CLL in stage zero.

[noeagaman]

Hello, I am new to this group and wanted to introduce myself. I was diagnosed with CLL two years ago and remain in stage zero. I am 57 years old and they found it by chance when I was having stomach problems. My could go up and down a little but not enough for treatment. The only thing that concerns me right now is that my spleen is growing larger. Has anyone had this problem? My doctor told me that they have medication that can shrink it when the time comes for that. I am retired from the Navy so medical care is not a problem as far as bills go. I am a little concerned that the military medical system may not have the most up to date treatment though. Has anyone experienced any problems in that area? I live in the USA by the way.

[UK-Sparky]

Welcome to the club, spleen enlargement is pretty common s don't worry too much. Plenty of experts on this site who can confirm. Enjoy life, keep fit and know treatments and survival rates are improving all the time

UK Marc

[Newdawn Administrator]

Hi noeagaman and a warm welcome to you!

I'm glad you're still in a very early stage but sorry to hear your spleen is enlarged. Presumably this was detected during an ultrasound? Do you have a feeling of discomfort/fullness when you eat or a stitch like sensation? It is a common symptom of CLL and this article will help you to understand its function and the issues associated with splenomegaly.

cllsociety.org/2016/06/what...

I'm not aware of what medication your Naval doctor has to 'shrink your spleen when the time comes' as I'd always understood only removal of the spleen or size reduction through treatment was possible. Perhaps he means when you reach treatment time should it be immunochemotherapy or other treatment methods like Ibrutinib.

My only words of caution would be to seek more specialised CLL advice because whilst the Naval medical care may be excellent, it's unlikely to be CLL specific (or even haematological) and generic oncology isn't subject specific enough.

Keep well and hope the spleen behaves itself (mine is slightly enlarged too),

Newdawn

[noeagaman in reply to Newdawn]

Hello Newdawn and thanks for the welcome message. Yes, the enlarged spleen was detected during an ultrasound. It has grown enough to where my hematologist can feel it by hand. He says that the treatment to "shrink" it involves 6 months of IV medication and medication taken by mouth. He said this is not a permanent shrinkage, but will last a few years up to perhaps ten years. He didn't go into detail about the name of the treatment or medication. I have been getting sharp pains in the spleen area once in a while and don't seam to eat as much. I will check out the article you referenced.

Thanks again...

[Quarry]

Welcome to our merry band! Whilst our bodies might be slightly out of tune, our spirits sing well together!

As Newdawn says, you need to get specialist (haematologist) CLL doc. We are rare and a general doc, even with the best intentions, is not up to speed with new treatments and the various paths our CLL can take (and there are very many of these...some commoner, some rarer). Your enlarged spleen is not uncommon in CLL, but there could be several reasons for this. So there is no one treatment for it.....You need to ask you doc 'why is it enlarged / what is causing it?' Only then can you think about what treatment

[noeagaman in reply to Quarry]

Thanks for the words of wisdom Quarry! I do have a hematologist so I am good there.He is actually the head of the hematology department at a large military hospital and has been very informative so far. I had not thought to ask him why my spleen is enlarged and will do that. Thanks for the heads up.

[newyork8]

I have enlarged spleen and liver from the start. Comes with the disease for many. Once in a while a bit of pain there but otherwise not a problem for me. Also it can change in size either way. Many docs are hematologist/oncologists ...the vast majority are not CLL experts which I discovered. Sounds like he referred to chemoommunotherapy like FCR/BR. Perhaps he will want to check your specific genetic makeup as FCR may not be effective for some...Thanks for your service!

[noeagaman]

It has not been an issue for me either, just a little concerned since it has grown more since the beginning. Where in New York do you live. I grew up on Long Island.

[newyork8 in reply to noeagaman]

Spent years in Manhattan and went to college at Columbia. Now live in Miami...NY mixed with South America and LA. I think the spleen is like a giant lymph node where the CLL cells like to hang out and congregate.

[Hoffy]

30 percent of people never need treatment but they are usually older . Sounds like yours is moving slow so that's good .

Take this time to study all the treatment trade offs.

I am on ibruvica and Venetoclax in a clinical trial and it has been good so far .

Cll society's site really helps.

It is good to keep antibiotics with you when you travel as well.

Be well.

[newyork8 in reply to Hoffy]

Hi Hoffy. Are you getting treatment at MD Andersen?

[noeagaman in reply to Hoffy]

Thanks for the words of wisdom and encouragement Hoffy. I have found that this type of group is one of the best remedies so far. It is good to hear from people who have been there and been through the things that I may have to look forward to. I will take your advise and keep antibiotics with me when traveling. I have an uncle that moved to Mexico a few years ago and I have wanted to visit him so badly, but have been afraid to go there and take a chance at getting sick.

[Hoffy]

UC san diego but it think MDA has the same one.

[MsLockYourPosts Passed Volunteer]

I would ask the doctor what treatment, specifically, he is talking about to reduce the spleen and have him write out the drug names for you if they are unfamiliar. Also, at what point he would consider that treatment to be necessary. It takes a while to learn the language with CLL and once we get fairly comfortable with it there is a whole new vocabulary list. His answer will give you some idea about how up to date he is re: CLL.

Be sure you don't let anyone push you into treatment without a current FISH test, as the results are important in determining which treatments are most likely to be right for you. Results can change over time, so you want one done (they can do it as a blood test now) when treatment talks start.

You might want to look into the NIH Natural History study for CLL. Everything is free, flights are paid for and you get a stipend for hotels. Should you need treatment later, you are first in line for their trials, if one fits your situation.

[noeagaman in reply to MsLockYourPosts]

I receive medical treatment through the military since I am retired from the Navy. The doctor that I see is retired from the Air Force and is now the head of the hematology and oncology department at the San Antonio Military Medicine center. He is very thorough and really seems to know his business. He told me that they can use the latest experimental treatments and don't have to deal with red tape getting them. I feel like I am in good hands. I probably don't ask enough questions though. My wife says that is my downfall. I think that I will start recording my visits as another person said in a comment. Sounds like a good plan to me.

Thanks for the advice. I can really use all that I can get...

[kimiD]

Hi noeagaman,

I am also in San Antonio, but travel to MDA in Houston for treatment. While SAMMC is an outstanding facility, we do not have any CLL specialists here in SA, military or civilian. While many times your local hem/onc is able to follow you quite easily, I would highly recommend a consultation with a CLL Specialist. They will be certain you have had the proper tests to study your genetic markers and give you a prognosis. They also are able to work with local docs to be sure you're getting the most up to date treatment/tests. Some folks on this site have posted about the difference between seeing a CLL specialist and a conventional hem/oncologist, it is worth the read. If you do incur some cost, I can tell you it is worth it.

In terms of your enlarged spleen, it can be simply something that is occasionally uncomfortable, or it can be just one of the many indications for treatment. I dealt with that for several years before other indicators gave me reason to start treatment. Fortunately, my specialist knew my genetic markers and was able to help me select a treatment which would have the best outcome for my particular situation.

Wishing you years of watch & wait,

Kim

[noeagaman in reply to kimiD]

Hello Kim, it's nice to meet someone in San Antonio who is going through something similar. I appreciate the advice about seeing a CLL specialist and will talk to my insurance provider about ding this. I see now how there is a difference in seeing someone who specializes in this area. I do feel as though I am receiving excellent care at SAMC, but I do see your point.

Thanks!

[kimiD in reply to noeagaman]

Nice to meet you too! I thought I might be the only one here in town.

[Mwagner]

Great post and similar condition to mine. I’m at stage 0 with no drug prescribed yet. I have not experienced an increase size in my spleen though. I was told to take turmeric and green tea but not a dosage level. No one will! Can you help?