Optimism vs. Skepticism

We met my new doctor yesterday. Yes, new doctor. Dr. G. has gone east to NYC to head up the transplant program at Sloan Kettering. His departure is lightheartedly called a betrayal by the staff at MDA because Sloan and MDA are always competing for the honor of being the nation's top cancer center. Dr. G. called me in December, before we had committed to MDA to tell me of his decision and to offer alternatives. As you know, we decided to stick with MDA, first because Dr. G would still be here for my transplant and a month afterwards and second because of MDA's reputation for running such a smooth and clean operation. A reputation which has proven to be true based upon our experience. Our new Dr., Dr. Q, from India I believe, is quite warm and knowledgeable. Dr. G has also indicated he will continue consulting on my case, even though he is now in NYC.


The bone marrow results are encouraging. My doctors are very encouraged and Susan and I are a bit more skeptical. My plasma cells were at 29% just before the transplant (down from 87% post Arkansas, due to the 3 months on revlimid). The lastest bone marrow shows them at less than 5% (actually 1 %). So why aren't we jumping up and down in celebration? First, remember that debacle in Arkansas when the plasma cells went from 90% to 5% in one week; only to return to 90% the next week. Although the bone marrow biopsy is often described as one of the most definitive tests, it has its shortcomings. One of those is that myeloma is patchy. It can be concentrated in one section of the marrow, and hardly present in another. So, my view is that they hit a section that has fewer plasma cells, which is not representative of my entire bone marrow. Why do I think this? Because my IGGs haven't moved downward, and because my M protein has also not moved--it remains at 1.7. We are assured that the effects of the chemo will continue for another 30 to 60 days and that can have a positive effect in decreasing the myeloma. The doctors, (Dr. G and Dr. Q) both see the entirety of my blood work as very encouraging. When I was questioning Dr. Q, he immediately asked how my blood counts were in Arkansas, when my bone marrow results were so inconsistent. When I told him that my blood counts were in the toilet, i.e., I continually needed neupogyn, red blood transfusions, and platelets, he noted that I have not needed any of that here, (other than a couple of neupogyn shots) meaning that my marrow is working much better. Regardless, things have definitely stabilized. And they still plan to start me on a regime of revlimid and another infusion of Mike's cells, both of which will help further decrease if not eliminate the myeloma.

An insight into the road we have walked: in mid June when my counts were not recovering, I was still losing weight, I was struggling with a body rash and thrush, my IGGs were rising, and Rifkin was telling me that he could not treat me yet because my counts were too low, I told him that I thought I had really screwed up in going to Arkansas and that I had gotten myself in such a bind that I would never recover. Rather than reassure me, he only said he understood why I felt that way. He essentially acknowledged I was in trouble, and I think that is one of the reasons he ultimately referred me to MDA. In light of that history, stable disease is great and decreasing myeloma is fantastic. We'll take this.

I still wrestle with fatigue, although less so, as well as nausea and diarrhea. Of what fun! But all in all I'm doing well, or in the eyes of my MDA team, I'm doing very well. They are better judges since they see all those who have much more trouble following transplant.

Thank you again for all the support, cards, letters, emails, thoughts, prayers, etc. We continue to be extremely grateful for all the support from family and friends. We love you.
Dan

Satisfied With Stability?

The news yesterday should be measured against expectations. Depending on what we/you hoped for or expected, it could be good or not so good, but definitely not bad. Thirty days after transplant, the IGGs haven't moved. They're in the low 1900s, and were at 1875 in early March when this latest treatment started. (normal being between 600 and 1600) I had a bone marrow biopsy today and we'll have a bit more information next week. So what does this mean? Any reduction in IGGs would be caused, at this juncture, primarily by the high dose chemo I received prior to transplant. That didn't happen. The main chemo drug was melphalan. That was the main drug in my first transplant and also a key drug in my second transplant. We know how well that worked in those transplants. NOT. I repeatedly told Dr. B in Arkansas that melphalan did not work with me and my concerns were dismissed because, I was told, melphalan would given along with 8 other drugs. Those 8 other drugs didn't do anything to my disease either, other than make it even angrier than it already was. And, of course, the combo package made me extremely sick.

I told Dr. G. that melphalan does not work with my disease. At least he acknowledged my concern but told me melphalan is in every myeloma protocol they use and that the allo transplant would also have my brother's cells to work with. How is it that I know what won't work with me but the docs don't, or refuse to believe I could know such stuff? Yes, I'm frustrated. That being said, it's probably fair to say there isn't a chemo drug that could be given in high dose that would work with me, since I received every possible drug in Arkansas and nothing worked. As Dr. Rifkin noted upon my return from Arkansas, we need to use a little more finesse with my treatment.


Dr. G's spin on my IGGs is that my disease has been stable for more than 2 months and that is nothing to dismiss. In that he is correct, as my experience in Arkansas was that after about 2 to 4 weeks of each of the 3 high dose chemo treatments I received the myeloma counts started rising again. Dr. B's flame throwing super beam plus couldn't even stabilize my disease! Also, we won't know the full effect of the pre transplant chemo until 90 days post transplant, so downward movement could still occur in the next couple of months. Stable disease is definitely better than raging disease.


All is not lost, however. Because I have Mike's cells, they stand at the ready to attack this myeloma. They haven't been highly active in that fight because the anti rejection drugs mask my cells. So the plan is to start weaning me off the anti rejection drugs in about 3 weeks, being careful not to let graph host disease set in. Once off the anti rejection drugs, I'll get another infusion of Mike's cells and start on a low dose of revlimid. I asked Dr. G if remission is still possible. After a long pause he said, "I'm going to say yes. Definitely." I'm not sure what to make of that. Not to put the pressure on, buy I'm still counting on you, Mike.


Susan's expectations were higher than mine. She looked at me and said, "I was hoping for a miracle." My response: "Don't ignore the miracle standing right here in front of you. It's been five years and I'm still here." The anxiety of all this has taken its toll as she came down today with a nasty bladder infection. When it rains it pours.


On a more positive note, my counts continue to be very good and stable. I'm also getting some energy back and haven't slept 18 hrs a day for at least the last 4 days. I'm probably down to 12 hrs. a day. We go into the clinic a little less frequently, which is nice, especially since we now get the weekends off.

Continuing the Boring Life

Visits to the clinic have now been cut to Mondays, Wednesdays and Fridays. My counts remain stable and I haven't needed any shots or transfusions. I've even had a couple of "good" days this week, meaning I didn't sleep the entire day. Yesterday I'm sure I slept 18 hours or more. But today I've felt more energized, took two walks and only napped for 2 hours. This is progress.

We saw the doc on Thursday and he continues to be pleased with progress so far. He outlined the plan for the next 30 to 40 days and it involves primarily watching for graph host disease or any other complications. At some point they'll start reducing the anti rejection meds and see how well Mike and my cells get along. In the meantime, my activities remain limited, I'm primarily housebound, and am thankful for the days we don't have to truck down to the clinic. Of course, Susan has to play nurse on those days, hooking up my IVs at home, which always makes her nervous since a nurse in Little Rock told her if she didn't do a particular thing it could kill me. Talk about increasing the pressure. That's worse than taking the nursing boards.

We received a nice card from a friend in Denver this week addressed to Susan and Dan Patterson c/o Uncle Gary. How funny! Soon Uncle Gary will get his own postal code.

Best to everyone.
Dan

A Week at Home

The past week has been "relatively" uneventful. I still have my 5 hour daily visit to the clinic to get blood drawn and fluids. So far, I've only needed one neupogyn shot, which took my white count from 2.5 to 26.0 in one day. Whoa. slow down Mike. But I feel great about not needing transfusions of either red cells or platelets. The stability of my blood counts makes Dr. Giralt even more confident that Mike's cells have engrafted, as he doesn't think my cells would perform this well--I agree. In fact, he is quite pleased with my progress so far. That being said, it hasn't been a cake walk. It seems I'm plagued with either vomiting or something similar. Par for the course. And I don't think I've ever slept so much in my life.

And Susan is cleaning up the place with a vengence. Last night she was out in her brother's garage, of all places, moving things, dragging things out. Her brother seems to be the beneficiary of her channeling of all her nervous energy. Of course, I think it's the least "we" can do for intruding on his living space for 4 months. But he and Suze are having a good time, as I sleep my life away. They also are eating some fine food, as Houston has many great restaurants. Unfortunately, my appetite is also asleep.

Houston is quite nice this time of year, at least from the inside of the house or clinic looking out. My doc says stay in the house for another couple of weeks to avoid the pollen. It does feel like house arrest.

So far, so good. Still anxious to get back home, but doing well under the circumstances.
Thanks to all the MM survivors who have jumped on the blog to send their good wishes. Julia called me the other night, "dad, who is Steve Ritter? How do you know him?" Well, I know him only by his blog. "Well, he certainly is a nice man," she responded. Yes, all of you who continue to support us are very nice, indeed. Thank you.
Love,
Dan

Paroled

I was discharged on Monday afternoon following an uneventful Easter weekend. For the next 10 days we have daily clinic visits, which will take from 4 to 6 hours a day as they test my blood, infuse fluids and any other nutrients my blood may be missing such as potassium, platelets, red cells, etc. I am still so exhausted that I see this as an opportunity to sleep, as I did yesterday. I slept through most of the 4 hours, then came home and slept another 2 hours. I guess the work going on in my bone marrow is sapping my energy. At least there's something happening there. Thus far everything in the blood seems to be in good shape (way to go Mike!).

We are now on the alert for graph host disease, which can show itself in variety of ways, such as skin rashes, fevers, increased GI problems, etc. None of it sounds good so we are maintaining high vigil to catch anything early.

Susan and Gary spent the 3 1/2 weeks that I was in the hospital cleaning his house and yard so I would have a comfortable clean environment. It all looks so nice and spit polished. Unfortunately it appears I won't be able to enjoy sitting in the yard as my first attempt at that ended after 30 minutes when my hands got all red and itchy and I had to retreat inside. That was probably my sensitive skin's response to the pollen and heat. I guess I've moved from room arrest to house arrest; a gradual expansion of my area of influence.

My appetite is marginal, which is why I was not shy about bulking up in the months leading up to this. I've also lost all my hair once again. Except this time I went to the barber and got my dome polished. The top of my head literally shines now. Ah, I'm sure it will be a challenge to be such a hottie. NOT.

So the plan is to keep everything as boring as possible and to get early release back to Denver. It's going to get hot and humid here very soon and after 35 years in Colorado I don't tolerate heat and humidity very well.

Happy Spring to all.

Dan

Discharge Aborted

Well, it seems Ireally messed this one up. Yesterday was not a good day. Blistering headache with vomiting. Ultimately they took me off the anti rejection meds, gave me some IV dilauded and things calmed down. But not before I had my whole team in a tizzy. I felt much better this morning, after getting close to a full night's sleep. They only woke me once during the night. But the doctor was not very keen about discharging me because if I got sick again I would have to return to the hospital, get admitted through the ER (sit for hours and wait for a bed with all the sick people around me, coughing and hacking) and there would be no guarantee they would have a bed, or that I would get a bed on the transplant floor. The doc said, if she were me, she would stay the weekend and get discharged on Monday. So it looks like an Easter celebration in my hospital room. I declined the invitation to decorate my IV pole and participate in the Easter parade. But maybe I'll take a video to share.

I'm not too upset with this delay. I've written about our experience in Arkansas when we had to get admitted through the ER on a weekend and it truly was a nightmare. They are short on staff and cancer patients don't get any special treatment through the ER (we are such a spoiled bunch!), even though we are immunosuppressed.

With the exception of yesterday I've continued to do well. My white count is up to 8.1. Hemoglobin is 9.2 and platelets are 80. It has been along time since my platelets were at that level. This is all good because the elevated white count will help fend off infections and will help draw up the hemoglobin and platelets. Way to go Mike. (since these are Mike's cells). I had my first transfusion with Mike's blood type (O+) a few days ago and no complications. Changing to his blood type should not be a problem since O+ is the universal donor anyway.

So, we're looking at a Monday discharge, provided I behave myself. Will keep you posted. And thank you everyone for all you support.
Love,
Dan