Radiation treatment for lymph node in neck

[eoravillo]

I am W & W CLL of 5 years. About 5 months ago, swollen lymph node on neck appeared about size of golf ball. This was after having bronchitis returning from trip in Asia. Afterwards, allergy season kicked in high gear for several months and just finished up a cold. A little too much for my immune system. Doctor is recommending radiation treatment to shrink it. I feel no pain from lymph node, no other CLL symptoms except people asking what's wrong with my neck. Wondering whether anyone out there have had radiation treatment for this issue. This wouldn't help me with CLL but just this one local lymph node. Getting a second opinion.

[AussieNeil Administrator]

Welcome to our community Eoravillo.

While radiation treatment is unusual, it should reduce the size of your lymph node: lls.org/leukemia/chronic-ly...

I don't know if your doctor will be able to give you much of an idea of how long before it again enlarges, though.

Of relevance to this treatment is that Professor Terry Hamblin, who discovered the importance of the IgHV mutation status in CLL, recommended radiation treatment of early stage SLL swollen nodes as a potential cure - provided there were only a few involved.

Neil

[eoravillo in reply to AussieNeil]

Thank you Neil. I know there are some risks involved with radiation treatment so need to weigh them also. I am interested in what Terry Hamblin has to say about this.

[AussieNeil Administrator in reply to eoravillo]

healthunlocked.com/cllsuppo...

[Hoffy]

Not sure what the side effects of radiation . Imbruvica shrunk my large lymph nodes in one week . But you have to stay on for a while I think .

Not sure what the side effects of radiation are .

Has anyone ever heard of using high intensity focused ultra sound? HIFU Seems like it would be a clean way. It is currently being used for prostate cancer .

[eoravillo]

Thanks Hoffy. What type of drug is imbruvia, tablet or infusion? I think doctor not ready to treat my CLL yet but just this bothersome lymph node which some of us have indicated could be related to our sleep apnea and sinus issues(??).

[starsafta]

Personally, radiation, with all its potential harmful effects, would be my last choice of treatment. Is your doctor a CLL specialist, with knowledge of treating CLL? I'd find a specialist for a second opinion before exposing your body to radiation.

[eoravillo]

Thank Starsafta, my exact sentiments. My second opinion doctor is Steven Coutre who is a CLL expert whom I see July 31. But wanted to find out whether anyone had heard or done this recommendation.

[cook4650]

You should find many, many posts regarding the drug ibrutinib (trade name Imbruvica) here on this web site. I had some huge nodes under my arms that seemed to pop up overnight. I am 17p deleted sot not a candidate for traditional chemo. Went on Imbruvica and they disappeared in less than a week. And yes, I am now on that treatment indefinitely. They are capsules you take every day. Some folks have side effects, mine were entirely minimal.

[eoravillo]

Thanks Cook for info. You define your self as 17P deleted. I am assuming it describes the type of CLL you have. Many people seem to ID themselves with cell# and alphas. I hope to get this info from my visit with Coutre and to find meaning in it.

[Cllcanada Top Poster CURE Hero]

Radiotherapy saved my life... 😃👍🏼

[starsafta in reply to Cllcanada]

Yes, radiation can be effective for treatment of many types of cancer, and I'm glad it worked for you, Chris. I know you have had issues other than CLL. Yet, I would hope that the scenario described above might first be assessed and treated, if necessary, with less nvasive means as a start.

My doctors originally wanted to excise my largest neck node for a biopsy. With it situated between the carotid and jugular, I informed them that they weren't getting near that area with a knife, thank you very much. Having studied neuroanatomy, I'm too aware of how all the nerves and blood pass through the narrow tight spaces in our neck, and I want to preserve the flow.

[Sergi]

Concerning radiotherapy for lymph nodes, it seems that it’s being used in the US and Canada . My wife’s hematologist in France is against it especially in the neck area , too risky

[Bell53]

Hi eoravilo. I just read your post related to radiation for a lymph node. I have a similar situation. My doctor is having my case reviewed by the tumour board at princess Margaret hospital here in Toronto. I don’t really need CLL treatment yet but have a large mass of nodes in my abdomen. I was wondering if you had any up date on your situation. Thank you and best wishes to you on this journey

Heather

[eoravillo in reply to Bell53]

Hi Bell53,

I started Ibrutinid and going on second month. Except for some minor side effects, doing well. My lymph nodes were in my neck area and and some swelling in the stomach area. My nodes reduced right away in a few weeks, noticeably could see my neck again. Was so pleased. My friends all thought I had a neck and facelift. I was reluctant to go with radiation because of its harmful effects and also it wouldn’t treat me systemically and not sure whether it would destroy my lymph nodes which we still need to monitor infections.

I would go for a second opinion with a CLL specialist who is up on the latest in our disease. Let us know how you proceed with your journey.

Best,

Eoravillo

[Bell53]

Apologies for the late response Thank you and good luck with your treatment

Heather