I'm new to discussion boards and not sure how to put myself out here. I did try to respond to a discussion but maybe I need to start a new one?. I am a 44 year old wife and mother of two. I had a routine physical with bloodwork in June 2011...all normal results. I also had a tetanus shot. My arm was a little more sore than usual after a tetanus shot. But after a few days the pain went away. A week and half later, I found a painless,movable lump on my upper arm near my armpit, but more on my bicep. Went to the doc and he said wait two weeks to see if it goes away, it didn't so he recommended having it removed. Waited a month for a consult and another month for removal, I was into September. I just had a local surgeon do it because we all thought it would be nothing. Biopsy results came back as a lymph node suspicious for lymphoma and were sent on to Pittsburgh for consult. Those results came back as chronic lymphocytic lymphoma which translates to SLL/CLL. I picked a hematology oncologist at Hillman Cancer Center in Pittsburgh for my care. Had Bmbx, a full CT series and blood work in October 2011. My CT scan showed no enlarged nodes, blood work was normal, and I have a 5% marrow involvement. I felt like I was dropped into the middle of the ocean with no idea which direction I should swim. I am a 44 year old wife and mother of 2. When I met doctor a week after my testing he said I may never need treatment. I follow up with him on Jan 23, 2012 and that I need another CT series at 6 months, which will be March 2012. At my first visit with doc in October 2011, the scope of what it could have been was so large that I couldn't even go in there with good solid questions. Since then, I have been working at getting a list of questions together for my Jan 23 appointment. I have been able to answer some questions on my own as I poke around and do some research but I need more. As near as I can tell at this point I am ZAP70 negative and CD38 negative (CD38 cutoff point seems to vary based on what I read) which seem to be good things. According to research I see that says ..24 year median survival and that seems great but when I add 24 to my age, 44...it doesn't seem so long. Anyone out there in a similar situation?
Thank you for sharing your first hand experience. I know I will be comparing notes like so many other
SLL/CLL followers of this forum as well as the Living with CLL forum.
I feel you already have a great health team and good testing has been done to give a good picture of
future options ahead.
keep posting and sharing your questions. I know so many other are very interested in the same issues.
Thanks for your info and wishes of good luck. I wish the best for you as well!!
I do feel fine. I have been hypothyroid for about 8 years now and have never had any problems. I don't know if that is related in some way to the lymphoma or not.
I'm afraid to have blood work and further CT scans done...is that normal? I feel like I'm a reasonable intelligent person but I cannot seem to put the irrational thoughts and fears out of my head sometimes. I don't think about it all the time, but since I have an appointment coming up I'm thinking about it more. How did you learn to roll with it?
Time is the answer....
I think everyone goes thru there own steps to find some peace with the DX..
It is normal not to feel emotions and loss of control over your health.
There sharing first hand experience lights the path for all of us. So we can move forward
with a feeling of empowerment knowing there are options.
Keep posting questions, sharing first hand experience and comparing notes. Helps.
Time.. I think is the key... I guessing.... this is why we all call "Patients"
Hi Deb! I'm actually well north in a town called Franklin. I grew up just south of Butler. My doctor is at Hillman Cancer Center and so far I am happy with him. Where are you being treated? I have debated a second opinion but don't feel a strong urge to do it as yet, though most advice on these boards is to get one. So far all my bloodwork has been completely normal. The disease was found in a lymph node biopsy (only one node and it was actually more out on my bicep than in my armpit - very strange). I did have a bmbx and it shows 5% involvement. Doc said stage 1 if you look at only the one lymph node being affected, stage 4 if you look at bone marrow being affected. It seems to me that the I-4 staging criteria seems a bit to rigid for this particular illness and doesn't seem to relay much information regarding prognosis anyway. He insists that I may never need to be treated for this. Of course, I pray that he is correct. I don't know my trisomy status. I did get copies of all of my test results, but I haven't made sense all of them just yet. I know I am ZAP70 and CD38 negative which seem to be good prognostic indicators. It appears those results came from my bone marrow biopsy.
I'm curious about the meetings...did you glean anything from the meeting you attended? It would be nice to meet you sometime. Its so great to know that you aren't in this alone. People are so kind and helpful on these boards.
I too am a little on the young side when you consider the median age for CLL diagnosis- I am 39 and the mother of 3 from Ohio. I was diagnosed with CLL in August of 2011 while I was in the hospital being treated for a staph infection that invaded a lymph node in my jaw. I was on antibiotics for a few days when the node got so big and painful that I just couldn't deal with it anymore, That led to an ER visit, which led to a CAT scan, lab work and a 5 day hospital stay. Came to find out that the rash that I had on my forearm was actually shingles and that, combined with the staph infection and a severely elevated white count made docs suspicious. They admitted me for what was supposed to be an overnight stay- became 5 days- and on my 39th birthday they brought the hematology staff into my room to "interview" me and complete some extensive lab work. I was discharged several days later still not knowing what they were looking for- just knowing that they were concerned and my nurses were questioning my discharge. I also have Crohn's disease and called my doc at Cleveland Clinic to see if they would review my labs for me. I wanted to make sure that I was not suffering from any type of Crohn's related symptoms. The doc there called me and let me know that they needed my new insurance information so that I could see an oncologist up there... this was the first time that I was ever made aware that a hematologist is almost always an oncologist as well. Nice, huh?!
I saw the docs at the Clinic and they confirmed the diagnosis of CLL. After the onco-chip was completed, I was told that I have no deletions or additions in my CD profile. I am CD 38 negative, but Zap-70 positive.Like you, my CAT scans are normal, and my blood results are said to be "consistent" although my lymphocyte numbers are 3.5 times the high end if the normal range.... I have no idea what to think about any of this. It is very difficult to know that I have cancer, but I am being asked to carry on with my life as if everything was normal- no treatment plan, no medications... nothing?? It almost seems surreal at times. To people who know that I am sick, I look ok, seem ok and because of that they seem confused as how to treat me. I teach 7th grade and the best advice that the docs gave was to try and avoid stress, and sickness as best as I can... seriously??? I work in a petri dish full of germs, hormones and STRESS!!
I wondered how you and your family are handling this new news?
Thanks for taking the time to read this, and I hope to hear from you soon!
I'm sorry to hear you are in the same boat but we will all figure out how to navigate together, okay? Your birthday?! How coincidental! I actually found out my removed lymph node was "suspicious" on my birthday (Sept 19). I remember looking directly at the surgeon and telling him he wasn't allowed to tell me that on my birthday. That big man just sank in his chair, scanned my chart to see my birthdate and said he was sorry. So...where to start?? I don't know much about Crohns. Could your lymphocyte count be due to that? I can tell that that will be the frustrating thing here as we go...knowing what's a flare up of CLL and what's something else.
I am trying to come to grips with watch and wait. I just had my first followup appt on Monday and my blood work is just fine and I have no enlarged palpable nodes. I will have a CT series again in April and then blood work and hematology appt in July. He said I will be done with scans unless there would be an issue and that I will followup with him every 6 months. I suppose I will have to get used to the anxiety of waiting for those blood test results. How is your followup going to be managed? Did they do your diagnosis from blood work alone or did you have the node biopsied?
Its so hard to know that you have cancer. It's hard to see your name on a piece of paper and then a description like, 44 year old female with leukemia. It's hard to fill out a questionnaire at a doctors office and have to check cancer in your medical history. I remember putting groceries away with my husband one Saturday morning between my bone marrow biopsy and other tests and the first appointment with the hematologist. I just broke down and said that there were so many things I was afraid to say and he just held me and said "then don't say them right now". My husband is very positive all the time and seems to have a skill at not worrying until he has to worry. Sometimes it frustrates me so because I am just not wired that way so I'm trying to learn from him. As for my children, my son is 16 (almost 17) and my daughter 15. Since I look and feel fine, they just keep swirling in their own world without worry and that's okay with me. As for me I pray, am committed to staying healthy and active and I'm trying to learn as much as I can about the illness. I am a full believer that you have to proactive and well involved in your own health care. I recently read a Mayo Clinic study about possible benefits of green tea extract in CLL patients. I asked my doc about it Monday and he said it can't hurt. I also mentioned vitamin D and he said I should be taking it. So that is what I am doing now. I'm taking green tea extract and vitamin D daily. Living in northwestern PA, I'm vitamin D deficient anyway!
I haven't found an equilibrium with this diagnosis yet but I believe that in time I will and that you will too! You will be in my prayers. I'm happy to share anytime.
Don't take any supplementation of anything until you have blood tests performed to see what your current levels of Vit B12 and VitD3 currently are. Also have you liver and kidney functions tested. There are no studies that suggest that commercially available epigallocatechin gallate (EGCG) in any form has any benefit in CLL. Depending on how you make green tea if likely doesn't have much benefit either since EGCG is very heat sensitive. The often touted Mayo study used a very high dosage of pharmaceutical grade EGCG called Polyphenon-E.
There is no indication that any commercially available EGCG even comes close. Organic green tea from Japan is regulated for purity and would be the best choice, however it is very expensive.
Also be aware: " Currently there are no published epidemiologic studies on the toxicity of green tea supplements. But laboratory research with both rodents and dogs has shown that high doses of the most heavily studied green tea polyphenol, (-)-epigallocatechin-3-gallate (EGCG), cause liver, kidney, and gastrointestinal toxicities."
" Commercial preparations such as the bottled green teas found in the United States and green tea–flavored gum, bread, candy, ice cream, and desserts found in Asia have very low levels of polyphenols."
Don't assume anything and get a hematologist that treats a number of CLL patients.
Thanks for responding.
I go to Hillman Cancer Center in Pittsburgh to a well respected hematologist who treats many CLL patients. I am Vitamin D deficient per blood tests. All other blood work is normal and I will be having blood work every 3-6 months. So if anything turns up awry in kidney or liver tests, I will find out about it. Again, thank you for your concern.
I've been doing some reading here, but I'm a newbie at posting. I was diagnosed with SLL/CLL almost 2 years ago (as I was turning 49) after noticing prolonged enlarged lymph nodes on my neck. A bone marrow biopsy generated my diagnosis, rather than a node biopsy.
I also live in Pittsburgh, South Hills. I've been on watch and wait, getting my blood work checked every 3-6 months. So far, so good. I have Trisomy 12 which means that my SLL may progress a bit faster than without the trisomy. I have an iron deficiency and take supplements which helps with fatigue. The doctor says my iron deficiency is unrelated, but I'm not sure I believe it. Overall, I feel fine! I should be taking Vitamin D, but I seem to forget. I'm not sure I have a deficiency.
I have an 8-year old daughter and for her sake, I choose to think of myself as "living with SLL" instead of "dying from SLL". I have friends and acquaintances with far worse types of cancer. So I consider myself lucky in that way.
Joy, I see you talking about a CD profile and Zap something and I have no idea what that's all about. Am I missing some sort of testing? Are any of you doing anything special about diet?
I wish you all well!
It is called Zap70. The test has been found to have some problems in the clinical setting, so it may not be done. Usually a patient has ether CLL or SLL. The term CLL/SLL is used until the cancer is better defined... If your nodes are enlarged and your lymphocyte count is within normal range then it is probably SLL.
Have your serum B12 tested... it can be the cause of anemia and fatigue. Also get your Vit3 tested. My anemia was thought for years to be CLL related.. it wasn't. I had no B12 uptake from food. I now get a B12 shot every 2 months and the difference is remarkable... I guess it is easy to assume everything is CLL related.. sometimes, it isn't. ~chris CLL CANADA http://cllcanada.ca
Thank you, Chris!
Funny that you mention B12 since my GP gave me the B12 shot just 2-3 weeks ago and I noticed a difference in my energy level right away. My original bone marrow biopsy showed NO iron stores in that particular sample. I couldn't even go up 2 flights of stairs without feeling dizzy. Thanks for your suggestion about the Vit3.
My oncologist says I have SLL for sure. He thought it was CLL until the bone marrow biopsy. He says they simply classify CLL/SLL together even when they know which one it is. (I call it "the 2 for 1 deal.") My lymphocyte % bounces between (52-60%), kind of the high side of normal, yet the Lymphocyte # runs 5-7 (with normal being 1.2 - 3.4. The nodes on my neck are always present but small, the size of baby peas or smaller. I occasionally notice nodes under my arm pit, but not often. The doc assures me that I am still Stage 1 and that the answers are in the blood work. That confuses me. According to what I read here and on the web, I might be a stage 2 or 3. My family wants me to get a second opinion, which I have not done yet. Where to go? Sloan? MDA or Mayo?
Thanks for your response, Chris. Suddenly I don't feel so alone in all this.
It is important to understand that CLL and SLL can be staged differently. CLL uses the Rai or Binet staging and SLL is sometimes staged in a system called Ann Arbor more like NHL. They are quite different. More here on Ann Arbor staging from Stanford medical school http://surgpathcriteria.stanford.edu/bcell/sllcll/grading.html Second opinions are excellent idea...but you may want to wait a few years until your SLL is more clearly defined.
Both CLL and SLL are sub classified by the WHO as a Non-Hodgkin's Lymphoma and while they are quite different in the way they develop, the treatment is exactly the same.
CLL CANADA at http://cllcanada.ca
So if my bone marrow is affected, albeit less than 5%, then I'm stage IV? Or am I stage IE. This is where I get confused. And again, does it even matter what the staging is? I'm Zap70 and Cd38 negative which means good prognosis right? And if I'm stage IV that would mean not so good ??
You should ask your doctor to clarify this. Think of it as a train journey with a number of stops. The prognostic values roughly tell you how long the trip will be, very very generally. Staging tells you at what station you are currently at along that train journey. Everyone with CLL or SLL is different, so your journey will be different than my journey or anyone else's journey... HTH
I just through some older posts from around August 2011...so is it true that Zap70 is now NOT considered a good prognosticator? Harumph! Sometimes I get so frustrated. As soon as I find something to be hopeful about, I read something else that pulls the rug right out from under me.
Zap70 done at large American cancer research hospitals or major city hospitals will probably be FINE. Commercial labs have problems with the test... however and handling of samples can give false results. Zap70 and CD38 generally give your IGHV mutation status, but sometimes they don't agree. (discordant) More on Zap70 http://mutated-unmuated.blogspot.com/2010/08/zap-70-changes.html http://mutated-unmuated.blogspot.com/2007/04/zap-70-again.html
It is a complex experience and you will in time learn what is important and what you can let pass... The absolute keystone test is IGHV, but it isn't done much outside of clinical trials because few labs can do it and it is quite expensive. Some people want to know if they are mutated or unmutated...
"Frankly ... I don't give a damn!"
~chris CLL CANADA http://cllcanada.ca
CLL LIVE 2012 Patient Conference website: http://www.cllpag.ca/Conference2012/
Again, thanks so much. I thought from what I read that the mutational status was originally thought to correlate with the CD38 status but then they realized that the CD38 status can change and that they found the ZAP70 to be the one that correlates with the mutational status and that they don't feel that changes over time. Perhaps tomorrow I will read an article that states something different.
Both CD38 and ZAP70 can change but Zap70 is more stable, although the test is flakey...but if you are CD38 negative which indicated you are IGHV mutated this is unlikely to ever go positive but it can happen in rare cases...It depends how close you are to the 30% cut-off point. CD38 still is one of the best markers in CLL...for most patients but not all. Good paper: http://ad-teaching.informatik.uni-freiburg.de/zbmed/InformaHealthcare/production/lal/2008/49/11/10428190802360810/10428190802360810.pdf
Both are good.. the cut-off (negative/positive) is 20% for Zap70 and usually 30% of CD38. There is a very high chance that your IgHV gene is mutated...a single prognostic indication of indolent CLL. Here is the original paper by Dr. Hamblin on this subject from 2002 http://bloodjournal.hematologylibrary.org/content/99/3/1023.full.pdf
Hi there, Chris & company -
I've been away from the forums for a while, pretending nothing is wrong with me. I like to think of my SLL as something I won't have to deal with for a while. Worked for a while. But now I'm getting concerned and I don't see my oncologist for another month. My nodes are all over my neck (both sides), armpits (both sides) and left groin area. I had bloodwork done at my PCP while I was getting tested for B12 deficiency. No deficiency, but my CBC has changed significantly with many things way out of normal ranges. My platelets are at 137 (was at 225 two years ago) and WBC is at 15.6. My monocyte # is at 3.2 compared to 7.6 two years ago and lymphocyte# is at 5.0 which seems to bounce around. I'm not bothered by the higher WBC or lymphocytes since I'm fighting a nasty head cold. But could a cold virus affect platelets, monocytes & granulocytes? I kinda doubt it.
Also wondering about stress. I have a high-stress part-time job that requires my attention at all hours. Could constant stress cause my condition to deteriorate? I'm thinking about quitting, but then I have financial stress. Uggh!
And lastly, has anyone done the acid/alkaline balanced diet I've read about? I just gave up white flour, wheat, and my sweets (as I should have done 2 years ago). Wondering if there is truly a benefit to cutting out sugar beyond natural sugars found in fruits, etc.
Hope you are all doing well!
Thank you for sharing your experience..
Your issues are very common with most that post on this forum.
You touch on a few important points that I have had to deal with also..
Stress, in many area of my life.. and even sinus ,flu, or colds.. I feel can
cause my immune system to work harder and my nodes seem to puff up
easier now. My WBC counts do not get to high.. some what like your counts
I can range from 14.5 to 33.0 with the WBC... and my neck nodes tell me
first.. something is not right.
SLL and CLL are tricky.. and we all are special... we have to find what works
for each of us..
I do agree with you.. balanced diet, is a big part..Low or no sugar, I feel is good,
and stress needs to be control some how.
I feel some excerise of some type helps me.. with stress..
I think you are on the right path.. you seem empowered to find what works for you.
Oh.. sleep is a big help..
Keep us updated with your experience... I know I will be comparing notes and
many others will be as well. good luck