Had my first visit today at MD Anderson. I really like my CLL specialist. She said the same thing as my local oncologist, that it’s surprising that they even caught it this early. But that’s a good thing so that we can continue to watch for any progression. But, she feels like I’ll have a while before needing any treatment. They sent me to the lab and got my blood. I’m actually waiting here now. They said if the blood looks like it did last month, then they will send me upstairs to do a bone marrow sample. Then I will leave and not come back until my next appointment on 10/3/16.
Living with CLL 8/19/16
- I forgot to mention that in my meeting with my oncologist Tuesday that the CT scan she had me do the Friday before came back showing no lymph node swelling. That’s good. But it did show something on my liver. Great! So I was scheduled for an ultrasound on Friday, today. I was pretty nervous since my luck with doctors hasn’t been so good lately. Well, this afternoon I heard from my onc’s nurse. The spot on my liver turned out not to be cancer abd was what she described as a hemangioma. But it also showed sludge in my gallbladder. I looked into this and figure I can help this by changing some of my diet habits which I’ve been doing anyway. So now I’ll be leaving to Houston Sunday for my appointment at MD Anderson. I hope all goes well.
Living with CLL 8/16/16
So I met with my local Oncologist today. Going to MD Anderson next Monday. She says that my CLL is very early. I don’t know how to read these reports and I’m sure I will get more specifics from MD Anderson next week. But I’ll put down what is on these reports.
FISH:
-revealed a deletion of both chromosome 13q homologues in 5.5% and a deletion of 13q in 65% of nuclei.
-Probe:
Centromere 12 (Detects a trisomy 12) = Not Detected
-Probe:
13q14 (DLEU1) (Detects a deletion of 13q) = Detected
-Probe:
ATM/11q (Detects deletion of ATM gene) = Not Detected
-Probe:
TP53/17p13 (Detects deletion of TP53 gene) = Not Detected
-Probe:
CCND1/IGH-t(11;14) (Detects CCND1/IGH translocation = Not Detected
FLOW/CYTOMETRY
-Myeloid Blasts: <0.1%, Not increased
-Abnormal B-cells: 35%
-Remaining Lymphocytes: 31%
*B-cells: <1%, polytypic
*T-cells: no abberrant antigenic expression
*CD4:CD8: 1.0
*CD4+/CD57+ T-cells: 2%, slight increase
*CD8+/CD57+ T-cells: 5.7%, slight increase
*NK-cells: 1%
-Neutrophilic Cells: 29%, no significant abnormalities of markers tested
-Monocytic Cells: 3%, no significant abnormalities of markers tested
-Eosinophils: 1%, no relative increase
-Basophils: 0.2%, no relative increase
Guess that’s all I have for now. Sure I will have more info after next Monday.
Living with CLL 8/10/16
On Monday 8/8 I went to my GP and told him about my diagnosis so that we had a plan going forward if I get sick and need antibiotics etc. I said that was smart. I also mentioned the abdomen tightness and groin discomfort that I assumed were lymph nodes. He checked and did feel just one node on one side of groin area but no others. He said that even that one wasn’t too big. He agreed that I should have a cat scan before my Tuesday 8/16 appt with my oncologist. He said they would contact their office. On that sane Monday evening my oncologist called late around 6pm. I was surprised to here from her as I assumed I would just talk to her on the 16th. She said that she wanted to wait to call until she had all results back from the flow/cytometry and fish tests. She basically said that the only marker I had was 13q and that was a good sign to have. Also that I was muted I think. I didn’t ask too much since I knew I would see her in person on Tuesday. I did tell her about my visit to the GP and she said she definitely wanted that cat scan before Tuesday so when I come she will have all blood and scan tests and we could discuss markers and plans moving forward. I mentioned that I had reached out to MD Anderson to find a specialist to look at everything. Pretty much every thing I’ve read from people with CLL said to get a specialist as well. She agreed 100%, will be glad to work with them and even offered a referral. Actually I’ve talked to me Anderson twice and they are in the process of verifying the info from my local oncologist and insurance and set me an appointment. I’ve definitely decided to go there instead of uab. In my opinion Md Anderson offers much more in way of new trials and CLL expertise. I’m hoping that if the plan is to visit a doctor every 3 months that maybe I’ll be able to alternate, seeing each doctor every 6 months. As of wednesday 8/10, I still have some tightness in abdomen. It’s not too bad and doesn’t hurt. I still feel a little here and there in groin area. I think my scan should be Thursday, fri or Monday. I would be feeling great about everything if it wasn’t for the possible swollen lymph nodes. I think without that happening I would have good chance to be stage 0.
Anyway, I’ve been eating pretty good. Nothing crazy, just not anything too bad. I’ve continued exercising and have even increased cardio the last few days. It makes me feel better. So as long as diet is fairly good and I’m exercising my body will be in best shape possible to fight this when the day comes for therapy, stem cell, etc. Also, I pray everyday. My faith will be a big part in my journey with this cancer.
Until next time
Living with CLL 8/6/16
I mentioned that I had reached out to a CLL specialist in Birmingham to see after I meet with my local Onc. I’m still planning on going to a specialist and my Onc agrees and will work with someone as well. Only thing different is now I’m considering MD Anderson in Houston. All the CLL message boards and Forums tend to agree that they are some of the best. It’s only a 7 hour drive or an hour flight from here to Houston. I’m waiting until after I meet with my local oncologist Tuesday 8/16 to discuss my flow cytometry and fish test results.
The only thing that is truly concerning now is that starting yesterday 8/5 I began having some tightness in my abdomen area and groin area. It wasn’t pain but just tightness feeling. I exercised and ate like usual. But right away I was pretty sure those were lymph nodes. So, even after I was told that this CLL and we are discussing lab results soon, I’ve become pretty confident that I can make the best of this. I mean, I had no symptoms, I’m only 44 and I’m good health, and with all the new treatments, drugs and therapies and with more promising things to combat or even cure CLL on the horizon, I feel like I will live for a while. But as soon as I started feeling this tightness and assumed it is lymph nodes, I really kind of got down. My whole CLL life going forward plan was based on me not having symptoms, hopefully having decent markers, and getting on with my life. Heck, I would probably even be healthier since I know I’ve got to eat better, exercise even more, cut back alcohol which I barely drink now anyway, etc. So for me this is a kind of set back early on.
So now I plan on seeing my regular doctor Monday to check to see what he thinks about my lymph nodes. If he feels they are swollen, I may ask him to consult with my oncologist in the hope that they may go ahead and schedule a CT Scan next week, which is something I think they may be planning on doing anyway, so that when we meet the following Tuesday we can look at everything, the flow/cytometry, FISH, and CT Scan.
So that’s it for now
Living with CLL: 8-4-16
So I have reached out to a CLL specialist that a couple hours away. They will get me in next month. They want my Flow abd Fish tests once I get them back. I talked to the nurse for my Oncologist here. Since my oncologist is out today she had another Oncologist look over results. They did confirm CLL. They said it is early stage and that I’m not in danger right now. She mentioned possibly a cat scan or something. I told her I’m more interested in the markers that are so important to progression etc. she said my oncologist would be calling me first of next week to discuss. She said they are glad to work with other doctors like the one I reached out to that specializes in CLL.
Other than that I’m continuing to exercise, eating a little better, drinking carrot juice a couple times a day, abd I’m considering EGCG green tea supplements. I’m willing to try anything now. But supplements do worry me. I’ll continue research though.
Living with CLL: 7-24-16
So as you may have seen from my last post, I haven’t gotten the call yet from my oncologist with the results from the lab tests. She mentioned it would take a week or so. It’s been 8 working days so I’m assuming that I’ll hear from her next week.
I guess based on the fact that she said it was about 90% chance that I do have CLL and the fact that I’m not having any symptoms and feel good, my best hope for the call will be that I have CLL but markers were great, I’m stage zero, and we go from there. Obviously a miracle saying I don’t have any cancer would be the best call, but that’s highly unlikely according to her. So any info about my condition that is not one of those results will be worse. But I’ll deal with it and move on. My main reason for posting today is that I was thinking about that call and what I will say when is confirmed that I indeed have CLL or something even worse. But I’m focusing on CLL since that is what she is certain it is. So what really came to my mind are questions I will want to ask.
I didn’t ask too many questions in our first meeting since nothing has been definitely 100% diagnosed yet. But since leaving I have many. Also, how do I ask that many on the phone? Obviously an oncologist is very busy and can’t spend 20 minutes answering my question right? I thought maybe o would ask for an office appointment to strictly discuss and ask questions. Or maybe email her all my questions directly so she could answer them that way. Anyway, I’ll figure that out. But below, I have listed several of the questions I have. And I’m sure there are many more I haven’t even thought of. I’m sure some of these are ridiculous but that’s what I’m thinking or have come up with from online research etc. so here are some:
* How do you manage so many cancer pts? I worry that CLL pt may get pushed to the side because of the wait and watch approach.
Did I have a FISH test? If not why?
-what is my RAI grade? Need 0 correct?
-did we get a IgVH mutation analysis? Need it to be muted correct?
– I read in a study that CLL < 55 with stage 0 diagnosis & muted IvGH or stage 0 with 13q- or normal FISH both had comparable survival rates of comparable sex-matched general population. Is that correct?
-In researching I found that “Good Markers” are considered: muted IgVH gene, Zap-70/negative, CD38-negative, and 13q deletion. Does that sound right?
-And I found that “Bad Markers” are considered: Trisomy 12, 11q deletion, 17p deletion. Is that right?
What are your thoughts on Venetoclax, approved 4/16, for pts with 17p deletion and failure on other therapy?
Since you feel that there is a 90% chance that I have CLL based on blood work, what would you give percentage wise given new drugs, drugs in the pipeline etc. for me surviving 10 yrs? 20 yrs?
You mentioned that if I do have CLL and symptoms start arising down the road that there is a pill I could take to manage CLL and that it’s almost like managing diabetes or something similar. What does that pill do if I eventually need to get on it? What’s it called?
Why can’t one start therapy even in early stages?
Could lymphocytes differential improve on its own? I believe they were at 60%+ lymphocytes and I think you said they should be n the 30% range.
Do I actually call and tell your nurse everytime I get a cold or sore throat?
How long do you think I may have had this condition? I’m only 44, this is real early for CLL. Does being younger and in better overall health help me fight this in your opinion?
Can I qualify for promising trials down the road? Should I enroll in trials?
You said it’s like managing diabetes these days. is it possible to out live this (die of something else)?
Is it possible for lymphocytes to stay at same level for many years? Or will that 60% going to keep rising, fluctuate, lower while in the wait and watch period?
I’m only 44. CLL usually diagnosed in older pts. Is it a very bad thing having it this young?
How does Obinutuzumab work? It looks like a newer therapy for first time patients? What’s the newest most promising drug?
Is it a concern that my wbc count increased in a month between the two blood samples? Is this progressing fast in me?
Should I never have an alcoholic drink?
Depending upon the every 3 month results of tests, is it possible to estimate how aggressive the disease will be in the future?
I read that because people who are under the age of 50 are less than 10% of people who have CLL that they are considered “bad risk” and therefore benefit more from treatment vs. “watch and wait”, is their any proof to that?
Are their promising even better drugs in the pipeline? Based on what’s in pipeline and the newer better drugs already out is it possible for me to live 20-25 years?
In your opinion are CLL survival rates skewed due to median diagnosis age being 71 and many die of natural causes?
Anyway, these are just some of the questions I have or will have. That’s really all I have for now. Like I said, I just write when I’m thinking of something.
Until next time.
Living with CLL: 7-22-16
My initial visit to the oncologist was last Tuesday. That’s when she said in her opinion I had about a 90% chance that I have CLL. Of course I have no real symptoms and basically my differentials in wbc was 60+% to 30+% in the wrong direction even though my total wbc was just a little high. I believe her because she’s the expert. But she made it seem like I can manage this like diabetes! I guess that’s just the way they have to treat you until they get the official lab results back to where my blood was sent. Anyways, she mentioned that it would take about a week and she would call. So it’s late Thursday night and nothing. Guess my next post will report the official results and I’ll start dealing with that then.
Living with CLL: 7-16-16
Ok so hear we go. I’m just your average 44 year old guy who is married, has one child, is a small business owner, a Christian, and pretty much lives a routine life. I’m starting this blog to chronicle my journey with what looks like Chronic Lymphocytic Leukemia (CLL). Trust me, I’ll explain the “what looks like” statement in a minute. I’m not necessarily doing this to provide info for those in need, or to be some kind of expert, but just as a way for me to put down in writing the thoughts and fears of an average person dealing with CLL. I don’t have any pre conceived notions or hopes that anyone will ever find and read this blog, but if they do it would be great. I guess maybe I’m putting this out there for me but also in the hopes of finding people like me that are going through the same thing as me and have some of the same questions as I do. So, if someone stumbles across this blog and they are living with CLL or have a loved one that is dealing with CLL and this helps them connect to me or others that may be in the same situation, then that would be great! Anyway, my plan is to blog here about my journey, good and bad, every so often which may be once a week or once a month, I just don’t know. I will just write when I feel like there is something about me or CLL that I’m am thinking about or questioning. So if you find this blog and want to share with me, I’m more than happy to communicate and discuss our situations as a group of individually.
So let me get to the part where I mentioned above that I would explain later. See, I’m starting my blog journey very early. I haven’t even been “officialy” diagnosed yet!! So here’s the short story. It started with getting the flu in mid May 2016 which turned into ultimately a case of grade 5 esophagitis. I had been in some pain after the flu and got confirmation that I had esophagitis by doing a scope with my GI Doctor. Prior to the GI scope they took my blood as for protocol. After starting the round of medication prescribed after my GI Doctor visit and scope, I started to feel better within a week. I was like, finally after 3 weeks I’m getting better, WooWhoo! Then several days later I get a call from the nurse of my GI Doctor. She asked if I would go to the lab and give another blood sample so that the doctor could check out a few things. I thought nothing of the request and a couple days later I went and gave more blood. Forward to the following week and I finally really feel like I’m getting back to my old self. During the weeks I was sick my wife and I had a planned trip to Vegas. She had never been so needless to say we were very excited. But due to everything I moved the trip back about a month. So as I mentioned, I’m really feeling a ton better and am very excited I made the decision to put the trip off a few weeks. Now I’m telling myself that I’m about to get myself extremely healthy because with the recent flu and subsequent esophagitis, which kept me sick for about three weeks, it really made me not want to feel that way again. I felt like the sickness controlled my life for a few weeks and I wanted to do something about it. Keep in mind that I already “kinda” keep in shape and try to go to the gym two or three times a week, do some cardio weekly, and play some tennis. So I consider myself to be doing better than a lot of guys my age but I definitely know I could do more. At this point I’m totally dedicated to really hitting the gym 3-4 times a week, eating much better and all that good stuff. I told a friend that as soon as our Vegas trip was over that I wanted to join him to do some of his crossfit classes. Needless to say, I was feeling motivated! I even remember telling my wife that I wanted to be as fit as possible when I’m 49 or 50 years old so when our only child graduates high school in 5 years. If I could really get myself in great shape that would translate to the stamina and ability to travel, take advantage of life, and really enjoy the last half of my life as a healthy fit person. It all sounded great!
So we get to Las Vegas on a Sunday evening and proceed to have a great time seeing Vegas that night. The very next morning (June 20th) at about 6am (8am our time back home) I get a phone call. We are dead asleep so I obviously don’t answer. When I finally get up I listen to my voicemail and I have a message from my GI Doctor. He says for me to call him when I get a chance and that he will be sending me an email as well. My first thought is “doctors never call unless something is bad”!! I call and like I had figured, I wasn’t able to get a hold of the Doctor. So I proceed to open my email and see a message for me through their patient portal. Without going into much detail he explains that I have what looks like some abnormalities with my blood and that since its out of his expertise he would like to refer me to a hematologist. He then said that even though hematologist are also oncologist in most cases, that he didn’t want me to think he was sending me to a “cancer” Doctor. Lol!! Anyway, after that we exchanged about 3 emails with me asking questions about blood, cancer, etc. Again, I’ll spare the details, but based on some of the vague info in his email responses and my subsequent online research, I was pretty sure I was headed toward CLL.
Forward to a couple weeks later and my initial referral visit with my “cancer Doctor” the Oncologist on July 12th which was 3 days ago. Based on the results of their on-site blood test she said that I had about a 90% chance that the lab test will come back in about a week confirming CLL. She said it’s positive that I have no symptoms or swollen lymph nodes. So now they are sending out my blood to a lab to do a more extensive test called the flow cytometry/immunophenotyping blood test. So in about one week I’ll know where I really stand even though I already know it’s going to be CLL. My real interest and concern in the test results are the important markers that will give me and the doctor a much better picture of my individual CLL prognosis. I’ve researched all about the markers, the approaches like wait and watch, the new drugs, etc., and I’ve already been silently scared. Now I’m focusing on “what’s my plan to live” as soon as I get the diagnosis. I really just want to be here for my wife and child. I’m not so scared for myself. I’ll pray about it but I know there are many more people in this world with bigger problems and tragedies that are more devastating to them than this would ever be to me. So I’m not going to sit here and feel pity for myself. I’m going to stay positive, try to get better, pray, hope for new research and medicine, and live life the best I can for as long as I can.
Through the this blog I’ll give details of blood tests, things I’m doing personally, therapies that doctors have me on, trials I may be involved in, how I’m feeling both physically and emotionally and anything else I feel like writing down. This is basically my public journal of “me and CLL”.
Me and CLL 