My first post here .... can hardly believe I'm doing this.
Firstly, a big thank you to the creators and members of this group who share. I'm sure your help is life-changing for many people.
I'm a 68 year old guy who was diagnosed with cll in 2014. My wbc's have been fairly stable since diagnosis in the high 20's to low 30's, and there was some splenomegaly then. I haven't had any major symptoms until a year ago, with increased splenomegaly (now about 9 inches), and a hard mass on my spleen about 3 inches in size. I've had ct scan, ultrasound, colonoscopy, and there's no sign of a tumor.
I'm perplexed that after so many tests and doctors, I still don't have an answer about what the hard mass is, or if there's anything that can be done for it. I'll be seeing a new oncologist next week and hopefully it will lead to a clear answer. To say I'm scared is to put it mildly.
If anyone in the group has had any experience with, or information that might help me, I would appreciate it immensly.
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Gooseman
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I had an enlarged spleen which was very uncomfortable in certain positions but I could always feel it there. If I sat on the floor and stretched my legs out in front and leaned forward, my spleen would come in contact with other organs or nodes and that hurt.
Hopefully not being able to see a tumor is good news on those scans but I am not medically trained and have no specific knowledge other than what I shared above.
Please keep us posted as you learn more. I am hoping the best for you.
Thank you for sharing. For me, I'm thankful it isn't painful. Even as I stretch out on the floor and lean forward to touch my toes, I don't feel any pain. I'll post my progress as I learn what's going on.
Thank you so much. I'll let you know as things develope. For right now, I know I'm in the wait and worry stage, And I gotta stop looking up blood marker information or other worrisome info.
My life has taught me the value of love, of kindness, and trust in God's help.
Last scan before treatment for me. My spleen was 15.5cm. At treatment it was probobly alittle larger. I am a large man at 6' 5" so you would think that size spleen would not be an issue. Truth is, my spleen was absolutely throwing a fit. All I could eat was a half a sandwhich. Drinking 12oz of fluid was tuff to do. Could not lay on left side. Could not do vigorous activity. Always a full feeling on left side and pain radiating that whole area. It was getting quite spooky. When my spleen started going south, it went fairly quickly. Meaning month by month really going down hill with symptoms after a year of ignoring.
I had low blood numbers, but feeling unwell for quite a while, with fatigue etc.
I am two months into O & V treatment. Although my spleen is no longer palpable. I can eat normally now. Less pain than pretreatment, but still pain. Still very sensitive to activity, but less than pre.
So sensitive that when I over do it. Pain killers get thrown at the problem. Can't take Ibuprofen or aspirin with O & V. That leaves tylenol or a prescription pain reliever.
So, if I hear of someone with spleen symptoms my ears perk up.
Good to not let the spleen get too bad. As then it can take a lot longer for it to get better, if your like me. My Doc says some people do take longer.
Thank you for the advice. I'll try not to let the spleen get too bad. It's really a lot up to the doctors. As far as eating, that's no problem. It hasn't changed much for me, and I'm a real foodie. All the best to you. G.
Hi Gooseman, Do you happen to know what your CLL markers are? My guess is that you may 13q mutated, since you've enjoyed 9 yrs w/o treatment. You probably already know this, but just in case, 13q mutated is considered the most favorable marker.
According to the iwCLL Guidelines, an enlarged spleen may be an indication that it's time to treat. [Edit: I accidentally added incorrect spleen size earlier. From the link, "Massive (ie, ≥6 cm below the left costal margin) or progressive or symptomatic splenomegaly."ashpublications.org/blood/a...
I ask about markers because they play an important part in deciding what treatment approach will be most effective. Many of us here on HU can attest that enlarged nodes, spleens etc. melt back to normal with treatment.
Hi N, Thank you for all the information. I had recent blood tests and will get the detailed results next week. I'd be very happy to see my spleen back to normal if that's possible. From what I gather, it looks like drug thereapy would go on indefinitely.
1) Spleen swelling can lead to infarcts (dead tissue in spleen) and lacerations (tears in spleen tissue). They can be painful, and I would guess that they can scar up as well - this would be consistent with my experience which I posted about here:
2) This does not mean you have the same issues with your spleen. As you said, it's not painful much yet. There are folks here who know more about spleen issues than me, and they may have comments on hard masses in that area.
3) Don't assume that drug treatment is indefinite. One of the main options is a maintenance regimen (the "-ibs" acalabrutinib et al.), but there are other options that are fixed duration or combination. I went to a combination trial that does expect to reach an end date, though it will be a year or more before it does.
The good news is you are not in treatment yet, and most spleen issues are treatable if caught early. Be careful with it in the meantime - spleen ruptures are bad. But there are interim treatments that can address spleen swelling before looking at CLL treatment.
Good luck next week. Glad to see the new oncologist has experience with CLL; this has been shown to improve health outcomes significantly. You'll feel better with expert help.
Thank you for the information and support. I'll be careful with activities, as I've read a rupture is vey serious.
Today I see the value of asking for help here on HU. For so many years I thought and was told I'd see a jump in my WBCs when things got worse, but that's not my case.
And yes, seeing an expert next week will help a lot.
I take it you are under the care of a CLL specialist? And not a general oncologist....important you have CLL specialist, as you are rare!
Growth in spleen can be caused by AIHA (autoimmune haemolytic anaemia), which can be triggered by CLL (even when CLL not needing treatment). Essentially the CLL tricks the spleen into thinking red cells are the enemy, so it starts destroying them. This makes the spleen swell, as the 'dead red bits' get stuck/can't be cleared quickly enough. In my case, even though it got massive before removal, I felt nothing - so I have no idea if there were hard bits. However, it is not beyond imagination to think you have a blockage in cleaning out red bits from your spleen
Have you asked you specialist about AIHA? there are various treatments (or in the extreme removal worked in my case)
Hi Quarry, I will be seeing a new CLL specialist this coming week. From what you've said, I think it's quite plausible this is what's happening in me. I'll read about it, and I'll definitely ask him about it in a few days.
Signs of AIHA are high LDH and Billi (products of red destruction - though this just tells you that you are haemolysing - Grey pallor to face, yellow urine, yellow eye-white also signs ), possibly reducing HB and high reticulocytes (baby reds, showing you are trying to compensate for the destruction - not part of a standard blood test). Many AIHA risk indicators include positive DAT (needs specific testing), older, male and others. There is no single test saying yes.no, hence a CLL specialist needed. Good luck!
Its incredible that your WBC has stayed so low over a course of nine years. I'm five years in W&W and I went from 16,000 on diagnosis in March 2018 to around 80,000 on my last six month visit in March. I assume your RBC and Platelets have likewise stayed in good number range.
As far as the Spleen I had no issues until my last six month visit in March in Boston. Upon feeling my abdomen she said for the first time that the Spleen was Palpable. That means they can feel it in the abdomen, which they shouldn't be able to do. The spleen has a normal size in an adult of around 12 inches (actually in normal adults it gets smaller at the older ages). At its normal size it hides behind the rib cage, so when they press your abdomen they can't feel it. So my specialist ordered an MRI of the Abdomen, and the spleen is now 20.5 cm.
I learned that when it gets over 20 cm and into the abdomen, it is in danger of rupturing; of course, that could mean quick death. Your spleen right now, if the 9 inches was correct, is almost 23 cm. True I'd be concerned about a mass growing on it, but I'd be equally concerned about the size of your spleen. If I were you I'd be asking a specialist about the size your spleen has reached.
I'm assuming the CT Scans and other tests would have shown if there were cancer cells, but an oncologist is of course the best resource. If the tests you've had so far have ruled out cancer, then maybe it is simply a fatty tumor. Aside from an Oncologist, have you seen a Gastroenterologist. Gastro's would handle spleen issues also; although, when mine did the MRI and saw the size and the proliferation of lymph nodes in the Mesentary, he simply referred me back to the Oncologist. If I didn't have CLL I'm sure he would have looked further into my issues with the enlarged spleen, but knowing my diagnosis he felt the Oncologist should deal with it. Your mass is a different issue, because CLL does result in large spleens (such as yours is) but not normally masses on the spleen.
Good luck next week, but don't overlook the size of your spleen.
Thank you the posts Carl. I've been fortunate that my wbc's have always stayed relatively low .... even down at 21.6 two years ago. still under 30 now. Rbc's always normal and platelets somewhat low, but not in a danger area.
I think it was about 4 years ago my oncologist said he could palpate my spleen below the left coastal margin (ribcage), and 2 years ago he noted that it was about 4 cm below. So I know it's been growing. But in the last year it's taken a big jump to about 23 cm. in size. I know it's important I address the size of it, and the oncologist I'm seeing next week specializes in CLL, so I trust he'll be helping me however he sees fit. Last year was a very trying one because my oncologist retired and it was hard to get the help I needed. Thankfully, I think I'm on the right track now, and I'll do my best to make wise decisions.
Good luck with everything you're dealing with. And thank you again. G.
I don't know where you are in Canada, but last year on my 75th birthday I made a trip to Montreal and Old Quebec. I purposely planned it then because I had a six month visit with my CLL Specialist in Boston. For a couple of years I had wanted to do this trip, because I had never seen Montreal and I noticed that it wasnt a long trip North of Boston by car. I ended up loving Old Quebec much more than Montreal by the way, and stayed in one of the most beautiful and fabulous hotels I've been in. It was the Fairmont in Old Quebec.
Anyway my point is that I go to Dana Farber in Boston, and my Specialist is the Director of CLL for that famous Cancer Center. I queried her on the size of the Spleen, because my local CLL Specialist (I live in South Florida) was quite concerned about the size of the Spleen at 20.5 CM. The local Specialist mentioned possibly starting treatment due to the Spleen. My Dana Farber Specialist, who I'll see again in September, said she has had many patients with spleens over 20 cm. She said we'll wait until my next evaluation in September. I know from this site's contributors, and my own research, that removing the spleen was the old idea; now, for CLL patients it is wiser to start treatment even if the other factors don't suggest it. So I'm assuming my Boston Specialist wants to see what my numbers are in September, and add that to how I'm feeling and weight lost etc.
I know that US Medicare doesn't cover us out of our Country, but I don't know how the Canadian system works. Probably it too is strictly in Canada, since it is a nationalized healthcare system. If it wasn't, and you are in the part of Canada that is not far from Boston, you couldn't do any better than the people at Dana Farber.
To you and others who read my post, I mentioned weight loss as a new factor. I have not had problematic weight loss since I've been on Watch and Weight, but too much loss of weight is a factor the CLL Specialists use in addition to RBC, Hgb, and Platelets. If our disease is beginning to run rampant, we tend to lose weight unnaturally. In this instance with me, the enlarged spleen can be known to cause weight loss due to not wanting to eat. We tend to feel full with little food intake, so we start to lose weight unnaturally. I've definitely started to eat less in the last year, and I'm sure its because I feel full much sooner due to the spleen entering the abdomen and pushing near the stomach.
Hey Carl, I'm sure I'll be staying in Canada for this one. But thanks for the info. Also, I haven't had any unwanted weight loss, and right now I'm so hungry I could eat a horse. .... doing a short 2 day fast - I'm almost there. All the best. G
I'm gonna echo the previous poster. Your spleen size, at 23cm, is definitely in the "time to treat" category and edging into the "this can go very bad very fast" category, so I'd make discussing that a priority for the doc next week. Especially since the growth was rapid in the last year and you are experiencing secondary issues with it (with the mass on top).
Some ideas to help you possibly find relief are on the website put together by some doctors whose store is found on the second link below. The first link gives ideas that you can try while you wait for your doctors appointment. I am unmutated 13q deletion, and have been improving since I was diagnosed 15 years ago and sought alternative treatments including diet. It may seem strange but food can be powerful medicine. The third link is to another website with ideas about the spleen and how to protect and heal it. I hope you find the healing you need either through these links or through your oncologist. Best wishes!
Thank you very much. I agree completely about the need for the right diet, proper sleep, and a lifestyle that promotes healing from calmness, kindness, and healthy things for the spleen. I'll check out the links later. Right now I'm on day 2 of a 2-day fast. All the best to you.
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