Week 4 in Imbruvica. All other lymph nodes have shrunk, but anyone have any suggestions (other than definitely not over eating - no room down there) about how to ease this enlarged spleen area? Blood count now up to 129k, after 4 weeks on this med. He said to expect it to keep rising and changes maybe 3-4 months. Doc just gave me meds to stop me from getting GOUT! Good grief. "The Kings Disease", and I haven't had a glass of wine in over a year. lol Oh well, will hope all gets better and soon. Good luck out there to all CLL patients. I love this sight. Doctor agrees talking with others and hearing their experiences is a good idea. My anxiety level is so much better hearing about others and hearing their good remarks. Thank you to all who have helped me start to get through this.
PAIN IN LEFT SIDE - SPLEEN?: Week 4 in Imbruvica... - CLL Support
PAIN IN LEFT SIDE - SPLEEN?
Lets hope Gout is the least of your problems duffymcgrif! Fingers crossed improvement continues and blood count eventually returns to normal! Hang on in there
UK Marc
I know, but I hear that pain is horrible. By white cell count is now up to 197k, BUT I noticed it only went up 7k from last week and it had been climbing 30k per week. So hope I'm nearing the "peak". Thanks for words of encouragement.
Hi Duffy, is it possible you've been given Allopurinol to prevent tumour lysis syndrome as opposed to gout? It's commonly given during FCR and sometimes with Imbruvica I understand. Unless you have a tendency to a build up of uric acid and gout of course. Gout is a very bad and underestimated form of arthritis and can cause excruciating pain as I've evidenced with my husband.
In terms of the spleen discomfort...I can sympathise but not really advise but hopefully the treatment will shrink your spleen in time. Smaller meals and massaging the area is how I'm dealing with spleen discomfort but I'm untreated and mine will presumably just increase in size until I am treated.
Hope things continue to go well and glad the sharing is helping to keep the anxiety down.
Best wishes,
Newdawn
I recently had my first chemo treatments (Bendamustine) due to a spike in my WBC which went to over 400. I was given Allopurinol to prevent tumour lysis . As i understand it, when the chemo starts destroying the CLL cells, they emit ureac acid which at the high level I was at could cause tumour lysis leading to kidney failure. It is a preventative measure; not an indication that you have gout.
Yes that's my understanding too Mike especially with FCR but I wasn't so sure how common TLS is with the use of imbruvica. Strangely enough, along with a host of possible side effects with imbruvica (most uncommon however), I notice gout mentioned.
Hope your chemo treatment is progressing well.
Regards,
Newdawn
Already noticed pain practically gone. Did find out not to over eat, because there just isn't enough room down there. All other lymph nodes have shrunk and I think (hopefully) that I may be reaching my "turn around". I'm at 197k in white cells right now, so keep your fingers crossed for me. Thanks for advice.
Allopurinol is used to treat gout, however...
As your nodes and spleen are cleared the B cells go into the blood and die releasing their contents into the blood. This causes a number of chemical problems the major concern is a build up of Uric acid... which is called tumour lysis syndrome or TLS.
It is a silent killer, I have lost a couple of friends to it...
The Allopurinol is used to reduce uric acid levels, as the mass of B cells die, and it is a cautious and prudent prophylactic approach to treament, in patients with high absolute lymphocyte count [ALC] count.
I started idelalisib and rituxan before Christmas with a white blood cell count [WBC] above 400K, and just a few days ago, was told I can now stop taking the allopurinol, as cell death isn't a concern...
Allopurinol does have side effects and should you develop a rash, seek medical attention immediately, but most patients have no problem with it...
~chris
One down and out. Good news Chris.
Hi. Thanks for reply. Does it help to drink lots of water to rid body of this uric acid?
Hi, I have been on Imbruvica for 1 year and 3 months now. Lymph nodes all went down but my spleen is still enlarged. How come no wine in a year?
Do they know why your spleen is still enlarged? Hubby has mantle cell. He has been on imbruvica for 2 1/2 months. He is in the hosp with blood infection and dr wants to stop imbruvica doesn't think it is working because spleen is still large and causing pain
Usually they can tell by examining and palpating the area Grace. However, the spleen isn't always detectable by physical examination until it's very enlarged and it requires skilled examination.
My enlarged spleen was detected on an ultrasound scan.
I'm really sorry to hear your husband has an infection and is in the hospital. Wishing him a good recovery and best wishes going forward. It must be a worrying time for you.
Newdawn
My enlarged spleen was also denoted from a cat scan, which was only taken once, two years ago. But I knew something was wrong, but evidently not a big concern per Doc. I figured since it was larger than all the other lymph nodes it would probably be the last to go down. I found over eating caused lots of pain and discomfort. Didn't take me long to eat lightly. Good luck
I bet it has to do with Uric Acid, which can cause gout. When Doc put me on Allopurinol to prevent gout, I told him jokingly that gout is known as the "kings disease and I can't have my daily wine?" So there it is. Also, strict diet to cut acid down, which I guess is caused by dead B cells. So, so much to remember. Good luck.
My spleen did shrink some when I went on the Imbruvica but it is still enlarged. Not painful but I can feel it when I eat.
Eat lightly Kevin. I found out this the hard way. Over ate on Easter and I was in awful pain. Evidently it is the last of the lymph nodes to shrink, due to it's size. I hardly notice mine so I'm hoping it's the last to shrink now. Good Luck
I am on V-I. My WBC went from 170 to 3.5 and is possibly still falling. My nodes shrunk and my spleen a little (It was not that large) prior to starting V. I still have light pain in my left upper abdomen. The docs don't seem concerned at this point.
What is V-1? My white cell count is up to 197k . I am so hoping it will start to drop soon. Concerned with high Uric Acid now. Eat lightly, as a full stomach definitely makes it painful. And your right. Doctor's don't seem concerned.
I am also On I+V and doing well so far. WBC down from about 90K to 4K in 4.5 months.
I have found some strange pains as the node shrunk ( I think it is from that).
Last year I found when nodes grew they hurt but then after a few days it went away so possibily an increase or descrease in size causes slight pain. This is just my therory...
Hoffy
Holly, what treatment is 1+V?
I + V is Ibrutinib and Venetoclax combination.
Not sure if this was answered yet for you - sorry for the delay
Hope you are doing better.
excuse the spelling errors. I hit reply before correcting them...
I have just experience pain in my left side. I too have an enlarged spleen. The pain is under my left breast bone and also in my left shoulder. Someone else on this site told me it would go away in a few days, and it did! Of course, he said he returns without notice!
I am still W & W.
No one mentioned gout to me.
Good luck.
After several weeks of off and on pain, it seems to have disappeared. I found that if I over ate, the pressure was really uncomfortable. Eat lightly I would suggest. After three weeks on Imbruvica, Doc put me on the "anti gout" med, Allopurinol. But, my tests from last week still show extremely high Uric acid. I've had responses on here from other patients and they said their Doc increased their dosage from 100 to 300 mgs. Also, special diet: no meat, no fish, stay away from certain fruits, etc, etc. OMG - Is there light at the end of this tunnel?
What is W & W ? I found if you eat lightly, your full stomach doesn't cramp the spleen. Found out the hard way.
W & W is wait and watch stage. No meds yet.
I agree with watching how much I eat.
Thanks.
I find glutin from has helped my bloating and full feeling.
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