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
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Sergi
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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.
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...
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 .
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.
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).
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
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.
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.
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?
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
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.
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
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