From Heather
Chronic Lymphocytic Leukemia or CLL is one of many different types of Leukemia. Who knew how many different types there are, unless like Peter and his family you have experienced it. I became a crash course student overnight. One of my methods of processing this diagnosis was to log on and start googling. After working at a veterinarians office for years I hesitate in writing that. I know it makes Dr’s cringe when patients arm themselves with too much Dr Google info and walk into an office with a self diagnosis. I’ve seen the frustration first hand. My research ( knowing all of the afore mentioned experience ) was more to familiarize myself with leukemia, or CLL. I wanted to be able to keep up with Peter’s Doctor. I wanted to acquaint myself with terms and testing, treatment options, and expectations. I wanted to ask pertinent questions. I learned that there are more branches of leukemia than I could even imagine. Acute and chronic, lymphocytes..of which there are B-cell, T-cell and NK, bone marrow, lymph nodes, spleen… White blood cells, Red blood cells, Platelets. What I found is an endless amount of facts, figures, and research that is happening. Some forms of leukemia are categorized as acute… quick onset ( in layman terms). In Peter’s case, chronic.. which basically means slowly growing. One day in the bone marrow cells were dividing and forming lymphocytes as usual, and one did something different… just like that. That one cell went on to divide again and again. What eventually happens is basically, the lymphocytes which are not mature ( in Peter’s particular case), outnumber the good ones. The lymphocytes are part of the white blood cell family (again keeping it simple here), they are what our body needs to fight infections, illnesses etc. Basically, Peter has a bunch of unruly under developed lymphocytes hanging around getting in the way of any good ones that are trying to work. CLL is also surprisingly a disease that is generally diagnosed in mostly men( woman can have it, we have a new friend that has it) in their early 70’s. So it’s pretty random that both Peter and his brother were diagnosed as relatively young men. So armed with my knowledge we walked in to Peter’s appointment with the Dr who we thought was a hematologist, but is actually an oncologist specializing in hematology. It’s getting real in here. That alone drove terror into our hearts. Sitting in the office was pure torture for Peter having experienced so much of it with his brother over the years, and we all had just lost Steve 3 months previously. I thought I’d be up to speed… not even close. More blood work, and a bone marrow test later ( which is very painful let alone without sedation), we had a chance to ask some questions. Peter expressed his feelings on chemo. The doctor explained that there are many new treatments available, most are a cocktail of several things ( including a lower dose of chemo). I don’t know about you, but is the word cocktail supposed to be comforting to the mind; I mean we are not talking a martini or gin and tonic here. Peter’s doctor staged him with stage 2 and told us that he could probably wait for treatment for awhile. Some patients can go untreated for a period of time until Dr’s deem it necessary, or the patients lifestyle is affected. We also became aware of some horrifying news, Peter’s blood work had been off in 2008, 2010, and 2012.. never caught by his primary doctor. It was actually the PA in the office that caught it this time, and again not the doctor… another story for another day. We asked Peter’s doctor about getting a second opinion. He agreed, and we waited to hear from OSU, the James cancer center 2 hours away in Columbus Ohio. Research, research, research!! NOTHING prepared us for that visit!!! Two weeks later we were seated in a room with Peter’s 2nd opinion Dr… and he rocked our world and opened our eyes. For those people who think there is a cure for cancer that just hasn’t been released because Drs are greedy.. I have news for you!!! We learned from this Dr that there a minimum of 12 different types of CLL!!! TWELVE!!!! That is only what has been discovered so far. Variations of DNA, proteins on the chromosome level!! Think about all the different types of cancer out there… consider all of this, and mutations they don’t understand… its endless!!! Millions of cells divide every day.. cancer cells too!!! There are markers that have been discovered, and markers that have not. This doctor is cutting edge, on the front line of new science. At this appointment we learned about mutated and un-mutated IGVH, IGG,IGA,IGM, and then of course CD38,TP53, BETA, CD19+/CD20+,CD23, CD5,Del13q,Del11q,Del17p, and of course the Zap-70 we were waiting on from hospital one… these number sequences are all proteins, or chromosomes or defects, that attach or change a cell. I have pages of numbered sequencing….. THAT is what researchers are up against… and patients with CLL. Every single one of these proteins or items is a mutation… Another thing we learned is that straight up chemo (which wipes out all kinds of cells) not only shortens a patient with CLL life, but as the cells grow back, it can cause even more mutations to the cells making it even that much more elusive to slow. All of these mutations add to the challenge of finding a cure .. or holding this disease at bay. There is no cure at this time. When we got Peters Cytogenic study back it was 22 pages long!!! We prayed so hard that he wouldn’t have any of the “bad” proteins…his options would have been very limited if he did… chemo cocktails… a determinedly shorter life. At this point we were praying for any victory… and thank God we got it… NONE of the really bad proteins!!!! VICTORY!!!! Awesome news!!!! His lymphocytes are un-mutated (juvenile).. so it’s an aggressive type of CLL. BUT..every victory counts!!! There was some tough news that day too. Peter was staged at Stage 4 (not the 2 we had been told previously), he now has 3 extra chromosomes, 73% of his lymphocytes are malignant ( he has 27% of his immune system), his platelets are way off the scale low, and 80% of his bone marrow is affected…. that kind of sucked the air out of the room… BUT.. BUT… He may qualify for a clinical trial that has ZERO chemo in it that they are having really good results with!!!!! We are going to hold onto that!!! We are going to focus all our hope & prayers on his being accepted into that!!!

Just some other stuff we have learned along the way… This is not considered a disease that is “genetic”.. it’s rare for siblings to both have it… HOWEVER, it is now recommended that first degree relatives be tested. More research is needed. It could have been something Peter & Steve were both exposed to as kids, or during work and their particular cells happened to be predisposed to getting it. There have been large spikes in cases of CLL in rescue workers and survivors of ground zero and surrounding areas. There are higher than normal numbers of people near Camp Lejeune military base. Perhaps its a chemical exposure… they don’t know. Peter’s doctors eyes lit up when Peter told him he grew up on a farm in Vermont. Perhaps there is so much more to the exposure to things in life… but every body is different.. which is why some people are affected and others are not. There is so much information my head just spins… but I remain thirsty to learn every single thing I can. This became much longer than I thought it would!! I just want to share just a bit of what I’ve learned, and what anyone going through something like this is facing. Arm yourselves with knowledge and stay on your toes!!! You have to stay on your toes!!! I will finish with this…
Peter had ZERO symptoms the day he walked into his doctor appointment… NONE!!!! He went in for a “hey I turned 51” and I should probably get a checkup. His doctor has told him his cholesterol has been a bit high since 2008… so HE decided to have blood work. Sure he gets run down tired from time to time… but hey… none of us are spring chicks anymore and he works hard!! Take care of yourselves, even if you feel fine… go take yourself in for a checkup every so often… DON’T put it off!! YOU are important!!!
So now we wait and pray for approval into this clinical trial…. we celebrate each day as a victory!