The results at the end of just one cycle on the trial drug have been amazing! His blood counts have come up enough to go 4 weeks without needing a blood transfusion and his immune system has come up to allow him to go off antibiotics, get off the neutropenic diet, and live a little less restrictively for fear of getting an infection that could be deadly. It is also allowed the team to schedule to have his Hickman Central Catheter removed on the next visit. They have been wanting to take it out for fear of it causing an infection, but his immune system has been too low. Now, however, they feel it is strong enough to handle having the Hickman removed and having a port put in on the other side of his chest. His platelets are still under the recommended 50,000 for having this procedure done, but they will give him a unit of platelets during the procedure to help counteract any possible bleeding complications. If you have never seen someone with a port, it is a button-sized device that goes into a central vein, under the skin. So, when they need to draw blood, or give him an injection, the needle will go through the skin. Here is a brief overview of catheters and ports. He will have a catheter removed and an port put in: Port information.
Just to give you a comparison of how his counts have improved here is the 4 week difference:
4/20 4/30 5/7 5/14 5/21/15
Hemoglobin: 7.6 8.5 8.7 8.6 9.0 (low still: normal range 13.0 min.)
White: .47 .83 1.47 2.03 2.92 (low still; normal range 3.7 min.)
ANCs/Neutrophils: 00 .53 1.07 1.66 2.39 (now falls in lower end of normal)
Platelets: (1000s) 34 41 38 36 35 (Low still normal 150,000 min,)
Bilirubin(total): n/a 3.8 3.9 3.0 2.6 (want to drop; normal 0.0-1.5)
This is amazing! In just one cycle, he has seen this much improvement! You can see how he is no longer Neutropenic (when ANCs/neutrophils are .50 or lower) or no longer needs Transfusions (thresholds for Todd was 8.0 or lower). The elevated bilirubin is caused by the drug, however, you can see the numbers are dropping as his body adjusts better to the medication. The Indirect bilirubin numbers are fine and the research team is not worried about the elevated total bilirubin, as it would take his number to be 5x the normal or at 7.5 before they would adjust the dosage or make a change in his trial protocol. The only side effect of the higher bilirubin has been some jaundice, especially in his eyes.
The best news is, that the first bone marrow biopsy from Day 15, cycle 1, showed a normal range of blast cells in the bone marrow itself. There was still signs of diseased cell (ringed blasts), but the drug is helping to block the mutation to allow his blood cells to mature, leaving less blast cells in the marrow. There is also still chromosomal abnormalities found in the cytogenics results, which still show he is having the 5q deletion.
He had a second bone marrow biopsy done on Day 1, Cycle 2, but we have not received any results back from those yet. I asked the doctor if he would be considered to show a "response" or if they could say he was in remission, but she made it clear that Todd still has a way to go to ever say he would be in remission. Under the drug protocol, there are established guidelines for what constitutes a "partial response," a "complete response," or "remission." She stated that Todd would always have the diagnosis of MDS, actually relapsed MDS, that it would never go away. The only "curative" treatment was the transplant, and that failed. So, he cannot be "cured" of the disease at this time, but who is to say that there won't be a new curative treatment in the future. Research and technology are moving so fast in this field, that anything can change in a year. For example, this drug and the trials were not available a year ago!
I guess it would take not seeing any blast cells, any chromosomal deletions, and for his counts to be at a certain level before they can use the word remission. While he is not there yet, it is early in the treatment, and I feel confident that he can at least reach the level of a partial response soon.
The doctor will not categorize the results as anything but they can see that the drug has produced a "hematological response.*"
I honestly feel so relieved that I don't doubt that he is getting better! While most of his counts are still below normal, we have already achieved the two main goals Dr. Stein, from Memorial Sloan Kettering Cancer Center in New York City, had in mind for Todd: to lessen his transfusions (which were 6-12 days apart) or to NOT BE transfusion dependent, and to NOT BE neutropenic. The idea that they now hope to remove his Hickman catheter and put in a port is wonderful! That means I won't have to flush his catheter lumen's every night, change his bandage and line caps once a week! He will only need to have the port flushed monthly. I'm not sure if that is something I will have to do, or whether a nurse will do it at his appointments. He will also be able to shower without covering it, and hopefully swim this summer!
Since he has he not been transfusion dependent, we haven't had to run to the local oncologist's office once or twice a week to have a CBC drawn to check his blood counts. That's a lot less running!
The first cycle of the study was a bit demanding on our schedule, having to go to Cleveland Clinic every week, and sometimes stay for 3 days, but that is behind us now. With the start of the second cycle, we only have to be there on Day 1, which we just did on May 21, and on Day 15 for a short visit! The same goes for Cycle 3. Day 1 will be a long 10-12 hour day (which will be mean a 3 day stay) and then he only has a short visit again on Day 15. After Cycle 3, he only has to go on the first day of each cycle from there on out! These days will be the long 10-12 days again, but we might be able to resume a more "normal" routine when all of these appointments are no longer necessary. All this is assuming that the drug continues to help and Todd responds positively to it, but I feel confident it will!
Todd began seeing a physical therapist finally for his shoulder stiffness and pain. It has helped some, but he still limited in using it. Our chiropractor had seen Todd before the transplant and then after, was in shock seeing how much muscle mass Todd has lost all over, but especially in his arm and shoulder. He felt that without the lack of muscle to help support the shoulder, it was making it harder for Todd to use it. Please continue to pray he will find some relief from this pain. It does inhibit his activity quite a bit and he can only take prescription pain medications, instead of any ibuprofen, and he doesn't like to take them and they don't seem to help as much as he would like. It wouldn't hurt if he could put on some weight or at least stop loosing it.
So, his next visit at the Cleveland Clinic will be June 4, 2015.
Family News
Wow, a lot has happened here too! Hannah Lewis graduates this Saturday! We've had multiple year-end award assemblies, choir concerts, etc. to attend. I have been cleaning like mad, with the help of my many good friends and family (Pam, Vicki, Darsie, Dana, Lynda, Mom)! Two of Todd's friends from work came over and painted one of the garages for him (thanks Chris and Pat).
We were able to put our house on the market for sale this past week. It is all bittersweet. We know it has to go, but we will be sad to leave it as it has been a labor of love building it, finishing it, and living in it these past 12 years. Please pray for a buyer, for financing so we can purchase a smaller home, and for the entire selling/buying/moving process.
Two praises regarding finishing my Master Degree: I was able to find a practicum at the University of Dayton in the Library/Archives department starting this fall. I have to submit a lot of paperwork to Kent State in the new few weeks to get it ready, but hopefully everything will work out so I can begin in the fall. I start my summer class and workshop next month! So, I am hoping I will be able to juggle everything once that starts. Second, I was able to get into the class I needed for the fall semester. I was originally on a wait list, but Kent State contacted me last week, offering me an opening in the class! I needed to take this class to graduate this fall, so now I can apply to graduate in December.
It's been an emotional roller coaster this past year. I crave a "normal" life whatever that is! Change has been the only consistent thing in our lives. It would be nice to be able to settle down into a mundane routine and stay in one place for awhile. With our family having to be split-up last fall, with Todd and I in Cleveland, Abby in Cincinnati, Hannah Lewis and Ellie here with my mom, and now having to move from our house into somewhere new, it is a bit traumatic for all of us. I know it does no good to worry about the timing, and wondering who will buy our house and when, or where we will move and when, but I still feel there is a sense of dread or a cloud that hangs over me. It is hard to convenience myself that it is all somehow punishment for some reason. If it is not the cancer and Todd's health, or the finances, then it is the uncertainty of "home" that seems to hang over us. For me, it is emotionally fatiguing, this roller coaster ride we find ourselves on. I just want the ride to stop, so I can get off, sit down, and rest a while. I'm still suffering from vertigo (literally), and I wonder why? Life and this world keeps spinning, and I am trying to keep upright, without falling, despite all the obstacles.
I gave the entire family this little pep talk last year about how God was going to use Dad's cancer, us going to Cleveland, Abby going to college Cincinnati, and Ellie and Hannah Lewis staying here with grandma, to GROW AND STRETCH US in ways we couldn't imagine! I had forgotten about this until someone reminded me of it recently and gave me my own pep talk in return! I know that God continues to mold us, refine us, strengthen us, give us insight, compassion, empathy, make us lean, teach us that living with less is more, help us focus on what is really important, and that home, wherever it will be, will be us together as family. But growing and stretching usually doesn't come without a bit of pain!
Thanks for your love and support. We appreciate your prayers and generosity, which continues to amaze and bless us!
Reference:
* According to the National CML Society, http://www.nationalcmlsociety.org/living-cml/response
Hematological Response is a normalization of the blood counts, particularly white blood cell counts. This is the first noticeable indicator that treatment is beginning to work, though not necessarily in the bone marrow. The response can be partial HR (reduction in white cells,but not down to normal range) or complete CHR (white blood count at or below approximately 12,000 white cells/microliter).
