Nivolumab/Opdivo Clinical Trial
Last Monday, the 3rd, I got "the call" from MD Anderson that I had moved up to the number 3 slot on the waiting list and nos. 1 and 2 were going in this week, so could I be prepared to go on August 17th. Well, there is a lot of pre-testing involved, blood tests, ct scan, biopsy etc and apparently, one of the people ahead of me flunked, so I got a call from Dr. Eng herself on Tuesday morning asking if I could report in to Houston the next morning! As I am in the SF Bay Area, this is not an easy task, but of course I said "sure"! My husband and I managed to get flights, hotel, parking and airport pickup arranged and packed and were out the door within 2 hours of receiving that call - phew.
That started the trip from hell. We arrived at our hotel (Extended Stay America, a real flea pit) at 12:30 at night and had to report in at MDA at 7:15 the next morning. First was a blood draw, then a meeting with the coordinator to sign consent forms, then up for the CT scan w/contrast, where, for the first time, they actually put some of the contrast medium into my rectum. It wasn't as much liquid as an enema but just enough to be uncomfortable. The next morning I went for the liver biopsy with ultra sound guidance. I found it quite fascinating and was asking them to show me the tumor, which looked horribly big to me and I remember asking a question and next thing I knew I was in the recovery room - I think they got fed up with me and turned up the sedation!
After that I had a meeting with Dr. Eng, who breezed in and thanked me for being able to get there so quickly and left, leaving a nurse and the coordinator behind. The nurse then told me that my hemoglobin level at 9.8 was high enough to get me into the trial but that it needed to be greater than 10 for me to actually get the treatment. WTF? This was Thursday, the day before I was supposed to be infused, so it was agreed that I should have a blood transfusion to boost the hemoglobin level. Okay, more needle sticks for blood for cross-typing. The next day, they pulled the blood, which I wanted put in through my port, I was getting mightily tired of needle sticks by now as each day I had at least two in each arm and sometimes three. Well, at MD Anderson, you have to go to a separate department to get your port certified and then accessed. It should have taken ten minutes, but ended up being two hours and each time I went and enquired I was always supposed to be next, or one person ahead of me and when I finally did get in, the first thing the nurse aske me was where was my port card. Huh? I never got any card, couldn't tell her what sort of port it was, except that it wasn't a power port, which she doubted as she said even small clinics are installing power ports these days. In the meantime, the transfusion people were calling to see where I was as they were holding my bed all this time. I finally got back down there and got my blood at about 4pm - it took 5 1/2 hours from start to finish, and needless to say my blood pressure was off the charts. They then came and did another blood draw and the nurse called me at 9 pm to tell me that she didn't understand it, but my hemoglobin hadn't budged, it was still 9.8 and therefore I was ineligible for treatment. That made for a happy night as you can imagine.
In the morning, I decided there had to have been a mistake, so I went back to the lab demanding a retest. Of course, they won't do it without an order, so I had to go back to the infusion center and got the charge nurse there to send in the order. Back for the blood draw, wait and wait. Now, between getting a good reading and starting the infusion, I had to go back to the lab so they could draw a bunch of research blood - but only if my hemoglobin was over 10. I finally asked the receptionist if my blood work was back yet and she said yes it was, but she didn't have access to the results, but she could tell me that I didn't have to go back for the research blood draws as they had been cancelled. Well, the only reason they would cancel them would be that I wasn't getting the infusion so I got really upset and made the receptionist uncomfortable and she asked me if I would like to see a nurse who could maybe explain it to me. I said yes and went back to the waiting area. After about ten minutes my husband said it was pointless waiting, we knew what she was going to say and we should just go and have lunch somewhere. Just about then someone called my name, so we followed her into the inner sanctum and she said to step on the scale prior to blood pressure reading etc. I asked why as all I was doing was consulting with a nurse - she looked at her paperwork and said, well, she had me down for an infusion of Nivolumab! Apparently, my hemoglobin came in at 10.7 and it had been that the night before, the lab just hadn't bothered to enter it into the system. So off I ran back to the lab (Al said he was staying in my infusion room, wasn't going to let anybody else take it) where I swear they took out as much blood as they had given me the night before - they wanted 15 vials, and no, the order had not been cancelled!
So, back for the infusion. Everything went fine for about the first 20 minutes, then I got a little itchy hive on my chin, then another on my arm and one on my chest. No big deal, as I told the nurse, I could certainly live with that, but no, she added a bag of Benadryl and within ten minutes the hives were gone. So, on early Saturday afternoon, I finally had my first Nivolumab treatment, yay!
By about 5pm I had a fever. Now, throughout the week before I had had occasional mild fevers, took an ibuprofen and they went away, so I knew something was not quite right, but wasn't going to mention it before I had my Nivolumab, just in case. This fever was much worse though and, because it was Saturday, I had been told to go to the MDA Emergency Room at the first sign of anything untoward at all. So off we went. Two hours after we got there I still hadn't been seen by a doctor, therefore no tests ordered or anything, so I told the nurse, that really, I didn't feel that bad, my temp was only 102 so I would just take a couple of ibuprofen and leave and deal with whatever at home. She visibly paled, begged me not to leave, and rushed off to find the doctor, who arrived in less than two minutes. I think they were petrified of Dr Eng and I could only imagine what she would say to them if they had let one of her trial patients leave because they couldn't even examine me in two hours. All I can say is that she intimidates the heck out of me even when she's being nice, so I certainly wouldn't want to be on the receiving end of that conversation! Anyway, it turned out I had a UTI (not really surprising given the messy accidents that are difficult to clean up in public bathrooms) so they gave me a bag of saline, a bag of anti-biotics and sent me home at about 11:30 with a prescription for Cipro, which I got filled at the all-night pharmacy in the hospital.
Sunday, blessedly, the day to go home. I logged on to check in for our Southwest flight only to have them say I was too early and it was more than 24 hours before the flight - which was supposed to be at 3:30, uh-oh. I called them and they said I had booked a Tuesday return at that time, and that the Sunday non-stop was full. I will say this about Southwest, she was very helpful and got us onto a flight at 6:55, changing in Las Vegas with very little fuss and only an extra $21 charge. Unfortunately, I was in full-blown fever by the time we got on the plane, freezing cold despite adding Al's jacket to mine (no blankets on planes any more) then sweating profusely and aching and hurting all over. Our Vegas to Oakland flight was 35 minutes late and we finally got in at 11:20 pm with an hour to drive home. I was so miserable, I never want to do that again.
So, I don't really know how the Nivolumab is affecting me. I suspect that if I didn't have the UTI I would just be extra tired and I don't think the aches or fever have anything to do with the Nivolumab. I'll know better when the antiobiotics kick in and the infection is gone.
One interesting thing. The infusion nurse said that she has infused the Nivolumab into a few of the other trial participants and they are all reporting good results and the trial seems to be going very well. Music to my ears.
I feel really bad for the person ahead of me who was not able to get into the trial as I can well imagine how she/he feels. I didn't enquire, but I hope that its something fixable and they will be accepted in next time.
So now I have to gird my loins, so to speak, and prepare for the prospect of flying out to Houston every two weeks, but hopefully it will all be worth it.
Carol
Comments
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Carol
That's quite an ordeal, but I am so glad you were finally able to get the trial started. I hope the UTI will respond to the antibiotics and that you don't have any nasty side effects from the Nivolumab. May you get the same good results as those who are also in the trial. Sending you hugs and prayers.
Martha
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sorry for your experience
hey...just to let you know ...my first day at MD anderson lasted from am til 11 pm.... then later, i had to go to ER 2 days after chemo tx was finished ( radiation was not finished ) .... the er was packed .... took me over 6 hours just to get a nurse to give me IV fluids.... they are soooooo busy.....then about another 2 hours and they moved me to a room....also,,, i was told multiple times that if i got a fever do NOT take anything over the counter to get rid of it...they want to monitor it. but i had had chemo and radiation prior ...anything over 101 temp is emergency....they might tell you differently but that is what i was told.... so glad you got into the trial.... i am 6 years post .... had stage 2....MDA is a miracle place.... hugs sephie
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Tri
i just returned from MD Anderson and had a similar experience including the uti. Ended up in the ER for 17 hours before I was admitted. I met Dr Eng once and told her I thought I was getting a uti. Her medical intern ordered a urine test. The next day when I went to check on my results found out he ordered a pregnancy test by mistake. By that time, I had 103.5 fever.
Dr Eng also told me I did not qualify for the trial. 1. There was a wait list and 2) she did not consider my cancer metasized. My 4 cm tumor is on my left uterer tube and has invaded my pelvic wall, muscle and sciatic nerve. All my reports say I have met disease but Dr Eng considers it localized.
Dr Eng brought my case to the tumor board and the surgeon, Dr Skibber recommended surgery to remove the tumor and part of the tube but I will be left with colostomy bag I have an appt in two weeks to talk to him I am very nervous since two tumor boards in Colorado where I live told me surgery is out of the question My trip to see Dr Eng was for the trial and now I'm faced with making this decision Does anyone know anything about Dr john Skibber Dr Enf says he's very gifted I could not find much on the internet other than 1 malpractice suit in 2001
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Thank you all for your kind commentssephie said:sorry for your experience
hey...just to let you know ...my first day at MD anderson lasted from am til 11 pm.... then later, i had to go to ER 2 days after chemo tx was finished ( radiation was not finished ) .... the er was packed .... took me over 6 hours just to get a nurse to give me IV fluids.... they are soooooo busy.....then about another 2 hours and they moved me to a room....also,,, i was told multiple times that if i got a fever do NOT take anything over the counter to get rid of it...they want to monitor it. but i had had chemo and radiation prior ...anything over 101 temp is emergency....they might tell you differently but that is what i was told.... so glad you got into the trial.... i am 6 years post .... had stage 2....MDA is a miracle place.... hugs sephie
Sephie, things at MDA really haven't changed since you were there, they are still right on the edge of being totally disorganized, but then they have so many needy people, all the time. Its actually quite heartbreaking looking around at all the people knowing that most of them are as sick and desperate as me. The only reason I got treated as quickly as I did at the ER (only five hours total) was because the staff was petrified of Dr. Eng, who is very protective of her trial chicks.
Today I am going to my local hospital, about 45 mins away, for a blood transfusion. My doc did a hemoglobin test yesterday and it came back at exactly 10, which should be enough, but I was at 10 when I went last time and the MDA lab read it as only 9.8, so I'm taking no chances. It will still be a five hour procedure by the time they do the cross-typing, find the blood and infuse it, but I'd much rather do it here, ahead of time and arrive at my one full day of appointments at MDA ready to go. It feels a bit like cheating, but I did check with my MDA team and they said it was fine to get a transfusion and they also thought it would be best to do it here.
I'm a bit concerned about my fever. The ER doc said that if it hadn't gone in 48 hours, i.e. Monday night, to let my local doctor know. Well, last night, Wednesday, it climbed to 101.5 again, so I sent an email to my oncologist. I don't know if the Cipro 500 mg twice a day isn't enough, or if its the wrong antibiotic, or even the wrong infection or I'm just impatient. I had one UTI once about 35 years ago, so they are not something I'm prone to.
On the plus side, I've got my flights and hotel booked for next Wednesday- we are having to stay at the Best Western this time as Rotary House was full. Its a bit further away, but luckily I am fit enough to walk the half mile or so a couple of times a day. I am feeling pretty good and am very optimistic about the Opdivo - I'm sure I can just feel those t-cells, newly aware that there are a whole bunch of really nasty intruders in their midst, rushing in to slaughter and destroy! Yay, go t-cells!
Carol
I just so hope that Opdivo is the breakthrough that is so desperately needed for metastatic anal cancer sufferers, there certainly isn't much else going on yet, and it should be relatively easy to get FDA approval.
Carol
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Best Wetern in Houston medical centerCazz said:Thank you all for your kind comments
Sephie, things at MDA really haven't changed since you were there, they are still right on the edge of being totally disorganized, but then they have so many needy people, all the time. Its actually quite heartbreaking looking around at all the people knowing that most of them are as sick and desperate as me. The only reason I got treated as quickly as I did at the ER (only five hours total) was because the staff was petrified of Dr. Eng, who is very protective of her trial chicks.
Today I am going to my local hospital, about 45 mins away, for a blood transfusion. My doc did a hemoglobin test yesterday and it came back at exactly 10, which should be enough, but I was at 10 when I went last time and the MDA lab read it as only 9.8, so I'm taking no chances. It will still be a five hour procedure by the time they do the cross-typing, find the blood and infuse it, but I'd much rather do it here, ahead of time and arrive at my one full day of appointments at MDA ready to go. It feels a bit like cheating, but I did check with my MDA team and they said it was fine to get a transfusion and they also thought it would be best to do it here.
I'm a bit concerned about my fever. The ER doc said that if it hadn't gone in 48 hours, i.e. Monday night, to let my local doctor know. Well, last night, Wednesday, it climbed to 101.5 again, so I sent an email to my oncologist. I don't know if the Cipro 500 mg twice a day isn't enough, or if its the wrong antibiotic, or even the wrong infection or I'm just impatient. I had one UTI once about 35 years ago, so they are not something I'm prone to.
On the plus side, I've got my flights and hotel booked for next Wednesday- we are having to stay at the Best Western this time as Rotary House was full. Its a bit further away, but luckily I am fit enough to walk the half mile or so a couple of times a day. I am feeling pretty good and am very optimistic about the Opdivo - I'm sure I can just feel those t-cells, newly aware that there are a whole bunch of really nasty intruders in their midst, rushing in to slaughter and destroy! Yay, go t-cells!
Carol
I just so hope that Opdivo is the breakthrough that is so desperately needed for metastatic anal cancer sufferers, there certainly isn't much else going on yet, and it should be relatively easy to get FDA approval.
Carol
BW has a shuttle that runs every hour from the hotel Mon. thru Fri. (no weekends or holidays). Also, will p/u hourly. Need to call first. If you walk...go to the Mays Bldg. to get out of the heat. Then you can take a tram to the Main Bldg.
Nic
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i had dr. skibberMartSwil said:Tri
i just returned from MD Anderson and had a similar experience including the uti. Ended up in the ER for 17 hours before I was admitted. I met Dr Eng once and told her I thought I was getting a uti. Her medical intern ordered a urine test. The next day when I went to check on my results found out he ordered a pregnancy test by mistake. By that time, I had 103.5 fever.
Dr Eng also told me I did not qualify for the trial. 1. There was a wait list and 2) she did not consider my cancer metasized. My 4 cm tumor is on my left uterer tube and has invaded my pelvic wall, muscle and sciatic nerve. All my reports say I have met disease but Dr Eng considers it localized.
Dr Eng brought my case to the tumor board and the surgeon, Dr Skibber recommended surgery to remove the tumor and part of the tube but I will be left with colostomy bag I have an appt in two weeks to talk to him I am very nervous since two tumor boards in Colorado where I live told me surgery is out of the question My trip to see Dr Eng was for the trial and now I'm faced with making this decision Does anyone know anything about Dr john Skibber Dr Enf says he's very gifted I could not find much on the internet other than 1 malpractice suit in 2001
he helped establish the NCCN portocol for anal cancer..... i liked him ... he did all my check ups ( as well as 3 other docs) and proctosigmoidoscopies.... i do not have a colostomy ....i am 6 years post tx.... stage 2.....sephie
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CarolCazz said:Thank you all for your kind comments
Sephie, things at MDA really haven't changed since you were there, they are still right on the edge of being totally disorganized, but then they have so many needy people, all the time. Its actually quite heartbreaking looking around at all the people knowing that most of them are as sick and desperate as me. The only reason I got treated as quickly as I did at the ER (only five hours total) was because the staff was petrified of Dr. Eng, who is very protective of her trial chicks.
Today I am going to my local hospital, about 45 mins away, for a blood transfusion. My doc did a hemoglobin test yesterday and it came back at exactly 10, which should be enough, but I was at 10 when I went last time and the MDA lab read it as only 9.8, so I'm taking no chances. It will still be a five hour procedure by the time they do the cross-typing, find the blood and infuse it, but I'd much rather do it here, ahead of time and arrive at my one full day of appointments at MDA ready to go. It feels a bit like cheating, but I did check with my MDA team and they said it was fine to get a transfusion and they also thought it would be best to do it here.
I'm a bit concerned about my fever. The ER doc said that if it hadn't gone in 48 hours, i.e. Monday night, to let my local doctor know. Well, last night, Wednesday, it climbed to 101.5 again, so I sent an email to my oncologist. I don't know if the Cipro 500 mg twice a day isn't enough, or if its the wrong antibiotic, or even the wrong infection or I'm just impatient. I had one UTI once about 35 years ago, so they are not something I'm prone to.
On the plus side, I've got my flights and hotel booked for next Wednesday- we are having to stay at the Best Western this time as Rotary House was full. Its a bit further away, but luckily I am fit enough to walk the half mile or so a couple of times a day. I am feeling pretty good and am very optimistic about the Opdivo - I'm sure I can just feel those t-cells, newly aware that there are a whole bunch of really nasty intruders in their midst, rushing in to slaughter and destroy! Yay, go t-cells!
Carol
I just so hope that Opdivo is the breakthrough that is so desperately needed for metastatic anal cancer sufferers, there certainly isn't much else going on yet, and it should be relatively easy to get FDA approval.
Carol
Your experience sounds totally exhausting. I am so sorry you had to endure all of that. I was treated at MDA and I do remember being totally overwhelmed when I got there. My first two days were a whirlwind. As for Dr. Eng, your comments made me smile because as petite as she is, she can be intimidating. But, I will tell you this, after I got to know her better, I really, really like her. She is totally dedicated to her research, patients and finding a cure. She is brillant and if successful treatment/cure is to be found for anal cancer, my bet is on Dr. Eng and the team she works with.
I've been reading about the trial and I pray that it will be successful and that people like yourself will reap the benefits. I hope you are feeling better and I wish you strength and healing.
Liz
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