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....
Tuesday, September 30, 2014
Tuesday, September 23, 2014
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.
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.
New on the Radar
I was released early instilling a false sense of confidence while misleadingly trying to do much for myself at home alone. It became blindsidingly apparent (during an embarrassing tearful Aha-moment) that I simply couldn't do it all. Crap, I honestly couldn't walk and talk at the same time, much less stand on-line at the Toyota dealership when I had a car issue. Who woulda thunk it. Hell this was only chemo #2. And typically recognized as not your average patient. We needed to reserve all available care givers for Transplant - when they would be in such great need. Perhaps it was I who was kidding myself. Thanks to my truly Amazing friends my "village" my peep's...and much to my own chagrin - again - I ate crow. We now have a very much downsized mini-care giving routine in place. What the hell would I do without you guys. Flippin' Really.
Current plan: Eyes-on and accompaniment to my every-other-day SCCA appts. A morning and evening check-in phone call for the other days (fevers ?). At least one weekend warrior to enter the dusty basement (can't breath, no energy) to do laundry, take out trash (turning food items-bacteria), and some minor house keeping/errand things. Though nothing further has been scheduled with SCCA pending yesterdays outcome (awaiting a new schedule - hope it's the same). We have peep's already lined-up for tomorrow (Wed), Friday, and I believe one day this coming weekend. The 3 week-day accompaniments' require a certain degree of flexibility. Typically it's 2.5 to 3 hrs with me up at SCCA, but every day is a crap shot. If I need a transfusion it could easily turn into a 5-6 hr day. Moving forward, I have all the contact information of those that previously volunteered (God bless your souls) and will be contacting you directly myself. Of note, this plan is a far lesser degree of what we envisioned for Transplant.
From my heart I thank you all for the help.
Cheers !
Current plan: Eyes-on and accompaniment to my every-other-day SCCA appts. A morning and evening check-in phone call for the other days (fevers ?). At least one weekend warrior to enter the dusty basement (can't breath, no energy) to do laundry, take out trash (turning food items-bacteria), and some minor house keeping/errand things. Though nothing further has been scheduled with SCCA pending yesterdays outcome (awaiting a new schedule - hope it's the same). We have peep's already lined-up for tomorrow (Wed), Friday, and I believe one day this coming weekend. The 3 week-day accompaniments' require a certain degree of flexibility. Typically it's 2.5 to 3 hrs with me up at SCCA, but every day is a crap shot. If I need a transfusion it could easily turn into a 5-6 hr day. Moving forward, I have all the contact information of those that previously volunteered (God bless your souls) and will be contacting you directly myself. Of note, this plan is a far lesser degree of what we envisioned for Transplant.
From my heart I thank you all for the help.
Cheers !
Sunday, September 14, 2014
Transplant vs DLI
Consultation was finally scheduled this past Wed where much information was presented in an informative, concise and knowledgeable manner. And it was all greatly welcomed. Several options were laid on the table surprisingly starting with the 2 Chemos I've had. Wow, this had never been presented. I would likely be fine for a year maybe two. But alas my aggressive leukemia would indeed return. The following option: Donor Lymphocyte Infusion (DLI) mentioned in an earlier post. I agree, weeks ago I agreed that DLI looked very attractive. Discussed (here in layman's terms): less toxic, low intensity, reasonable survival rates projected, not nearly the degree of caregiving post-procedure required. Not nearly the degree of potential organ damage. That being said there is a higher potential of Graft vs. Host Disease (GVHD) including the desired Graft vs. Leukemia effect (GVL). DLI, as mentioned earlier, is typically used as a "rescue therapy" after disease relapse. Usually a year to perhaps 3 years post-transplant. In my case - unchartered waters - the heart of the issue: why would my donors T-cells work once again if ultimately the Leukemia blast cells broke thru/returned after a 7 year remission ? The thought is; after having a long 7 year healthy remission it is hopeful, optimistic and very likely - with the success they have already seen with DLI - that I would simply need a RE-infusion of Bruce's T-cells to (in simple terms) regenerate an equally long, potentially longer, remission. There are indeed DLI patients out there 10 years post-DLI and still going. Therefore still extremely attractive. That is, DLI Alone.
The next option was presented in the possibility of adding on a chemo drug post-DLI. THIS has always been the deal breaker for me. However it was presented as only a cycle or two, 3 months post-DLI, after we've had time to assess the presence/severity of both the GVHD and GVL effects. I would then be very closely monitored. Okay, understandable, and perhaps still attractive. Not so attractive was the potential of taking it a year.
The chemo med was discussed in much closer detail and though perhaps a tad less toxic than many, it still unfortunately includes the usual toxic side effects of vomiting, nausea, diarrhea, immuno vulnerability, etc, and yes, alopecia (hair loss). All of which are Quality Of Life altering issues. Some handle it physically better. Some handle it worse.
Last option, and what most would think was the no-brainer: Transplant. 2nd time around. Much to my own shock I would not be a candidate for another Myeloablative Transplant simply because my marrow may just not repopulate again. Period. The transplant protocol discussed would obviously require a new unknown donor, was not a "mini" but rather a slightly lesser intensity albeit fully toxic one. It would include 4/5 chemo meds for the "cocktail" and TBI (total body irradiation, aka: radiation). This rather freaked me out as MDS is often linked to prior chemo radiation treatments (ie: tv personality Robin Roberts) and my leukemia has always started off as rare high-risk MDS. This transplant protocol would bring with it all the horrors that transplants bring both during the treatment as well as after the "procedure" itself. Mortality rate, 3+ months of 24/7 caregiving, mucositis, TPN tubal nutrition, a significantly higher degree of GVHD and all the medications; anti-rejections drugs, immuno suppressive, pain managing, steroids & anti-steroid damaging treatments, as well as potential liver, kidney, pulmonary damage, and countless other complications. Need I say more. Above and beyond all, who's to say this new donor's cells would even work (!). And if they didn't...DLI would NOT be an option so soon after transplant (!). A frightening scenario that would open a whole new can of worms.
Ultimately, as Diane said, the Aha-moment, well the gold star of several Aha's, was that the overall survival rate of this transplant option was the same/similar to the DLI choice.
Thurs afternoon I chose DLI.
Friday morning I called Bruce. In the middle of explaining all of the above, something both he and his lovely wife have been equally awaiting information on, I quietly stopped....and tearfully said: Bruce ***** , would you please be my donor again.... ?
He replied Of Course.
The next option was presented in the possibility of adding on a chemo drug post-DLI. THIS has always been the deal breaker for me. However it was presented as only a cycle or two, 3 months post-DLI, after we've had time to assess the presence/severity of both the GVHD and GVL effects. I would then be very closely monitored. Okay, understandable, and perhaps still attractive. Not so attractive was the potential of taking it a year.
The chemo med was discussed in much closer detail and though perhaps a tad less toxic than many, it still unfortunately includes the usual toxic side effects of vomiting, nausea, diarrhea, immuno vulnerability, etc, and yes, alopecia (hair loss). All of which are Quality Of Life altering issues. Some handle it physically better. Some handle it worse.
Last option, and what most would think was the no-brainer: Transplant. 2nd time around. Much to my own shock I would not be a candidate for another Myeloablative Transplant simply because my marrow may just not repopulate again. Period. The transplant protocol discussed would obviously require a new unknown donor, was not a "mini" but rather a slightly lesser intensity albeit fully toxic one. It would include 4/5 chemo meds for the "cocktail" and TBI (total body irradiation, aka: radiation). This rather freaked me out as MDS is often linked to prior chemo radiation treatments (ie: tv personality Robin Roberts) and my leukemia has always started off as rare high-risk MDS. This transplant protocol would bring with it all the horrors that transplants bring both during the treatment as well as after the "procedure" itself. Mortality rate, 3+ months of 24/7 caregiving, mucositis, TPN tubal nutrition, a significantly higher degree of GVHD and all the medications; anti-rejections drugs, immuno suppressive, pain managing, steroids & anti-steroid damaging treatments, as well as potential liver, kidney, pulmonary damage, and countless other complications. Need I say more. Above and beyond all, who's to say this new donor's cells would even work (!). And if they didn't...DLI would NOT be an option so soon after transplant (!). A frightening scenario that would open a whole new can of worms.
Ultimately, as Diane said, the Aha-moment, well the gold star of several Aha's, was that the overall survival rate of this transplant option was the same/similar to the DLI choice.
Thurs afternoon I chose DLI.
Friday morning I called Bruce. In the middle of explaining all of the above, something both he and his lovely wife have been equally awaiting information on, I quietly stopped....and tearfully said: Bruce ***** , would you please be my donor again.... ?
He replied Of Course.
Tuesday, September 9, 2014
Discharged, again
Will be heading home in about 2 hrs, after last dose of super antibiotic. No fever in 48 hrs. Tomorrow big day. Transplant consult. Finally.
Monday, September 8, 2014
That dratted fever...
Back to the Hospital. I started with low grade fevers on Friday. Nothing serious, but enough to keep an eye on. Saturday I had some tenderness mostly on the left side of my jaw and neck. The fever, though still low grade, was now slowly rising. I woke up yesterday (Sun) and soon after my fever rose sharply to 101.5. Significantly above the SCCA limit of 100.4 and requiring a trip to the ER. Needless to say I am back in the hospital, but likely for only for 48 hours. I'm being pumped up with antibiotics, a red blood cell transfusion, and hydration. Swelling and tenderness have gone down but a CT-scan has been ordered.
At the same time, via a friend thinking outside-the-box, I received an expected and extremely welcomed call that a Transplant Consultation has now finally been scheduled for Wed afternoon. The hospital staff are aware of the circumstances and the importance of this particular consultation and are focused on getting me out of here in time for it. Could things finally be lining up correctly ?
Stay tuned.... = )
At the same time, via a friend thinking outside-the-box, I received an expected and extremely welcomed call that a Transplant Consultation has now finally been scheduled for Wed afternoon. The hospital staff are aware of the circumstances and the importance of this particular consultation and are focused on getting me out of here in time for it. Could things finally be lining up correctly ?
Stay tuned.... = )
Still Home & crossing fingers....
The following was written on 9/6 but not completed:
15 day's post-chemo, white blood cells and neutrophils at 0 (nader), and still hanging in there ! Feel super weak, enough so that it's surprising even me. I find it a bit difficult to walk & talk at the same time, breathlessness, and it's a bit sobering. That's never happened to me before. I still have about 5 or 6 days left of feeling like Crap (and everything tasting like salty burnt metal) until my levels start trending up again. It's really rather strange, and a fare bit discombobulating being home during this part of chemo. I've never been discharged this early in a cycle. A plan not very well thought out - especially before a long holiday weekend. I find myself slipping easily into post-chemo more relaxed parameters and behavior before quickly realizing I am ridiculously vulnerable. To Everything !!
Though we've requested - on numerous occasions - an SCCA required consult to discuss Transplant vs. DLI, we've been dismayed that there has been no word or contact from the Transplant team, nor anything scheduled yet. Obviously this is a time sensitive situation. Apparently it was mistakenly assumed that I was going directly to DLI. Why... I'm not quite sure. We are in the process of trying to correct this immediately. A consult appt was finally made on Thurs for Oct 2 however this is way too far out. I was informed it would likely result in a 3rd round of chemo. Something I will NOT even consider. There was a potential of a Sept 22 appt but this too is far out. Unfortunately I've had to go out-side-the-box in order to get scheduled as soon as possible, hopefully this Wed (?). Something is presently in the works thru a friend... So keeping fingers crossed and holding breath this one will work out.
Since being discharged I've had a couple of platelet and red blood cell transfusions as an out-patient at SCCA. I've been receiving O+ and was curious about this. Interestingly, I was born B+ but my donor Bruce is A+. After transplant was complete I too became A+. Receiving O+ is fine and apparently more common and equally compatible with A+. However a friend joked she was going to get me a tee-shirt to wear saying "My blood type is A+"....just to keep things clarified. = )
15 day's post-chemo, white blood cells and neutrophils at 0 (nader), and still hanging in there ! Feel super weak, enough so that it's surprising even me. I find it a bit difficult to walk & talk at the same time, breathlessness, and it's a bit sobering. That's never happened to me before. I still have about 5 or 6 days left of feeling like Crap (and everything tasting like salty burnt metal) until my levels start trending up again. It's really rather strange, and a fare bit discombobulating being home during this part of chemo. I've never been discharged this early in a cycle. A plan not very well thought out - especially before a long holiday weekend. I find myself slipping easily into post-chemo more relaxed parameters and behavior before quickly realizing I am ridiculously vulnerable. To Everything !!
Though we've requested - on numerous occasions - an SCCA required consult to discuss Transplant vs. DLI, we've been dismayed that there has been no word or contact from the Transplant team, nor anything scheduled yet. Obviously this is a time sensitive situation. Apparently it was mistakenly assumed that I was going directly to DLI. Why... I'm not quite sure. We are in the process of trying to correct this immediately. A consult appt was finally made on Thurs for Oct 2 however this is way too far out. I was informed it would likely result in a 3rd round of chemo. Something I will NOT even consider. There was a potential of a Sept 22 appt but this too is far out. Unfortunately I've had to go out-side-the-box in order to get scheduled as soon as possible, hopefully this Wed (?). Something is presently in the works thru a friend... So keeping fingers crossed and holding breath this one will work out.
Since being discharged I've had a couple of platelet and red blood cell transfusions as an out-patient at SCCA. I've been receiving O+ and was curious about this. Interestingly, I was born B+ but my donor Bruce is A+. After transplant was complete I too became A+. Receiving O+ is fine and apparently more common and equally compatible with A+. However a friend joked she was going to get me a tee-shirt to wear saying "My blood type is A+"....just to keep things clarified. = )
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