Quick update since my last post about spleen pain. I went for an ultrasound and my spleen size and weight has basically doubled. They've taken more bloods for profiling and prognosis, also getting a CT scan done on the 22nd.
It's looking more likely I'll be getting treatment pretty soon, probably FCR.
Can anyone tell me their experiences of this regime? Have to say, I'm not looking forward to it.
Daveyo, if you will search on this site: FCR Treatment---using the magnifying glass in the upper right corner of screen (if on computer) you can read several people's experiences with FCR while you await replies.
Do you know what is causing the doubling in size? Has your consultant gone through this with you or is that still unknown?
Consultant says it's because of spleen trying to process damaged cells, and struggling to cope as my WBC is starting to creep up. I think profiling results will tell more.
Well the spleen's job is to clean up the blood (though do google a Harvard Medical School video on 'what does the spleen do?' - hilarious!). However, it seems odd that it is growing so quickly given the WBCs 'are creeping up' (though I think yours are more than doing creeping up - even so it is a very rapid spleen growth).
So you need to ask what is going on so you can be absolutely clear.
I just got my CT scan results and was shocked to find my spleen is triple of its normal size. I haven't spoken to any of my doctors yet. So I'm curious and will following your post.
GP described my spleen: "3-finger palpable" - which I guess means one of it's dimensions is the same width as 3 fingers.. I don't know what actual size this might be.
Sharp pains around lower left rib cage are making sleep tricky, so I'm hoping things improve..
Consult is in 2 weeks, then to see what haematology expert says.
Like you I'd prefer to delay treatment, but failing that.. First to learn what my genetic/mutated/unmutated profile is - they should test this before treatment decisions - then back here to ask advice.
I've no knowledge to offer you about treatments. Good luck.
Thanks Shedman, I started with sharp pains, almost like a stitch for a couple of seconds at a time. It's now became a constant dull ache. My profiling and ct scan will determine what treatment I'll respond best to.
I hope things go well for you 👍
Thanks.. My ribs are still very tender - lying down (on my non-snoring, non-reflux, left side) is not eased, but might be easing. Dull pain would be better, but will have to see what the consultant says.. I'll ask in separate message where white cells go to die - aside from recent heavy cold, my mind is open to positive possibilities to explain the sudden issue.
Good luck.
My husband 18months post-FCR and is doing great he had a couple of hic-ups nothing major and tolerated the chemo very well.
jenny
I was also diagnosed this summer with an enlarged spleen - 22cm. It was only noticed by my GP when I had a kidney infection earlier this year. I was diagnosed with CLL in 2010. Since then my results are pretty stable. WBC between 25 - 35, red blood normal, haemoglobin normal and platelets around 90. The consultant said he has never seen a spleen this big with the blood results I have. This makes me think maybe there is another reason. I am getting a second opinion at Royal Marsden next week as I am not happy starting treatment for CLL if that is not the cause. Might be worth you also asking for a second opinion?
I’ll let you know how I get on, as it might be helpful for you too.
Mandy
Thanks Mandy, I was also diagnosed, around Christmas 2010. Up until 3and a half years ago, everything was fine and I was wondering what all the fuss was about. Then my WBC started to climb as my platelets went thru the floor. I was given a platelet infusion which was not very successful at all. After that, I was given a six week course of Rituximab, it worked that well I was told I was in remission and doctors said they were surprised as to how well it worked. I thought I'd kicked its butt!!!!
About 6 months ago my counts slowly started to climb again, my fatigue was worse than ever. Then about a month ago I was getting sharp pains just under my left rib, an ultrasound confirmed the enlarged spleen, so on the 22nd I go for a ct scan. The pain in my side now has become a constant dull ache, quite hard to describe. I'll know what kind of treatment I'll get after the scan and bloods profiling come back.
I hope it goes well for you next week, keep fighting it!!!!!! Thanks, David
So sorry to hear you’re having such a tough time David, especially when it looked so promising after the Rituximab. You’ be kicked it’s butt before and you’ll do it again.
22cm.. Gosh.
Did you get early swollen lymph nodes, a.k.a. SLL diagnosis? I'll follow what you post about the 2nd opinions with interest (and fingers crossed for options to delay CLL treatment - whilst I hope for the same.)
Good luck.
No swollen lymph nodes, CT scan just showed a couple of small ones around the chest. No night sweats - no symptoms at all really, which makes me think the swollen spleen is down to something other than CLL. I have no pain and minimal discomfort from the spleen, just can’t eat as much. All very odd.
I was dx'd in 2000. I did green tea and curcumin which appeared to keep my wbc down from 52k to 10k. No one knows for sure. When I ran out of the good green tea and could not get it anymore my numbers grew slowly, and eventually my WBC got to 250k (2012). No swollen lymph nodes at all but my spleen had grown to the point I looked like I was in my 2nd trimester (not a pretty picture). No pain at all ... just fear that it would burst. At this point I was accepted into the ibrutinib trial at NIH. Two days later I could barely feel my spleen. i have had no issues since. I am unmutated, 13q- and thankful for my years at NIH. Best of luck with all your decisions!
That’s really interesting to hear Franc. I, too, have been doing alternate weeks green tea and curcumin. Wonderful that ibrutinib was so successful for you. Did you take it for six months and what were the side effects?
The small study found synergy on alternate days of EGCG and curcumin in a 10 to one ratio...
Not sure which regimen you are referring to. If you are referring to green tea/curcumin, I took them for several years with no side effects. I no longer do green tea, but still do curcumin. As for ibrutinib I just passed my 4-year mark and had some side effects the first months and they eventually dissipated and I'll be on them for as long as they let me. No end in site, from what I understand.
My spleen had compressed my stomach so that I could not eat a full meal. Within 4-5 days of the first FCR my appetite was back to normal and so was my spleen. Hoping similar results for you.
Woodfin
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