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CML Mariner Explorers

Captain Bob's HSP 70 Trial Adventure
As narrated by his mate, Kelly

Now the Vaccines
Rob returned six weeks later for his first vaccine on January 3, 2003.  Again, the weather was cold and snowy.  After having his blood pressure, pulse and temperature taken, he received the injection.  There was an observation period for 30 minutes after the injection to make sure there were no immediate, adverse reactions.  Rob returned to Homewood Suites feeling quite cheerful.  He did notice a couple of hours later that the arm in which the vaccine was injected began to itch.

Unfortunately, Rob had picked up a virus in the airport and some congestion started to set in the next day (Saturday).  By Sunday, he was feeling pretty bad and starting to cough.  He was staying in Connecticut until the following vaccine on Friday, January 10, 2003 so the rest of the week was pretty lonely as he battled a cold in his hotel room with heavy snow weather outside.  It was hard to tell whether he had any side effects from the vaccine as the virus, with terrible congestion and cough, seemed to be gaining momentum.  He met with Elizabeth who carefully documented every symptom.  He then received the second vaccine and, again, noticed an itching in the injected arm a couple of hours after receiving the injection.  He was not feeling his best when he returned to San Diego the next day!

After five days at home, it was back to Connecticut for his third vaccine.  The virus symptoms still persisted and Rob had decided to fly back and forth for each vaccine, rather than stay at Homewood Suites for the week in between.  It is a very nice hotel, but there is not much to do there as it is rather isolated in a rural part of Connecticut and the weather was not cooperating for any outdoor activities.  So we decided it was worth the extra money to travel more often.  He alleviated some of my anxieties about the airport germs by agreeing to wear a mask while in the air.  The third vaccine came off with the usual pattern, a bit of itching in the injected arm, but no other immediate side effects.  This time, he flew home the following day.  Exactly three days after the third vaccine, Rob woke up feeing extremely lightheaded and weak, almost flu-like.  But the worst of it passed within 24 hours.

The fourth vaccine took place without a hitch.  This time, he did not experience any itching in the injected arm, but did have the lightheadedness and weakness approximately three days after the vaccine.  Again, Elizabeth carefully documented all these symptoms.  That evening, the three current HSP70 trial participants, along with several CML comrades who lived in Connecticut or nearby, met for pizza at Homewood Suites.  Two of the Connecticut friends were previous HSP70 trial participants.  The group talked for hours, sharing their histories, treatment horror stories and triumphs, hopes and fears.

Before Rob's fifth vaccine the following week, Dr. Li conducted a bone marrow biopsy to conduct conventional cytogenetic analysis, FISH and PCR.  He also prescribed Augmentin, an antibiotic, for Rob since he had developed bronchitis and a sinus infection secondary to the virus.  Rob then received his fifth vaccine.  Again, no itching in the arm, but mild symptoms three days after the vaccine. 

I flew back to Connecticut with Rob for his six-week visit.  I was hoping the BMB/BMA cytogenetic analysis  and FISH results would be ready and I wanted to meet Dr. Li and Elizabeth, who had been so patient about answering questions and reassuring any concerns we had.  I was impressed with how smoothly the transportation to the hotel worked and how comfortable the hotel was.  We had made arrangements to meet with HSP70 Patient H for breakfast.  He was to receive his last vaccine that day and we discussed the results of the trial so far.  None of us knew the results of three of the first five patients.  Of the remaining two (Patient D and Patient E), both obtained molecular remission during the trial.  Patient D entered the trial on 400 mg of Gleevec at 8% Ph+, and Patient E entered the trial on 400 mg of Gleevec at 18% Ph+.  The sixth patient, Patient F, chose not to complete the trial.  She had received six vaccines, but her counts were escalating and her midpoint BMB cytogenetics showed an increase in her Ph+ count.  She opted for a matched, unrelated donor transplant and we are all hoping and praying for her full recovery.  The seventh patient, Patient G,

Rob with the boys in Disneyland.

The Family

before the trial showed an increase in his Ph+ level to 45%.  In addition, there appeared to be some clonal changes which concerned him and his doctors.  His 5-week midpoint BMB/BMA cytogenetics  indicated a shift to the Accelerated phase and his Ph+ had increased to 95%.  Patient H, along with his oncologist and Dr. Li, had decided to continue with the vaccine trial and increase the Gleevec to 800 mg.  We were all hopeful that his final BMB/BMA, FISH and PCR to be done at the 10-week mark would show dramatic improvements in cytogenetics.

Rob's Results

Rob and I took the shuttle to UCONN and waited for Elizabeth and Dr. Li nervously.  Rob's counts had changed quite dramatically during the trial, which made me extremely anxious.  His WBC and platelets had more than doubled, but remained well within the normal range.  There were many confounding variables which could account for the change in counts including the virus, an Aranesp injection he had received for his anemia, and the vaccine itself.  Only the cytogenetics would tell us the true story.  His November BMB/BMA showed 2 out of 20 (10%) cells positive for the Philadelphia Chromosome.  When Elizabeth took Rob's blood pressure and pulse, it was clear that my normally unflappable husband was quite tense.  Dr. Li entered the room and read the reports silently, occasionally glancing up at Rob and myself.  He then informed us that Rob's BMB/BMA showed zero out of twenty cells positive for the Philadelphia Chromosome!  We were so relieved and grateful.  The FISH results were somewhat discrepant at 9%; the PCR (which was sent to OHSU and took a few weeks to get back) had a level of .036% -- another great result.   We had dinner with a previous HSP70 vaccine patient and shared our experience and hope with each other, as well as many laughs. 

Rob completed all 8 vaccines by the end of February, 2003.  He experienced very mild symptoms three days after the sixth and seventh vaccines, but felt virtually nothing after his eighth vaccine.  We have talked about this with other trial participants.  Patient D felt no symptoms whatsoever after each vaccine; Patient E felt somewhat congested and flu-like during the trial; Patient H seemed to have no symptoms; and Patient I experienced symptoms very much like Rob's and during the same timeframe.

Some Relevant Background
The Trial Begins
Some Followup Results with HSP70
Summary

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