My wife is 48 years old and has been diagnosed with cll 5 years ago .
13q mutated 65k wbc and within range paletets and hemoglobin.
The nodes in her neck have gotten so big that she cannot go out without covering it with either a scarf or some inventive device to cover it.
Beside that , she is living a normal life , working ,exercising, not getting sick and lots of energy .
My question is : Is it worth stating treatment ( her doctor wants to start her on ibrutinib) and risk side effects that will disturb her way of life more than the esthetic side ?
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Sergi
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I totally understand this dilemma Sergi and had this conversation this week with my Consultant. Most specialists are receptive to treatment based on bulky, intrusive nodes which are aesthetically displeasing. However, I’m reluctant to start treatment based on lymphadenopathy even though my levels are much higher than your wife’s and I have a substantially swollen spleen. The difference is I’m not eligible for Ibrutinib first line in the U.K. except on a trial.
Your wife needs the very best CLL advice she can get and if she feels she can continue with the swollen nodes as long as other clinical indicators are good, it’s her choice to make. Just make sure the progress of the CLL is being accurately monitored because the condition is often more active when it’s in the nodes. She sounds in good shape generally and has excellent markers. Much depends on just how much the enlarged nodes are affecting her quality of life.
I will quote what my doctor said to me feb 2014” you are to young to be walking around with lumpy nodes. “ I too had no neck and at that time imbruvica was not around. I did FCR therapy. unfortunately I only got a 15 month remission. I am presently on imbruvica and let me say within 3 days my nodes shrank. No side effects as of yet. 2 1/2 years on it U are a good husband.
I think the availability of Ibrutinib as a first line treatment is a critical factor but you’re right in saying it’s often not without a cost in terms of side effects.
Best wishes to your wife and I share the distress of bulky neck nodes. This is a tough decision especially as she’s young and otherwise in good shape.
I am 63, 13q, mutated. I did 3 rounds of FCR this summer, which is great for our markers. I am in remission now! Felt great on W&W for 12 years.
If her nodes are not bothering her as far as pain, might be fine to wait. I got 2 second opinions when treatment was mentioned. Treatment was suggested due to WBC 225+, nodes got larger ( no pain) - I never hid them, anemia started to slowly spiral down and BMB showed a lot of crowding. CLL experts said FCR good for our markers if under 65. They suggested ibrutinib if I was opposed to chemo but they presented this to me...do you want to try 6 months or less and be done ( meaning hopefully long remission) or take a pill for rest of my life. For me, I chose the chemo. Got my port...had barely any side effects. Got tested after 3rd cycle and found out yesterday after repeated BMB that I was clear!
Good to get second opinion and use a CLL expert. After my second and third opinions, I went back to my local oncologist, who was spot on with her recommendations, and had treatment in my hometown.
I would lean towards CLL specialist’s recommendation who is not likely thinking of beauty, but health, when making the recommendation to start treatment. Not everyone has problematic side effects on Ibrutinib. Good luck!
Has the hematologist stated whether he feels that treatment is needed for health reasons or for appearances? If the nodes start to interfere with breathing or are pressing on nerves then the decision is clear. If for appearance only it would be worth getting a second opinion before dealing with treatment.
Is Ibrutinib available in France, and free. If so it might be worth getting an opinion there. Once your wife started Imbruvica, if she does, you might be able to have it delivered to someone there, then sent to the US. There is someone from the US who has his sent to Japan that way.
Hi, I'm 47 and diagnosed a year ago stage 3A (although had CLL/SLL years before knowing). My neck nodes were large (well they were to me but haematologist always says they're not) and i was always wearing scarves but a few months ago one side just suddenly went down - they go up and down depending if you're fighting something off (although my other swollen nodes never go down!). I would definitely get a second opinion before starting treatment. They've always told me that treatment is a last resort, so I would put it off for as long as I can!
I had the bulkiest neck actually I had no neck and was having headaches and sinus issues. the first doc did not wanna treat me. Said FCR would give me an infection and i would die. I gathered all my files and thanks to Chris on this board found a real specialist. In February 2014 I did 6 cycles of FCR and lived to tell the tale. presently on imbruvica since feb 2016. So far so good. Live a normal life PS. I was 48 when I was diagnosed.
Whilst a minority of CLL'ers will not need treatment the majority will at some time. When first line treatment was nearly always FCR (chemo-immunotherapy) which often results in toxic side effects there was a rationale to wait for as long as possible before beginning treatment. But now the new targeted therapies which are available, at least for some, (Ibrutinib etc.) not only are remarkably effective in rolling back the disease but often have little or no significant side effects, the rationale for delaying treatment is far less obvious. I started Ibrutinib in June as my CLL was becoming increasingly symptomatic (Lymph nodes, spleen, fatigue, falling blood counts) over the previous two years and within a matter of days was starting to feel considerably better. Had Ibrutinib been available to me a couple of years earlier, with hindsight, I would have preferred to have started treatment much earlier to have avoided the last two pretty crummy years. As others have said it is best to be advised by a CLL specialist and where possible seek a second opinion. I wish you both well.
Unfortunately, I have no specific medical advice for your wife, except to really watch very carefully for side-effects (especially Afib) if she does start Imbruvica. Imb. worked GREAT for me (CLL-wise) for about a year and a half, but then Afib led to mitral valve surgery.
Being a US citizen only, I'm strictly guessing, but will France give you any drug without a prescription from a French doctor? If not, I suggest you might want to vacation this year to Paris to get your second opinion, and Rx, if needed.
I am on watch and wait, and see it as an advantage not to start treatment. I am doing many holistic approaches to healing my body. Side effects are not worth it to me.
I understand and hope you stay that way for a long time but when you look like you just swallowed 6 golf balls , the holistic approach might not be enough
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