› Forums › General Melanoma Community › Randy having some fatigue and….
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POW.
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- June 1, 2013 at 1:36 am
So my boyfriend is feeling some fatigue for the first time since starting pd-1. Also, his chest wall tumor which is his largest is causing him some pain and it's gotten inflammed/swollen looking (this is also the tumor that he has had 3 biopsies on so far for the trial). All his other tumors that have been also shrinking arn't inflammed or painful, just this large one. The tumor is and has been really soft as it's dying. I'm hoping it's the accumulation of his immune cells making it so sensitive and larger.
So my boyfriend is feeling some fatigue for the first time since starting pd-1. Also, his chest wall tumor which is his largest is causing him some pain and it's gotten inflammed/swollen looking (this is also the tumor that he has had 3 biopsies on so far for the trial). All his other tumors that have been also shrinking arn't inflammed or painful, just this large one. The tumor is and has been really soft as it's dying. I'm hoping it's the accumulation of his immune cells making it so sensitive and larger. He's been responding exceptionally well thus far, and his scans done a couple weeks ago were awesome, with everything shrinking. He's had 5 infusions so far, hoping that the fatigue is from his body working hard to eliminate this horrid cancer.
I know people have had inflammation of tumors on yervoy, anyone had this on pd1? I'm probably going to email his trial coordinator toinght to give them a heads up, and see what they say.
-Amanda-
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- June 1, 2013 at 3:21 am
Hi Amanda, when my husband was on the BMS PD1 we were told by Dr. Weber at Moffitt that some tumors can become inflamed before shrinking. Unfortunately, Peck did not respond to the trial. I am happy to hear Randy is doing so well, hope and happy thoughts to both of you. Melissa
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- June 1, 2013 at 3:21 am
Hi Amanda, when my husband was on the BMS PD1 we were told by Dr. Weber at Moffitt that some tumors can become inflamed before shrinking. Unfortunately, Peck did not respond to the trial. I am happy to hear Randy is doing so well, hope and happy thoughts to both of you. Melissa
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- June 1, 2013 at 3:21 am
Hi Amanda, when my husband was on the BMS PD1 we were told by Dr. Weber at Moffitt that some tumors can become inflamed before shrinking. Unfortunately, Peck did not respond to the trial. I am happy to hear Randy is doing so well, hope and happy thoughts to both of you. Melissa
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- June 1, 2013 at 3:55 am
Hi Amanda,
I really don’t have info on anti PD 1 side effects, since my husband will only start his treatment this coming week, after waiting for what it seems a very long long time.
He will be treated at UCLA as well, and wanted to know if you could share your experience?
I hope Randy feels better very soon, and all his T -cells are working hard to kill all those bad cells.
All of you are included on my prayers every night.
Elenise ( wife of Jacques) -
- June 1, 2013 at 3:55 am
Hi Amanda,
I really don’t have info on anti PD 1 side effects, since my husband will only start his treatment this coming week, after waiting for what it seems a very long long time.
He will be treated at UCLA as well, and wanted to know if you could share your experience?
I hope Randy feels better very soon, and all his T -cells are working hard to kill all those bad cells.
All of you are included on my prayers every night.
Elenise ( wife of Jacques) -
- June 1, 2013 at 3:55 am
Hi Amanda,
I really don’t have info on anti PD 1 side effects, since my husband will only start his treatment this coming week, after waiting for what it seems a very long long time.
He will be treated at UCLA as well, and wanted to know if you could share your experience?
I hope Randy feels better very soon, and all his T -cells are working hard to kill all those bad cells.
All of you are included on my prayers every night.
Elenise ( wife of Jacques) -
- June 1, 2013 at 3:56 am
Hi Amanda,
I really don’t have info on anti PD 1 side effects, since my husband will only start his treatment this coming week, after waiting for what it seems a very long long time.
He will be treated at UCLA as well, and wanted to know if you could share your experience?
I hope Randy feels better very soon, and all his T -cells are working hard to kill all those bad cells.
All of you are included on my prayers every night.
Elenise ( wife of Jacques) -
- June 1, 2013 at 3:56 am
Hi Amanda,
I really don’t have info on anti PD 1 side effects, since my husband will only start his treatment this coming week, after waiting for what it seems a very long long time.
He will be treated at UCLA as well, and wanted to know if you could share your experience?
I hope Randy feels better very soon, and all his T -cells are working hard to kill all those bad cells.
All of you are included on my prayers every night.
Elenise ( wife of Jacques) -
- June 1, 2013 at 3:56 am
Hi Amanda,
I really don’t have info on anti PD 1 side effects, since my husband will only start his treatment this coming week, after waiting for what it seems a very long long time.
He will be treated at UCLA as well, and wanted to know if you could share your experience?
I hope Randy feels better very soon, and all his T -cells are working hard to kill all those bad cells.
All of you are included on my prayers every night.
Elenise ( wife of Jacques) -
- June 1, 2013 at 3:58 am
Hi Amanda,
I really don’t have info on anti PD 1 side effects, since my husband will only start his treatment this coming week, after waiting for what it seems a very long long time.
He will be treated at UCLA as well, and wanted to know if you could share your experience?
I hope Randy feels better very soon, and all his T -cells are working hard to kill all those bad cells.
All of you are included on my prayers every night.
Elenise ( wife of Jacques)-
- June 9, 2013 at 10:30 am
Hi Elenise~ so sorry for the late reply! UCLA's doctors and nurses have been great overall. It can be very time consuming some days, especially early on when you have to do biopsies, scans, blood work, see the doctor, and get your meds, you can be there for multiple hours. You have to give blood everytime before an infusion, and that can take an hour up to a couple hours to process, in which time you're just sitting around, but they let us come a day early to give blood if we want so we dont have to wait two hours doing nothing before getting the infusion.
Usually, not too much of a wait time to get in your appointment, Nurses are always wonderful, and our Dr. Ribas is awesome. Also the dermatologist who does his biopsies is a really cool guy, Dr. Tumeh.
On a side note, the swelling i thought was inflammation was not, ….my boyfriend had run into a heavey wooden door, and hit his biopsy spot…the stitches on the inside broke and blood started accumulating under the skin making it swell, well the preasure released itself finally though a previous biopsy incision site right above the stitches from this newer biopsy spot. Now now has a hematoma that is draining slowly through a pinky sized whole on my boyfriends chest. We will be getting the hematoma revmoved, and most likey they will take the tumor out as well. The dermatologist who did our biopsies said that randy's cd8 cells are replicating like crazy, im pretty sure those are the 'killer t cells''…..hoping that continues ; )
Best of luck for you and your husband, you'll be in good care are UCLA
-Amanda-
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- June 9, 2013 at 10:30 am
Hi Elenise~ so sorry for the late reply! UCLA's doctors and nurses have been great overall. It can be very time consuming some days, especially early on when you have to do biopsies, scans, blood work, see the doctor, and get your meds, you can be there for multiple hours. You have to give blood everytime before an infusion, and that can take an hour up to a couple hours to process, in which time you're just sitting around, but they let us come a day early to give blood if we want so we dont have to wait two hours doing nothing before getting the infusion.
Usually, not too much of a wait time to get in your appointment, Nurses are always wonderful, and our Dr. Ribas is awesome. Also the dermatologist who does his biopsies is a really cool guy, Dr. Tumeh.
On a side note, the swelling i thought was inflammation was not, ….my boyfriend had run into a heavey wooden door, and hit his biopsy spot…the stitches on the inside broke and blood started accumulating under the skin making it swell, well the preasure released itself finally though a previous biopsy incision site right above the stitches from this newer biopsy spot. Now now has a hematoma that is draining slowly through a pinky sized whole on my boyfriends chest. We will be getting the hematoma revmoved, and most likey they will take the tumor out as well. The dermatologist who did our biopsies said that randy's cd8 cells are replicating like crazy, im pretty sure those are the 'killer t cells''…..hoping that continues ; )
Best of luck for you and your husband, you'll be in good care are UCLA
-Amanda-
-
- June 9, 2013 at 10:30 am
Hi Elenise~ so sorry for the late reply! UCLA's doctors and nurses have been great overall. It can be very time consuming some days, especially early on when you have to do biopsies, scans, blood work, see the doctor, and get your meds, you can be there for multiple hours. You have to give blood everytime before an infusion, and that can take an hour up to a couple hours to process, in which time you're just sitting around, but they let us come a day early to give blood if we want so we dont have to wait two hours doing nothing before getting the infusion.
Usually, not too much of a wait time to get in your appointment, Nurses are always wonderful, and our Dr. Ribas is awesome. Also the dermatologist who does his biopsies is a really cool guy, Dr. Tumeh.
On a side note, the swelling i thought was inflammation was not, ….my boyfriend had run into a heavey wooden door, and hit his biopsy spot…the stitches on the inside broke and blood started accumulating under the skin making it swell, well the preasure released itself finally though a previous biopsy incision site right above the stitches from this newer biopsy spot. Now now has a hematoma that is draining slowly through a pinky sized whole on my boyfriends chest. We will be getting the hematoma revmoved, and most likey they will take the tumor out as well. The dermatologist who did our biopsies said that randy's cd8 cells are replicating like crazy, im pretty sure those are the 'killer t cells''…..hoping that continues ; )
Best of luck for you and your husband, you'll be in good care are UCLA
-Amanda-
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- June 1, 2013 at 3:58 am
Hi Amanda,
I really don’t have info on anti PD 1 side effects, since my husband will only start his treatment this coming week, after waiting for what it seems a very long long time.
He will be treated at UCLA as well, and wanted to know if you could share your experience?
I hope Randy feels better very soon, and all his T -cells are working hard to kill all those bad cells.
All of you are included on my prayers every night.
Elenise ( wife of Jacques) -
- June 1, 2013 at 3:58 am
Hi Amanda,
I really don’t have info on anti PD 1 side effects, since my husband will only start his treatment this coming week, after waiting for what it seems a very long long time.
He will be treated at UCLA as well, and wanted to know if you could share your experience?
I hope Randy feels better very soon, and all his T -cells are working hard to kill all those bad cells.
All of you are included on my prayers every night.
Elenise ( wife of Jacques) -
- June 9, 2013 at 2:42 pm
Who'd a thunk?! Here we all are worried to death that every lump and bump we see is melanoma related and come to find out, in this case at least, it really is just a lump and bump! Such a good lesson about not allowing ourselves to get all bent out of shape about something until we really have to. Thank you, Amanda, for clearing up this mystery for us. I'm delighted that things are going so well for Randy and the anti-PD1 and that his "cd 8 cells are replicating like crazy.". I'll keep praying that he turns out to be a complete responder! Keep up the good work.
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- June 9, 2013 at 2:42 pm
Who'd a thunk?! Here we all are worried to death that every lump and bump we see is melanoma related and come to find out, in this case at least, it really is just a lump and bump! Such a good lesson about not allowing ourselves to get all bent out of shape about something until we really have to. Thank you, Amanda, for clearing up this mystery for us. I'm delighted that things are going so well for Randy and the anti-PD1 and that his "cd 8 cells are replicating like crazy.". I'll keep praying that he turns out to be a complete responder! Keep up the good work.
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- June 9, 2013 at 2:42 pm
Who'd a thunk?! Here we all are worried to death that every lump and bump we see is melanoma related and come to find out, in this case at least, it really is just a lump and bump! Such a good lesson about not allowing ourselves to get all bent out of shape about something until we really have to. Thank you, Amanda, for clearing up this mystery for us. I'm delighted that things are going so well for Randy and the anti-PD1 and that his "cd 8 cells are replicating like crazy.". I'll keep praying that he turns out to be a complete responder! Keep up the good work.
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