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Steph's SLL/CLL
Case History: 1999
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Steph's SLL/CLL
Case History: 1999
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April 1999 Steph notices slightly enlarged lymph nodes in both sides of her neck (symmetrical). The nodes have been around for a few weeks and are not getting smaller.August 1999 After coming back from our vacation Steph decides to peruse the enlarged Lymph nodes. Everyone who looked at the nodes felt it was probably caused by an allergy and was just the body working (we were told the symmetry of both sides of the neck being enlarged was normal for common lymph reactions).
Sept. 1999 Biopsy of left neck node performed in the afternoon at a Kaiser Permanente medical center. Steph was sore but felt good enough to get some Italian food after the procedure.
Oct. 1999 Results finally come in. We did not expect these results. The biopsy revealed malignant Small Cell Lymphocytic Lymphoma (SLL = in the bone marrow) with a possibility of Chronic Lymphocytic Leukemia (CLL = in the blood stream). A well known cancer specialist at Duke calls Steph's surgeon three times to verify that Steph is only 27 years old as this is very rare. ( *At this point Steph has SLL)
Oct. 1999 Decided to find a different Oncologist and Primary Care Physician (PCP) as it would take two weeks to get into to see the current HMO/PCP recommended Oncologist.
Nov. 1999 Met with new Oncologist. Blood work is actually pretty good (and has been). Bone Marrow Biopsy and CT scans are planned.
Nov. 2 1999 Bone Marrow extraction and aspiration performed. A local is given to the back lower hip region. Needle/aspiration insertions were not that bad. The core extraction was extremely painful. Steph's mother fainted (and she has nursing experience).
Nov. 6 1999 Saturday we went for the CT ("cat") scan. Checking in to outpatient took an hour as on weekends everyone checks at the Emergency Room. Steph drinks a liter of Barium and then has iodine dye injected in her veins. Only took 45 minutes after that and we were home.
Nov. 8 1999 Steph, a girlfriend, and Steph's mother drove to the Oncologist for the diagnosis. Stephanie was then diagnosed with Stage IV Small Cell Lymphocytic Lymphoma. In general terms this cancer is referred to as a Non-Hodgkin's Lymphoma and more specifically it's an indolent B-cell Lymphoma. Stage IV because she has the malignant cancer in her bone marrow and in around six locations in her lymph system (neck, armpits, and lower chest). This is another very upsetting day for us all (current survival rates are 5-7 years).
Nov. 9 1999 Steph is busy making appointments for a possible second opinion at Emory University as well as with two different nutritionist. The objective is flush the body of possible toxins and get the body on a very healthy diet. We want the second opinion at Emory to help us figure out which chemo treatment is best for Steph's first go. At the present time it looks like will either be Rituxan/Rituximab or a mix of Rituxan/Rituximab and perhaps cyclophosphamide, doxorubicin, vincristine, and prednisone (CHOP). Steph gets an evening appointment at the Atlanta Cleansing Clinic for some colon irrigation. Steph wishes she could find a female Oncologist. On a humorous note, someone recommended we send a saliva sample to this woman who could analyze it then tell us what is causing her cancer. The woman ( Marge) called back and said that we need to move our bed as it is in a bad electrical field (this field must be on a planetary level). We are making contact with reputable people who have Lymphoma treatment experience as well.
Nov. 10 1999 Steph gives 12 vials of blood for a third opinion at Kaiser Permanente. She also travels to tree different hospitals to collect her medical records (slides, scan, X-rays, and blood work).
Nov. 11 1999 Steph had an 8:00AM meeting for a second opinion at Emory University. In a nutshell the Oncologist at Emory felt that more test should be done on the bone marrow to find out how fast the cancer is spreading. He promised she would be sedated this time. He also felt that CHOP was way too strong at this point in the treatment (CHOP can apparently render the patient infertile also). As far as Rituxan goes the Oncologist felt it was mainly for treating Follicular Lymphoma and not SLL (Strange, we have seen numerous Rituxan based SLL trials/treatments on the web - Very interesting). Finally, the doctor felt that a bone marrow transplant is the only real way to "cure" the cancer. He thinks we should have Steph's sister Nikki's bone marrow typed. This is all a bit different from our first opinion last week. Steph will have a third opinion next week with a Oncologist that is said to be very thorough.
Nov. 12 1999 Steph has a 9:00 appointment with her Primary Care Physician to do more blood work and try to figure why she has had almost daily sneezing/allergies for over a year (is this related/unrelated who knows this used to only be seasonal). In typical fashion he prescribed Allegra and did not want to pursue any allergy testing (probably because she is seeing Oncologist etc.) The heating/cooling ducts and filters were a bit dusty and are being cleaned. We've been keeping everything cleaner than normal around the house. I've been reading that treatments based on Rituxan are for treatment of patients with relapsed or refractory low-grade or follicular, CD20+, B-cell non Hodgkin's lymphoma. At this point in the game Steph's Non Hodgkin's Lymphomas (NHL) is neither relapsed or refractory.
Nov. 14 1999 Back to Mary Dorsey at the Atlanta Cleansing Clinic in the Afternoon.
Nov. 15 1999 Today we found out that Bone Marrow Chromosome test samples had be done during the previous biopsy and the results have not returned (This is a big pain saver). This test will show how fast the cancer is moving. Steph is noticing her enlarged nodes in her armpits more (slight soreness). We will both be going to the chiropractor this evening.
Nov. 16 1999 Steph is traveling to the Emory Medical School library to do research on Chemo. Steph has a small (.5 cm) internal growth on her back (this is strange as there are no nodes or organs in this area). Also, Steph's nodes are sore again today. Tomorrow is a big day as we go to Oncologist #3. I feel treatment is not far away and it will most probably involve conventional chemo + a monoclonal antibody. The hopeful new NHL antibody treatments are Coulter Pharmaceutical's 131I radiolabeled antibody to CD-20: Bexxar, IDEC's Rituxan for treatment of patients with low-grade B-cell lymphoma and Techniclone's ONCOLYM®. But the only possible cure is still a bone marrow transplant. The Cure For Lymphoma Foundation has an exceptional web site.
Nov. 17 1999 We went for a third opinion and Oncologist today. The small internal objects on Steph's back are yet another set affected lymph nodes. We knew we were on the right track with this doctor when he walked in the door. He was caring, intelligent, honest, and gave us all the time we needed to discuss this whole situation. When it came time talk about treatment he was quick to bring up the Stanford Trials that prove that mortality rates in NHL (SLL/CLL) are not increased with treatment. The doctor told us the irony of the low-grade B-cell lymphoma is that it moves slower than higher grade Lymphomas but is not curable like the intermediate and high grade NHL's. He also explained that SLL and CLL are the same thing and that a cure does not really exist (even if a bone marrow transplant is a success). He suggests CVP as a first round of chemo but wants to wait until Steph has progressed a bit more. Although, he said she has a lot of cancer inside her currently and is borderline for treatment. This doctor may be open to utilizing an antibody + CVP (we will see). Steph really would like to avoid conventional chemo (i.e. CVP, CHOP) as they harm the body in many ways. Steph would really like to try Rituxan but it is not yet recommended as a first line cancer drug.
Nov. 19 1999 Steph would like to stay with non-toxic solutions such as Rituximab. Every Oncologist we talk to want to go with CVP or CHOP. Steph has noticed more nodal growth in her upper neck. We will write an E-mail to her current Oncologist this weekend to plea our case on not using conventional chemo as a first line regiment.
Nov. 22 1999 Steph goes back to work.
Nov. 23 1999 In the past four days we have made a huge amount contacts on the Internet. We made contact with a nationally known Lymphoma specialist (Dan Longo, MD of NIH) who wrote us a 3-page letter on treatment options for Small Cell Lymphocytic Lymphoma (SLL). He basically confirmed that Rituxan alone was not as effective as conventional chemo in Steph's case because SLL B-Cells express fewer molecules that are targeted by Rituxan (Although he did say Rituxan appears to help chemotherapy work better). He said the only cure is a stem cell transplantation and that may have a 60-70% chance of producing prolonged survival free of disease (This is a difficult choice because of toxicity's associated with transplantation that could even include death). As far as the future of SLL/CLL treatment he confirmed that there are many things in the works (possible vaccines, new antibodies, new cytokines) but they may not be out for 5 or more years. A statement of impact he made was that while it is possible that something wonderful will come along down the line, I think it is a mistake to put all your hopes on that and ignore what can be done now. This letter helped to provide some more clarity on this situation.
Steph has also met some very well informed SLL/CLL patients on various NHL message boards.Nov. 24- Dec. 1 1999 During the past week or so Steph has gotten on a full organic diet and is juicing at least one a day. We have also joined the Bally's Health Club and are hitting it hard. Steph is keeping an eye on here nodes as they are soar but not to painful. We are still waiting for the chromosome test on the bone marrow. Steph's sister still needs to get her bone marrow typed. We have read a very entertaining cancer cure book that blames parasites and wood alcohol for cancer/lymphoma/etc...
Dec. 6 1999 We will visit Oncologist #4 (female Oncologist #1) Tuesday. Steph wants to pursue R+CHOP for her first line chemo strike and the practice that we will be visiting uses Rituximab regularly. Steph has discontinued use of immune boosting herbs (such as Echinacea) as we believe we saw increased tumor growth (and soreness) during it's use.
Dec. 7 1999 Met with Oncologist #4 (female Oncologist #1). We waited over an hour to see her but it was totally worth the wait. Not only was this doctor intelligent and exhibited a caring nature but this Oncologist routinely works with Rituxan and has participated in trials of Bexxar. In addition she also provided a few other chemo options. She recommended Fludarbine+Rituxan as opposed the CHOP+R as a effective first line treatment due to it's lower toxicity. She also felt that Steph should have another CT scan in early January 2000 to establish a tumor growth baseline. Steph's blood work was just over the normal white cell count but other than that show nothing alarming. Steph is having some new soreness but it is probably due to her Bally's workouts. In general, we got a much better feeling about the future of SLL/CLL treatments from the new Doctor (Although an actual cure is not on the horizon). Steph would like to try a Hydrogen Peroxide ( H2O2) IV to try to get some tumor shrinkage. This procedure is offered locally and has been effective in many Lymphoma patients. We are also learning about such drugs as Naltrexone.
Dec. 9 1999 Steph has made an appointment with a local doctor that administers intravenous Hydrogen Peroxide ( H2O2) drips. Although there is a six week wait just for a consultation. The state of Georgia has approved this treatment regardless of the AMA's negative stance on this alternative treatment. Many NHL have seen a fast reduction in tumor size using this therapy. Steph may also pursue Coley's Toxin Therapy. (which is basically a formula that makes you very sick for a short time to put your body in the mood to kill bad cells)
Dec. 10 1999 Yesterday we got some not so good news and some promising news. Steph's SLL cells exhibit a high amount of the antigen marker CD38+ on the surface of the cells. According to a report this means that Steph stands a 79% of not responding well to conventional chemotherapy (meaning the bad B-cell's may not die as they are not highly mutated so they appear normal). The good news is that trial results were just released that show a combination of Bexxar (still not FDA approved) and Fludarabine yield a much higher (5x) response and remission rate.
Dec. 16 1999 Today Steph visited a Ph.D. in Holistic Nutrition who surprised us by restating (see Nov. 9 1999) that our house is over some kind of "bad electro-magnetic field" due to some kind of underground river (or something to that effect). He told her that moving the bed may not alleviate these bad lines of flux and sold her some kind of device for $30 that may help. This sound ridiculous to me but we do have a stream behind the house and I would not be surprised if we do have a water flow beneath the house as we live on a good sized hill/incline. This is all very strange to me. On the more conventional side, Steph feels very strong about radioimmunotherapy and wants to get in a trial in of a Yttrium Y 90-Labeled monoclonal antibody that targets CD22 antigen. Yttrium has a shorter half life than Bexxar's Iodine-131 which requires the patient not get too close to humans (or animals) for several weeks. Using radioactive elements appears to more effective at killing bad B-Cell's (over Rituxan's chemical based "warhead").
Dec. 17 1999 Bad news today, Nikki's (Steph's sister) HLA bone marrow typing (done via blood test) came back not matching Stephanie's bone marrow type. Steph's bone marrow type is: A3, A33, B27, B35.
Dec. 22 1999 We have gotten many request from folks regarding getting HLA blood tested for Steph's bone marrow type. Basically, it will not be until late January before we know her regular Blood type (believe it or not) which must be a match to even have a possibility of a bone marrow/stem cell match. Steph will have a CAT scan on January 4th which will determine our next step. Steph wants to start taking Naltrexone on a daily basis (it will be interesting to see if she can get a prescription).
Dec. 29 1999 Steph is picking up some Barium for another set of CAT scans next week. She is feeling fine but getting nervous/concerned about impending treatment (if only the NHL vaccines trials were open for her the treatment decision would be easy). If you would like to learn more about the NHL vaccines trials (and help by endorsing a letter to open these trials to more people) click here. This is very interesting stuff.
Go to 2000 Treatment Log * Back to Steph's Main Treatment Page