Post-DLI & Care Giving plan....

Sorry a bit late in posting. Med-team wanted caregivers with me the entire weekend after Friday's DLI so it was a simply lovely, social, but rather exhausting weekend.
Catching up: DLI was a mildly surprising almost non-event. After Bruce's 5 hr harvest, and I being under the impression it too would be a several hr infusion, it was simply a 10 cc/ml, four minuet (seriously) injection into my central chest line (hickman line). We were rather stunned to say the least. Sooooo very much riding on so very little. The syringe was a watery red color, filled with Bruce's Lymphocytes, which will hopefully kick-start his cells & his/my immune system to fight off any remaining chance of the Leukemia. At the same time we're now holding our breath (literally) & waiting to see how the GvHD (and the GvL) is going to effect me. This is where it may get a bit dicey due simply to the fact I have NO bone marrow - still - and am getting by transfusion to transfusion. And, as advised last Wed: this DLI  "does not preclude a 2nd Transplant".
Thankfully my CareGiver Calendar is completely covered now (whew) but my care is up in the air at the moment. I had the DLI on Friday. I may rock thru it, or I may not. Let's hope for the BEST, but prepare for less than that - just in case. This theory makes my caregiving needs perhaps only a part-time or minimal issue. So...present game plan:  depending on how I physically handle the above, we will keep the calendar in place for the FULL-time caregiving plan. However we will continue on the current PART-time plan we have been using - thereby only calling everyone into play if things start going south for me. Please all continue to be available for the days you have signed-up for, but know that if I am progressing well we may either simply have you quickly swing by, or even call, just to check-in on me ~ and that you may now have a free day to play hookie with as you wish.  = )
Once again I simply can't thank you enough for volunteering to help, signing-up, checking in, to all those not on the calendar who have fearlessly let me become dependent on them: rides to appointments, cooking & delivering food, cleaning, errands, laundry, shopping, etc, etc.... To all my peep's, I continue to be in awe of your profound compassion.....
Now let's all cross every finger & every damn toe !
To Life.

Bruce

Spoke to Bruce today. He donated his lymphocytes for 5 1/2 hrs today, filtering thru 21 liters of blood. Thank you Bruce. Are words even enough? He is stiff & achy from being afraid to move while being hooked up to the apheresis machine. By the time he called the currier was already at the mid-west airport, ready to fly Bruce's cells here to Seattle. They'll arrive sometime tonight. Be counted and prepped. And tomorrow is DLI.
Bruce. My Hero. xo

Moving Target....

Day 56 post-chemo and still NO recovery of my bone marrow. Almost 2 months later. A serious issue. I am now getting by on blood transfusion every 3-4 days.
At Conference on Wed they decided to forego the now "Mini" transplant option in favor of the DLI plan again. The thought being I may still benefit from DLI, and DLI would still leave the door open for a mini-transplant as a last option if DLI should fail. There is however concern that I am now Aplastic Anemic with empty marrow. There is also a significant likelihood that DLI will bring on Graft vs Host Disease (GvHD) which comes hand in hand with the desired Graft vs Leukemia (GvL) effect. The GvHD alone will be the dangerous part for me. Simply because I am already so unbelievably vulnerable with absolutely no protection whatsoever. A VERY key note here: I will not be getting new Stem Cells. This is Donor Lymphocyte cells only - which, in theory, is supposed to fight any budding or residual Leukemia . This procedure will make my blood counts even lower BUT will not make my bone marrow recover.
A friend Daryl found the below link from a UK Leukemia organization which simply explains DLI in very "dumbed-down" terms;  it's process, side effects, management, etc. However, because I am apparently breaking new ground for both SCCA and the typical DLI protocol, this makes my particular DLI a completely different Beast....
https://leukaemialymphomaresearch.org.uk/sites/default/files/donor_lymphocyte_infusion_jan_2012_0.pdf 
The above link is also attached in the column to the right under "Critical Links"
Game plan:  Bruce, my lovely donor, is lined-up to donate on Thurs in the Mid-West. His Lymphocyte cells will be flown here overnight and I will receive his transfusion on Friday Oct 17th. Altho I am of the mind-set to maybe wait a little longer for any possible marrow recovery, it was decided at Conference on Wed to proceed sooner rather than later due to the danger the overly aggressive chemo may potentially bring with it a new round of Leukemia.

Help me qualify....

...for a Transplant. Because I am now ineligible for DLI  I will need the caregiving we were originally planning for in Dec, Jan, Feb.  However we may need to bump-up the time-frame and calendar to now include November (??).  I'm only going by what they are estimating. This is a seriously moving target. Thankfully we have most of both December and January "weekdays" filled already (bless every single person who jumped at signing-up. Simply not enough words, Truly..... ). We are now in true need of 1-day or 2-day Weekend Warriors to jump in as well !


In order for SCCA to move forward to transplant and being single/no family, I need to have a care-giving plan in place. It is their policy to not let a patient proceed to transplant without a plan. It's just far too dangerous for the patient. Please look to the right of this post in the column under "Critical Links". Click on CareGiving CALENDAR and proceed. Honestly it only took me a few moments to figure out how to add a name etc, but it is indeed user-friendly. If you need help pls lemme know.


Given a few weeks notice now & with reasonable planning ahead ability, those of you in the Seattle area that can spare a day perhaps two (or more) please try to grab whatever you'd like to babysit me, help me around the house, read while I perhaps nap, accompany me, & to maybe even have a stunningly radical flippin' Great time with me too. Yes, there will indeed be runny nose's, The Flu, work sending you out of town, last min issues. We'll just have to deal with them. After all that's life right ?  As well as it being both flu & holiday season.  We'll manage, and cover.  But please honor me, sit with me, laugh with me and sign-up for whatever you can. This way I can actually present something to SCCA while getting to spend some quality time with my peep's, my homies, and my countless groupies.  I've been told it takes a Village....
XO

DLI cancelled - Not Good

Day 45, post-chemo #2:
Yesterday's results:  STILL no cell recovery ! Bone marrow completely empty.  stunning.  speechless.
DLI has now been cancelled. I am no longer eligible. And I now have a new disease: Aplastic Anemia - bone marrow failure. Politely informed at yesterday's appointment due to the overly aggressive 2nd round of chemotherapy.  This I already knew...deep in my heart.
Plan (?) is in significant flux. SCCA is pushing a Mini-Transplant now - something I've always been profoundly leery of.  Super low intensity - will it even work ?
Question now: just how in the hell do we proceed ?  Because my Marrow is already empty I'm actually already at the point where stem cells would be infused. How long do we wait ? Do we do a smaller dose of perhaps a cleansing Chemo - causing even more damage ? Do we use my original donor Bruce - ready to go & whom my cells over-took & already relapsed once with ? Do we work-up 1 or 2 of the 30 new matches found instead, praying they will populate, hence less fear of a relapse ? Do we have the time ? Is a Mini Transplant even strong enough ?
I am now treading in new waters. So much so that they are presenting my case to PCC on Wed  (aka: Case Conference, a large meeting of the physician minds bouncing ideas off each other about difficult/rare cases).
Crap. Looking Grim....    & not happy.

Dumb it down

Request from Marcia - my Dearest fellow vagabond back-packing lovely soul-Sist'a in London who's spent so much time with me exploring various crazy-assed & remote parts of this wild world...."Please dumb all this way down...for my sake". Even giving permission to use her name here.
So it goes:
Day 44 post-chemo #2 (!!!). Original donor Bruce all set-up & ready to donate again - this time "lymphocyte" cells. But.... DLI treatment now on HOLD.  As of yesterday still no reasonable cell return. Neutrophils - the most important - have bleeped in & out with 0.01, 0.00, and 0.02. Nothing solid. Nor anywhere near where they should be. I have been "on the cusp" for 14+ days now without getting over that cusp. No improvement. Needed a bag of Platelet's again last night cuz apparently not holding them vey long. Last transfusion was Wed night.
May now need to skip DLI, go directly to "mini"-transplant (!!!) using Bruce's stem cells (hmmm ?) instead of a New donor simply because he's all lined-up & ready to donate. Mini-transplant has never even been discussed before. Am rather stunned at this newest development. Things not looking as good as they most certainly should be at this point. In fact, rather daunting.
And there it is....

Stagnant

Instead of giving you bits and pieces the thought was to wait until after yesterdays added-on HemOnc appt with my AML chemo team until I had more definitive info to share/update you....


Breifly - The July chemo saw cell recovery start at Day 23. However in the past 13 days since there has been slowly growing concern as it became apparent there was no cell improvement. (because my current WBC's are 0, my Neutrophils are 0 - the 2 most critical measuring points - the 0's should be sufficiently self explanatory). As last week rolled-out, several times my RN expressed mild surprise then mutual concern when 4 separate results continued to support the above. The Bone Marrow Aspiration (BMA) originally scheduled for a few weeks away, she re-scheduled for yesterday. With the addition of last Wed's result she re-schedule the BMA even sooner - to last Friday Sept 19th. Obviously if the BMA was twice re-scheduled to sooner each time there was now concern, at least to a mediocre degree.


Kate and I met with the team yesterday (day 36) for the BMA results. The team was pleased and announced no residual disease present. 2 additional reports were not yet available. Having entered into the 2nd round of chemo already in Remission I found it didn't make sense residual disease would be a concern, even scientifically possible. They continued; though concern they were confidant I was right on the cusp of cell recovery. Even as I feel weaker I kinda think this may be possible from other physical indications I'm experiencing. I also believe they are now acutely aware to project confidence, encourage trust again, perhaps reduce concern, as I had lit significant fire the previous week to simply get the Transplant Consult finally scheduled. An example was offered using a random day 49 that would cause a higher level of alarmed concern. I was also disappointed there were no available results showing baby WBC blast cells, baby RBC's, baby Neutrophils, baby platelets developing in the marrow, and potentially why not. Were we perhaps too aggressive? Should we have waited another week or 2 in between ? He replied maybe yes. But maybe the disease would return. We would keep the New Patient DLI Oct appt, but watch and wait in the meantime, breath held. He suggested I inquire with the DLI/Transplant team about cell recovery levels in order to proceed w/ DLI. Also briefly mentioned: if still no cell improvement nearing the day "49" example, would a synthetic medication encouraging Neutrophil growth be used ? Ultimately I shared my concern if cell recovery showed no improvement period how would this reflect upon any future Transplant should the DLI fail ? Surprisingly, bluntly, he responded next step would be directly into a Mini Transplant, without DLI...at all. We didn't expect that answer. Albeit it makes medical sense. Wow.