CLL Support Association
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CLL/Enlarged Lymph Nodes

I'm a 68 y.o. female diagnosed with CLL in 2007. So far no treatment needed however my iGg is low and I have to have 3 infusions spaced 28 days apart. Currently I have sinusitis and bronchitis - no fever but a stuffy, sneezey, runny nose and a horrible cough that I can't get rid of. I'm hoping the infusion works. I have had enlarged lymph nodes in my neck but now they are on both sides and seem bigger. I also have enlarged lymph nodes in both lungs as demonstrated by a chest CT scan. Add to that enlarged nodes behind my breastbone - mediastinum (sp?) and messentary which means internally around my stomach. I don't have fevers or night sweats. My biggest issue is shortness of breath. Does anybody else with CLL have this? Has anybody had treatment for this disease and does it shrink the nodes? I have talked with a reknown CLL doctor in NY at Corneil Weil Presbeterian Medical Center who says no patient with CLL should have to have chemo. I'm recently under the care of Dr. Javier Panilla at Moffitt Cancer Center in Tampa.

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I’m so sorry. I do not have any advice. Hubby sees Chavez at Moffitt who is probably under your doctor. I can see though how the reknown doctor you talked to said that. It’s because there are so many great drugs either available or available soon. I have been following the nonchemo drugs since my hubby is 17pdel and that other bad mutation.

Hoping you better soon!!

Linda (Lake Wales)

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Best wishes to your hubby! Does he have CD38 POSITIVE AND ZAP -70 POSITIVE? I have them but don't know about the 17p deletion though

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Hi! Been away for Thanksgiving and had to look up his labs. The CD38 is negative and looks like the ZAP-70 is negative. Which may explain why his doc did not mention them but did test for them. So, I guess you are opposites?? And it sounds like you do not have the 17p deletion or your doc would have said. Which is good.

This is a journey we did not choose but together we will make it.

Linda

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I have nodes around my heart which caused breathing and blood flow problems, but treatment shrunk then almost back to normal...

If you decide on Imbruvica (ibrutinib) firstline it works well in this aspect of node shrinking...

~chris

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That's good to know that I might not have to deal with the breathlessness in the future....best regards, Dianne

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I also had my largest 2 cm nodes around my heart which also possibly caused my breathlessness issues. Following 11 months of ibrutinib treatment my nodes and spleen quickly decreased to normal and I no longer have breathlessness. Ibrutinib is especially known for its ability to quickly shrink lymph nodes in most individuals.

You are under the care of great specialists. I hope that you have great success with whatever treatment you and your doctors choose.

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Thanks...good to hear and know that maybe someday I won't have the breathlessness that I have been experiencing. Hope you are doing good....best regards, Dianne

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Hi Ladydi49--I had a similar situation as yours with sinus and bronchial infections, the need for IVIG infusions, and enlarged lymph nodes in my neck. My nodes got so big that I needed treatment, and you can read my post here:

BR Treatment Started 4/3/17 for Lymphadenopathy: healthunlocked.com/cllsuppo...

(Link added - Admin)

My experience with the IVIG infusions was excellent--I had a sinus/bronchial infection that was lingering for 3 months, and it finally cleared up after my first infusion. I had no adverse reactions to the IVIG. I continued on monthly IVIG during my BR treatment (except for a 2 month break over the summer, when I was out of town), and I am starting back on monthly treatments tomorrow. My IGG numbers are around 300 and my doc wants them to stay at or above 500 (which I had achieved with previous infusions). Ironically, I am currently suffering from a sinus/bronchial infection that is going on 2 weeks, and I'm hoping that my Infusion tomorrow will help clear it up.

I am finished with my six monthly treatments of BR and my doc and I are both happy with my response to the treatment; my lymph nodes are reduced, my blood counts are good, and I have my normal energy levels back. I tolerated the BR well, fortunately. I don't understand why the CLL doc in NY is against chemotherapy for CLL patients as it is the medical communities' standard of care, depending on the specifics of an individual's case. If you are comfortable sharing the doctor's name, I would be interested in doing some research on him to understand his stance.

One last comment--the IVIG did not shrink my nodes; they continued to get bigger--the BR treatment started shrinking my nodes within days of my first treatment. Best wishes to you.

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Thanks for your reply. I had my first ivig infusion 3 days ago and so far no side effects and, for the first time in 7 weeks my nose didn't plug up last night! Best regards, Dianne

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His name is Dr Richard Furman (just between us on here). If you go to the home page you might be able to see what he wrote about non-chemo treatment for cll

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What does BY stand for?

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BR? Bendamustine / rituxan.

Dr. Furman's opinion about avoiding chemo is no secret. There was a post about it here recently. Other specialists have varying opinions about when to use chemo and when to avoid it, based in part on a patient's markers (patients with certain markers are not likely to get a great response with chemo) and in part on their experiences with the options.

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It might be worth trying Zantac once a day, preferably well before a meal. Apparently it's not uncommon for unnoticed but constant reflux to cause irritation in the esophagus which creates the watery phlegm and constant cough. I coughed for about 4 months before I found the solution on this forum. It worked! About a week after I began taking the ranitidine my cough finally left.

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Thanks for the info...I'll def give it a try! Best regards, Dianne

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I tolerated R+B well, or so I thought. I now have parathesia on both legs that make my legs feel like I have severe burns. I now have to take Gabapentine (1,400mg) daily for the rest of my life. It also destroyed my immune system so I practically live on antibiotics. Not sure I want to have R+B treatment again.

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