This was a long time coming! We were both feeling anxious as the appointment approached. We prepared a list of questions for the doctor so there would be no misunderstandings and no repeats of what we went through at Penn.
Our appt was at 10:30. He was an hour late. As soon as he met with us he addressed his tardiness and apologized! ( Bonus point 1) Dr. Ball reviewed Shane's lab work he had done and the ct scans that I sent down to him. He even pulled them up on his computer to show us the tumors to which he was referring to (Bonus point 2).
So, what we know is that Shane is having growth. He is moderately progressing in his cancer. Dr. Ball believes that he will qualify for a drug trial. There were 2 trials that we discussed. The first being the xl- 184 that the Penn Dr had been talking to us about. And another drug trial called E707?. After discussing the side effects and the pros and cons and the Diabetes factor we think that the xl-184 is the better choice to start with. Dr. Ball wanted Shane to get another ct of his chest to see if there was any growth since his last scan in Dec.
Dr. Ball answered all our questions and we discussed all our concerns. And I feel he is genuinely there for the patient (Bonus point 3). I feel that he is very intelligent, direct and really willing to help Shane in this fight! (Bonus point-5-9).
So Shane went for his ct and are to call the dr next week to determine if he really meets the eligibility requirements. On our way home, we received a phone call, Dr Ball, he had the results from the scans. He wanted to let us know that there was no growth from Dec but needed a radiologist to review it. He also gave me the number of the study nurse so I could get the ball rolling if Shane should qualify for the clinical trial. Amazing Communication (Bonus point 10).
This experience is like night and day compared to Penn. Yes, Baltimore is not around the corner, but we will make it work. I feel so much better knowing that Shane is going to be getting the best care! We deserve the chance to fight this disease, and now I know we are with the right Dr.
Sunday, March 21, 2010
Thursday, January 28, 2010
Its been a long few weeks!
As you know, we went to see Shane's oncologist at the beginning of the month. At that time, Shane had completed his scans and gotten preliminary results back from his GP. When we went to see the oncologist, she had not read his scans. We were told that she was going to review his scans and submit them to the drug company that conducts the clinical trial. I was to call her the following Friday and find out what the next step was. Also at the appointment, Shane had blood work done to follow up on his thyroid levels and measure the calcitonin in his blood, this is the marker for his cancer.
Right on time, I called the doctor's office and left a message with her secretary relaying the information the doctor had told me to say. A few hours passed and no phone call back, as 5:00 approached on Friday, I called again. The secretary told me that she emailed the doctor all of her messages and that she would get back to me.
That was our last contact with Shane's oncologist. I guess I should say her office. It is unfathomable to me that a Dr, an oncologist no less, has so little respect for a patient and his life. Granted Shane's cancer is slow growing, and we are so very grateful for that, but it is still growing. We are living with this every single day for the rest of our lives, it is not going away. I wanted to continue to call her, but Shane said no, he had completely lost faith in her. Not only because of this but because of past situations as well. We trusted her with his life and she can't bother to call us back...
So needless to say these last few weeks have been very difficult for us! I felt like we were in limbo. What were we going to do, the doctor we had was not calling us back and now we need to find another doctor. We immediately thought of the doctor we had me at Johns Hopkins. I called his office and his assistant said that Thursdays were his call days and if we didn't hear form him on the first Thurs, then he would call us on the next Thurs. Ofcourse he didn't call us that first week, it was torturous! The not knowing anything was really getting to me. The following week, I called his assistant again giving her a nice little nudge. Thursday came and went without a phone call. By this time I was starting to lose faith, but my husband, got on the phone and called the assistant himself and and told her that he needed this Dr to call him because his life depended on it. So, at 4:45 on Fri afternoon, we received a phone call from the Johns Hopkins Dr. He is willing to take Shane on as a patient! He is also running the clinical trial that the other Dr had at Penn as well as a different trial he is working on. This new Dr happens to be one of the best when it comes to Thyroid Cancers, so I feel very comfortable that we are moving in a positive direction. It is just a shame that we had to endure what was dished out at us through Penn. But now onto greener pastures. We have an appointment in the middle of March and we will take it from there.
As for the kids, today we went to CHOP. They both met with the endocrinologist and Dani had her follow up with the ent. Ethan's thyroid level is a little high, so he needs a med adjustment, otherwise he is doing great! He didn't even cry during blood work, so proud. Dani had blood work today to measure any calcitonin level, which we do not believe there will be. We have scheduled an ultrasound in April and her surgery is scheduled for May 17th.
It has been a very long, emotionally charged month for us. Hopefully now we can relax a bit before we go to Baltimore and then head into the spring for Dani's surgery. Thank you all for your support!
Right on time, I called the doctor's office and left a message with her secretary relaying the information the doctor had told me to say. A few hours passed and no phone call back, as 5:00 approached on Friday, I called again. The secretary told me that she emailed the doctor all of her messages and that she would get back to me.
That was our last contact with Shane's oncologist. I guess I should say her office. It is unfathomable to me that a Dr, an oncologist no less, has so little respect for a patient and his life. Granted Shane's cancer is slow growing, and we are so very grateful for that, but it is still growing. We are living with this every single day for the rest of our lives, it is not going away. I wanted to continue to call her, but Shane said no, he had completely lost faith in her. Not only because of this but because of past situations as well. We trusted her with his life and she can't bother to call us back...
So needless to say these last few weeks have been very difficult for us! I felt like we were in limbo. What were we going to do, the doctor we had was not calling us back and now we need to find another doctor. We immediately thought of the doctor we had me at Johns Hopkins. I called his office and his assistant said that Thursdays were his call days and if we didn't hear form him on the first Thurs, then he would call us on the next Thurs. Ofcourse he didn't call us that first week, it was torturous! The not knowing anything was really getting to me. The following week, I called his assistant again giving her a nice little nudge. Thursday came and went without a phone call. By this time I was starting to lose faith, but my husband, got on the phone and called the assistant himself and and told her that he needed this Dr to call him because his life depended on it. So, at 4:45 on Fri afternoon, we received a phone call from the Johns Hopkins Dr. He is willing to take Shane on as a patient! He is also running the clinical trial that the other Dr had at Penn as well as a different trial he is working on. This new Dr happens to be one of the best when it comes to Thyroid Cancers, so I feel very comfortable that we are moving in a positive direction. It is just a shame that we had to endure what was dished out at us through Penn. But now onto greener pastures. We have an appointment in the middle of March and we will take it from there.
As for the kids, today we went to CHOP. They both met with the endocrinologist and Dani had her follow up with the ent. Ethan's thyroid level is a little high, so he needs a med adjustment, otherwise he is doing great! He didn't even cry during blood work, so proud. Dani had blood work today to measure any calcitonin level, which we do not believe there will be. We have scheduled an ultrasound in April and her surgery is scheduled for May 17th.
It has been a very long, emotionally charged month for us. Hopefully now we can relax a bit before we go to Baltimore and then head into the spring for Dani's surgery. Thank you all for your support!
Thursday, January 7, 2010
Last week, Shane went for his 3 month scans.
When the report came back, it said that there was some growth on the left side of Shane's upper chest and arm pit. Obviously we were concerned. Today we to Penn and met with his oncologist. First of all, she had not read his CT scans only the report. I told her we were not happy with that and questioned why she never reads the scans when we come see her, as I always send them down to her prior to our visit. She gave us some excuse as to most patients usually bring scans to their appointments, and I told her we are not most patients. I hope she got the hint that she better have the scans read from here on out when we come down for future visits.
Anyway, as I said she did read the report and was not very concerned with Shane's growth. The one tumor that grew the most was under his left armpit and that is not a dangerous part of the body. So now the doctor is going to compare the scans to the scans taken in October and his initial scans from 2008 and see if she thinks there is a 20% growth. If she feels that there is 20% then she will submit the scans to the drug company that is conducting the clinical drug trial. They are the ones that make the final decision. So now we wait again. We will not know anything more until the end of next week the earliest. Just a little update.
Until then...
Anyway, as I said she did read the report and was not very concerned with Shane's growth. The one tumor that grew the most was under his left armpit and that is not a dangerous part of the body. So now the doctor is going to compare the scans to the scans taken in October and his initial scans from 2008 and see if she thinks there is a 20% growth. If she feels that there is 20% then she will submit the scans to the drug company that is conducting the clinical drug trial. They are the ones that make the final decision. So now we wait again. We will not know anything more until the end of next week the earliest. Just a little update.
Until then...
Thursday, October 15, 2009
Its been a long time since my last update.
Our last dr's appt was in June. At that time the dr told us to enjoy our summer, we took her advice and had a great summer!
As summer came to an end, I knew that soon we would be going through the cycle of scans, waiting, and then the oncologist visit. As much as we are staying positive, the what ifs were beginning to creep in.
Friday of last week and this Tuesday, Shane had his scans. Ofcourse, the waiting is always a little tense!
Today, after waiting 3 hrs we met with the oncologist. She didn't actually look at the scans, but read the report from the radiologist and there is minimal to no growth. This is such wonderful news. Better than we imagined! So now we wait another 3 months and go through the cycle again.
Meanwhile, Shane is feeling great and more positive than ever.
As for the kids, they are great. Ethan's voice is completely back to normal and he totally adjusted to life without his thyroid.
Dani will have an ultrasound this winter along with bloodwork to make sure that there is no indication of cancer in her. We don't expect there to be, I just want to be extra cautious. Her surgery is still slated for the spring.
Thank you again to our family and friends for your never ending love and support!!
As summer came to an end, I knew that soon we would be going through the cycle of scans, waiting, and then the oncologist visit. As much as we are staying positive, the what ifs were beginning to creep in.
Friday of last week and this Tuesday, Shane had his scans. Ofcourse, the waiting is always a little tense!
Today, after waiting 3 hrs we met with the oncologist. She didn't actually look at the scans, but read the report from the radiologist and there is minimal to no growth. This is such wonderful news. Better than we imagined! So now we wait another 3 months and go through the cycle again.
Meanwhile, Shane is feeling great and more positive than ever.
As for the kids, they are great. Ethan's voice is completely back to normal and he totally adjusted to life without his thyroid.
Dani will have an ultrasound this winter along with bloodwork to make sure that there is no indication of cancer in her. We don't expect there to be, I just want to be extra cautious. Her surgery is still slated for the spring.
Thank you again to our family and friends for your never ending love and support!!
Wednesday, July 1, 2009
After waiting over 2 weeks and enduring 2 scans, we found out tonight that Shane does not qualify for the drug trial.
This is a very good thing!! It is just a shame that we had to waste our time, energy and emotions over this situation which could have been handled much more professionally. It seems not only did Penn drop the ball, but the drug company who is conducting the study, was dragging their feet getting back to us with an answer. Now, we can enjoy our summer with our children and in September we will go back to the doctor and revisit the drug trial option once again. Thank you all for the love and support we really appreciate it!!
Thursday, June 25, 2009
Today we were supposed to be at Penn to start the clinical trial, we did not go.
It is a very long story, but the long and the short of it is, is that Penn dropped the ball in many different areas. They did not have all of their information gathered at the same time, which required me to have to do a lot of scrambling . We do have appointments set up for next week. I am not sure if we are keeping them or not. There is a possibility that Shane really does not qualify for the clinical trial. Which is a good thing. We will have more information in the beginning of next week. For now, Shane and I are going to enjoy our weekend getaway in Washington D.C.
Thursday, June 18, 2009
I know I haven't posted in a while. I think I needed a break from everything.
It seemed that everything hit our family at once and when things slowed down after Ethan's surgery, we took the opportunity to relax and just be.
That being said, Ethan is healing beautifully from his surgery. He bounced back quickly, his smiles, spirit, and spunk returned as soon as we got home. Ethan's voice is slowly returning. The doctor said it could take up to 6 months for it to fully return. he keeps asking Shane and me when he can scream again, it is very cute.
Today, Shane and I went down to Penn to meet with the oncologist. It seems that Shane meets the criteria for the clinical trial she is conducting. We actually thought that he might start today, but because of lack of communication on their part, he won't be starting until next week.
This is a placebo controlled clinical trial study, which means that 2 out of 3 patients will receive the actual drug and 1 out of 3 will get a placebo. Obviously we are hoping that he will be getting the drug. We won't know for sure for maybe a month or 2. There are some side effects of the drug that may or may not develop. We just have to be aware and know what to expect. During this clinical trial, Shane will be closely monitored by his oncologist at Penn. Scans will be done every 2-3 months to determine 1, if the tumors are shrinking and 2, if he actually is getting the drug or placebo.
We are still trying to absorb all of this information. It is a lot to take in. We will be spending a lot of time down at Penn while they monitor Shane through the study. This is a new chapter for us in this fight and we are ready!
On August 23rd, I will be running/walking with Team Frankel in the Livestrong Challenge. It is a 5k run/walk to support those living/fighting cancer. If you wish to donate, please go tophilly09.livestrong.org/teamfrankel33 and look for Team Frankel.
That being said, Ethan is healing beautifully from his surgery. He bounced back quickly, his smiles, spirit, and spunk returned as soon as we got home. Ethan's voice is slowly returning. The doctor said it could take up to 6 months for it to fully return. he keeps asking Shane and me when he can scream again, it is very cute.
Today, Shane and I went down to Penn to meet with the oncologist. It seems that Shane meets the criteria for the clinical trial she is conducting. We actually thought that he might start today, but because of lack of communication on their part, he won't be starting until next week.
This is a placebo controlled clinical trial study, which means that 2 out of 3 patients will receive the actual drug and 1 out of 3 will get a placebo. Obviously we are hoping that he will be getting the drug. We won't know for sure for maybe a month or 2. There are some side effects of the drug that may or may not develop. We just have to be aware and know what to expect. During this clinical trial, Shane will be closely monitored by his oncologist at Penn. Scans will be done every 2-3 months to determine 1, if the tumors are shrinking and 2, if he actually is getting the drug or placebo.
We are still trying to absorb all of this information. It is a lot to take in. We will be spending a lot of time down at Penn while they monitor Shane through the study. This is a new chapter for us in this fight and we are ready!
On August 23rd, I will be running/walking with Team Frankel in the Livestrong Challenge. It is a 5k run/walk to support those living/fighting cancer. If you wish to donate, please go tophilly09.livestrong.org/teamfrankel33 and look for Team Frankel.
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