Steph's SLL/CLL Case History: 2001
Small Cell Lymphocytic Lymphoma / Chronic Lymphocytic  Leukemia




January 24th, 2001 Steph was excited about the possibility of getting in a local trial of BetaLT but found out that the arm of the trial held in Atlanta is  only for Myeloma. The closest B-Cell Lymphoma portion is in Maryland. Beta LT has shown mixed results in reducing tumor load. We keep our eyes on the vaccine trials hoping for a breakthrough (like the one made with AML lat last year). She will soon be seeing a Lymphoma specialist in Atlanta who was recommend by Dan Longo from NIH in Washington D.C. Other than her lymph nodes are small although she has noticed a new node under one of her arms.

February 24th, 2001 Steph will be visiting Dr. Steis Monday. Once again he was recommended by Dan Longo of NIH in DC. Steph is feeling quite well although the opportunity to see a Lymphoma specialist is rare and are she is using it. In other SLL related research Steph found a young man (mid 30's) who had SLL/CLL. At first it was in the nodes (like Steph) he then did chemo (CHOP I think). The Cancer almost immediately transformed to the blood. But this story has a happy ending. He then underwent an autogolous BMT and has been disease free for several years (after a four month recovery). This kind of situation is why Steph  has not jumped into Chemo just because it's an option (even though a few Doctors have suggested it). This is also why we suggest getting a second, third, fourth, fifth etc.. opinions from Onco's.

February 26th, 2001 Steph had an appointment with Dr. Ronald Steis.  Dr. Steis feels that treatment at Steph's point in time is an option but so is "watch and wait". He also said he feels OK about Steph not having any more CT scans for a while, as long as she has liver test or renal sonograms to catch any problems caused by internal node growth.  The doctor feels good about three upcoming treatments: (1) Mini-Transplants, which he claims have never caused a fatality, (2) Vaccines, which are show a good success rate but will take decades to test long term effectiveness, and (3) Bexxar, which is getting very close to FDA approval. Dr. Steis also mentioned a protocol called FCR (Fludarabin-Cyclophosphamide-Rituxan) which has actually reversed PCR to normal in some lymphoma patients (which could potentially be a cure for some lucky people).

March 30th, 2001 Steph went to Dr. Miller (her Onco) today and got the following not so good news: She has become anemic (very low iron in her blood). All here blood work was low and the doctor may pursue Porcrit injections to boost the her red blood cell count. Dr. Miller feels this is because her bone marrow is filling up with cancerous cells. On top of that Steph has what appears to be a chest cold. The doctor fears Steph will catch pneumonia and has prescribed an antibiotic to prevent this. Steph will be scheduling CT scans to see if internal nodal growth has occurred. Steph believes the low iron (and lower body weight) is due to her not eating well. It is now time to get back on the health kick Steph originally was on.

April 16th 2001 Steph had a follow-up appointment regarding last weeks CT scan and her low blood levels. The CT scans showed that none of her nodes have grown (and in fact some may be smaller). The blood work seems to confirm doctor Miller's suspicion that Steph's bone marrow is filling up with cancerous B-Cells (SLL). Her red blood count was down a tad even from March 30th's reading (this is called "Significant Anemia").  Steph has decided to take a round of Prednisone pills to see if she can "clean up" her bone marrow and get her blood level back in normal ranges. Here is a good page that deals with Stage IV SLL treatment. (Also Joey Ramone died of Lymphoma yesterday at the age of 49)

April 17th 2001 The more extensive blood work done by Dr. Miller's assistant also showed that Steph's diet was fine which seems to confirm strong marrow involvement. Steph is feeling a bit tired.

April 20th 2001 The formal results came back from Steph's latest CT scan. Amazingly it appears that just about all her internal nodes in her stomach have shrunk (and this is a year after her first round of Prednisone). Steph has begun the down-cycle of this short round of prednisone that will hope fully kill some SLL cells in her bone marrow and get her blood results back in normal ranges. She is fell a bit more energetic so we hope this steroid is working. Other than that Steph has decided as painful as it is a Bone Marrow extract is in her near future.

April 26th 2001 Steph has broken out in full body rash. So far there is no extreme pain involved like the last rash in March of 2000. 

May 4th 2001 Steph's rash has cleared up and things seems to be normal. Dermatologist results from the skin sample was "hives".

May 5th 2001 (On a personal note: My college friend in Virginia Chris Jones died today at 10pm of Brain Cancer)

May 7th 2001 Steph had a visit with Dr. Miller today. Blood levels were down but still in the low normal level. White cells were up in the normal zone. Steph strained her back pretty bad this weekend and is moving slow (this is not really lymphoma related). Here are the supplements that Steph is currently taking: Bifibophilus Flora, Natural Beta Carotene, Calcium, Vitamin E, Grape Seed Extract, Garlic, Lysine,  Milk Thistle, Omega 3 Flax Oil, Natures Sunshine Blood Cleaner, and a Natural Multi-vitamin. She has numerous other products but these are the everyday staples. At this point Steph feels that treatment is very near. She would like to do Bexxar (still not fully FDA approved) as it had the best chance at killing all her bad B-cells. We looking for open trials to facilitate this. As far as alternative treatments goes Steph may try the Bare-Rife generator (check out turfs page - he has several devices).

May 21st 2001 Steph will undergo a bone marrow biopsy tomorrow. Also, today Steph's grandfather was formally diagnosed with Multiple Myeloma.

May 22nd 2001 Steph was well numbed this time around (still painful). A different extraction tool was used which had a smaller entry point into the hip.

May 29th 2001 The final results from the bone marrow biopsy were not in when Steph went for her appointment today. Although the preliminary results show missing or low components in the marrow. 

June 5th 2001 The bone marrow results arrived today: Flow Cytometry result yielded much the same characteristics of Steph's first bone marrow biopsy except that her SLL bone marrow involvement has risen from 51% to 85%. Chromosome analysis show that four of eighteen metaphases are clonally abnormal with deletion of a portion of the long arm chromosome 11 (we have read that this is a bad prognostic factor but have not found out why). Steph's SLL exhibits the following antigen: CD5+, CD45+, CD19+, CD20, CD22, CD38, CD25, CD2, CD3, CD4, CD5, CD7, CD8, CD10, CD11b, CD13, CD14, CD15, CD16, CD34, CD36, CD56, CD103, CD117, FMC7, HLA-DR, lambda and kappa immunoglobulin light chain restriction. Chemo drug resistance tests (DiSC) showed that Steph's cancer is not very resistant to Cyclophosphamide, Vincristine and Cytarabine (all test done in vitro, for what that's worth). There more data but I think the covers the major points.

June 12th 2001 Dr. Miller agreed with Steph's desire to do a heavy round prednisone (1 month starting at 60mg rising to 20mg) before getting some kind of chemo/treatment. Steph got the prescription and around two hours after taking the first 20mg pill broke out in a full body rash similar to last months.  Steph may decide to live with the rash to hopefully kill some cancer cells in her marrow and buy here some time before chemo.

June 18th 2001 Steph will continue with the prednisone and try to deal with the rash and itching.

June 19th 2001 Steph visited a bone marrow transplant specialist at Northside Hospital in Atlanta. Steph learned the following interesting things: Bexxar would probably not be good for her as the radiation stays in the marrow for a long time and could damage her bones (typically doctors want no more than 25% marrow involvement for Bexxar, Steph has 85%). The doctor seemed to favor the mini-transplant (aka autogalous - using your own stem cells) as he seen 17% complete remission rates with SLL (with a lower mortality rate 8% over the full blown transplant with a 35% mortality rate). We are now weighing her options and hoping the prednisone can buy her some time

July 9th 2001 Steph had a blood work appointment with Dr. Miller. Most levels are getting better all around (thanks to the prednisone). The Dr. thinks that this may get Steph through until December before some kind of chemo. Steph now starts the declining 20Mg. dosages of prednisone. Dr. Miller thinks that Steph should do CHOP+Rituxan as she is aware of a younger patient who recently died (fungal infection) after the FCR protocol .

July 23rd 2001 Steph has finished her one month round of Prednisone. Here nodes still appear to be very small to non-existent. But she has mentioned that upon lowering the dosage of Prednisone her slight bone pain has returned (Steph has had slight ongoing bone pain for a few months). The next step is to decide what chemo protocol to choose.

July 30th 2001 Some good news for a change. The prednisone must of had some good effects as Steph's blood work was much better. Red and white blood cells are both in the normal range. Hopefully, they will stay up for a while. Steph feels good and so do I.

August 20th 2001 Today Steph had her blood work done (almost 1 month after the Prednisone). Platelet and Hemoglobin counts have fallen drastically, Steph is anemic once again (apparently predisone's ability to kill the CLL cells in the marrow is not as effective as with the lymph nodes). Dr. Miller is putting her on more Prednisone immediately and it is felt that chemo will begin in October. On the positive side Dr. Miller's practice has had some instruction from MD Anderson on the  FCR protocol. I the meantime Steph try to get as healthy as possible.

August 28th 2001  Today Steph's blood work had hemoglobin and platelet levels up but still below normal. The prednisone is having a cytoxic effect on cancer cells (but not enough to drive the cancer cells away for a prolonged time period).

September 9th 2001  Steph is on a month long sabbatical that will take her from Atlanta to Washington D.C. and to Portland, Oregon. She had her blood work done before she left which showed continued low levels for Red Blood Count (RBC), platelets, hemoglobin and other levels. Chemo will begin soon after Steph returns from her trip.

September 28th 2001  Steph has been back from here trip for a few days and has a bad cold and soar throat. She is trying to kick the cold and get healthy before chemo (date of first round still unknown)

October 6th 2001  Steph had an appointment with Dr. Miller Friday which still showed low but slightly better hemoglobin and palette levels in the blood. Steph is still not over her cold which she has had for over a week now (which I have miraculously not caught). Dr. Miller and Steph have decided to postpone chemo for at least 3 weeks so Steph can go into the 6 month regiment as healthy as possible. Steph goes back to work this week after a month long sabbatical.

October 26th 2001  Steph had blood work done today that showed low levels all around. This means chemo is very near (if Dr. Miller was in the office today Steph feels she would of scheduled the first round of FCR). The low blood levels are due to the fact that the bad SLL cancer cells have almost fully infiltrated the bone marrow. The bone marrow is where the various blood cells are created. Steph has noticed more bone pain lately and is a bit tired. The biggest fear at this point is the body's ability to fight such things as colds one chemo begin.

November 5th 2001  Steph feels she is ready to begin chemo. She is easily fatigued and her bone pain is becoming a bit more prevalent and longer in duration. She has still not heard from Dr. Miller but Steph would like to begin as soon as possible. More as it develops..

November 6th 2001  Plans are now in place. Thursday Steph goes to meet the doctor who will be installing an intravenous port in a main vein in Steph's collar bone area (Chemo will go on for 6 months and Steph has already lost one vein during all the blood test). Friday the Doctor will install the port. Monday begins the first round of Rituxan (one part of FCR protocol - CHECK OUT THIS LINK FOR GOOD INFO ON FCR). The first dose of Rituxan usually gives the patient flu-like symptoms.

November 9th 2001  Steph had a BardPort Implanted Port installed today in her left shoulder area. The outpatient surgery went well taking only about 45 minutes (of course all the waiting room prep and post-op took around four hours). This port will make the next six months of chemo a bit less painful as no veins have to be tapped.

November 12th 2001 The first round of Rituxan went well as did the fludarabine and cyclophosphamide. Steph did not even get sick (infusion took around 6 hours). The Hemoglobin in Steph's blood is very low so Steph is easily tired.

November 13th 2001 Today followed another round of fludarabine and cyclophosphamide which went well. Steph was also give a shot of the red blood booster Procritt.

November 14th 2001 In the morning Steph woke up with a 100.2 degree temperature and sore joints. This is no doubt the chemo working. Another round of chemo later in the day.

November 15th 2001 Steph woke up today with a 101.4 temperature. The immune system is said to be more active when the body is sleeping so we feel that the high temperature is the body fighting the dying cancer cells. Steph is also weak and nauseous. Also, the chemo nurse told Steph her chemo regiment would be once every four weeks for four months instead of the MD Anderson regiment of once a month for six months. 

November 16th 2001 Today Steph's fever broke but her stomach and fatigue seem to be a bit worse. Steph describes it as Food Poisoning, Alcohol Poisoning and the flu without the vomiting. She was to sick to go to her check-up with Dr. Miller. Steph's mother Cheryl is leaving today after caring for Steph through this first round of chemo. (Thanks for everything Cheryl!)

November 17th 2001 Steph has been admitted to the hospital. There is a problem with her blood volume. This is a special kind of anemia where blood cells are dying for some reason and cannot keep enough blood flowing when she exerts herself. Hopefully a blood transfusion will help "jump-start" her system.

November 18th 2001 Steph will remain in the hospital for a few days. Basically, her white blood cells are almost non-existent and red blood cells and platelets are very low. Dr. Osman (an associate of Dr. Miller's) is giving her the blood stimulant Luekine and some more Procritt. He would prefer to let her body try to produce new blood cells rather than give her a transfusion. Yesterdays initial diagnosis of  Hemolytic Anemia is being discounted for now (as this is hopefully just the effects of the chemo and not another blood disease). Steph has also had several antibiotic drips as her body is trying to fight off various bacteria.

November 19th 2001 This morning Steph had a blood transfusion and more antibiotics. She was weak, tired and has a bit of a temperature but her spirits are good. Her morning blood work showed critically low levels of WBC, Hemocrit and Platletes. By mid-afternoon/evening Steph was feeling better. We expect WBC to climb tomorrow. It seems that Steph develops a fever in the early evening most nights.

November 20th 2001 Steph's WBC are up from .6 to .8 (still critically low). Dr. Miller said Steph can go home when they reach 1.5 and she Steph goes 24 hours without a fever. Dr. Miller also said she will lower the dose of Steph's chemo in future regimes.

November 21th 2001 Steph's WBC are at 1.0 from .8. Dr. Miller say she cannot go home today but perhaps tomorrow. Another concern is low blood neutrophils (a blood component that is critical to fighting disease and infection). Check out this cool short video of a neutrophil hunting down a Staphylococcus infection.

November 22th 2001 Dr. Miller let Steph come home! WBC are still at 1.0 (on the high end of the critical level) but Steph appears to have plenty of energy and does not have a fever. She will be making daily trips to the hospital for various shots.

November 24th 2001 Steph seems to be doing well. We go to the hospital for daily a Luekine shot. Monday she will have a CBC done to see if her blood levels have risen to safer levels.

November 26th 2001 Dr. Miller decided to wait until tomorrow for a CBC and just gave Steph another Luekine shot. Apparently the Luekine is given in a 10 day regiment (tomorrow is roughly the last day of the regiment). Steph feels better but is still not a full 100% of normal (or 90%).

November 27th 2001 Today's CBC test did not yield the good results we were hoping for. Steph's WBC was down to 0.6 from last Thursaday's 1.0 reading. Steph will continue with the daily Luekine shots and take it easy. (Ironically her Platletes are one of the few components in normal ranges)

November 29th 2001 Steph went in for yet another Luekine shot today but is still feeling weak. The Luekine does not appear to be working. The next step will probably be to try Neupogen. Tomorrow Steph has another CBC test.

December 2nd 2001 Steph's last CBC was actually better. Her WBC has risen to 1.6 (still in the critical range but climbing). She is now giving herself daily Luekine shots at home.  Steph is scheduled for another round of chemo on Dec. 10th (we are unsure if it will happen as scheduled).

December 3rd 2001 Steph's WBC are up today at 2.6 (still low but getting better). Dr. Miller says Chemo will go as scheduled next Monday. Steph is now giving herself Neupogen shots which are a bit painful.

December 8th 2001 Friday Steph had a appointment with Dr. Miller. WBC are on the high end of normal (So all Neupogen shots are over for now). Other blood levels are near normal. The next round of chemo will goes as planned Monday. Also, Dr. Miller wants to have a CT scan done on Steph after this second round of chemo (this is usually done after the 4th round). A CT scan can gauge how effective the chemo has been (we believe it has been very effective).

December 10th 2001 Monday's round of FCR went smoothly (but took 9 hours).

December 13th 2001 Tuesday and Wednesdays rounds of FCR went well. Steph's stomach is aching and she is fairly tired. Unlike the previous round of chemo Steph's nuetrophils counts are normal. Although all her other counts (RBC, WBC, Hemoglobins, Plateletes) are low (but not as low as they were last time she started chemo). Her infusion port on her left shoulder is also sore today. She begins Neupogen shot today.

December 14th 2001 Steph went through the morning (3AM - 9AM) with strong nausea, stomach pain and vomiting. A dose of the anti-nausea drug Compazine-7 finally took effect in the afternoon and let Steph get some rest. In the evening she developed an appetite and is souping it up.  As a precaution she was prescribed a powerful anti-nausea suppository.

December 17th 2001 Steph's over the vomiting but is still dealing with an upset stomach (chemo side-effect no doubt). Doctor's appointment tomorrow.

December 18th 2001 Steph had a CBC today. WBC are down again to 1.2 (3.3 is low normal). RBC is also low at 2.9 (3.69 is low normal). Hemoglobins are also low at 10 (11.7 is low normal). This basically means Steph will not be going back to work until these levels rise to normal. She will start more Neupogen shots at home.

December 24th 2001 Overall Steph is doing well. Her stomach is still a bit irregular and she get tired easily (but she is not weak).

December 31st 2001 Steph's CBC bloodwork had all blood level normal (except RBC's which are just slightly low). Steph will begin her third round of chemo this coming Wednesday. Although this could change as she has a sore throat.

  Back to Steph's Current 2002 Treatment Page