“Splenomegaly”
One of the many complications of CLL is an enlarged spleen; the technical word for it is “splenomegaly”. In simple terms, your spleen becomes enlarged when it is stuffed full of CLL cells and other cellular debris. So, if you are sporting a slightly pregnant look without actually being pregnant, you might want to talk to your doctor about the status of your spleen.
Most people go through their entire lives without ever thinking about their spleen. I am willing to bet majority of people do not know where in the body it is located or what the heck it does for a living. You are about to become one of the educated minority that knows all about splenic function! One of the better side effects of CLL is the terrific biology education you never thought you would get in your life!
Think of the spleen as a blood filtering organ and you won’t be far off the mark. It is about the size of your clenched fist and located just a tad lower than your rib cage, on the left hand side. Under normal circumstances it is not possible to feel your spleen by mere poking around, even in skinny people. But when it is engorged (either due to CLL or some other illness such as infection, liver disease etc) trained physicians can feel the tip of the spleen just below the rib cage by physical palpation. If your spleen can be felt by palpation, it is already enlarged beyond its normal size. A CAT scan will reveal exactly how enlarged it is and whether it needs to be treated.
Symptoms of an enlarged spleen
Most often you are not likely to feel any symptoms of spleen enlargement, at least during early stages of the process. But as it grows larger it may press against your stomach and that may cause you to feel full – even if you have just eaten only a small snack. I am told that patients with very large spleens walk / balance funny, not unlike pregnant women, and this may cause back pain. More important symptoms of an enlarged spleen are anemia and thrombocytopenia – low red blood cell counts and low platelet counts, respectively. These are the two symptoms that matter most to us as CLL patients and I will be focusing on them in the rest of this article. As you would guess, side effect of low red blood cell counts is deep fatigue. Red blood cells carry oxygen and with reduced oxygen carrying capacity fatigue follows soon after. Similarly, low platelet counts mean poorer blood clotting capability and you may find you are prone to bleed longer if you cut yourself accidentally.
What does a spleen do?
As I said before, your spleen acts like a spongy filter for your blood. As blood circulates through your body, some of the cells (red blood cells, platelets) get worn down and damaged. It is the function of the spleen to remove these damaged cells from circulation. The spleen also acts as a storage location for extra red blood cells and platelets newly minted by your bone marrow.
Unlike red blood cells and platelets which are manufactured only in your bone marrow, lymphocytes can also multiply in the lymph nodes and the spleen. In healthy individuals the spleen is important in putting out additional troops of lymphocytes (white blood cells) when an infection is detected. Hence, your spleen is an important part of the first line of defense in fighting invading pathogens. The spleen also serves to trap some bacteria.
An enlarged spleen affects each of these vital functions. For instance, as your spleen grows larger, like any clogged filter it begins to trap (“sequester”) normal red blood cells as well as abnormal / damaged ones, reducing the number of healthy cells available for circulation in your bloodstream. It also traps too many platelets. Eventually, excess blood cells and platelets trapped there can further clog your spleen, interfering with its normal functioning. An enlarged spleen may even outgrow its own blood supply, which can damage or destroy sections of the organ.
What causes splenomegaly?
A number of infections can cause spleen enlargement, quite apart from the CLL related issues we discussed above. For example:
- Mononucleosis and other viral infections can cause splenomegaly. Teenagers are typically more likely to have clinically significant EBV infection precipitating mononucleosis (“glandular fever” for the Brits in our membership) and therefore more likely to have splenomegaly for that reason.
- Bacterial infections – syphilis can do it. Endocarditis – an infection of your heart’s inner lining – can also cause spleen enlargement.
- Malaria (and other parasitic infections) are frequent culprits.
- Liver cirrhosis and other such diseases can spill over into the spleen as well.
- If you develop a blood clot in the veins servicing the liver or spleen, that can cause blood flow to back up and cause the spleen to swell.
- Blood cancers such as CLL, NHL and Hodgkin’s disease can cause splenomegaly.
- Certain metabolic disorders such as Gaucher’s disease and Niemann-Pick disease can also interfere with proper spleen function. People of Ashkenazi Jewish ancestry are thought to be more prone to these two metabolic disorders and therefore more at risk of splenomegaly for these reasons.
- People of African ethnicity are more prone to splenomegaly since it is frequent complication of sickle cell disease.
Complications
An enlarged spleen in a CLL patient can pose special problems. As the filtering capacity of the spleen gets compromised, perfectly good red blood cells and platelets can get trapped in there and you will see a sharp drop in these blood cell counts in your monthly CBC blood test. Even if your bone marrow is doing its job and turning out the required number of red blood cells and platelets, and there is no trace of autoimmune disease, the fact that your spleen is trapping these good cells can play havoc with your blood counts. And as you know by now, it is not a good idea to live long without healthy red blood cell or platelet counts.
Equally serious is the risk of a ruptured spleen. Even in healthy people it is possible to get spleens damaged, especially in car crashes and contact sports like football. Rupture is a much more likely possibility when your spleen is enlarged. A ruptured spleen can quickly become life-threatening by uncontrolled bleeding into your abdomen.
Treatments options
It is important to understand the reason for the enlarged spleen, and therefore target the treatment to correct the problem. If the cause for splenomegaly is an infection of some sort, then it is appropriate to treat the infection with appropriate antibiotic or anti viral drugs. But if the underlying problem is CLL, then it makes sense to treat the CLL itself with appropriate chemotherapy / chemoimmunotherapy. In many cases treating the spleen may take center stage if it is causing sharp drop in red blood cell counts and platelets.
Very often a swollen spleen makes things worse in cases of autoimmune diseases such as AIHA (autoimmune destruction of red blood cells) or ITP (autoimmune destruction of platelets) and it becomes impossible to stabilize blood counts without removing the spleen surgically. A Splenectomy (surgical removal of the spleen) is an option worth considering in critical cases of AIHA and ITP, and for many patients it may be the best option available.
I know, it is not fun to contemplate leaving behind a big chunk of your self behind on the operating table. But we must all learn to make the tough choices when we have to make them and not dither ourselves into a worse situation. These days splenectomies have become pretty routine surgical procedures and unless your spleen is very large or you are morbidly obese, the surgery is done via “keyhole surgery”. Laparoscopic surgery is done by making several very small incisions and this approach reduces the pain and recovery time significantly.
You can live a full life without a spleen, provided you take a few precautions. As we discussed above, the spleen is an important part of your infection fighting apparatus. Without a spleen you are less able to fight infections and it is important to remember that. At the first hint of a fever it is recommended that patients get themselves to the local emergency room. It is also important that some one goes with you to tell the ER doc in charge that you have had a Splenectomy. Otherwise the guy may roll his eyes and mutter about hypochondriacs who waste his time with a bit of a fever.
Things you can do to protect yourself
- If you have an enlarged spleen, it makes sense to avoid sports such as skiing, football and hockey. It is now even more important to wear a seat belt and be a safe driver.
- Avoid traveling to places that have endemic malaria infections. As I know from first hand experience, much of India has rampant malaria, especially during the rainy season when mosquitoes breed.
- If you have had a splenectomy, you might consider getting one of those medical bracelets that says so.
- Last but not least, please remember that while a splenectomy is not something a healthy person would want to do just for fun, in many CLL patients suffering from debilitating fatigue as a result of dropping red blood cell counts, getting rid of the diseased spleen will give you a new lease on life. Making these tough calls is what sets apart the survivors from the easy victims in this deadly serious CLL “game”.
- You can read a lot more about splenectomies at this site. http://en.wikipedia.org/wiki/Splenectomy
Off topic, my apologies for the long break between the last article and this one. I have been fighting a bit of a blue funk for the last little while. Hopefully it is now a thing of the past.
49 comments on "Enlarged spleen"
Thank you very much for this article, Chaya. Hopefully, spring Sunshine will help alleviate the blue funk..
mhbj
Very informative Chaya. Thank you!
I had a huge spleen (“massive” splenomegaly), one of the biggest any of my docs had ever seen. It was down into my pelvis and 4-5 inches to the right of my navel. But 4 cycles of FCR shrunk it right up, although it had not disappeared beneath my ribs until about 2 months after I stopped treatment. One doc told me that you cannot feel it coming out from under the ribs until it is about 3 times its normal size.
When it first began expanding, I had problems breathing and other discomfort. But as time went by, I adapted. It was surprising how easily I got along with it, as big as it became. It did, however, reduce my ability to eat big meals.
The thing you have to worry about with an enlarged spleen is a rupture, which people can die from. You definitely don’t want to engage in any contact sports with an enlarged spleen. One doc told me I should sit only on the left side of cars so the seat belt across my chest was not across my spleen.
Chaya,
Thanks as always. You shine a bright light on many many people so that we’re able to swap our blues to a better color. We’re hoping your blue transforms itself to your favorite color.
I’m one of your CLL fans with lots of complications; ITP, Type II Diabetes, IHS, wet macula degeneration, etc. These combinations are well beyond the ability of my Oncologists to deal with. Every bit of information that you provide helps be understand my issues a little bit better. Keep up the great communications.
Thanks for this article.
My haematologist says that the removal of my spleen will help my symptoms and blood counts.
However the surgeon I have consulted and who is very experienced in removing spleens for haematologists, is very cautious about proceeding.
He has described the risks and complications for me, which are numerous and not to be dismissed lightly.
On balance, if the FCR can keep the spleen to a reasonable size, then perhaps that is the safe way to go.
I have had previous radiotherapy to shrink the spleen and this does make the surgeon’s task more difficult.
Low blood counts, risk of infection and rupture, plus the radiotherapy, are the issues.
Hello Chaya,
As usual your article should prove quite helpful to those who read it.
There are a few points that should, perhaps, be emphasized:
In the US the most common causes of splenomegaly and hypersplenism (the syndrome caused by splenic enlargement and congestion) are portal hypertension (mainly due to liver disease or thrombosis of the portal vein) and hematologic malignancies such as CLL. Worldwide, chronic infections play a much larger role.
The thrombocytopenia (low platelet count) caused by hypersplenism by itself is rarely the cause of significant bleeding, but does pose increased risk prior to invasive surgical and diagnostic procedures.
Platelet transfusions temporarily elevate the platelet counts in such patients, but the transfused platelets are not as ‘hardy” as are our own platelets and they, too, become trapped in the spleen, so the elevation of the platelet count is only transient.
Loss of the spleen (usually via splenectomy, some times by “auto-infarction” wherein the spleen atrophies) is associated especially with an increased risk of fulminant infections with certain types of bacteria (such as the common pneumococcus) which have polysaccharide capsules. Given the fact that patients CLL already have impaired immune responses to these organisms, the “loss” of defenses with splenectomy is uncertain, but should be respected. All post splenectomy patients receive pneumococcal vaccine and all CLL patients should probably receive this vaccine at diagnosis and every 5 years thereafter, even though their response to it is muted.
The benefit of splenectomy in patients with intractable ITP is well documented. In certain hematologic malignancies (eg, hairy cell leukemia and some of the so-called splenic zone lymphomas) splenectomy is occasionally associated with prolonged remissions. Unfortunately there is no evidence of this benefit in patients with CLL.
Once again, thank you so very much for all that you do for the CLL community.
Rick
To caring and clever Chaya,
You have a great gift. It is the ability to study almost impossible
medical verbage and turn it into readable, easy to grasp information.
I am very grateful to have you in my world where you make it simpler
to understand my unwanted CLL guest.
And your graphic skills are enormous. The type-faces, their size, and the lovely layouts of your pages with the delightful inserts. Thank you.
Chaya,
Thank you again for a wonderfully informative article. What I find increasingly interesting as I travel down this path of CLL side effects and symptoms, are stories Like Burke’s above.
To a lay person just reading this article and naturally being aprehensive about any abnormalities in his or her body, an enlarged spleen sounds like a pretty scarey proposition. Then you read what
Burke has related, and you say to yourself, “My God, people can adapt to just about anything” That is true, the human body is a remarkably robust machine, and combined with the human spirit and the will to survive, people can overcome many physical assaults on their health and well-being and still go on living a productive life.
So despite all of the dire results to our bodies that can be caused by CLL, with a good attitude, a healthy lifestyle, and a positive relationship with our care providers, we can all live fuller, more fulfilling lives in spite of this awful disease.
Chaya
As always, thank you for an exceptional description of the spleen.
Blessings,
Rita
As Peter pointed out, it is perfectly legitimate to consider chemoimmunotherapy regimens such as FCR to treat the underlying CLL as a way of treating the swollen spleen. Not every patient is a good candidate for surgery. Rick is quite correct in reiterating what I recommended as well, people with splenectomies are at higher risk of infections, sepsis etc – hence the guidance to get thee to an ER facility at the first sign of a fever.
Which raises an interesting question, how do you know when you have a fever? Sounds simple, just get a good quality thermometer and take your temperature and if it is above the stated normal of 98.4F you have a fever. Right?
Not so fast. First of all, none of us are exactly “average”. Each of us has a unique body chemistry and metabolism and therefore each of us has our own unique “normal temperature”. I have heard too many admittedly anecdotal stories from CLL patients who swore they had far lower temperature than 98.4 F as their personal normal. I have never figured out why this should be the case. PC too had a personal normal of 97.0F, well below the “average”. For him a temperature of 98.4F was a fever worth noting.
This is what I did. During a period of good health I monitored PC’s temperature each day, always at the same time (5:00 pm). It is important do it at the same time each day since all of us have diurnal rhythms and our body temperature cycles by as much as 1-2 degrees over each 24 hour period. Being an engineer and card carrying geek, I plotted all the data and drew a best fit straight line through it. That best fit line said PC’s personal “normal temperature” was 97.0F and that was the reference point I used in all subsequent situations to decide whether or not he had a fever. A hard copy of that little graph also helped convince snooty ER docs that he did indeed have a fever at a mere 99.0F
It is not just post-splenectomy patients that need to be careful about getting medical help immediately upon spiking a fever. Many CLL patients become neutropenic (defined most often as neutrophil counts below 1.0K) after going through high impact therapies such as FCR or Campath. Neutrophils are the frontline troops in fighting infections. In extreme cases of neutropenia physicians recommend extra precautions (such as special neutropenic diet). But the general guidance is to watch out for “neutropenic fever” as well as take extra precautions to avoid infections in the first place. Mayo insisted that PC wear a high quality N95 mask during his time in the airport and airplane when his neutrophil count was 0.850K.
Chaya,
Thanks so much for every article, however far apart they are each, in themselves, tremendously important and timely for someone.
I wish we could ease the funk, but probably nothing but time can do that.
Your continuing to educate the rest of us during a dark period of your life is courageous and so appreciated.
Helene
Chaya,
As someone who just this past week was informed that my spleen is enlarged, this is a timely post. Thank you.
Dear Chaya,
Thank you for the important information. I hope the gratitude of all of your fans and followers of CLL Topics cheers up your funk. You are providing such important help. It is greatly appreciated!
Bruce Forrester
Thanks so much for the article. My spleen had enlarged from the rib cage to the umbilicus and filled my whole left side. After two rounds of PCR (11 years after diagnosis, but at least 8 years of being more than 3 times normal size), it retracted to only barely palpable. It didn’t seem like much of a problem, but I am a lot more comfortable now.
I had told my oncologist that I didn’t understand how the spleen worked and, somewhat tongue in cheek, she said that she didn’t either, so the article really helped.
Incidentally, my temp has consistently come up in the mid-96.5 range.
FYI off subject. Warning to those who use Omnaris nose spray, and get cortisone injections for whatever, knees, shoulder, etc. They contain steroids which raise white blood cell counts. My WBC just went up 74,000 in a three month period by having, and using the above. Not good.
Excellent information. I really liked the picture of the spleen. You are a blessing to the CLL community.
Carol
Hello Chaya,
Thanks for the article, which is very timely. This is my first post to the forum. Although, I’ve been reading posts and articles for a few months. I was diagnosed with CLL in December when I had a Sigmoid Colectomy for a perforation I also didn’t know I had. A CT scan indicates my spleen is about 2x normal size.
CLL Topics and Updates are goldmines of information that unveil some of the mystery for newbies like myself. You do great work!
Chaya,
Bless you for your untiring work to keep us so well informed!
I trust you will be encouraged greatly in the coming days and weeks.
Keep up your great work of encouraging us.
Mark
Well, I have a slightly enlarged spleen that my oncologist of choice( I interviewed 3) detected by ordering an ultrasound scan. At 62 I don’t play much football, so no major lifestyle changes are anticipated. I’m looking forward to seeing you at Niagara Falls! :)
Chaya,
Strong work again, by you and the team. Welcome back!
Adding to the comments of others.
Well prior to splenectomy it is a good idea to get vaccinated against all possible encapsulated bacteria: meningicoccus, strep pneumoniae (pneumococcus) amd H. flu.
They is a an old study that actually suggests improved survival in late stage CLL, especially in patients with cytopenia (low blood counts).
Laparoscopic surgery is the way to go, but it dependent on the skill and experience of the surgeon.
I had my spleen removed when my platelets were in the 20’s. It did nothing for my ITP, but I have had no untoward effect either.
I still wear an N95 mask on planes if anyone coughs though my counts are back to normal post transplant
See you in Niagara Falls.
Be well
Brian
Chaya,
As always, more information written in a style all of us can understand.
I think the mention of body temperature is important also. I can still remember my very first routine visit to my primary doctor (before heading off to the oncology world) and he was surprised by my low temp, 97.0. It has remained in the 97 degree range for four years or so and I do check it often. May be nothing, but perhaps some way in the future of a study to manipulate temp in CLL patients and its effects could be interesting.
Thanks again,
Jim
Chaya,
Thank you for this very informative and easy to understand explanation of what the spleen is used for and what to look for when there may be a possibility of enlargement. May you feel better soon. Time heals all things, even loss of a loved one. You are a very strong person and involving yourself in the help of others is always good therapy.
God Bless you for your caring spirit towards others.
I am new to this forum and I have learned a great deal when you post information for us to read and share. I will share this with my family as well so they have a better understanding of my disease and how it affects us.
Anita
I would like to hear from more of you with regard to your “normal” temperature and whether it is lower than the population average of 98.4F. A recent article in JAMA has been an interesting read on the subject of the so-called “Lance Armstrong Effect” – the subject of my next review – and it has to do with body temperature.
It isn’t scientific by any means, but my pre-chemo temps were consistently low, except when I had the shakes and bakes with my first course of therapy. That means that thrice weekly temps for 16 weeks months apart were fairly consistently below the threshold of “normal”. I do not know what my pre-morbid temps were with certainty, but believe that they were more consistently “normal” at around 98.6 F over the years.
Chaya,
Great piece. I was diagnosed in 1999, and aside from some wonky counts, pretty much my only symptom is an enlarged spleen. I’ve stayed active – play hockey (non-contact) and have noticed a direct correlation between physical activity and swelling. When I’m active and exercising there’s no “full” feeling. Get a bit more sedentary and it comes back. I’m not sure if there’s any medical evidence to back up these observations (my doctor says no).
If you can, staying active is a huge tonic and being in good shape also makes drugs/surgery etc slightly less terrifying.
Keep up the good work Chaya. Can’t imagine what I’d do without your clear, cogent and reliable observations.
Dave
I too have noticed a lower than average normal temperature, (anywhere from 95 to 98)but I haven’t been scientific about coming up with a good average number. As soon as I recover from this, my first ever ear infection, and am off the anti-biotics, I will follow your procedure and create a nice little graph. For me it would be more regular if I do it first thing upon waking. Is that okay, or will that create an unrealistic number? How long before the average is valid, or will it become apparent just by looking at the graph?
I will send you my results once I have them.
In the mean time, I am wishing you all the best.
Dave:
Like you I too believe there is a correlation between vigorous exercise and better control over the CLL. My next article on Updates will propose a hypothesis of why I think this is the case. I have some intriguing facts to back me up, but I have to confess there is no slam dunk smoking gun – yet. I am curious to see what our membership makes of it. I hope to publish this provocative article in the next few days.
Chaya, I so appreciate your articles and responses to the comments. You have been a great help and blessing to me. You are extremely knowledgable, but in addition to that, your kindness and compassion always shine through! As a caretaker, I have found that I can’t always find answers to my questions, which aren’t necessarily the same questions as patients might have. I need much more information than my husband cares to have, and he prefers to more or less ignore the CLL whenever he can.
Regarding splenectomy, my husband had his spleen removed 2 years and 4 months ago, after an 80% run of PCR which did nothing to help his spleen. His previous FCR treatment didn’t last as long as it should have so they switched to PCR. He had the recommended vaccinations before surgery. Since his surgery (“regular” not by laproscope), his blood counts have been normal and he has not had any infections to speak of. He did develop Diabetes II, possibly contributed to by the steriods given monthly with IVIG? Anyway, his spleen was extremely large, approximately 10 x normal size, and he did received platelets at time of surgery. He hasn’t needed anything since, and has not had any significant illnesses since then either. His well being improved greatly.
For those for whom chemotherapy doesn’t work, who opt for a splenectomy, hopefully you will have good results. My husband was late stage CLL at the time.
Chaya, Thank you so much for this article. As a matter of information for your collection, my normal temperature is also low…97.”something” never 98…the point number is variable, but has not been taken at the same time of day. I will start keeping a record taken at the same time of day and averaging the number over time….an interesting thought. Let us know the result of your informal poll.
I was diagnosed with CLL 2 years ago when a physical was done in preparation for a total knee replacement. At the time, I felt great except for knee pain and problems walking and was told that, if I had to have cancer, it was a good one to have and it would likely cause no problems..HA! The knee replacement was postponed for a time, but my doctors eventually decided that I had better do it in case the CLL advanced. I’m glad to say that I can use stairs pain-free now, my legs are the same length, and I am happy to have that behind me at this point. The not so good news is that the CLL has started to advance. Also, I have developed some of the symptoms listed here…a pregnant look and walk, the full feeling when starting to eat, low red blood cell and platelet count and advancing white cell count. I now know what to ask about on my upcoming visit to my oncologist. I am writing a list. He is a very nice man who hates to give people bad news and I must know enough to ask pointed questions to get needed information about my condition. One does need to make plans. Since I live far from the maddening crowd, there will come I time when I need to consult specialists from far away.
My health is also complicated by epilepsy (partial seizures)and idiopathic pulmonary hypertension.
You are a real lifeline. Thank you so very much,
Betty
My husbands normal temp is now about 97, in fact we were just having a discussion about how we would ever convince an ER doctor that 99 would be something to pay attention to. Since we have only one ER, maybe we will actually go and have a conversation with them to educate. Better now than in an emergency.
This is just a thought…most physician offices routinely obtain a patient’s temperature at the time of office visits and certainly before administering chemotherapy or immunotherapy. The temperature of CLL patients is, therefore already recorded in large numbers.
Perhaps Chaya could persuade one or more centers to review this data on a group of consecutive patients with CLL that they have already seen. The answer to the question may already be available if some helpful people are willing to review the information already available.
There may be something to this, because even when I felt my worst during therapy my temperatures barely exceeded 100 degrees F.
For the five visits I’ve had with my hem-onc since last May, my temperature has ranged from 97.8 to 98.3.
Tim
Chaya, thanks for all you do for us.
You suggest a medical bracelet for those who’ve had a splenectomy. My terrific internist suggested I wear one just for splenomegaly because of the higher risk of rupture. It’s important that medical personnel know to look for internal bleeding if one is in an accident and can’t talk, whether one has had a splenectomy or not.
Barry
Rick:
Your idea about the vast database of patient basal temperatures that already exists is obviously right! However, I doubt we will be able to get access to it. Patient confidentiality and all that stuff. I cannot see how institutions like the Mayo can let anyone outside of their organization have access to their medical database without running into confidentiality issues.
BarryRB:
Your internist is indeed terrific. Nice to see a proactive guy going the extra step to protect his patient.
If you don’t mind, can you give us exact details of how one goes about getting a medical alert bracelet? A good percentage of CLL patients have swollen spleens and your point is very valid that medical personnel be aware of incresed potential for internal bleeding.
Chaya
A lot of people, including me, use MedicAlert.org. It’s a non-profit, prices are reasonable for the bracelet (or dog-tag, which I prefer), and there are a lot of options for different materials and designs for tags and chains.
What if your condition changes? For an annual fee of $27 (the first year is a little more), you can enter and update information on their website at any time. Medical personnel get the up-to-date information by calling the toll-free number on the tag.
In addition to whatever you want engraved on the tag, you can record on-line more details of conditions, as well as meds and dosages. They will also notify whoever you list to be contacted in emergencies.
I’ve had this service for about five years with no complaints and my wife has had it for longer. (We’ve never had to use it so I can’t vouch for performance.) However, there may be others equally good, with which I’m not familiar.
Best wishes,
Barry
Chaya,
In answer to your question about body temperature, mine stays around 97.4. I was diagnosed in Feb. of this year, but was told by my hematologist/oncologist I actually had CLL a year ago but it wasn’t caught by my family doctor. At that time, my numbers were just barely over the limit. I know my temp. used to be right on 98.6, but don’t know exactly when it started dropping. As a side note, my oncologist told me I didn’t need any extra precautions for the airplane trip I just took from Georgia to California and back. I came home and a few days later had a nasty cold (?) that I’m hoping won’t turn into pneumonia as I haven’t had the vaccination shot yet. The cough is pretty scary. I have been in bed for four days – today is my first day up – something you will NEVER see me do! I guess the lesson here is even though I’m a stage 0, precautions should still be taken. It only makes sense. My numbers alone told me that. Well, not to sound repetitious, I along with everyone else wouldn’t know what to do without someone like you in our corner. Even though I am brand new to this CLL world, you have helped keep me sane. Your husband gave his life to CLL, and now you are giving yours. What a selfless gift you are giving us. Thank you is not enough, but I know no other words. With sincere gratitude, Nancy
Chaya, I’ve read and appreciate this article about enlarged spleens and the one today about the Lance Armstrong Effect and Hyperthermia.
Your article about platelets and staging got us thinking. Thank you so much for the information! We could use some help interpreting what is happening lately.
After reading your platelet/Staging article I updated Terry’s Excel records. Thanks to you we have clear record charts from early 2003. These last ones in color are even better. We will bring them to Terry’s May oncology appointment.
We can see from the chart and graph that he has a shorter interval of increases of absolute Lymphs to nearly doubling in the last 12 months. Increase had been slow till now. He also shows a decrease in Platelets to the Feb 09 test low of 112. Platelet counts have been headed south for a year. He shows gradual decreases of RBC, Hgb, HCT to below normal over the past 3-7 months. His labs had been quite good except for WBC and #lymphs. Neuts started rising above normal in Dec 08. Nothing is dramatic, but overall I’m beginning to get concerned about the next moves and choices.
Terry may be at a turning point from watch and wait. His abdomen is larger, tender and small meals stuff him. Last CT scan in 06 measured it at 13 at short axis points. It has not been palpable. He also has type II diabetes treated with oral meds, which flares during infections. When not having infection Terry’s nodes go from bulky and tender down to quite small. He shows some peritoneum nodes on CT only, so we’ve not been concerned. He also has more fatigue and shortness of breath. Since being off work he rests as needed during the day and sleeps in mornings till he wakes, vs. 5 am aarms
I was interested to read the conversations about average temps. Terry used to be around normal, but now is in 97 degree range. When ill with an infection he may or may not run temps. A physician I know socially said Terry should head to an ER for any temp spike. He’s an ER physician at Seattle’s Harborview Hospital. That is a new idea to us, but he said he’s seen too many people wait too long. I didn’t ask for morbid details.
Terry’s diagnostic labs showed Trisomy 12, zero-then low Zap70, Mutated (thanks to Terry Hamblin) and extremely high CD38. He appears to have a mixed set of indicators.
Terry has treatment. He’s also avoided any infections since he was terminated in July 08. He’s just not exposed to sick people and wears good masks in airports, planes and in hospitals.
New infection:
This week he developed a tooth/gum infection under a gold crown on a back tooth that already had a root canal. He has bulky nodes as far down as the acilla. He asked his dentist for double the normal days of antibiotics because it usually takes two courses. He must really hurt because he’s taking Vicoden but he wouldn’t take pain meds even after hernia repair years ago.
His local oncologist began mentioning single agent treatment last year. His two immunoglobulins range from low normal to below. His oncologist does blood counts at 90 day intervals. We live near Seattle’s Hutch Institute where emphasis in on transplants.
The trends make me want an opinion about his charts from someone who sees more CLL. Terry’s oncologist is the head of a two-center cancer center in Seattle and Edmonds.
He won’t begin any treatment regime before a CLL Expert’s evaluation. It may that he can go back to see Dr. Byrd at Ohio State. That’s where 2 of our grown kids and 6 grandkids live. We stay with the couple with no children. in July 08. He can apply for early SS retirement on May 1. That all means we’re need something good financially to happen before he can travel to distant CLL expertise.
I appreciate any one who wants to shed clarity on Terry’s situation. The one thing that raises alarms is treatment. I will email his excel records if anyone wants a look. Maybe we’re overreacting. And maybe I am asking too much. If so please accept my apology!
Thanks,
Linda
Correction:\
Terry is so far untreated for CLL.
Linda
If I may be so bold as to ask a question of 11qRick: What would you advise patients to do regarding safety precautions when traveling, i.e. airports, airplanes, etc.? Even at a stage 0 – anything? What do you think Chaya? Just looking for a second opinion. Thanks, Nancy
Nancy:
Your first line of defense in avoiding infections is common sense. You know, the bit about avoiding sitting next to someone hacking away while waiting to board the plane? Or avoiding eating at fast food joints with less than clean tables?
Second in line is alcohol gel. I and PC carried little bottles of this stuff with us whenever we were out. It is mandatory to use the gel to clean your hands thoroughly after visiting the rest room, after you go up escalators with your hand on the handrail, after you touch anything that a thousand others touched before you did. PC also wore cheap and disposable cotton gloves when he traveled.
For patients who are clinically neutropenic and need a higher level of protection, I strongly urge getting some of the N95 masks and use them while you are in the airport and riding in the plane. These masks need to be fitted properly to the face to be effective. And they do not fit well if you sport a full beard!
By the way, Mayo gave PC an emergency shot of Neupogen when they discovered he was neutropenic and about to fly back home from Rochester MN. Plan ahead. If you are going to travel, get a blood test done and if the absolute neutrophil count is less than 1.0K, get your doctor to give a neupogen shot. It helps if you get the shot the day before you travel.
Thanks so much for your response Chaya. I actually carry the gel, but I don’t have my brain tuned in to the “CLL mind set” yet. It’s not programmed in because I look at myself and I don’t see a sick person. I see the test results with my name on them, and I have an oncologist now, but it’s still hard to actually get my head around this. But you can bet I will remember to use the gel now with this “bug” I have caught, and your education reminder. I have to say, though, this bug has opened my eyes because in my old life I never got sick. So, I guess it is starting to sink in now. My neutrophil count in Feb. when I was diagnosed was 1.67, almost out of range, so I’m guessing it was probably around the same when I flew on April 8. I did wear a N95 mask for two weeks while in California helping my mother move due to the huge amount of dust in her house (after choking from all the coughing at the end of the first two days). Maybe that exacerbated anything that may have been brewing. Well, again, thank you Chaya for everything. Nancy
Hi Chaya,
A big hello from Atlanta Ga. This is my first post. Thanks for all your fantastic information. I am newly diagnosed – Oct. 2008. I had a mammogram and they found “something suspicious”. It’s been a long scary journey since then. I too have a lower than normal temp. A couple of good prognostic indicators but I am stage IV. Four rounds of FCR under my belt now. Scans next week. My prayers are with you all.
Patti
Hi Pradickes (Patti),
Do you mind me asking who your oncologist is? I live in Acworth, Georgia, and am also newly diagnosed (Feb. 2009). Atlanta is only about a 35 min. drive from here. And, would you recommend your doctor?
Thanks,
Nancy
Excellent article. Thanks!
Thank you Chaya for this very informative post and for this amazing website. This is my first comment. I believe I will soon have to make a tough decision for the first time since my diagnosis. It is related to an enlarged spleen situation and the article (and comments) are very helpful. I would like to describe my situation and hopefully hear thoughts of readers with similar experience.
First some background. I’m 36 years old (that’s right, 36 not 63) male, diagnosed 6 months ago in August 2011, still untreated. All my blood counts were within normal range in the last check-up 2 months ago. My ALC fluctuates between 4K and 7K and WBC around 10K. I have however enlarged nodes in several areas. Those I can feel are about 1-2 cm. In a CT scan I had 6 months ago there were some very small (0.5-1 cm) abdominal nodes. I have `normal’ karyotype and “essentially negative” CD38. A bone marrow biopsy after the diagnosis showed 20% involvment of lymphoma. I don’t know the status of other prognostic indicators.
Now to the issue itself. In the last couple of weeks I’m having pains in the upper left part of my abdomen. The intensity of the pain varies, but the trend is that they get worse. It reduces my quality of life significantly, and limits my ability to work and take care of my kids.
I believe that the pains are the result of an enlarged spleen, though my family doctor could not feel it. In the CT scan I had 6 months ago the spleen was mildly enlarged, 14.5 cm long. But it was 6 months ago… And other nodes have grown larger since then.
Assuming that the spleen is indeed the problem, and the only problem, I wonder what should I do about it. I hoped to be able to hold on without chemo treatment long enough so that the new drugs (CAL, PCI, etc.) will be available to untreated young patients (in general I prefer to wait with the chemo until there is really no other option). Should I consider removing the spleen? What about the radiation option?
My next appointment with the hematologist is next week and I want to come prepared. I would really appreciate any thought about this.
Tamar2011, sorry to hear that one so young is fighting this disease. I am about to mark the second anniversary of my dx. I beleive your first instinct to wait as long as possible before treatment is correct and you are very recently dx. It is possible that your pain is non related, so please get a second opinion. Of course the maddening thing about this dx. is that no two patients are alike. I recently had a CT scan and it showed spleen at 235mm, which sounds much worse than 23.5 cm or 9.25 inches. However it is not causing me any discomfort. But again, if I have nothing reading this site and others, no two patients are alike.
Be well, and let us know what your hematologist says. Bye the way, my Dr. did not “feel” that my spleen was enlarged either, it was shown by CT scan.
Thanks JimBobHob for your comment. The pain got much better in the days after I posted my comment and it is essentially gone by now (perhaps this site has a magical power). Still I was sent by my doctor to a CT scan which I had last week. I wasn’t sure if I should do it or not but at the end decided to go.
The scan shows that My spleen got a bit larger (went up from 14.5 to 15.8 cm), but other than that everything looks stable. My CBC numbers are also still OK. So I stay on W&W for now, and very happy about that!
Dear Chayajee,
Namaste!
My name is Chandrashekhar and i am an Indian living in Sweden. Needless to say that you are doing a fantastic service to the peoples diagnosed with the CLL.
I am 62 now & was diagnosed with the Prolymphocytic Leukemia (B PLL) with 17p deletion for about 2 and a half years ago. During this period my blood values have varied from wbc 9 to 122 to the current 63. So far i have chosen not to have any traditional treatment, except i take Retacrit 30000 once a week for my Hb.Presently Hb is 129 and platelets 249. A recent CT showed that my spleen is enlarged to 21x11x8.
I would appreciate it very much about your valuable comments regardding the B PLL.Is it a different disease than the CLL?
I would also like to know your comments about the staging in my case! Does the staging mean values at the time of the first diagnos or it is decided in
Connection with the current blood values?
Kindly accept my best regards
May the Almighty bless you
Chandrashekhar
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