Steph's SLL/CLL Case History: 2000 Small Cell Lymphocytic Lymphoma / Chronic Lymphocytic  Leukemia

 

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Jan. 3 2000 Today we went for a consultation at the Milton Fried Medical Clinic in Atlanta.  This is the clinic that will provide Hydrogen Peroxide and High Dose Vitamin intravenous drips to Steph.  Dr. Fried is a very interesting man, he tells several stories of his successes and asks many questions as to Steph's health and medical history. Steph's first H₂O₂ infusion is this Thursday (around a $100 a sitting).  It will be interesting to see if the H₂O₂ has any effect on Steph's node size (as we have heard good things about Hydrogen Peroxide reducing CLL tumors). This is a very busy week for Steph as she has a CT Scan Tomorrow and a review with her Oncologist on Friday.

Jan. 4 2000 Steph has a CT scan this afternoon.

Jan. 6 2000 This morning Steph has her first Hydrogen Peroxide IV at the Milton Fried Medical Clinic. She also got enough vitamin B-12 and syringes to last a good month or so. Steph plans on doing around 20 Hydrogen Peroxide IV drips over the next two months.  On the first IV she felt a strange feeling in 2 of her largest nodes (this may be good).

Jan. 7 2000 This afternoon we went to the Northwest Oncology Group for Steph's review of her last CT scan.  This CT scan was performed on a brand new machine using a spiral capturing method (this gave clearer results).  In general the tumors have not grown much and it appears that that 6 cm mass in Steph's stomach is actually a cluster of small 2 cm masses (this makes us feel good as it may indicate the cancer is growing slowly).  Steph's doctor feels that Bexxar will be approved by the FDA in March. A combination therapy of Bexxar and Fludarabine has been very successful in trials (giving remissions well over a year to many patients).  Steph's blood work looked pretty normal and we forgot to have her blood typed (the power went out in the office!).

Jan. 14 2000 Today Steph has her third Hydrogen Peroxide IV drip.   Steph's nodes in her neck and underarms have been both soar and puffy since starting the Hydrogen Peroxide, we hope this is a good sign.

Jan. 18 2000 Steph's nodes on her neck have grown a bit.

Jan. 19 2000 - Feb. 1 2000 During the past 2 weeks Stephs nodes have normalized in some areas and she has developed a few new smaller nodes in other parts of the neck. Steph has discontinued Hydrogen Peroxide IV drips (she thinks she has damaged a vein).

Feb. 2 2000 Today was a very busy day:

• Dan Longo from NIH gives Steph contacts who are doing upcoming vaccine trials for SLL. Steph learns that a vaccine trial will occur in San Diego in 2000 and should have criteria for admittance decided on by April.
• Steph also called about a Canadian vaccine trial in Vancouver, BC.
• Today's Oncologist visit yield information about a upcoming in-practice trial of Bexxar in the near future.
• We also learned that Steph has at least a 61% of CD20 Antigen expression on her cancerous cells (this is good news as we thought she only had 10%. Bexxar needs a fair amount of CD20 to stick to.
• Dr. Miller feels that we will need to get some of Steph's tumor bulk down before any kind of trial or other treatment (She did notice some small growth overall).  So she prescribed Steph a weeks regiment of the steroid prednisone to break down the tumors (Prednisone is the P in CHOP). Steph has decide to put off taking them for a while.
• We found out that Steph's blood type is A Positive.
• Steph had blood taken so a virus exposure profile can be performed.  We are willing to bet Steph had Epstien-Barr Virus (EBV is theorized to be what can trigger different lymphoma's).
• Steph will also have another lymph node removed on the near future for Chemo sensitivity testing and further analysis.
• Dr. Miller will also report Steph's bone marrow type requirement to a Bone Marrow Bank. (Just for future backup)

Feb. 3 2000 We got a call back from Vancouver explaining the their vaccine trial was only for Follicular NHL (typical as CLL/SLL is not as popular as Follicular).

Feb. 15 2000 Steph is defiant on staying on Watch & Wait until she can get into some kind of non-toxic treatment (preferably a vaccine trial). She has several new nodes on her neck and back but feels her larger nodes have not grown. She is scheduled for another CAT scan in March. Steph will also not "debulk" using the  Prednisone until she feels she needs to.

Mar. 1 2000 Steph has developed a very itchy rash all over her body. She managed to have a skin biopsy at a dermatologist in the morning and will visit her Oncologist this afternoon.

Mar. 2 2000 Steph is at home in bed trying not to itch. She has been prescribed Zyrtec liquid and Triamcidnolone creme. Both have only proven to provide temporary relief.  Her legs are itching the most. The overall rash does not seem to be as red as it was earlier in the week.  When Steph visited Dr. Miller (her Oncologist) the doctor noticed that Steph's nodes were larger and insisted that Steph start taking the 5 day cycle of the steroid prednisone.  The prednisone is also what the dermatologist would prescribe for the rash.
Dr. Miller got the test results that indicated that Steph has been exposed to the Epstien-Barr Virus but it is not active.  Dr. Miller also received info that there are three people that have Steph's exact bone marrow type. More as it develops...

Mar. 3-4 2000 Steph has been in bed for four days. She describes the itching as being 10 times worse than poison ivy (something we both have experience with) and becomes very painful at times. The only drug that is even minimally effective is the Prednisone (dosage has been increased to 20 mg a day).  The last I talked to Steph the pain was most intense in her feet described as a needle like feeling.

Mar. 6 2000 Steph is feeling much better. The itching is present but not nearly as widespread and painful as the past week.  I think she may even go to work today.  We are still waiting for the full report on her skin biopsy although we believe the whole outbreak may of had something to do with Green Tea Extract that Steph began taking two days before the rash appeared.

Mar. 7 2000 Steph was scheduled for a CAT scan today but decided to cancel as she was still itching a bit. Also, because her nodes have shrunk so much due to the Prednisone (which she still has 10 days left). Steph also has a fear that iodine could have something to do with her rash. The night before the rash began we had a shrimp feast. This week just as the itching was going away we had more shrimp and her itching got a bit worse. She will leave no stone unturned in trying to figure this thing out. The skin biopsy results only said her skin was irritated and she does not have MS or Lupus.

Mar. 8, 2000 Steph goes to another "Alternative Clinic" for her first round of Chelation Therapy.  This involves an injection of a chemical that is said to draw heavy metals (i.e. Mercury) out of the body through urine. Steph is saving all her urine for toxin analysis. The itching is present and still widespread but itching is nearing a tolerable level.

Mar. 9, 2000 In the morning Steph  was dizzy and her nodes were sore (This went away by noon).  Steph will bring her 24-hours of chelated urine to the clinic for analysis. Steph resumed working out at Bally's today.

Mar. 13, 2000 Steph will go back to work today as the itching has reached a normal level as the rash slowly dissipates.  Steph is having trouble with HR at her company as the skin biopsy did NOT find the cause of the rash (i.e. if a test cannot find anything wrong
with you must be fine).

Mar. 22, 2000 Steph ended her Prednisone regiment Monday.  She feels OK overall but has some residual rash and light occasional itching.  She has begun a new series of colon cleansing treatments and wants to have all her Mercury tooth fillings removed.

Apr. 4, 2000 Steph's rash is still visually present but the itching in minimal.  Her nodes are still there but smaller in size. We hope this will buy her a few months so we can get her in a vaccine trial she feels good about.

Apr. 12, 2000 Steph's rash has cleared up greatly. Her nodes are coming back but are still not as bulky as they were before the Prednisone. Here is a good list of current promising protocols for NHL (very interesting).

May 17, 2000 Steph and I visit Dr. Thomas Shea, a Lymphoma expert at UNC Chapel Hill Cancer Center.  In general he feels that "Watch & Wait" is the best policy in Steph's SLL/CLL case.  Until Steph's nodes cause some kind of problem or a potential non-toxic cure is found she will continue with no Chemotherapy.  Dr. Shea also said that the lymphoma vaccines are in too early a stage of testing to really tell if they can deliver a prolong immune response in patients with lymphoma.  Even though Dr. Shea works at a bone marrow transplant center he considered a BMT a last resort.

June 16, 2000 Steph visit's Dr. Miller (Her primary Oncologist) for a check-up.  Steph's platelet levels have been following a slow trend towards low levels (currently in the 100's).  Platelets are responsible for clotting of the blood. Steph's nodes have not grown dramatically but do cause Steph soreness when she is under stress. Low platelet levels are common in blood cancer patients. One SLL/CLL patient we know has used Traditional Chinese Medicine (TCM) to bring his platelet level up, we will find out more.

July 3^rd 2000 Steph will begin having nine old tooth fillings (containing Mercury) replaced with modern composite filling material.  It is very interesting that once you have been diagnosed as having cancer dentist do a $300 test that yields which composite material is best for  your body chemistry.

July 18, 2000 Steph had another CBC blood test that gave normal results of 220 for platelets. The platelet level from the previous CBC was 60 (an extremely low level). We are unsure of the previous blood tests accuracy at this point. Steph has had two more Mercury fillings replaced with composite.

August 3^rd, 2000 Steph had the last of her Mercury-based fillings removed today. Here cheeks are puffed up like a bullfrog.
 

October 1st, 2000 Steph has what appears to be a bad cold that started out 2 weeks ago as a sore throat. She has been to the doctor for a throat culture but we do not yet have any results.

October 11th, 2000 Steph still has a cold but the sore throat left last week (apparently nothing out of the ordinary). She has been receiving (and generating) a good deal of mail from other NHL'ers which makes her feel good. It has been two months since Steph had all her Mercury fillings removed with ceramic ones and we have just learned an interesting fact. The new ceramic fillings may only last a year before needed repair (Wow! - more as we know more).

October 29th, 2000 Last night we attended at talk by Dr. Deepak Chopra sponsored by the Atlanta Wellness Community (if your unfamiliar with Deepak Chopra or the Wellness Community please click the hyperlinks).  Dr. Chopra M.D. is a doctor of internal medicine who has incredible insight as to what the human body is capable of (i.e. the human body has the facilities to generate drugs for healing in perfect doses if tuned properly). Deepak spoke for about an hour to a cozy group of 900 in an airplane hanger in Atlanta.

December 6th, 2000 Today Steph had an appointment with Dr. Miller (2 hour wait). Steph's nodes are growing slightly at a very slow rate. Other than that things seem fine and Steph feels good.

December 23rd, 2000 Steph feels fine and is getting ready for Xmas. She hopes everyone has a enjoyable relaxing holiday. She is heading for D.C.

   Go to 2001 Treatment Log  *  Back to Steph's Main Treatment Page