Not sure if everyone saw the 60 minutes episode this past Sunday, June 22, 2015, about the high price of Cancer Drugs and what doctors are trying to do about it, but I wanted to share it.
The most important thing to know is that chemo drugs are purchased by your oncologists at wholesale and then marked up with large margins. Some prefer to offer continuous month by month chemo instead of other options like bone marrow transplant, trial drugs, or even nutrition supplements that may offer some help. I understand that some patients don't have a choice, but some do. I know Todd did, even though the bone marrow transplant option did not work with his disease, I'm glad he sought other options.
I'm thankful for the research being done and for the drug companies creating the medications, because Todd's health is dependent on them right now! However, there is a difference between making a healthy profit and making people chose between paying for medication or dying. It all goes back to the government, how the laws are written, and how they charge Medicaid.
So glad that some doctors are willing to take a stand. Here is the link:
Stay informed!
http://www.cbsnews.com/news/cost-of-cancer-drugs-60-minutes-lesley-stahl-health-care/
Monday, June 22, 2015
Cancerous Blast Cells down to 2%
 | |
| Todd celebrates Father's Day with our children: Hannah Lewis, Ellie, and Abby |
It is hard to believe that Todd started his third cycle of AG-221 trial drug last Thursday, June 18, 2015, at his last visit to the Cleveland Clinic. We were prepared for another 10 hour day of blood draws for Day 1, Cycle 3, but the required testing protocol for this day 1 was different. We went up and stayed at the Hope Lodge in Cleveland the Wednesday night before. His Thursday testing day started early with a 7:40 a.m. doctor's appointment and exam. Overall the doctor was pleased with the response that Todd has had on the drug so far.
Everything looks like a "GO" for having his Hickman Central Catheter removed on the next visit, Day 15, Cycle 3 on July 2, 2015. Todd questioned the need for the port that they are going to put in instead. The doctor agreed that it wasn't 100% necessary, but that it would be easier than being poked or having a temporary arm port put in each time he comes. It would be nice to have in case it is needed in the future, but that isn't the main motivation for putting it in. If Todd's condition would worsen, they could always install a port or another catheter at that time, but right now his numbers are the best they have been since transplant, so it is just a good time to do it. The port would require a lot less care. It is under the skin, and it would only need to be flushed with Heparin every 6 weeks or so. This would have to be done by a nurse, so it would be done during his regular monthly visits to the Cleveland Clinic. If his platelets are under 50,000 there is a good chance that they will want to transfuse him with platelets before or during the procedure.
While his research nurse was drawing blood, she noticed natural clotting at the cap for the first time. (This is a good thing that his blood could clot or stop on its own). After the usual tests, he was sent to have an Echo cardiogram done, which is something he hasn't had done since his pre-trial tests. After that he had his routine EKG and then was sent to be prepped for his bone marrow biopsy (number 15 I think). By then, we had the blood test results back; they were stunningly wonderful!
His hemoglobin was at 10.2! His whites were 2.79; ANCs at 2.29 and platelets at 46,000. His bilirubin is still higher than usual, at 3.4, which is up slightly from the last blood draw. They also ran a metabolic panel and all of his cholesterol numbers looked good.
After his bone marrow biopsy, we were free to head home. We had a showing to a realtor (on behalf of his clients) of our house on Friday, so we needed to rest-up. I was tired because I had been in Columbus, Ohio, with Hannah Lewis for college orientation at the Columbus College of Art of Design on Monday and Tuesday before leaving for Cleveland on Wednesday afternoon.
Todd was feeling good for Father's Day, on Sunday, June 21. My parents came over and we made dinner for everyone in honor of Father's Day. All the kids were home, even though Hannah Lewis and Abby had to go into work later that day.
Unfortunately, Todd woke up sick this morning, Monday, June 22, about 5:45 a.m. throwing up. He continued to be sick throughout the morning. I knew we had all eaten the same food, so I made sure no one else had come down sick. It was just Todd. Not sure why, but he had a bad spell of nausea and it is possible that with the combination of eating a late snack later, his food just didn't sit well. I called the Research Nurse to check on the protocol for taking or not taking his trial drug this morning and to give them a head's up about him getting sick. He had no fever. So, after a battery of questions, they instructed that he had up to 6 hours past the 9:00 a.m. dose time to take the medication, or if not to skip it for the day and take it tomorrow morning. After his stomach calmed down, he was gradually able to take his medicine and then keep some Powerade and crackers down, then we added more food in during the day.
While talking with the Research team, who called to check on him about 4:30 p.m., they were able to give us the results from his bone marrow biopsy. It showed blast counts at 2%. This has been about the same as the last two marrows in which the results were between 0-5%. So, the disease is still present and his marrow is still producing some blast cells, but less of them and more healthy cells, giving him increased blood counts. They still would classify his disease as "Stable" with 2% blasts and that he is having a hematological response with the use of the trial drug. This is such a turnaround from just three months ago.
Personal family updates:
Summer is here and we long for a vacation of any kind, but no plans are in sight. Once Todd gets his Hickman Catheter out, he will at least be able to get into a pool! Abby is still working both jobs and is in the process of transferring from The University of Cincinnati to nearby Wright State University. The program is different from U.C., so her new major will be Psychology with a concentration in Behavioral Neuroscience. She is still entertaining the idea of going to Medical School.
Hannah Lewis will be leaving home for The Columbus College of Art and Design on August 20, 2015. We have a lot to do: dorm room shopping, financial aid paperwork, loan paperwork, etc., to get done before then.
Ellie returned safely from her 8th grade trip to Washington D.C. She is excited about being a Freshman in high school now (it is hard for the rest of us to believe!). She has started volleyball practices and conditioning. Tryouts will be in August. In the meantime, she is also doing some conditioning with the cross country team.
I'm beginning the third week of my summer class. My Archival description workshop starts mid-July and lasts for two weeks, but I already have a whole list of pre-class reading and projects to get started on! I'm back to applying for jobs, but this time just part-time. I've applied at Kroger and CVS as a pharmacy technician. I can't work full-time because I finally got my practicum set-up for the fall semester. I have to meet with my practicum supervisor this week to finalize my schedule and paperwork, but if all goes well, I will be training at the University of Dayton, in the special collections and archives department of the Library. So, I praise God for this. I was also able to get into my last needed class for the fall semester. With all this, I am set to graduate at the end of the fall semester. In the meantime, I have renewed my substitute teaching license for the upcoming school year.
Our house has been on the market for just over a month now. We have reduced the price, but we have not had the interest we were hoping for. So, we've decided to have a plan B, in case it takes longer to sell it. So, that's why I'm looking for part-time work.
How can you pray or help? Pray for a buyer for our house. It will take someone special to buy it. In the meantime, pray that we can continue to take care of our expenses. If you know of any part-time positions that I can work at in the evenings or weekends, please let me know. I know God will provide. My uncle past away this past week, so please remember my family, especially my beloved Aunt Sheila as we bury him this week.
We appreciate your love and support.
Sunday, June 7, 2015
Hickman scheduled to be Removed on July 2, 2015
 |
| Todd with Hannah Lewis on graduation day |
 |
| Todd with long-time friend Barry Wideman |
It is hard to believe that it has been six weeks since Todd has needed a blood transfusion! The AG-221 has been an answer to prayer!
We went up to Cleveland Clinic on Thursday, June 4, 2015, for Cycle 2, day 15 testing. It was an good day. Todd had his blood work drawn, an EKG done, and we met with his Transplant Doctor to discuss his progress. Unfortunately, they were not able to get his Hickman Central Catheter scheduled for removal on this visit, as previously hoped, but they did it scheduled for July 2, 2015, which will be Cycle 3, day 15, with limited testing. They will put in a port under the skin on his left side of his chest instead.
The blood work was great! Todd's hemoglobin climbed to 9.6; his white count to 2.59; his ANCs to 2.18; and his platelets (which have been lagging behind) to 43,000. While only the ANCs are considered within the"normal range," the counts are still low overall, but they are so much better from where he was before he started the drug!
The last bone marrow biopsy was a little confusing, with the blasts showing at 5%. Just 15 days prior, they were around 0-1%. The doctor reassured us that there was nothing to be worried about. Todd's counts are not necessarily increasing, but rather, this is typical of taking a sample. It can be off by a few percent each time. She still considers the disease as "stable" and Todd having a "hemeotological response" in the blood with the drug. Todd's EKG looked normal, and the only side-effects have been nausea, some fatigue, and high bilirubin which has caused some yellowing of his eyes. It is hard to determine whether the fatigue is actually from the drug or from his disease. Although his hemoglobin is high enough for him not to need a transfusion, it is still below normal and can cause fatigue.
He did lose more weight (a few pounds) from the last visit, which concerns me. The doctor was mildly concerned and discussed his nausea and eating habits. They are not worried, but reassured him that he can eat whatever sounds good to him. Since his transplant he has lost over 30 pounds and a lot of muscle mass.
We were blessed enough to be able to stay at the Hope Lodge there in Cleveland, which helps cut our expenses tremendously. The staff and facilities are awesome, but we have had a few issues with some of the other longer staying occupants who are not as happy with anyone new disrupting their "authority" or routine. Which is really a shame.
Personal notes:
We had a successful graduation party, although the weather was cold, windy, and a bit wet. It is hard to believe we have two out of high school and one going into high school!
We've had our house on the market now for about two weeks. We have lowered the price once to create additional interest and show that we are motivated to sell. We have had a few showings, but I find myself anxious with the waiting. Waiting for calls, waiting for showings, waiting to sell. We can't look for a new place without selling our house. All we can do is pray and wait. God has answered prayers in so many other ways, I know this one will be answered in his way and timing too.
Ellie leaves for her 8th grade trip to Washington DC in the morning. We are blessed that she received a partial scholarship by the travel company, World Strides to be able to go. We also received word from the Cleveland Clinic Foundation that they are going to pick up a few more months of Todd's COBRA health insurance premiums. I think this was facilitated by a social worker who came into Todd's room on a prior visit, asking how we were doing, and what needs we had.
We are so grateful for all our blessing and appreciate your prayers and support as always.
Subscribe to:
Posts (Atom)