salivary duct which can get infected or blocked, check under tongue for 2 squirty ducts, one each side of tongue attachment (add drop of kemon juice to see if flow comes out).

If so more advice:

nhs.uk/conditions/salivary-...

Common things commonly occur.

Cheers

Priss69 profile image
Priss69 in reply to kensim9

It can be too. I feel like a small burning in the part of my tongue and throat. Today it seems that I have reduced the bulk. I keep praying that the lymphoma won't come back. I need to recover to return to the fight again. I feel like I have a wound in my throat but I don't know what it can be. I don't have a fever or sweat and my neck is not inflamed. Just that ball below my jaw.

studebaker profile image
studebaker

My heart goes to you Priss ❤️ As you said you did have more than enough at the young age and small son, but you are a fighter !

I would advise you to see your specialist as soon as possible. It could be blocked salivary gland and that is painful without inflammation and fever. Be insistent on to be seen and having investigation, diagnosis and treatment if necessary ASAP.

Sending you huge 🤗

Dana

Priss69 profile image
Priss69 in reply to studebaker

Thank you.

I think the inflammation is going down. I still notice the node but I notice it smaller. I feel a pain inside my throat as if I had a wound and at the end of my tongue. I had left stiff neck and numbness in the neck and ear. I have four days left of antibiotic and waiting to continue reducing. I have leukemia, two breast cancers and lymphoma. The lymphoma is the one that scares me the most. I have authentic panic.

studebaker profile image
studebaker

Keep on top of things 👍🏻

pkpayne profile image
pkpayne

Sending best wishes for you. I can't imagine the torment of not knowing is causing you. Please keep us posted. We are all pulling for you.

Teddo profile image
Teddo

Wishing you the best. I hope knowing that there are many of us from all over the world who wish we could lessen your fear may give you small comfort.

Smakwater profile image
Smakwater

Hi Priss,

Does your oncologist have a routine or standard of care measure for your treatment progress?

Swollen or tender nodes are a valid concern to request measure from your oncologist. I am not that studied on the topic of measure for treating aggressive Lymphoma, however, it is my understanding that it is done through biopsy or PET scan.

I hope it is a simple aggravation that soon subsides.

JM

Priss69 profile image
Priss69 in reply to Smakwater

Hi.

I have controls with my hematologist every three months. Now I have an analysis every month to see how my lymphocytes are. My family doctor has contact with my hematologist and before any problem communicates with hematology of the hospital. From the beginning my family doctor thinks it is a viral infection but it hurts a lot. The bulk continues, but it seems a little smaller. People who have treatment-resistant Lymphoma B have told me that lymphoma when it comes back, the node from one day to another can multiply by 1000 in size. I also have contact with my hematologist from Spain who was the one who took me before and he thinks it is a tooth infection. He told me that the lymphoma is going very fast and if it were a Ricthert ganglion, the ganglion growth would be very fast.

I continue with my antibiotic and the lump is still there. But I'm calmer because at least it hasn't stopped growing.

Smakwater profile image
Smakwater in reply to Priss69

Hopefully it is a passing infection.

Please keep in direct contact with your hematologist on any issues that are symptomatic of lymphoma.

JM

Priss69 profile image
Priss69 in reply to Smakwater

The lump continues and it didn't get bigger. It hurts less and seems a little smaller or at least it seems. On Wednesday the antibiotic ended. Today I found myself having white sores under the tongue. I think that in the throat I also have to have it because it is the same itching sensation. They are like small ulcers. I'm low on defenses and I don't know if it's because of that. I don't know all lymphomas act the same. My Ricthert detected it without masses by chance, so I don't know the symptoms. I understand that the masses grow very quickly from one day to another. In my case the lump stood still and the pain diminishes little by little, it is more bearable.

The family doctor told me to wait for a week of antibiotics and if I was not going to talk to my hematologist there would be what he thinks.

Smakwater profile image
Smakwater in reply to Priss69

I'm sure you will stay on it.

Get better fast!

Priss69 profile image
Priss69

Hello friends.

The ganglion is less noticeable today. It seems that the antibiotic is already taking effect. They are telling me people who have Ricthert, that a relapse from one day to another the ganglion doubles you. I pray that it will continue to decrease, but anyway my family doctor has prepared an ultrasound to rule out any internal injuries.

manzelka profile image
manzelka in reply to Priss69

Sending good wishes and positive thoughts, along with a big hug 🤗.

I don’t know you but everyone needs a hug.

Take care

Varney profile image
Varney

May want to have a panoramic X-ray taken ( includes the upper & lower jaw) to rule out any Dental abnormality. Sounds like a possible Dental infection, but am just guessing as I have no other information.

Varney

Priss69 profile image
Priss69 in reply to Varney

My family doctor has already requested an ultrasound of my neck to rule out any damage. So I stay calmer. Thank you.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Priss - One sign of Richter’s is a lymph node (ganglion?) that increases in size very rapidly. I’m glad that your lump seems to be getting smaller. I’m glad that your doctor is scheduling an ultrasound. As Varney said, it would be good to rule out a dental issue also. Keep us posted.

Priss69 profile image
Priss69 in reply to MsLockYourPosts

Yes. Today I am going to make an appointment with my dentist. The strange thing is that no tooth hurts, but the chemotherapy may have caused me to decay. But the pain I feel inside the throat and under the tongue. It may be the same pain in the lump that causes that pain in my throat and tongue.

When I was with Chronic Leukemia, it was very aggressive and in just three days I went from having no ganglia to having masses in my neck larger than an orange. My neck tripled in three days in size. The pain was horrible. Hematologists say they don't hurt but I can assure you it hurts a lot.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

One thing I have learned over the years is that the head is a non defined area of pain. You might feel pain in one specific area, but it could be caused by something in a totally different area. Your lump could be causing the pain you are feeling in your throat and tongue.

Priss69 profile image
Priss69 in reply to MsLockYourPosts

Since I had the catheter to put chemotherapy under my neck, I feel tremendous pain. The catheter was not removed and I feel pain as if of inflammation. It's like I have a mass around my neck when I touch it but I don't really have anything. It is a strange sensation. That's why my doctor is going to ask for an ultrasound of my neck. Sometimes it happens that the catheter has to be removed because it creates an infection. I was very late when I had the catheter, and I had a very large bruise. Since then it hurts. Thank you very much for helping me and counseling me. I feel lonely and scared since I was diagnosed with Ricthert.

Priss69 profile image
Priss69

I finish sending a message to my doctor to ask what we do if the lump of my neck does not go away. I don't know how a B lymphoma acts quickly. When they did the biopsy and they detected it, they found that I had an aggressiveness of 90%. My husband finishes touching my neck and finds that he is still the same size. If tomorrow continues like this, I will call my Hematologist what I think.

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