Partial treatment to shrink nodes

[Sergi]

Hi

My wife has been diagnosed with Cll 3 years ago and still too scared to research it so that’s my job .She’s 47 and quite beautiful but the lymph nodes in her neck are really big and destroying her look and our life in the process .she doesn’t clinically needs treatment for now and is petrified with the chemo option.

Has anybody done oral or partial treatment to shrink the nodes ?

Thanks

[caven]

Based on the configuration of the chromosomes identified by the CLL specialist's tests it may well be that the particular form of CLL your wife is experiencing absolutely should not have chemo. It's been found that some people with CLL are just not well served by chemotherapy and that what you're calling the 'pill' therapy is the preferred option. Why not make an appointment to discuss all this, including your wife's fears, with your CLL SPECIALIST?

Keep in mind that many general medical practitioners ~ because of the nature of their broad responsibility ~ just don't have enough knowledge to determine with what, when and how your wife should be treated. Only a specialist is in the position to make those determinations.

Caven

[Sergi]

Thank you for your reply

My wife has three specialist following her and all pushing for fcr.

Ma question is she’s looking for a way to bring down the swelling in her neck without having to go through a 6 month chemo treatment

[AussieNeil Administrator in reply to Sergi]

CLL specialists don't start treatment until absolutely necessary, because it further weakens the immune system (for up to a year after treatment ends with FCR). It can also accelerate the development of tougher clones to treat in the future. Bulky neck nodes are distressing, particularly for women and scarves can only do so much, but do discuss the ramifications of starting treatment before clinically required...

Neil

[Sergi in reply to AussieNeil]

Thank you

[virdieblue in reply to Sergi]

I had a football neck for years before starting Ibrutinib so I understand the embarrassment. Oddly, most people didn't even notice.

I don't think treatment for it will be advised. Has she had a FISH test yet? It may be that her genetics will determine the course of action.

Virginia

[Sergi in reply to virdieblue]

Thanks Virginia

FISH is good prognosis 13q mutated wbc is high 45k but depression is the main problem

[Farrpottery in reply to Sergi]

Ask them about her specific genetic markers. Ask them about Ibrutinib .

Sincerely,

Farrpottery

You need a CLL specialist/Hematologist

Oncologist

[Dell49]

Hi Sergi

I completely understand the neck lymph node thing as I to seem to have one side of my neck that is always affected. I am due to be treated with Ibrutanib in the next few months, however as a stop gap for some issues with low platelets I was given IV steroids to get me a bit more balanced and I have had a marked reduction in lymph node size. So maybe something to suggest if treatment is still a way off. Best wishes to yourself and your wife .

[Sergi in reply to Dell49]

Ok thanks

I’ll talked to her doctor about it

Thanks for your concern

[Jms19]

Taking Imbruvica since August 2017 and it took away my lymph nodes quickly. It's an amazing treatment. Had some side effects, but all have gone away. Definitely a good way to go instead of the traditional chemo treatments.

[Sb1962]

You could research EGCG, green tea extract. There was a Mayo study done in a small group of people who took it, and many saw a decrease in lymph node size. I take 1.5 g/day, and can no longer feel an enlarged node that was in my groin. Do careful, thoughtful research on anything you take to make sure it's the right thing for you (or your wife).

[RJR1]

After looking like my neck and cheeks were stuffed with golf balls my nodes shrunk to normal size within a few weeks of starting Imbruvica.

So, if your wife looks forward... when and if Imbruvica is prescribed chances are the nodes will shrink

Imbruvica is brutally expensive...likely won't be prescribed until any number of blood and other CLL issues dictate

[Sergi in reply to RJR1]

Thanks

Her hematologist in France agreed to prescribe Ibrutinib and it is free of charge because french healthcare covers 100% of chronic diseases treatment

Do you need a big follow up to deal with side effects ?

We live in the US and have no insurance here

Thanks

[RJR1 in reply to Sergi]

Side effects vary person to person. Diarrhea is quite common but can be treated with Imodium. Some experience aches and pains. I think for info on dealing with the common side effects this forum will be helpful.

Of course regular followup blood work is very important. Most of us on Imbruvica are checked monthly and after a period of time every two or three months.

With your French insurance you'll certainly want to explore your options with that

[Hidden]

Hi Sergi, The preferred frontline treatment seems to vary according to country. Would you mind sharing what country you're in? It seems odd to me that all three specialists are pushing FCR. I feel very much for you and your wife, and wish you a good outcome.

Lachlan, San Francisco

[Sergi in reply to Hidden]

Hi Lachlan

We live in the US but only have insurance in France and Hungary.

Actually they said the best chance for total remission is FCR but have also proposed bendamustine+rituximab+venetoclax

Ibrutinib as a first treatment

Bendamustine alone and venetoclax alone as a first treatment , the latter not available yet

[MsLockYourPosts Passed Volunteer in reply to Sergi]

Are the specialists in the US or France and Hungary? Getting any of those treatments here without insurance would be very expensive. Is the B+R+V a trial or off label use?

If you are close to Washington DC treatment there is free for anyone in one of their trials. Travel and housing while there would not be. Worth looking into.

If you give more personal information, like location, you might want to lock your post. Click on the v at the bottom of the original post, then edit and scroll to the bottom and change the setting from everyone to community only.

[Sergi in reply to MsLockYourPosts]

Morning

Her doctors are in France and we live in Long Island ,NY

B+R+V in part of the protocol treatments offered in France , not a trial .

Thanks for the privacy advice

[Jeaneeb]

It has been 5 months since anyone responded to this question. It's one that's important to me, too, as I have swollen nodes in my neck and they bother me cosmetically a lot. I don't have other syptoms thought. What has happened to your wife, Sergi? Has she had treatment since you first wrote? Is her neck still swollen?

Jeane in California

[Sergi in reply to Jeaneeb]

Hi Jeaneeb

Thank you for your concern

The swelling has become so bad that we made some fabric sock tapped to her neck in order for her to be in public.

Since my wife has other health issues ( melanoma, bladder tumor ), she’s doesn’t want to do Chemo and her doctor agreed to start her on Ibrutinib by fall.

Since her numbers are still pretty good , I am going to ask him to put her on a low daily dose (140mg) and see what happens

[Lola69 in reply to Sergi]

The usual dose is 3 capsules per day for maximum results. It’s a miracle pill my nodes shrank within 48 hrs and I have no diarrhea no side effects at all for now. Almost 3 years on it.

[Jeaneeb]

I'll be interested to hear how she does. I went to a LLS event a few weeks ago and asked the doctor who presented the talk on CLL about my swollen neck lymph nodes. He said that for some of his patients, he applies low does radiation to the neck.. I've never heard of that as a treatment! Jeane

[Sergi]

I live in new york but my wife has insurance in France where they are against radiation especially in the neck area which has has many major organs

Oncologist in Sloan Kettering seems to also be against it

[Lola69 in reply to Sergi]

Radiation to neck affects thyroid and teeth! my doc was against it too!

[Lola69]

I am wondering if she has SLL the version of CLL .. SLL is more on nodes. What is her WBC?