Email Correspondence from DJ and Lisa

12-25-08

Hello Everyone,

I would like to start by wishing everyone a happy holiday season and say thank you for all the support you continue to send. Since the last update in August, my life has been filled with ups and downs. I returned to work full time in September. Looking back, I think I returned just a tad bit early. I didn't realize how little of energy I had. September was 3 months post transplant and I had my first bone marrow biopsy. I was quite excited to find out that there were no signs of cancer whatsoever. Also in September, our friend and former CEO had a "back to work" party for me at her house. It was a wonderful time and lifted my spirits quite a bit. Thank you Phyllis.

October was an interesting month. I am not sure if all of you know, but I am on a steroid called Prednisone. Prednisone is supposed to help with the Graft vs. Host disease (donor cells attacking me) that I am experiencing. Since things were going relatively well, the doctor and nurse practitioner were weaning me off the Prednisone rather quickly. I started off at 90mg a day and was down to 15mg after a short period. Well, Lisa and I drove to L.A to go to her friend Amy's wedding. On the drive down there (about a 6 hr drive) I started to feel sick. By the time we got there, I was in pretty bad shape. We called the on-call physician and before I knew it, I was all the way up to 80mg of Prednisone. It was amazing how quickly I felt better, but being on Prednisone is not a good thing. It was also amazing/a good-thing that my cell phone died b/c my doctor called and actually wanted to admit me into the hospital. Needless to say, I didn't get that message till later and was still able to attend a great wedding!!! Also in October, my amazing cousin Michelle completed her FIRST marathon with Team in Training. Her team name was "Team DJA." Thank you for your dedication and support Michelle, love you.

The last two months have been filled with days of ups and downs. Some days I feel good, others I don't. The graft vs. host disease has affected my appetite and I am struggling to keep my weight on. I am back down to 15mg of Prednisone, however they are weaning it off much slower. According to the doctor, it may take 3 months to get off these last 15mgs. Prednisone is a nasty drug. Within the last three weeks, I have had trouble walking over 1 block without my right leg going numb. Once my lower leg goes numb, I have little control of my foot and it is hard to walk. Just recently, I started experiencing the same problem with my left leg. It is quite frustrating when it happens b/c I have to just stand there b/c it is too difficult to walk. My doctor said that since Prednisone breaks muscle down, it could be wearing down the muscle around my spinal nerve which is causing it to become trapped. They are scheduling a MRI of spine to see what's going on.

On a more positive note, I had a 6 month bone marrow biopsy which was negative as well. We are still waiting for a blood test, called PCR, which is more specific; we should have the results after the holidays. I also became God Father to my nephew Joey in December. I wasn't able to be there but plan on flying out there as soon as it is safe for me to travel. Other than that, not much has gone on. I still take everything one day at a time. I will have another blood test (checking for cancer) at 9 months and then another bone marrow biopsy at 1 year. I am still going to clinic every Tuesday, and will hopefully be switching to every two weeks in Jan. On a final note, I want to give a special thank you to my brother and sister-n-law. They are both running the Walt Disney World Marathon in Jan. in support of raising awareness for Leukemia. They have completed all their big runs and are ready to break records. You two are amazing and I appreciate everything you do and have done! Well that's it for now. Again, thank you all for the emails, calls and inquiries. I hope everyone is doing well, please stay in touch (better than I do).

Happy Holidays!  
Dominic Adorno CPTC
Manager of Recovery Services
California Transplant Donor Network
dadorno@ctdn.org

8-7-08

Hello Everyone,
 
Sorry it has taken me two months to send out an update.  I have had some ups and downs since I was discharged from the hospital…but mostly I have just been lazy J! 
 
So what has happened since the transplant?  The first couple days being home were great.  I was so tired of the hospital atmosphere, the daily…and even worse, nightly routines.  However, shortly after being home, things started to get miserable.  My taste buds were completed destroyed by the chemo so it was very difficult to find something to eat that didn’t make me nauseous.  Because I wasn’t eating, I continued to lose more and more weight (about 32-35 lbs since I was admitted).  To make things worse, the levels of the immunosuppressant medication I am on were way off and were really high.  The levels affected my kidney function; I was constantly nauseous, had pain in my joints and was having headaches.
 
Things started to improve a bit after a couple of weeks; however, I eventually earned the infamous Graft vs. Host disease.  Graft vs. Host disease occurs when the donor’s cells (graft) starts attacking me (the host).  Graft vs. Host disease can manifest itself in many ways, some more severe than others.  My GVH showed up as a rash on my hands, arms, legs and a small amount on my back.  There are 4 stages of GVH and I was diagnosed w/ stage 2.  The standard treatment for GVH is steroids…and that is what I got!  A little funny story to go with that:  My doctor came in to tell me that he was putting me on the Prednisone and reminded me that these were catabolic steroids (break down muscle).  I asked that he supplement some anabolic steroids in the mix…he didn’t agree J.   I was also given some topical steroid cream for the rash.
 
Within a couple days, the rash was mostly gone.  Unfortunately, my luck hasn’t been the best and the rash has returned in other areas (chest, back, thighs and neck).  We are following the same treatment, but need to watch that it doesn’t spread to my organs.  I also volunteered to become part of a national research study.  200 patients around the country are being enrolled in a mesenchymal stem cell infusion study.  What does that mean?  Mesenchymal stem cells are stem cells that usually specialize into bone and cartilage, ect.  The research suggests (and has shown) that these stem cells, along w/ the steroids, have a dramatic effect against GVH.  The only problem is that the study is a double-blinded randomized study.  Randomized means that I will either get the real thing or a placebo (saline); Double-blinded means that neither the researchers nor my doctor will know what I am getting until the end of the study.  There are no known risks associated with the study so I went for it.   I did get a free CT of my chest/abdomen/pelvis out of it to see if my grandparents or parents left me any aneurysms or other things I didn’t need!  
 
There are many side effects that come along w/ Prednisone, most of which are bad.  However I am enjoying the good ones as of now.  I am eating like a horse and have a lot more energy.  I am starting to work out slowly…this way I won’t end up with just a Buddha belly (again).  Overall, things are progressing and I am doing well. 
 
I will be doing a much better job updating everyone in the future, I promise.  That brings me to my website!  I am not sure if you are all aware, but my brother, cousin and Dad/Marla have created a beautiful website for me to keep in touch with you all.  They did such a wonderful job on it and I am very thankful.  The website is www.dominicadorno.com.   From now on, I will post my updates there.  The website also has a blog section for all of us to chat back and forth, which I will start jumping on. 
 
Well, I hope this email finds everyone in good health and in good spirits.  I really appreciate all the support and emails that you sent to the yahoo account and my email.  I read every one and am very grateful for your continued support.  I will try to start responding to you all individually to thank you.
 
Take care everyone,
 
 Dominic / DJ / Buddha-Belly-2-B
 
 
 
 
 
Dominic Adorno CPTC
Manager of Recovery Services
California Transplant Donor Network
dadorno@ctdn.org

6-22-08
Hello All-
Thank you for all of the calls, cards and emails, thank you for all of the love and support. I have a feeling this will be short and sweet.
DJ is home and healthy. Sue slept with DJ last night at the hospital. The RN drew labs early to try to get him out by 1100, yesterday the MD said around 1300. Well, the day nurse apparently had a different agenda. Dominic needed Magnesium via the IV. The day shift nurse didn't hang the Mg until 1000, which means +4 hours from that point. Besides the Mg, DJ, Sue and I needed discharge teaching from the Pharmacist, teaching on the PICC line, his PICC line dressing changed and discharge instructions. What a better time than the 4 hours we were just waiting to get all of that stuff done. Again the nurse was not the best; after we called her when each bag of Mg was complete, and that we wanted the teaching and the dressing change, she sent in other nurses to do it.
So on the 27th day in the hospital DJ walked out with a bag in tow at 1615! Home free...at least for a day. Dominic will have to go to clinic for multiple hours on Tuesday and Friday, until further notice. He is under house arrest for 30 days, and then his next milestone has been reached. He can take walks in the evening (after the sun goes down). The sun can trigger Graft vs. Host Disease (I'll let you do the homework on that).
You may be curious what DJ did when he first arrived home. Played with Bonner for a few minutes. Kaiser, one of Dominic's friends who is staying with us, offered to get Dominic McDonald's, and of course he accepted, he had chicken tenders and turned on the television and watched UFC. Nice to see that all of this ordeal hasn't changed him too much.
He is on lots of medications; Sue and I are going to sit down and make sense of all of it and organize it in some fashion.
With Chemo and the BMT behind us, it is on to step 2. He is not out of the woods yet, but he is well on his way. Thanks again for everything; I will talk to you again soon.Best, Lisa

6-18-08
Hello Everyone-
Thank you so much for all of the cards, thoughts and prayers. They really make DJ feel very special and loved...which he is!
Today is day +14/-7, Dominic's mouth sores have all but resolved, as his WBC count continues to rise, it is now 6. However there is some residual throat pain that is still making it difficult to eat. I think he became a bit aggressive with the suction a few days ago. I had mentioned that he was on a Dilauted PCA, Dominic took full advantage of having appropriate pain control. He was allowed to push the button every 15 minutes, which he did, but it has its downfalls as well. DJ started getting a bit loopy, asking if he put popsicles around the ice cream sandwich? And making an odd reference to Anderson Cooper. Unfortunately it didn't end there. That Sunday night into Monday morning he began having some hallucinations. His dad was asleep in the super comfortable chair/bed next to him and Dominic would speak to him while his dad was fast asleep, one of the DVDs came at him in a 3-D fashion and he pictured me in the room and I was not there. In the morning when it came time to have his blood drawn, the nurse asked him where his catheter was and it was not in him where it was supposed to be. Dominic looked down to find blood on the bed. We speculate that during the night he pulled it out while the dilauted was having its psychological effects.
New IVs were placed, an X-Ray preformed and DJ was no worse for the wear. He doesn't have a new line as of yet but will have one placed before he goes home. That is right, Dominic is coming home! The nurses and doctors are planning on him coming home either Friday or Saturday of this week. If this is true he has completely obliterated his goal of June 25th. I am personally so proud of all of his hard work. Sue, Dominic's mom, and I had a caregiver meeting with the Nurse Practitioners about some important things to know and be aware of when he gets home. This afternoon we picked up 10 of the medications Dom will have to be on when he gets home.
DJ is overall feeling okay if it wasn't for the sore throat. Today he has felt a little funky and hasn't really wanted to eat. Tomorrow will be better. As for the infection, he is still being treated with antibiotics, but hasn't had any fevers since the catheter was pulled out! We all suspected that the catheter was the source of the infection, so it likely would have had to come out, it just didn't need to be in such a dramatic fashion. At least Dominic didn't have any pain :) DJ is still on the PCA still, but that will be stopped tonight, and all of the medications will be changed to pill form. Dominic needs to eat more have a "normal" GI system as far as eating and eliminating. He needs to be off the IV pain medication, have no signs of active infection, and be feeling well overall.
Hopefully my next update will be about DJ's homecoming...look for that title coming soon.
Best, Lisa

6-15-08
Hey everyone-
Thank you everyone for the continued support and Happy Father's day to those fathers who are getting this email.
The day after I wrote the last update (so day +8), DJ got his first mouth sore. Today is day +11 and is mouth is essentially on fire. He is having trouble eating and drinking, but is making an effort to keep up his walking. They have started him on a PCA (patient controlled analgesia) which gives him a continuous infusion of Dilaudid and he is able to push a button for extra pain medication. It has decreased the pain from 10 (on a 1-10) scale to 4-5. Still not that great. He has suction at the bedside to suck out the secretions that he is now unable to swallow.
Yesterday the nurse noticed that his Hickman catheter sites looked red, so he was cultured for an infection and started on antibiotics. Later yesterday after the antibiotics were started Dominic had a fever, so he was started on another antibiotic.
All of the narcotic medication is taking a toll on his GI system. He hasn't been to the bathroom is a few days, he is a bit uncomfortable in that department too. On a different note this morning it looks as though DJ is starting to lose his hair. There are a few lone chest/arm hairs in the bed. If he is fully clothed one may not be able to tell i.e. not a big change from his usual hair style, but his Italian stallion chest hairs will be gone.
We have set a goal of leaving the hospital by June 25th, that will be 3 weeks to the day after the bone marrow transplant. We hit a few milestones today, we are now on day +11(days after BMT) and -10 to discharge. So we are beyond the 1/2 way mark to discharge! Also his WBC's are starting to rise yesterday they were 0.2 and today they are 0.6! This is fantastic for a few reasons, once his WBC's come up the mouth sores should go away, and it is the first sign of engraftment (that the transplant cells are working in his body). This email couldn't be a total downer.
Don leaves tomorrow, I am glad we will be able to spend today with him for Father's Day. We will miss him, he does so much work around the house and more importantly he is a real comfort for Dominic! Sue arrives tomorrow as well, we can't wait to see her. Sue will be here for the long haul, she will drive Dominic to appointments after he gets home, she will make food for him, in the event that he can't (I don't suppose that the BMT gave him skills to cook for himself).
We will talk to you soon, again thank you for all of the cards and continued support.
Best, Lisa

6-12-08
Hey All-
I want to thank you for the continued support. Any cards that have been sent I bring to the hospital daily, Dominic really appreciates them, thank you.
One thing I forgot to include in the last email was everybody calls the BMT a new birthday for his immune system. So at the end of the day all of the nurses sang Happy Birthday and presented him with a large cupcake. That was very special.
Since that day, we have been waiting for the fall out. We are now at day +7 and every day we have watched his counts fall, and we are finally there. In the last 4 days Dominic has received 6 units of blood and 1 bag of platelets. As of last night he became neutropenic, which means he is at a very high risk for infection and needs to wear a mask outside of his room. All of this is to be expected and everything is going as planned.
His walking has petered off a bit, he is trying to walk 2 miles a day. He need encouragement to do more...so I encourage you to help him too. His appetite is coming back, he still eats his desserts first, so you know he is feeling better. His abdominal cramping has improved and he is feeling pretty good everything considered. Dominic's spirits are good, I think the boredom is starting to get to him, so we have set a new goal. We are now counting down the days to discharge, today is -14. That will put him at 3 weeks post transplant; anything sooner is an even bigger accomplishment.
Today is primary doctor came by and every week all of the MD's have a meeting about the BMT patients. They are trying to organize a transfusion clinic for patients who could be outpatients and Dominic made the outpatient list! So that is really promising and optimistic.
From my prospective things have gone better than planned and I am really happy with how things are going, that is not to say that he is totally out of the woods, but things are going well. It is like we keep waiting for the other shoe to drop...I hope it never does. The doctor said that if he still feels this good by Sunday then he feels as though that window that could have been the worst is behind him.
Dominic's dad and step mom have been here since Sunday. It has been so wonderful to have them here and I know how grateful DJ is to have them here as well.
I will let you know how things are going is an update in the near future.
Best, Lisa

6-5-08
Hey everyone-
Thank you for all of the continued support over the past few days and please feel free forward these emails to whomever you feel appropriate.
Yesterday was the Bone Marrow Transplant (BMT). The procedure itself was very simple, but the emotional component was...for me at least...overwhelming. It was a very little bag of 5 million stem cells (with a few blood cells). It took 15 minutes to infuse. Dominic said that he felt tingling starting in his heart that progressed all over his body. The knowledge of how much power that little bag has is incredible.
Shortly after the infusion DJ began to have some back pain (kidney pain). His donor is an A blood type and DJ is a B, so DJ's B blood cells were attacking the A blood cells and vice versa. The destruction of the cells caused the kidney pain. He was pretreated to ensure that his kidneys remained undamaged throughout the process. The stem cell circulated and landed in the bone marrow and a at work curing him from cancer. It was a really positive day and it was nice to be able to be a part of it.
Today has been a bit more difficult. The constipation has morphed into something some might think is less desirable and he is having significant stomach cramping. He has taken a large dosage of pain medication which has made him feel tremendously better. We are now trying to pack in as much solid food as possible before the elimination and his ability to intake gets worse. We soon anticipate that he will have mouth sores which will make it difficult to eat.
The chemo is working, Dominic's counts continue to drop, in fact he needed 2 units of blood today (that may also be in part to the incompatibility reaction he had from the transfusion). As a reminder he will soon be neuropenic, so if anyone is going to send anything, no plants, flowers, fresh fruits or vegetables. If you are going to visit, ensure you are feeling well and please get in contact with me to see if he is up for visitors.
Thank you again for all of the support, and I will touch base in a few days.
Love, Lisa

6-2-08
Hello everyone-
For those of you who don't know me, I am Lisa, Dominic's wife...Wow I have never written that before, feels funny. Anyway, I want continue as Dominic did and thank everyone for their continued support. There have been so many emails, calls, texts and I am trying to get back to all of them, but it is proving to be more difficult than I thought would be. I also would like to say that my emails may not be as joyful to read, as I don't have the same eloquent writing style that Dom does, and often my sense of humor is quite off kilter. That being said here is what has been going on the past few days.
Dom was admitted to the hospital on Tuesday, Tuesday morning he had a catheter placed, called a Hickman. This Catheter will stay in long term, for the duration of the treatment and recovery. Then we drove over to UCSF, to be admitted into the hospital room. He is in the same room as when he was first admitted into the hospital. For the most part the staff is great, the first RN that admitted him needs some improvement, and I am allowed to judge as I am RN extraordinaire myself! The view however leaves something to be desired! He stares right into the Neurological ICU windows, the ICU he frequented as a transplant coordinator.
Chemo started on Wednesday, they drew levels of the chemo to make sure he was getting enough, and the big guy was not...so they had to up his dose. The increased dosage came with increased side effects, though overall not too terribly bad. He is having some stomach cramping, nausea and (he will kill me for saying this) constipation. He is getting around the anti nausea medication which seems to be working pretty well. The last day of chemo was yesterday!!!!! Then he has 2 days of rest and on Wednesday is the bone marrow transplant!
His primary complaint is boredom, you can only read, play video games, watch TV, surf the net, listen to music and walk laps around the floor so many times in a day. Dom has a goal to walk 4 miles a day. One mile is 12 laps around the floor. My brother arrived on Thursday and is leaving today; Tony, Dom's brother, is arriving today and I will write another update with all of the other visitors to follow.
Again, thank you for all of the repeated and continued support! We are so touched by the outpouring. It is especially touching to hear about people we don't even know praying for Dom. For example my friends, husband's, great aunt who lives in San Jose says a prayer every night. Please feel free to email, text, call me any time. If I can talk I will if I can't talk...I will get back to you at a later time. Thank you for all of your understanding and caring. Talk to you soon.
Best,
Lisa

5-26-08
Hello Everyone,
The time has come for me to embark on my long journey full of twists and turns…some of which will be cause for celebration, others which will be cause for an emesis basin. On Tuesday, I am to arrive at UCSF Medical Center at 0830 to have a Hickman catheter (large IV line for chemo, meds and blood transfusions) placed. Shortly after, I will be admitted to the hospital to begin the transplant process. My chemotherapy will start on Wednesday and last until the following Monday, June 1st. I will have one rest day which will also be the day my donor donates his marrow. What I know about my donor is this…he is a 29 y/o male and has the A blood type (that’s all…other than the fact that his graciousness will save my life). They are obviously being very guarded with the donor information to protect his anonymity, just as we would be in organ transplant. Interestingly though, I have the blood type B currently and will soon become an A! All those years I struggled in school to get an A and the answer was right here! A co-worker also reminded that if I was going to commit a crime, this would be the perfect weekend to do since my blood type will be changing.
On Wednesday June 4th, I will have the Bone Marrow Transplant (BMT) which is basically an IV infusion of the donor’s stem cells (just like a blood transfusion). It is anticipated that I will be in the hospital for 3 to 4 weeks if everything goes well. At that point, I will go home under the jurisdiction of a 24 hr caregiver….a role which will be filled by my mom…the master drill sergeant (right back in the military again). From there on out, my days will be filled with VERY frequent hospital visits and morning, afternoon and evening naps; basically the daily routine I have had for many years minus the hospital visits. From there, the first big milestone will be day +100; it is at this point where they feel my immune system will start to be stronger.
Today I was fortunate to talk with a good friend who has gone through this process himself and is doing great. Lisa and I had a really hard time after reviewing the consent form and going over the process in detail. (I have attached it for anyone who is interested in reading it…the good and the bad. It does a good job of explaining the process and the risks associated). My friend told me not to focus on those numbers because those numbers are not meant for people like he and I. He uses the word persistent to describe himself…not stubborn. I believe Lisa calls me stubborn so I will use that one and keep it for me. He told me that each day may get better, but it may not…and if it doesn’t, that’s ok too because it will eventually. He gave me the reassurance and strength I needed as I get ready for my transplant, and for that I am grateful. Thank you sir!
All of you have been very supportive, so thank you as well. I will carry all of the positive energy you have sent with me and beat this. I will do my best to send updates when I have the strength. Lisa has created an email address for everyone to contact her at because she might be quicker at responding than me. Please do email me though!!!!! Her email address is guertinlc@yahoo.com.
I am on the road to being cured!!!!! …and when I am, I am going to party my ass off J.
Take care,
Dominic Adorno CPTC

4-24-08
Well it has been a little over two months since my last update and Lisa has been pushing me to get one out. I apologize for the delay but I had been hoping to get some news about a potential donor before I sent one. My last update left off with Lisa and I preparing to got to Maui. What a lot of you didn’t know was that I bought Lisa the trip to Maui for Christmas with intent to propose to her. The day I was diagnosed, I told Lisa about my plan. After a lot of discussion, we decided that we would just get married in Maui. The week before we were supposed to go…the doctor told me that my blood levels were too unsafe to travel and said he didn’t want us to go. Fortunately, my brother and sister-in-law were in town and they helped Lisa and I plan a beautiful wedding in two days. Lisa and I got married on Feb. 29th on the beach in Carmel, Ca. I have attached one of my favorite pics (just a casual shot on the steps after the ceremony).
My news about a donor finally came yesterday when the transplant coordinator contacted me to let me know that I had very good match. Needless to say, the news came with mixed emotions. Happy b/c I am heading towards a cure; Nervous because it brought me back to a place where my cancer became real again. I think the reason I had been slowing in sending out an update is b/c I felt so well and was trying to forget that I am sick. The medicine I have been on has almost got me into a complete remission. All my blood levels are normal and the weight has come back on (a little too fast). My doctor gives patients 18 months to get to a place that I am at after 3. However, it is very difficult psychologically to think about moving forward with a procedure that is very dangerous when you feel so well.
My transplant is being scheduled for the last week of May/ 1st week of June…depending on the donor preference. Between now and then, I will be having a bunch of tests done to evaluate my heart and lung function, amongst many other things. As things move closer to my transplant, I will be sending more updates out more frequently. During the next couple of weeks, I plan on doing some traveling and getting as ready as possible, both mentally and physically. Thank you all again for your continued support, it is much appreciated.
On the road to being cured,
Dominic/ D.J.

2-11-09
I would again like to thank everyone for the continued support I have received through emails, cards, phone calls etc. The information we have received over the past two weeks has provided the sense of direction we have been waiting for.
Two weeks ago this Wednesday, I went to the clinic and had the first set of normal labs since being diagnosed on Jan 10th. My WBC was 9 (normal is 3.5 to 10) and my platelets were 153 (normal is 140 to 450).
As you all are aware, we have been waiting to hear if my brother Tony was a match to be my bone marrow donor. Unfortunately the odds were not in our favor and on Friday that week, I found out that Tony and I were not a match. Again, this was no surprise if you were to compare our golf games (he has a nasty slice J). On a serious note, Tony has been there for me every step of the way and I can’t thank him enough.
Fast forward to this last Wednesday; when Lisa and I paid visit to our favorite place of late, the clinic! After having my labs drawn and waiting to see the doctor, I received some long awaited good news from the transplant coordinator. Her initial search of the donor registry revealed “hundreds of potential donors” and she felt confident that she would find an excellent match. She sent away for blood on 10 of the potential matches and should have results within a month.
Soon after, we met with the doctor and discussed my lab results. My labs had dropped much lower than the week before and were/are at a point where they need to be monitored much closer. My WBC’s were 4 and my platelets were 30! However, the doctor said that these results were not all that unexpected. He explained that my marrow, the place where blood cells are formed, was completed filled w/ the leukemia cells. Now that those leukemia cells are destroyed, my marrow is basically empty and it will take some time to start producing normal, healthy cells. What this means for me is more blood draws and more transfusions.
Saturday and Sunday involved just that….trips to the clinic for blood draws and transfusions. I finally received 2 units of blood on Sunday because my hemoglobin and hematocrit levels were low. Unfortunately, my platelet level was not low enough to receive a transfusion; it was only 13J. This morning I went to a lab in Berkeley to have more labs drawn and late this afternoon I received the call I was expecting. My platelets were 5 and I needed to get to UCSF for an emergent transfusion. I rushed over to UCSF to get my transfusion, all the while thinking about what would happen if I got into an accident w/ a platelet level of 5.
I have another appointment scheduled at the clinic for this Wednesday to have more labs drawn. Unfortunately, Lisa and I have a trip planned to Maui next week and may not be able to go b/c of my crazy blood levels. We are keeping our fingers crossed and we are looking forward to this trip!! Well that is it for the update…sorry it was a long.
Again, I appreciate all of your support and will catch up w/ you all soon.
Have a great week!
DJ / Dominic

1-29-08
Hello Everyone,
I would like to start off each email by saying thank you for the continued support and prayers. I have heard from old friends, as well as new ones, which really felt great (Thank you all!!!). Needless to say, the support has been overwhelming. That being said, here is the latest. Last Wednesday, I had a follow-up appointment w/ the hematologist. My mom, dad and Lisa were able to join me which was great for me, and for them. My step-mom was with me the week prior but had to leave to return to work.
The appointment went well. My white blood cell count is heading towards normal levels (now 17; it was 41 the week prior). For those who were not part of the last email, a normal WBC is between 3.5 – 10; my original WBC was 226. I gained 8 lbs back out of the 30 that I lost. I feel better than I have for months! The doctor feels the medicine is doing its job and bringing me out of the blast crisis phase…and hopefully heading towards the chronic phase or morphological remission. However, the only way to truly know which phase I am in is by doing another bone marrow biopsy.
My brother received the kit for his blood today. Amazingly, he was able to get his blood drawn at a local hospital and Fed Ex it back all by the end of the day. We should know if he is a match by next week; we are keeping our antigens…I mean fingers, crossed J. From here on out, I will go to clinic once a week to have my blood drawn. If my brother is a match, I will most likely have my transplant in the first week of March. If he is not a match, we will have to find one. The transplant coordinator is confident that we will find a match since I am a generic Caucasian J. She feels that it will most likely take a few months to find a match which means the transplant would be pushed back until May…possibly longer. Many of you have offered to be tested to be a donor. We have discussed this w/ the transplant coordinator and the best way to help is to “pay it forward”. There is not a way to be tested for me only, it comes from a National Registry and by wanting to help me, others are helped as well. Another thought is to donate blood. I have already required 4 units of blood, and the doctors anticipate I will require many more.
I have another appointment this week Wednesday. If anything significant occurs, I will update you all. If not, I will wait until I hear whether or not my brother and I are a match before I send another update. Soooo…thank you all for your support. Please be patient w/ my responses to your emails….I am already behind a couple hundred (I guess that’s not too bad).
Take care everyone,
Dominic Adorno CPTC

1-19-08
Hello Everyone,
I apologize for the mass email (and for those that are receiving this as a duplicate) but I would like to take this opportunity to thank you all for the love, support, help, words of encouragement, offers and food that you have sent over the last week. This past week has been quite overwhelming for both Lisa and I. At this time, I thought it would be easier to send an email updating you all on the course of events that have occurred over the past week rather than calling you all individually. I will continue to send frequent updates as things unfold (please feel free to let me know if you do not want the updates). Some of you may be hearing this for the first time, and for that I apologize, others are just learning “all” of the details now; so here they are.
Over the past couple of months, I have been losing weight (18-20 lbs), having night sweats and was experiencing a decrease in my appetite. Many people had commented on how much weight I was losing, something I really didn’t pay too much attention to. It wasn’t until seeing pictures of myself on New Year’s Eve that I realized how skinny and pale I looked.
On 01/08 I decided to pay a visit to the doctor. I was in the process of switching PCP’s and was fortunate to have received a good referral from one of my friends/co-workers for a new doctor. My PCP was very thorough in his assessment. He explained that he was concerned about several things including cancer (prostate, colon, testicular and leukemia), TB, Hyperthyroidism and anything viral (Hep B/C and HIV). He immediately sent me to the lab to have many labs drawn. Since I was in the medical field, the doctor authorized the lab to fax me the lab results. The results were expected to come back in 4-5 days.
As you could imagine, the next couple days were very difficult. Every day I was thinking about what could be wrong. Also during these couple of days Lisa and I noticed the left side of my abdomen was getting really hard and a bit distended. We were able to palpate a margin that extended all the way to the right side of my abdomen. We contemplated going to a local ER but anticipated the results would be back soon; so we decided not to go.
On 01/10, I went to work as normal. All day I kept thinking about my lab results so I decided to call (even though it had only been 2 days). When I called the lab, they told me that the results were back and that they would fax them to me. I closed the door to my office and began to read them. Hep B…negative (whew), Hep C and HIV…negative (whew)…..PSA levels (prostate cancer)….normal (whew)….electrolytes…all within normal limits. Then I looked at my complete blood count……EVERY SINGLE LAB WAS EXTREMELY OUT OF NORMAL LIMITS. I scrolled down to the bottom of the page and noticed a diagnosis that read, “results consistent with ACUTE LEUKEMIA…..results verified and confirmed w/ the pathologist.” Needless to say, I knew this wasn’t good. I immediately called Lisa at work and told her the news. Neither one of us were able to contain ourselves. I immediately left work w/ the hopes of getting an appointment w/ my PCP.
At the same time that I was leaving work, Lisa was on the horn doing what she does best….MAKING THINGS HAPPEN!!! She called my PCP and scheduled me for an appointment before I could. She then called a physician that she works with whose husband is a hematologist at UCSF (where Lisa works). This physician called her husband, who called a colleague, who ended up calling us about 30 minutes later. Lisa told him…I want the BEST and he replied….I AM ONE OF THEM. He told us to skip the PCP visit, pack a bag and get to the hospital immediately. He also asked us to fax the lab results to him before we left. Meanwhile, Lisa and I were losing it. We quickly packed a bag and headed to the hospital. About two blocks from the hospital, the physician (Dr. Martin) called us. He told he had a bit better news. After reviewing the labs, he was 99.9% sure I had Chronic Myeloid Leukemia (CML), not acute. He mentioned that this was the most treatable type of Leukemia there is. He mentioned that there was a drug called Gleevec (Imatnib) that can effectively treat CML in the chronic phase, the phase the doctor believed I was in based of the blood results. What a relief!
The next several days were very busy w/ Clinic visits. My kidneys were starting to back up and I required IV hydration 3 days in a row. I was also very anemic. For the medical people, my H&H was 7 and 22. On Friday 01/11, I had a bone marrow biopsy to definitively say what type of Leukemia I had, as well as what stage the Leukemia I was in. There are three stages of CML, chronic, accelerated and blast crisis. As noted above, the doctor believed I was in the chronic phase. The day of the bone marrow biopsy I started on a medication to decrease my white blood cells, well it worked and sent me to the emergency department with a fever of 102.4! Fortunately they released me later that evening.
On Wednesday 01/16, I was scheduled for a visit w/ the CML specialist and to receive a very much needed blood transfusion. While in clinic, Lisa and I met w/ the fellow (specialist in training M.D). She started reviewing the events of the past few days and began asking questions. She mentioned that the transplant coordinator would be in to meet w/ us to begin going over the procedure. TRANSPLANT COORDINATOR???? Why would she need to meet w/ us when bone marrow transplant wasn’t needed b/c I was in the chronic phase? Well, as you could imagine, Lisa and I were about to receive some scary news. I wasn’t in the chronic phase….I was in the blast crisis phase and needed to be admitted to the hospital. Well again, we lost it.
We finally met w/ Dr. Shah, the CML specialist. Dr. Shah was one of the principal investigators in the development of Gleevec, the med I was supposed to take. Dr. Shah told us that the bone marrow biopsy results came back and that I was in blast crisis. Untreated, I would have six months to live. He told us what the plan was and which was this: Start me on a medicine called Dasatinib (which he also developed) to bring me from the blast crisis phase into remission or the chronic phase, then move forward w/ a bone marrow transplant ASAP. The reason he didn’t want me on the Gleevec is b/c people in blast crisis phase would only be in remission or the chronic phase for short while before the cancerous cells would mutate and develop a resistance to it (then that option is gone). The Dasatinib is more powerful and is able to control 45 or so of the possible 50 mutations. Also, if I were to receive a bone marrow transplant in the blast phase, it would have a 10% chance of success. If I received the transplant during remission or the chronic phase, it has a 70%-80% chance of working.
I was then admitted to UCSF Medical Center for the next two nights. I was started on Dasatinib and followed closely. I received two more units of blood which felt great! I responded to the Dasatinib w/o complication. My WBC count has gone from 226 to 41 (normal is usually less than 10). My red cell count is normal. I was ready to be discharged…all we needed was the insurance company to approve the Dasatinib. Well…as you can imagine, it didn’t work quite that smoothly. Since Gleevec is the drug of choice for CML, the insurance company wanted research articles to defend why I was receiving this drug…..fortunately for us, my doctor did most of the research. The fellow, pharmacists and nurses were sending everything possible to the insurance company. I called 3 times, my HR manager called. It was 3 pm on the Friday proceeding a holiday weekend. If I didn’t get approval, I would have to stay at least until the following Tuesday. Finally the insurance company made their decision…..DENIED. I was in shock. Who were they to decide what was the best treatment for me? I couldn’t believe that they would rather pay for me to be in the hospital, still receive the medicine they denied, than to just approve the medicine!
The hospital made the decision to give me six days worth of the medicine and release me w/o the approval of the medicine by the insurance company. They would keep trying to sway the insurance company during those six days, but if they were ultimately unsuccessful, I would need to be re-admitted. Wouldn’t you know, at the 25th hour, the insurance company approved the medicine and I was released. My parents have all flown to CA. and are staying w/ me. I have a follow-up appointment on Wed to see how the medicine is working. Soon I will need another bone marrow biopsy to see if I am heading into the chronic phase and hopefully remission. In the meantime, I am keeping my fingers crossed that my brother is a match for transplant (he has a 25% chance). It is not looking good however, b/c if you compare us, I am smarter and better looking. All kidding aside, my brother has stepped up and is ready to do whatever is needed.
This is the most detailed email you will receive; I promise the future updates will be shorter. I want to thank you all again for your continued love and support. Thank you for all of the warm thoughts and prayers, I can feel them. Feel free to write me or Lisa at anytime. I know this is information is hard on everyone as well, I will not disappoint you! I will talk to you again soon.
Dominic Adorno CPTC