Hello,
maybe someone has an idea. After 5 years w&w my spleen has now enlarged (splenomegaly). I've also been having pain on my left side for a few days now. Are there any natural or herbal ways I can support my spleen? Because I don't want to have a spleen removed. I don't take any other medicine, just vitamin D. In general, I eat a healthy, meat-free diet. My white blood cells are 74,000. The other values are “normal”. Can I do gentle yoga?
Thank you very much.
It’s very rare for the spleen to be removed in CLL unless it’s damaged or ruptured because CLL treatment can restore it to normal size and functioning. The spleen's normal job is to filter the blood and to destroy and break down worn out red blood cells. When you have CLL, your spleen can become so clogged up with abnormal cells that it doesn't work properly. Platelets and RBC/haemoglobin can become impacted as the spleen enlarges and functions less effectively.
Depending on just how large your spleen has become (normal average is 11cm), you may be able to do gentle exercise but you also need to protect it if it’s protruding beyond the protection of the rib cage. I’m not aware of a particular diet that helps but a healthy diet and smaller more frequent meals are preferable. A full stomach puts pressure on the spleen and can feel uncomfortable. Mine had enlarged to twice it’s size by the time I needed treatment and has restored to normal.
Best wishes,
Newdawn
Thanks for your quick reply Newdawn, my spleen is now at 15 cm. The pain bothers me a bit. And I wanted to postpone the treatment. I will heed your advice. Kind regards & wishes for you
Howdy,A year and a half ago my left side started to bother me. Initially I thought maybe it was a pulled muscle or maybe a bruised rib. My CBC numbers were not very high. By the time I realized its not what I thought it was. A upper body CT scan saw a slightly enlarged spleen. Fast forward another few months and the spleen now was classified as enlarged. It was only 15.5 cm, yet it was getting very uncomfortable. I was dropping weight because I could not eat much at all. Then after another month or so, it effected activity. I had to really protect my side. Not lift anything heavy, restrict exercise. It was then starting to dictate what I could or could not do.
After 5 years of watch and wait my Doc said its time to discuss treatment. I hoped to go much longer without treatment. With weight loss, fatigue, out of breath, spleen pain, nausea it was time.
So, treatment cures the problem. If I had it to do over I would probobly have started treatment 6 months earlier. Because for me it has taken months for my spleen to feel almost normal. If I had treated earlier, it might have cleared up in a month.
I cannot add anything as far as alternative treatments for the spleen. AusieNeil had mentioned low dose radiation as a possible way to shrink it. I was having so many other symptoms treatment was the preferred route for me. O & V fixed duration for 1 year, I will be done in April 24.
All the best to you in your decision making.
Thank you for your answer Pacificview and the best wishes for you!
Hi, Newdawn and Pacificview have given most of the info you need here, I’ll just add that my spleen grew steadily and was the main reason I started treatment but I managed to maintain some form of exercise all the way through. My spleen got to 20cm plus,though luckily it wasn’t that painful. I kept up Pilates and Yoga plus some jog/walks but gave up the gym and weights. I told my Pilates teacher and whenever the class did anything that stretched the left side I just held back and was v cautious. On days when my spleen was hurting consistently, I took it as a sign that my body was struggling too much and exercise would only add to the stress, so I’d rest. You just have to take it one day at a time, listen to your body and do what gives you joy. Good luck.
Thank you for your answer Gampo and the best wishes for you!
I am just now recovering from the emergency ruptured spleen. Happened for no reason at all that I am aware of. It had been in somewhat enlarged but not noticeably dangerously, so I’m eight weeks out and then I got an abscess beside the area that it was taken out so another hospital stay I don’t know what their preventive measures are but whatever you can do look into it because it’s been a horrendous problem with me after the abscess or infection set in and I had to have drains put in to drain the liquid infection stuff out bacteria I guess it was I was in the hospital additional four days and then back to have the drains removed / I thought I was recovering from the spleen surgery and then on heavy Iv anabiotic got 5 days and oral once home after 4 days So I don’t know how rare it is, but I guess I’m one of the rare ones.
Thank you for your answer Dmdtennis and the best wishes for you!
My spleen has grown too - doing yoga too and so far so good no pain.
Thanks newkidonsite 
hi. I had treatment because of fatigue, and massive spleen around 20cm. I had V&O and magically symptoms of spleen gone within first few weeks.
If they are recommending treatment then they clearly are at point where they think you need it, so I personally wouldn’t delay for sake of it, as the treatment is magical at reducing spleen. Don’t let anyone irradiate you! The new treatments all melt the spleen. It’s amazing! 🤗 my spleen is normal now.
Thank you for your answer Pearlpink and the best wishes for you!
Hi, I have been told I have a very enlarged spleen and will need treatment to reduce its size. Please can you tell me what V and O treatment is? I am not familiar with the term, I do not want radiation treatment. Thanks
Hi upside! I had V &O , which is venetoclax and obinutuzumab. It reduced a lot of my symptoms from the spleen within a few weeks.
All the best taste to nowadays reduce the spleen.
I chose V&O, because it is finished after a year, anx I am now I. Remission, with a normal spleen (a little bit larger than average because there is always a bit of extra fibrous tissue, because it was so big.
The other main treatments are tablets for life and also reduce the spleen back to normal, but sometimes take a bit longer.
There’s not much to choose between them, and indeed there are newer regime including venetoclax now in some places!
V&O means going in to the day case unit for infusions are beginning, but at least 6 months is just daily tablets.
So it’s often a matter of choice. BTK inhibitors usually need very little hospital attendance.
It very much depends on your medical history etc. I have a tendency to arrythmia, and BTKs would have put me a little more at risk. I’m also a bit overweight, and very prone to infection so li wanted to not be in something that made me more immunosuppressed for a longer time.
I had poor quality of life and had to take retirement, so it didn’t matter that I had to go into hospital.
There is more risk of toxic lysis syndrome with V&O , as it breaks down cells so fast and produces some toxic products. However they look at the size of your nodes etc, and they admit you to give you premeds etc to control the symptoms if you get it. I liked the fact it was so fast, as it made my skin keen more comfortable within the first week. I miss the hospital appointments weirdly, because you develop such a camaraderie with the lovely nurses and other patients.
I’m not an expert but those were my reasons for choosing V&O, and Covid was more rife at the time. Good luck! There are lots of people on the site who are more expert. Anx we are all different in terms of what is the best match for us!
Omaschnabel
I'm five and a half years on Watch and Wait, and my Spleen is now a little over 20 cm and sticking below the rib cage by around 5 cm. I have daily light pain in my lower abdomen, somewhere around where the Spleen is now not covered by the ribs. I've done a lot of homework on this, and I am followed by arguably the top name in the field of CLL in Boston. So I have her input now too.
They don't remove the Spleen unless there is absolutely no choice. The best thing to do, if the Spleen is definitely a problem, is to start treatment. Treatment will normally reduce the Spleen size a lot; maybe, back to its original size.
Basically I've been told by Boston that she has many patients with enlarged Spleens, and most do fine for a long time. She uses the other criteria more than Spleen size, like RBC and HGB and Platelets, as indicators for triggering treatment. Also considered are frequency and strength of infections, and expansion and problems due to number and size of lymph nodes. I was told that if the pains in the abdomen persist and are strong, that we might need to start treatment based on that.
There is no herbal or other medicinal remedy to bring the Spleen back down to more normal size, because the increase in size of the Spleen is due to the over absorption of the Red Blood Cells that are being cleared out of the body. Our illness causes the Spleen to take in and get rid of extra production of different types of cells, so it gets fuller and grows in size. The only thing that will reverse that increase in size is treatment that works and reduces the added stress on the Spleen.
Carl
With a spleen as large as you've got now (over 20cm and 5 cm below the ribs), I might not wait much longer for treatment. With so much spleen unprotected, damaging it becomes very easy to do (even a sharp stop driving), and a damaged spleen can quickly become a life threatening situation.
Hey MisfitK
I agree with you and was pretty worried, but I got to see my CLL Specialist on September 11 and 12 recently. She had CT Scans taken of Chest, Abdomen, and Spleen on the 11th followed by blood work and the visit on the 12th. She felt and pressed and showed me the Abdomen picture which looked like giant white golf balls, some more the size of baseballs all over the place. The pain however when I saw her had reduced dramatically from what it was months before when I had a CT ordered by a Gastro.
She did end up saying this time, that it isn't too soon to start treatment. She also suggested that I get IVIG very soon (because of my too frequent URI that I had trouble beating. I went home to Florida and got the local Oncologist to order the IVIV which I had on October 2, but I really wanted to hold off on the Zanubrutinib until February 1. It has to do with the big out of pocket between September and December, versus the much lower annual cost of the Zanubrutinib if I waited until 2024. I communicated with her Nurse Practitioner about the hazzard of waiting until February 1 (I visit Boston again on March 5) and the NP said they felt it would be alright. Her only suggestion was that if the pain in the abdomen returned and wasn't good, or if I felt urination problems or pain in the lower back, that I should change my mind and start. She said the huge increase in Lymph Nodes can press against the kidneys and potentially cause problems.
The IVIG was a miracle. I immediately beat another URI I had gotten on the trip to Boston, with overnight success. Then daily my pains and stamina dramatically have improved, and I feel really good. So I'm just being very aware of the abdomen and lower back and urination, and if all goes well I'll ask to start on February 1 with the Zanubrutinib. In 2024 the Catastrophic Stage of Part D is eliminated, so after the first month of about $3000 I'll have $0/Month Cost for the entire rest of 2024.
Carl
Our spleens are specialised lymph nodes with the additional function of filtering our blood as Newdawn mentioned, plus the spleen provides a reservoir to supply an immediate demand for red blood cells, platelets and neutrophils when there's rapid blood loss with possible infection. It's the CLL cell sequestering which causes the spleen to swell, just as for other nodes, with the larger spleen size increasing the filtering efficiency. That places an extra demand on our bone marrow to replace blood cells removed before it was necessary.
CLL treatment kills off the CLL cells in the spleen and it shrinks back towards its former size.
Thank you for your answer Carl and the best wishes for you!
You might want to reconsider your reluctance to treatment.
After almost 5 W&W years, a large, protruding below my ribcage, and very, cldnt be ignored or yogaed away, painful spleen, was one of the determining factors to my getting O&V treatment; which I completed, December 2020.
The speed at which O made my spleen return to normal, and quit kicking my butt was amazing . . . . . about a week. The other cool thing about treatment is that in all likelihood, it'll also knock down your CLL.
Thank you for your answer CLLBGone and the best wishes for you!
I agree with all the above posts.y spleen was over 25cm when I started treatment. 2 pills a day 12 hours apart and my over all comfort level has been restored only took a few weeks and my spleen was down to 18cm. It still bugs me a little bit but at least I can sleep normally and move around normally. The dr thinks it will shrink back to the 11cm shortly.
Thank you for your answer Barrystreets and the best wishes for you!
Rice, wheat, quinoa, buckwheat, lentils, chickpeas and peas should be eaten everyday. I would also see an acupuncturist.
What evidence can you provide for those dietary suggestions and acupuncture for pain associated with an enlarged spleen/splenomegaly?
Thank you.
Hi Omaschnabel, An enlarged spleen was very much an issue for myself. At it’s largest it had reached 30cm, conventional chemotherapy and radiotherapy failed to shrink my spleen and as a consequence I was approved for the Ibrutinib trial that was 10 years ago and still on this treatment. The last time my spleen was measured was around 2 years ago and at that time it had reduced to 16cm.
Since then I have, like yourself, continued to have left side pain but assume this to be my kidneys.
It is something of a coincidence but today I met with a new haematologist who seems very proactive and spent sometime discussing my CLL history and in doing so has arranged for me to have a fresh scan of my spleen as she feels it maybe time to reassess my Ibrutinib treatment.
Not sure if my experience is of much value to yourself but I do wish you well
Aerobobcat
Thank you for your answer Aerobobcat and the best wishes for you!
I found this exercise beneficial for me. I do it when I get up and before I go to bed. I have an enlarged spleen, which does not affect my daily life.
youtu.be/dWAgGlbuaZI?si=7_Q...
Great, thank you EugeneL2
I would like to thank you.
Your answers make it more acceptable to me. Yes, I can reconsider my attitude towards treatment and will continue to move forward.
All the best to you!
Hi Omaschnabel - I had similar issues pre-treatment, and posted what ended up being a lengthy discussion here: healthunlocked.com/cllsuppo...
I don't believe there are herbal/natural remedies -- the underlying cause is CLL accumulation in the spleen/lymph system, and supportive care I don't think will change that effect. If it did we wouldn't need the expensive cancer meds, right?
I will say I'd be careful. I lacerated my spleen internally just putting Christmas lights up. Once your spleen gets to a certain point (different for each of us), it is possible to do damage with relatively common activities. An external blow/force is not necessarily required.
Spleen rupture is a serious outcome and is to be avoided. They don't remove spleens as much these days because (according to my oncologist), while you can function normally without a spleen, the long-term data indicates a significantly higher mortality from infection/immunocompromise for those with spleens removed.
But the good news is, there are both short-term immediate and long-term actions to take. Short-term, once I had demonstrated things were near the breaking point, they put me on a steroids-based medical course that reduced the spleen quickly, though for only a few weeks. Long term, starting treatment of the underlying CLL will in most cases reduce your spleen quickly.
In the meantime, I figure the old joke applies:
"Doctor, it hurts when I do this!"
"Well, stop doing that."
If yoga helps you out, great, just listen to your body if it hurts. And if you have a spike in pain, listen to that too and don't delay in getting it looked at. That was the signal that put me in the hospital.
Good luck sorting it out.
Thank you very much for sharing. I'll read it carefully over the next few days. All the best for you.
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