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Patients Against Lymphoma


Patient Experiences & Guidance

Our story: 

low dose chemo,  then high dose-chemo with stem cell Collection, then Bexxar


I'm not sure that Joanne would be with us, or doing so well without the addition of radioimmunotherapy (RIT) to her last treatment.  Her follicular lymphoma was grade 1 when accessed by biopsy in 1996 ... but it proved to be fast-growing (aggressive) clinically.

She had CHOP in 1997 a year after her diagnosis (Rituxan was not yet used with CHOP).  She had a rapid response to CHOP chemotherapy that was called a Complete Response (CR) based on CT imaging and a gallium scan, which is similar to PET. 

Unfortunately the response lasted only 6 months, perhaps because she had very bulky disease at the start of treatment?  We were discouraged.

Rituxan did not help as a single agent even when give as an extended dose.  Rituxan given with low dose chemo did not seem to improve on the response - compared to chemotherapy alone.  Following the relapse she had about six years of various treatments (including trials). The FL remained sensitive to low dose chemo that we fell back on after each trial.

The time interval between treatments were getting shorter; the tumors were apparent and growing before her hair grew back.  Some experts were recommending an allogeneic transplant. Joanne decided to try a sequential approach: to first reduce the tumor bulk with low dose chemo, to add high dose Cytoxan with stem cell capture (in case the stem cells were needed later), and to follow these treatment with RIT (consolidation).

The low dose oral chemo (PEP-C) was given for about a month, the high dose Cytoxan (with harvesting of stem cells) was harsh but not long-lasting, the stem cell collection went well. A rest period followed for about a month, followed by Bexxar (RIT) consolidation.  

It's important to remind readers that each patient is different, so too can be the molecular biology of disease.  We cannot say how likely it is that this approach will benefit others in a similar situation.   Joanne circumstance being: she had aggressive-behaving indolent FL. The FL was Rituxan-refractory but chemo-sensitive, and she had no bone marrow involvement when it was tested after the initial course of PEP-C.

As of this date, January 2015, she has no evidence of FL. Ten years without any clinical evidence of the disease - a blessing!

It's not possible to know know if Bexxar alone would have achieved the durable response. Because an enlarged node was still visible in her neck prior to receiving RIT it seems clear that more therapy was needed following chemotherapy.  Given the very high tumor burden that was present when the sequence of treatments began, we assume that the ENTIRE protocol (chemo AND RIT) was needed to achieve the durable response in her case.

Our personal experience reinforced my strong belief in the critical importance of clinical trials -- in order to test new classes and new uses of approved treatments. We feel grateful to the scientists AND to the participants of clinical trials who made the discovery, and testing of Bexxar possible.

All the best,

~ Karl

JoanneS DX 1/96 = nhl-low follicular, Stage III, no bone marrow
involvement - initial W&W, but with progression

1-96 Diagnosis of low grade FL (w&w)
11-97 ... suspected transformation, not confirmed by core biopsy
12-97 6 x CHOP
CR , relapse 8 mo DX = same as original (low grade)
12-99 Rituxan 8x
06-00 LL-2 (anti-cd22) Clinical trial
04-01 Rituxan 4x (4/20) seq with oral low dose PEP-C
PR ~ 80%
12-01 Repeat PEP-C
PR ~ 70%
04-02 Favrille idiotype vaccine
11-02 Rituxan + CpG Clinical Trial
01-03 oral low dose PEP-C
PR ~ 80%
04-03 Inteferon-alpha-2b
(rationale: to maintain response during rest)
07-03 Favrille idiotype vaccine Clinical trial
07-04 MRI detects some progression.
Begin oral low dose PEP-C 4 week + 2 week every other day
Result: ~ 90% response *
Bone marrow negative (PCR)
11-04 High dose cytoxan, Neupogen, Stem cell harvesting
(Harvesting while PCR negative,
as precaution, and to reduce tumor burden further)
02-05 Bexxar
(Neck nodes increased by 5x after dosimetric dose,
probably inflammation)

1 - 15 No palpable nodes detected (10 yrs out)

* Response and time to next chemotherapy improving over time.

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For all medical concerns,  you should always consult your doctor. 
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