RE:RE:OT -- Update on my wifeI believe the staff at Karmanos really care about their patients. To show official efficacy there is a minimum of 3 months. But doctors and patients can often see things in blood work and even physical exams. For example, my wife has liver mestasis which can cause the ALP to go higher. Hers was over 1100 before treatment and just over 200 now. I forgot to mention side effects. For the immunotherapy trial it was horrible, the rash and itchiness. For this trial just a slight loss of hair and according to the eye exam some dryness in the eyes but nothing she had noticed. Other than that no side-effects I can think of.
Wino115 wrote: Juniper, you are a saint and your wife and the strength between you is amazing to see in action through this trying time. I hope the sign you both have received continues to show nothing but positive progress as she continues the new therapy you have found. Miracles do happen and she is due one. Prayers to you both.
Thank you for the education on the realities of a trial. It sounds like what you are saying is that for refractory Phase 1 trials we should expect longer timelines and normal delays to make sure everything is safe. It sounds like you found an amazing center that is going above and beyond for you. Your perseverance will pay off!
juniper88 wrote: This post is kind of of topic but still somewhat relevant if you want to know more about late or end stage cancer and how it relates to clinical trials.
As many of you know my wife is battling Ovarian cancer. She has High Grade ovarian cancer and is negative for all genetic abnormalities that she has been test for. The last time I updated you all was when she was on a Phase I immunotherapy medicine. Unfortunately that medicine did not help her at all and after the first CT Scan she was taken off the trial. That is pretty much how all trials work.
While she was on the trial she was hospitalized at Toronto General Hospital because her left lung had collapsed because a tumor had occluded her left main bronchus. After 7 days of NPO (no food or drink) a bronchoscopy was done to clear out the tumor. This gave her relieve of about 1.5 weeks until it was occluded again. She went for another 5 days of NPO and another bronchoscopy to clear it out. She then received 5 days of local radio therapy which seems to have been effective at stopping the growth in this area.
After my wife was taken of the immunotherapy trial we where presented with 3 phase I trials at Karmanos (Detroit),where she is being treated. However, she would have to wait a month before being able to get on any trial because of the radiotherapy. We agreed on a trial with the oncologist at Karmanos and returned there at the end of May.
For this or any other trial there is pre-trial screening. One of the bloodtest that need to be passed was that for bilirubin, and my wife failed that test. We were back in Windsor already when we got the phone call. We were told that my wife's bilirubin had come back high and that one of the nurses had noticed that my wife looked jaundiced. We were told that either we cross the border again and go to the ER or go back to Toronto and go to the ER. They suspected a bile duct blockage as on a previous CT Scan there were tumors pressing on the bile ducts. The solution would be to place a stent to keep the bile ducts open. We chose to go back over the border because in Toronto they had not even been willing to place a stent to keep the left main bronchus open, which would be a much easier procedure.
In the ER the appropriate imaging and from there she was admitted to the main hospital It was confirmed by MRI that her bile ducts where occluded and that a stent would have to be place. It was the long weekend in the U.S. and the hospital was short staffed. Our oncologist when way above his duties to make it happen that the stent placement got done. I have nothing but praise for all involved with my wife's care at Karmanos. The procedure was very complicated and difficult to do but the surgeon did not give up and he got 2 stents placed.
On June 2nd my wife bloodwork was redone and the bilirubin was back to normal and she received the first cycle of treatment of this new trial. We returned 1 week later in Detroit to do follow up bloodwork and physical assessment (remember these trials are foremost about safety) From the symptoms my wife was now having and the increasing size of her abdomen the oncologist recomended t have an X-Ray done. From that it was determinded that my wife had a small bowel obstruction which is quite common in late stage ovarian cancer.This had already started before the first cycle treatment. They wanted to admit her again to the hospital but we have no insurance in the U.S and the stent placement a week and a half before was likely going to be very expensive. So, I drove her back to the ER at Toronto General that day, and we got her admitted there. She was there for 12 day hospitalization. They did something called a NG tube and put her again on NPO. for several days. Then introduced clear liquids and then full liquids. Against the doctors medical advice I took her back to Detroit on June 23rd. She passed all the blood work despite not have eaten much of anything for almost a month (at this point I really want to thank Rusty for all his prayers throughout all of this!!) and she received her 2nd cycle of treatment.
One of the blood test that is done for this particular trial is the CA-125 test. With some Ovarian cancer patients, like my wife, it very accucurately predicts how much cancer there is in her body. That tumor marker had gone down by about 40% after just 1 cycle!! My wife had tumors had are clear visible and we had noticed that they had become smaller. I kept saying that it was just our wishful thinking. But with the CA-125 going down so much, I believe we have some real hope.