Off Today for 2nd Round Opdivo
Thank you all for your good wishes. I'm leaving in an hour, heading back to Houston for round two of the Nivolumab and I'm hoping it will be a lot less eventful than the last visit.
My doctors here have decided that my daily fever is something called "tumor fever" and is caused by the tumors themselves growing and stealing resources from my liver and anything else they come into contact with. Maybe that will be a marker for whether the Nivolumab is working, if the fever stops happening because those horrible tumors are on the run and trying to avoid being mowed down by the t-cells wielding scimitars and AK-47s and have no time left to mess with me! Hey, they say visualization can help!
I'll report when I get back.
Comments
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Thank you Alljad345 said:Cazz
We're all rooting for you!
Jackie
for your encouragement and good wishes, its nice to know that people are rooting for you.
This trip didn't go quite as smoothly as I had hoped. I had prepared for it, I thought, by getting a blood transfusion here in California on the Thursday (13th), which boosted my hemoglobin to 11.2 - but by the time they drew my blood one week later, it had dropped to 9.9! And of course 10 is the cut off. So, yet another blood transfusion - at MD Anderson that means a blood draw, then a five-hour wait while they cross-type it, and then two hours to infuse it - then I had to wait for someone to come out from the lab to do another draw to confirm and document that it was over 10 (it got back up to 11.1) for the trial. By that time it was after 7 pm and they wanted to wait till the next day for the Nivolumab infusion, but I was flying home the next day, admittedly not till 3:30 pm, and I told them flat out that I didn't trust them and I was sure something would go wrong if I waited, so wanted the treatment now. I called the trial coordinator, who called the doctor (not Dr Eng, she was overseas giving a lecture), who talked to the charge nurse and they agreed that if I was adamant, I should get the treatment now and there was just time to do it there before the center closed at 10 pm. Luckily, it didn't take them long to make up the dose and they first gave me Benadryl and then the Nivolumab. We left there at 10 pm and because all the shuttles had stopped running, walked less than half a mile back to the hotel and crashed after a 13 hour day!
I don't like that I don't seem to be able to hold on to my red blood cells and certainly don't like all these blood transfusions I am having to get. It sort of feels like playing Russian roulette, but I don't know what my options are. I asked my doctor if I should be taking iron supplements and eating spinach, but he said that wouldn't help, I'm not iron deficient its just that I'm just not making enough red blood cells to keep up - probably because of the damage caused to the pelvic bones from the radiation.
I don't know what to do for my next visit, which is a week from Tuesday, Sept 1st. I could try another blood transfusion locally, maybe on the Friday and hope it holds, but I am afraid that Medicare and my insurance won't pay for it as, strictly speaking, it's not medically necessary. But they won't schedule a transfusion at MDA until their own blood draw shows that I am deficient so I would have to do the 7+ hour dance again and that would only be if they could find an infusion bed for me, last time they used my treatment reservation time and I just overran it by 8 hours.
Nothing's ever easy it seems. I have to have another liver biopsy on the next visit on the Monday with treatment scheduled for Tuesday. Maybe I can get them to draw blood immediately Monday morning and then get them to draw the cross-typing blood so they can work on that while I am having the biopsy and then get the transfusion after that...
Hey, believe me, I am so happy I am getting the treatment and I told the trial co-author, Dr Van Morris that he is going to write me up in medical journals as a complete success, NED for years until I die of other causes - he just smiled and said he hoped so. Its sort of frustrating, not to mention tiring, going through all this every two weeks, but hopefully things will get smoother. I don't seem to be having any side effects other than fatigue - but then again that could be from the half hour trip to the airport, the two hour wait because the flight has been delayed by an hour (again!), the 5 1/2 hour flight, including stop, and then the hour drive from the airport to home! All in all, after a day to recover, I feel pretty good and just know that those lovely Nivolumabs are showing the t-cells where to go and root out all the nasties, it may take a while, but me and my t-cells are going to win!
Carol
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CarolCazz said:Thank you All
for your encouragement and good wishes, its nice to know that people are rooting for you.
This trip didn't go quite as smoothly as I had hoped. I had prepared for it, I thought, by getting a blood transfusion here in California on the Thursday (13th), which boosted my hemoglobin to 11.2 - but by the time they drew my blood one week later, it had dropped to 9.9! And of course 10 is the cut off. So, yet another blood transfusion - at MD Anderson that means a blood draw, then a five-hour wait while they cross-type it, and then two hours to infuse it - then I had to wait for someone to come out from the lab to do another draw to confirm and document that it was over 10 (it got back up to 11.1) for the trial. By that time it was after 7 pm and they wanted to wait till the next day for the Nivolumab infusion, but I was flying home the next day, admittedly not till 3:30 pm, and I told them flat out that I didn't trust them and I was sure something would go wrong if I waited, so wanted the treatment now. I called the trial coordinator, who called the doctor (not Dr Eng, she was overseas giving a lecture), who talked to the charge nurse and they agreed that if I was adamant, I should get the treatment now and there was just time to do it there before the center closed at 10 pm. Luckily, it didn't take them long to make up the dose and they first gave me Benadryl and then the Nivolumab. We left there at 10 pm and because all the shuttles had stopped running, walked less than half a mile back to the hotel and crashed after a 13 hour day!
I don't like that I don't seem to be able to hold on to my red blood cells and certainly don't like all these blood transfusions I am having to get. It sort of feels like playing Russian roulette, but I don't know what my options are. I asked my doctor if I should be taking iron supplements and eating spinach, but he said that wouldn't help, I'm not iron deficient its just that I'm just not making enough red blood cells to keep up - probably because of the damage caused to the pelvic bones from the radiation.
I don't know what to do for my next visit, which is a week from Tuesday, Sept 1st. I could try another blood transfusion locally, maybe on the Friday and hope it holds, but I am afraid that Medicare and my insurance won't pay for it as, strictly speaking, it's not medically necessary. But they won't schedule a transfusion at MDA until their own blood draw shows that I am deficient so I would have to do the 7+ hour dance again and that would only be if they could find an infusion bed for me, last time they used my treatment reservation time and I just overran it by 8 hours.
Nothing's ever easy it seems. I have to have another liver biopsy on the next visit on the Monday with treatment scheduled for Tuesday. Maybe I can get them to draw blood immediately Monday morning and then get them to draw the cross-typing blood so they can work on that while I am having the biopsy and then get the transfusion after that...
Hey, believe me, I am so happy I am getting the treatment and I told the trial co-author, Dr Van Morris that he is going to write me up in medical journals as a complete success, NED for years until I die of other causes - he just smiled and said he hoped so. Its sort of frustrating, not to mention tiring, going through all this every two weeks, but hopefully things will get smoother. I don't seem to be having any side effects other than fatigue - but then again that could be from the half hour trip to the airport, the two hour wait because the flight has been delayed by an hour (again!), the 5 1/2 hour flight, including stop, and then the hour drive from the airport to home! All in all, after a day to recover, I feel pretty good and just know that those lovely Nivolumabs are showing the t-cells where to go and root out all the nasties, it may take a while, but me and my t-cells are going to win!
Carol
I am so sorry your recent trip did not go as smoothly as hoped, I will keep you in my thoughts that the next is better. During my initial treatment over 4 years ago I too had a difficult time keeping my hemoglobin levels up. It seemed I was always in need of blood transfusions as well as a couple iron infusions. My doctor did recommend I take 2 ferrus sulfate (iron) supplements daily during that time, and I still take 1 per day now and notice increased fatigue if I don't for a couple days. Although you were told it wouldn't help, I wonder if it wouldn't hurt to give it a try....even just for the few days before your next blood draw at MDA?????
Thank you for sharing your trial details as this is important news for us all......
Be well,
katheryn
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CarolCazz said:Thank you All
for your encouragement and good wishes, its nice to know that people are rooting for you.
This trip didn't go quite as smoothly as I had hoped. I had prepared for it, I thought, by getting a blood transfusion here in California on the Thursday (13th), which boosted my hemoglobin to 11.2 - but by the time they drew my blood one week later, it had dropped to 9.9! And of course 10 is the cut off. So, yet another blood transfusion - at MD Anderson that means a blood draw, then a five-hour wait while they cross-type it, and then two hours to infuse it - then I had to wait for someone to come out from the lab to do another draw to confirm and document that it was over 10 (it got back up to 11.1) for the trial. By that time it was after 7 pm and they wanted to wait till the next day for the Nivolumab infusion, but I was flying home the next day, admittedly not till 3:30 pm, and I told them flat out that I didn't trust them and I was sure something would go wrong if I waited, so wanted the treatment now. I called the trial coordinator, who called the doctor (not Dr Eng, she was overseas giving a lecture), who talked to the charge nurse and they agreed that if I was adamant, I should get the treatment now and there was just time to do it there before the center closed at 10 pm. Luckily, it didn't take them long to make up the dose and they first gave me Benadryl and then the Nivolumab. We left there at 10 pm and because all the shuttles had stopped running, walked less than half a mile back to the hotel and crashed after a 13 hour day!
I don't like that I don't seem to be able to hold on to my red blood cells and certainly don't like all these blood transfusions I am having to get. It sort of feels like playing Russian roulette, but I don't know what my options are. I asked my doctor if I should be taking iron supplements and eating spinach, but he said that wouldn't help, I'm not iron deficient its just that I'm just not making enough red blood cells to keep up - probably because of the damage caused to the pelvic bones from the radiation.
I don't know what to do for my next visit, which is a week from Tuesday, Sept 1st. I could try another blood transfusion locally, maybe on the Friday and hope it holds, but I am afraid that Medicare and my insurance won't pay for it as, strictly speaking, it's not medically necessary. But they won't schedule a transfusion at MDA until their own blood draw shows that I am deficient so I would have to do the 7+ hour dance again and that would only be if they could find an infusion bed for me, last time they used my treatment reservation time and I just overran it by 8 hours.
Nothing's ever easy it seems. I have to have another liver biopsy on the next visit on the Monday with treatment scheduled for Tuesday. Maybe I can get them to draw blood immediately Monday morning and then get them to draw the cross-typing blood so they can work on that while I am having the biopsy and then get the transfusion after that...
Hey, believe me, I am so happy I am getting the treatment and I told the trial co-author, Dr Van Morris that he is going to write me up in medical journals as a complete success, NED for years until I die of other causes - he just smiled and said he hoped so. Its sort of frustrating, not to mention tiring, going through all this every two weeks, but hopefully things will get smoother. I don't seem to be having any side effects other than fatigue - but then again that could be from the half hour trip to the airport, the two hour wait because the flight has been delayed by an hour (again!), the 5 1/2 hour flight, including stop, and then the hour drive from the airport to home! All in all, after a day to recover, I feel pretty good and just know that those lovely Nivolumabs are showing the t-cells where to go and root out all the nasties, it may take a while, but me and my t-cells are going to win!
Carol
I'm sorry you had another bumpy ride at MDA, but your persistence paid off--so glad they went ahead with the infusion. I hope and pray that you can continue with this trial. Best wishes.
Martha
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Cazzmp327 said:Carol
I'm sorry you had another bumpy ride at MDA, but your persistence paid off--so glad they went ahead with the infusion. I hope and pray that you can continue with this trial. Best wishes.
Martha
What an outing! Still, you're making it through. Another treatment session ticked off the list & keep going.
Thinking of you. Hope the weather is better there than here for you to relax in between treatments
Cwtches
Liz
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sorry for long daysCazz said:Thank you All
for your encouragement and good wishes, its nice to know that people are rooting for you.
This trip didn't go quite as smoothly as I had hoped. I had prepared for it, I thought, by getting a blood transfusion here in California on the Thursday (13th), which boosted my hemoglobin to 11.2 - but by the time they drew my blood one week later, it had dropped to 9.9! And of course 10 is the cut off. So, yet another blood transfusion - at MD Anderson that means a blood draw, then a five-hour wait while they cross-type it, and then two hours to infuse it - then I had to wait for someone to come out from the lab to do another draw to confirm and document that it was over 10 (it got back up to 11.1) for the trial. By that time it was after 7 pm and they wanted to wait till the next day for the Nivolumab infusion, but I was flying home the next day, admittedly not till 3:30 pm, and I told them flat out that I didn't trust them and I was sure something would go wrong if I waited, so wanted the treatment now. I called the trial coordinator, who called the doctor (not Dr Eng, she was overseas giving a lecture), who talked to the charge nurse and they agreed that if I was adamant, I should get the treatment now and there was just time to do it there before the center closed at 10 pm. Luckily, it didn't take them long to make up the dose and they first gave me Benadryl and then the Nivolumab. We left there at 10 pm and because all the shuttles had stopped running, walked less than half a mile back to the hotel and crashed after a 13 hour day!
I don't like that I don't seem to be able to hold on to my red blood cells and certainly don't like all these blood transfusions I am having to get. It sort of feels like playing Russian roulette, but I don't know what my options are. I asked my doctor if I should be taking iron supplements and eating spinach, but he said that wouldn't help, I'm not iron deficient its just that I'm just not making enough red blood cells to keep up - probably because of the damage caused to the pelvic bones from the radiation.
I don't know what to do for my next visit, which is a week from Tuesday, Sept 1st. I could try another blood transfusion locally, maybe on the Friday and hope it holds, but I am afraid that Medicare and my insurance won't pay for it as, strictly speaking, it's not medically necessary. But they won't schedule a transfusion at MDA until their own blood draw shows that I am deficient so I would have to do the 7+ hour dance again and that would only be if they could find an infusion bed for me, last time they used my treatment reservation time and I just overran it by 8 hours.
Nothing's ever easy it seems. I have to have another liver biopsy on the next visit on the Monday with treatment scheduled for Tuesday. Maybe I can get them to draw blood immediately Monday morning and then get them to draw the cross-typing blood so they can work on that while I am having the biopsy and then get the transfusion after that...
Hey, believe me, I am so happy I am getting the treatment and I told the trial co-author, Dr Van Morris that he is going to write me up in medical journals as a complete success, NED for years until I die of other causes - he just smiled and said he hoped so. Its sort of frustrating, not to mention tiring, going through all this every two weeks, but hopefully things will get smoother. I don't seem to be having any side effects other than fatigue - but then again that could be from the half hour trip to the airport, the two hour wait because the flight has been delayed by an hour (again!), the 5 1/2 hour flight, including stop, and then the hour drive from the airport to home! All in all, after a day to recover, I feel pretty good and just know that those lovely Nivolumabs are showing the t-cells where to go and root out all the nasties, it may take a while, but me and my t-cells are going to win!
Carol
hope all goes smoothly for you.....i always ran late during treatments at MDA because they have thousands of people that they are taking care of daily ....also emergencies happen quite often....if your schedule says labs on one day usually you can walk into the lab and get it the day before...maybe this is different for clinical trials.....there is a lab in both the main building and the Mays building....also be careful that whatever you do before you go to MDA does not keep you from eligibilty to continue the trial....all sorts of requirements.....good luck and hope it all runs smoothly for you....sephie
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Extended Stay FacilityCazz said:Thank you All
for your encouragement and good wishes, its nice to know that people are rooting for you.
This trip didn't go quite as smoothly as I had hoped. I had prepared for it, I thought, by getting a blood transfusion here in California on the Thursday (13th), which boosted my hemoglobin to 11.2 - but by the time they drew my blood one week later, it had dropped to 9.9! And of course 10 is the cut off. So, yet another blood transfusion - at MD Anderson that means a blood draw, then a five-hour wait while they cross-type it, and then two hours to infuse it - then I had to wait for someone to come out from the lab to do another draw to confirm and document that it was over 10 (it got back up to 11.1) for the trial. By that time it was after 7 pm and they wanted to wait till the next day for the Nivolumab infusion, but I was flying home the next day, admittedly not till 3:30 pm, and I told them flat out that I didn't trust them and I was sure something would go wrong if I waited, so wanted the treatment now. I called the trial coordinator, who called the doctor (not Dr Eng, she was overseas giving a lecture), who talked to the charge nurse and they agreed that if I was adamant, I should get the treatment now and there was just time to do it there before the center closed at 10 pm. Luckily, it didn't take them long to make up the dose and they first gave me Benadryl and then the Nivolumab. We left there at 10 pm and because all the shuttles had stopped running, walked less than half a mile back to the hotel and crashed after a 13 hour day!
I don't like that I don't seem to be able to hold on to my red blood cells and certainly don't like all these blood transfusions I am having to get. It sort of feels like playing Russian roulette, but I don't know what my options are. I asked my doctor if I should be taking iron supplements and eating spinach, but he said that wouldn't help, I'm not iron deficient its just that I'm just not making enough red blood cells to keep up - probably because of the damage caused to the pelvic bones from the radiation.
I don't know what to do for my next visit, which is a week from Tuesday, Sept 1st. I could try another blood transfusion locally, maybe on the Friday and hope it holds, but I am afraid that Medicare and my insurance won't pay for it as, strictly speaking, it's not medically necessary. But they won't schedule a transfusion at MDA until their own blood draw shows that I am deficient so I would have to do the 7+ hour dance again and that would only be if they could find an infusion bed for me, last time they used my treatment reservation time and I just overran it by 8 hours.
Nothing's ever easy it seems. I have to have another liver biopsy on the next visit on the Monday with treatment scheduled for Tuesday. Maybe I can get them to draw blood immediately Monday morning and then get them to draw the cross-typing blood so they can work on that while I am having the biopsy and then get the transfusion after that...
Hey, believe me, I am so happy I am getting the treatment and I told the trial co-author, Dr Van Morris that he is going to write me up in medical journals as a complete success, NED for years until I die of other causes - he just smiled and said he hoped so. Its sort of frustrating, not to mention tiring, going through all this every two weeks, but hopefully things will get smoother. I don't seem to be having any side effects other than fatigue - but then again that could be from the half hour trip to the airport, the two hour wait because the flight has been delayed by an hour (again!), the 5 1/2 hour flight, including stop, and then the hour drive from the airport to home! All in all, after a day to recover, I feel pretty good and just know that those lovely Nivolumabs are showing the t-cells where to go and root out all the nasties, it may take a while, but me and my t-cells are going to win!
Carol
Have you considered checking into an extended stay facility in Houston during you treatment? There are several in the Houston area. Perhaps MD Anderson can recommend one that will fit your budget. This might take some of the stress off you knowing you do not have flight consideration and eliminate the tranfusion issue.
Mike
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IronCazz said:Thank you All
for your encouragement and good wishes, its nice to know that people are rooting for you.
This trip didn't go quite as smoothly as I had hoped. I had prepared for it, I thought, by getting a blood transfusion here in California on the Thursday (13th), which boosted my hemoglobin to 11.2 - but by the time they drew my blood one week later, it had dropped to 9.9! And of course 10 is the cut off. So, yet another blood transfusion - at MD Anderson that means a blood draw, then a five-hour wait while they cross-type it, and then two hours to infuse it - then I had to wait for someone to come out from the lab to do another draw to confirm and document that it was over 10 (it got back up to 11.1) for the trial. By that time it was after 7 pm and they wanted to wait till the next day for the Nivolumab infusion, but I was flying home the next day, admittedly not till 3:30 pm, and I told them flat out that I didn't trust them and I was sure something would go wrong if I waited, so wanted the treatment now. I called the trial coordinator, who called the doctor (not Dr Eng, she was overseas giving a lecture), who talked to the charge nurse and they agreed that if I was adamant, I should get the treatment now and there was just time to do it there before the center closed at 10 pm. Luckily, it didn't take them long to make up the dose and they first gave me Benadryl and then the Nivolumab. We left there at 10 pm and because all the shuttles had stopped running, walked less than half a mile back to the hotel and crashed after a 13 hour day!
I don't like that I don't seem to be able to hold on to my red blood cells and certainly don't like all these blood transfusions I am having to get. It sort of feels like playing Russian roulette, but I don't know what my options are. I asked my doctor if I should be taking iron supplements and eating spinach, but he said that wouldn't help, I'm not iron deficient its just that I'm just not making enough red blood cells to keep up - probably because of the damage caused to the pelvic bones from the radiation.
I don't know what to do for my next visit, which is a week from Tuesday, Sept 1st. I could try another blood transfusion locally, maybe on the Friday and hope it holds, but I am afraid that Medicare and my insurance won't pay for it as, strictly speaking, it's not medically necessary. But they won't schedule a transfusion at MDA until their own blood draw shows that I am deficient so I would have to do the 7+ hour dance again and that would only be if they could find an infusion bed for me, last time they used my treatment reservation time and I just overran it by 8 hours.
Nothing's ever easy it seems. I have to have another liver biopsy on the next visit on the Monday with treatment scheduled for Tuesday. Maybe I can get them to draw blood immediately Monday morning and then get them to draw the cross-typing blood so they can work on that while I am having the biopsy and then get the transfusion after that...
Hey, believe me, I am so happy I am getting the treatment and I told the trial co-author, Dr Van Morris that he is going to write me up in medical journals as a complete success, NED for years until I die of other causes - he just smiled and said he hoped so. Its sort of frustrating, not to mention tiring, going through all this every two weeks, but hopefully things will get smoother. I don't seem to be having any side effects other than fatigue - but then again that could be from the half hour trip to the airport, the two hour wait because the flight has been delayed by an hour (again!), the 5 1/2 hour flight, including stop, and then the hour drive from the airport to home! All in all, after a day to recover, I feel pretty good and just know that those lovely Nivolumabs are showing the t-cells where to go and root out all the nasties, it may take a while, but me and my t-cells are going to win!
Carol
Hi Carol
I don't know how helpful this might be but you never know. I had hemoglobin issues after my colostomy and I learned a few things about iron. First of all, contrary to opinion, spinach is not that high in iron. I can't remember what is, you'd have to look it up. Secondly, it's hard for the body to process iron supplements. The dietician told me the best thing to do is to eat red meat, which I didn't do much because I didn't want to get bowel cancer,haha! All I can say is it's worth a try. And remember for your next cycle - third time lucky!
Jackie
0
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