Dear Family & Friends,

On May 18 Barry will have his second Stem Cell Transplant.  We are moving to an apartment across the street from the hospital on May 11.  The apartment is in the same complex that we lived in the last time and it is even the same footprint.  Between now and then we have many appointments at Stanford in preparation, including the long “consenting appointment” when he has to sign lots of scary forms.

Barry’s treatment will be all outpatient this time, unless he has to be hospitalized for an infection.  The conditioning for the transplant, where his immune system is weakened but not completely wiped out, is going to be stronger this time, although shorter in duration.  He will have three days of Fludarabine (chemo) starting May 14, then one day off, then one day of Total Body Irradiation (TBI) followed immediately by the transplant, which is more of a non-event, like a transfusion. Read the rest of this entry »

Dear Family & Friends,

We got great news this week — Barry is in complete remission and will have a second transplant.  David Miklos, Barry’s amazing BMT (Bone Marrow Transplant) doc emailed us Thursday morning (6:37 am) with the news:

Congratulations! Our pathologists do not see any PLL in the bone marrow biopsy (report pasted below).  The key statement is: “Flow cytometry shows a significant population of T-cells with loss of CD7 expression. This population does not have the immunophenotypic characteristics of the patient’s prior neoplasm.”

I am meeting with my BMT colleagues this afternoon for our weekly faculty meeting and will propose we take you to a reduced intensity conditioning allo HCT with the frozen product we have.  I think we should use the Fred Hutch RIC using 200total body irradiation with 3 days of fludarabine because you never had a full engraftment the first time using TLI ATG and we are going back with the same donor.

We could start as soon as radiatiation therapy logistics allow.  Paige will be in touch with you about that.  Once again this is good news.  Congrats.  I’m happy for you.

We do not have a date for the transplant but we expect it will be in about 3 or 4 weeks as they have begun scheduling tests that precede the transplant such as Pulmonary Function, ECG and a CT-Scan.  We will move down to Stanford and rent an apartment again for the duration, about 4 months, and Barry will be in isolation during that time. Read the rest of this entry »

Dear Family & Friends (all 193 of you),

Barry just completed his 8 week course of Campath and we have a bit of a reprieve.  He will have a bone marrow biopsy (his 12th) on April 12 with results (the verdict) on April 19.  If he is in complete remission, he will get a transplant, but we do not have any further information on when that would be.  Our best guess is sometime in May.  If he is in partial remission, he will have further treatment with another drug, Nelarabine, and we do not know how long that course of treatment would last.  We, of course, are hoping for complete remission.  All indications are good, but they can’t really tell from his regular (peripheral) blood draws — they have to look at the marrow to have a definitive answer.

He’s feeling pretty good now, but has been battling infections.  We had another ER visit last week that was really no fun at all.  He had a fever and we spent 21 hours at the Emergency Department and got 3 hours of sleep.  He had been diagnosed with yet another viral infection, MPV (metapneumovirus), which they were not treating because they did not feel like it was dangerous unless he got a fever or shortness of breath.  Since he got the fever, he just finished a course of Ribavirin, and he’s doing much better. His cough from this virus was downright scary.

We are both completely burned out. Read the rest of this entry »

Dear Family & Friends,

Many of you have contacted me to ask how we are doing.  It’s a very long, and sometimes tedious, story.  I will attempt to make it clear and real.

What we know:

• Barry has a T-Cell Leukemia, but it is not T-PLL (T-Cell Prolymphocytic Leukemia) as I reported in January.  That is because the T-Cells are not typical prolymphocytes.  What this all means we do not know, and do not need to know, as the treatment is the same. Dr. Steven Coutre, Barry’s original Stanford hematologist and Director of the Hematology Clinic, describes this diagnosis as “definitely weird.  He will be Barry’s treating physician until we move back to David Miklos for transplant.

• We do know that he had T-Cell problems all along, and he had a “messy diagnosis” (David Miklos) from day one.  This is not a transformation of his B-Cell Leukemia or a result of his transplant, but another animal altogether.  This cancer basically exploded as Barry lost his first graft.

• Barry is in his fourth week of Campath, a monoclonal antibody that brought him into remission in 2006 in preparation for his first transplant.  We go to Stanford three times a week for a subcutaneous shot in his abdomen.  He had many symptoms in the beginning of this treatment (fevers, chills, dizziness, etc.) but they have subsided.  His counts (white blood, hematocrit, neutrophils, lymphocytes, platelets, etc.) are looking very good.  It looks like the Campath is killing off the really bad T-Cells and antibodies that were attacking his platelets and we are hopeful that this treatment will bring him to remission again.

• We have had two Emergency Room visits. Read the rest of this entry »

Dear Family & Friends,

We’ve had quite a month.

Barry was being treated with Rituximab and Dexamethasone for his ITP (Idiopathic Thrombocytopenic Purpura), low platelets.  He was miserable (fatigued, dizzy, headaches, sleeplessness, etc.) from these treatments, and they were not effective.  He had two serious  bleeding episodes, one that sent him to the ER in Palm Springs in the middle of the night with an uncontrollable nose bleed, and another that brought us to Stanford with spontaneous bleeding from the gums.  Not only have his platelets not responded, but now his entire immune system has gone haywire.  He has high white blood count, high liver enzymes, low platelets and high clotting factors.  Last week, David Miklos said these were “weird labs.”

David’s best guess, based on lab results and his brilliant mind, is that Barry is losing the graft.  He described what is going on in Barry’s immune system as a Civil War between the graft and the host.  It’s Gettysburg, three years in.  Julia doesn’t like this analogy as it makes Barry the South.  But we know who ultimately won.

Barry has a multitude of Large Granular Lymphocytes (LGL) T Cells that are wreaking havoc and a lot of rogue antibodies that are attacking his immune system.  Still no cancer which is good news.  But Barry is sick and needs to be treated.  Hence Plan B.

David has conferred with his mentor at Harvard, where he trained, who is a big macher at the American Society for Blood and Marrow Transplantation, and Barry was the subject of part of the Stanford BMT Retreat today.  We’re being treated by the best and the brightest and that gives us much comfort.

This is also very unusual.  According to David there’s no data, no literature, no studies, nada.  They’ve “never seen this before.”

Barry will go into the hospital tomorrow for three or four days of treatment with ATG, a monoclonal antibody that will kill the nasty T Cells.   He was treated with this prior to his transplant three years ago.  It’s nasty stuff but will hopefully do the job.  They will be monitoring his counts to make sure the treatment is effective.  He will come home for about a week to let the nasties die and then he will be infused with his donor’s frozen cells in a boost as well as a DLI (Donor Lymphocyte Infusion).  He will also be on an immuno-suppresant (cyclosporine) and he’s been on acyclovir to prevent a recurrence of the zoster (shingles) that almost killed him in 2006.  He will be immuno-suppressed but will not have to be in isolation.  He will just have to be careful.

We’re glad to have a plan.  We’re not glad to have to have a plan.  It’s been, to say the least, emotionally draining (hell) on both of us and we’re back in cancerland, even though there’s no cancer.  This is our life.

All of your cards, emails, phone calls, etc. give us great comfort.

Much love to all,

Bonnie

If anyone wants to be removed from this list, please let me know.  Also, for those of you who are new, my email journal and Barry’s transplant stories are at http://www.agauchepress.com/