Francyn

Melissa,

  I read your post and had to look twice at your name because I thought you might be my daughter telling my story. In May I was diagnosed with metastatic melanoma in my groin lymph nodes because my left foot swelled up and I thought it was a blood clot.    I have a football size tumor in my left abdomen and groin but contained in the lymph nodes.  I had two rounds of Yervoy three weeks  apart and had the typical side effects of nausea  and diarrhea. I then had some unbelievable pain which turned out to be a ruptured disc in my back as well as the tumor pushing against the kidneys. I went into the hospital and they put stents  in my ureter's and gave me a steroid injection in my back. After two weeks, I was pain-free and still am. I had one round of Opdivo  and tolerated it well. Three weeks later I had both the Yervoy and Opdivo  and went into a toxic state.  After a week, my husband took me to the hospital and they gave me steroids to counteract the meds. A CT showed that the abdominal tumor had not changed and I had additional lymph node affected tumors  in my chest cavity on either side of my aorta. I have had two rounds of chemo with the same meds your mom is on, taxol and carbo.  The chemo has been a breeze compared to the immunotherapy. They have me on lots of steroids which keep me bouncing off the walls. I have had some side effects including hair loss, neuropathy in my feet and now thrush in my throat. Doc said two. drugs are intended to stop the growth of the tumor and possibly shrink it. Hopefully shrink it.  He wanted to do a third drug but the insurance would not approve it and we are still trying to get it through the manufacture.  My legs are weak, but my appetite is good. I have one more round on Monday, then in three weeks another CT. Doc Will decide next course of action when he sees the results. I'm not sure if he will Keytruda , optivo again, Yervoy ( although I am having red blood cell issues with autoimmune disease),  or more chemo. Either way I'm going to fight like a warrior and I hope you and your mom do the same. 

Melissa,

  I read your post and had to look twice at your name because I thought you might be my daughter telling my story. In May I was diagnosed with metastatic melanoma in my groin lymph nodes because my left foot swelled up and I thought it was a blood clot.    I have a football size tumor in my left abdomen and groin but contained in the lymph nodes.  I had two rounds of Yervoy three weeks  apart and had the typical side effects of nausea  and diarrhea. I then had some unbelievable pain which turned out to be a ruptured disc in my back as well as the tumor pushing against the kidneys. I went into the hospital and they put stents  in my ureter's and gave me a steroid injection in my back. After two weeks, I was pain-free and still am. I had one round of Opdivo  and tolerated it well. Three weeks later I had both the Yervoy and Opdivo  and went into a toxic state.  After a week, my husband took me to the hospital and they gave me steroids to counteract the meds. A CT showed that the abdominal tumor had not changed and I had additional lymph node affected tumors  in my chest cavity on either side of my aorta. I have had two rounds of chemo with the same meds your mom is on, taxol and carbo.  The chemo has been a breeze compared to the immunotherapy. They have me on lots of steroids which keep me bouncing off the walls. I have had some side effects including hair loss, neuropathy in my feet and now thrush in my throat. Doc said two. drugs are intended to stop the growth of the tumor and possibly shrink it. Hopefully shrink it.  He wanted to do a third drug but the insurance would not approve it and we are still trying to get it through the manufacture.  My legs are weak, but my appetite is good. I have one more round on Monday, then in three weeks another CT. Doc Will decide next course of action when he sees the results. I'm not sure if he will Keytruda , optivo again, Yervoy ( although I am having red blood cell issues with autoimmune disease),  or more chemo. Either way I'm going to fight like a warrior and I hope you and your mom do the same. 

Melissa,

  I read your post and had to look twice at your name because I thought you might be my daughter telling my story. In May I was diagnosed with metastatic melanoma in my groin lymph nodes because my left foot swelled up and I thought it was a blood clot.    I have a football size tumor in my left abdomen and groin but contained in the lymph nodes.  I had two rounds of Yervoy three weeks  apart and had the typical side effects of nausea  and diarrhea. I then had some unbelievable pain which turned out to be a ruptured disc in my back as well as the tumor pushing against the kidneys. I went into the hospital and they put stents  in my ureter's and gave me a steroid injection in my back. After two weeks, I was pain-free and still am. I had one round of Opdivo  and tolerated it well. Three weeks later I had both the Yervoy and Opdivo  and went into a toxic state.  After a week, my husband took me to the hospital and they gave me steroids to counteract the meds. A CT showed that the abdominal tumor had not changed and I had additional lymph node affected tumors  in my chest cavity on either side of my aorta. I have had two rounds of chemo with the same meds your mom is on, taxol and carbo.  The chemo has been a breeze compared to the immunotherapy. They have me on lots of steroids which keep me bouncing off the walls. I have had some side effects including hair loss, neuropathy in my feet and now thrush in my throat. Doc said two. drugs are intended to stop the growth of the tumor and possibly shrink it. Hopefully shrink it.  He wanted to do a third drug but the insurance would not approve it and we are still trying to get it through the manufacture.  My legs are weak, but my appetite is good. I have one more round on Monday, then in three weeks another CT. Doc Will decide next course of action when he sees the results. I'm not sure if he will Keytruda , optivo again, Yervoy ( although I am having red blood cell issues with autoimmune disease),  or more chemo. Either way I'm going to fight like a warrior and I hope you and your mom do the same. 

 I was on Yervoy and Opdivo,  but it didn't work. Tumors continue to grow. I've had three rounds of Taxol and Carboplatin. Doc also wanted me on Avastin  but insurance did not approve it. During my third round of chemo on Monday, I heard from Genetec  and they approved donating the Avastin. Thursday I had my first round but I do have to pay for administrative costs out-of-pocket. Small price to pay if it works. I'm scheduled for a CT at the end of the month. We'll see how well this works. 

 I was on Yervoy and Opdivo,  but it didn't work. Tumors continue to grow. I've had three rounds of Taxol and Carboplatin. Doc also wanted me on Avastin  but insurance did not approve it. During my third round of chemo on Monday, I heard from Genetec  and they approved donating the Avastin. Thursday I had my first round but I do have to pay for administrative costs out-of-pocket. Small price to pay if it works. I'm scheduled for a CT at the end of the month. We'll see how well this works. 

 I was on Yervoy and Opdivo,  but it didn't work. Tumors continue to grow. I've had three rounds of Taxol and Carboplatin. Doc also wanted me on Avastin  but insurance did not approve it. During my third round of chemo on Monday, I heard from Genetec  and they approved donating the Avastin. Thursday I had my first round but I do have to pay for administrative costs out-of-pocket. Small price to pay if it works. I'm scheduled for a CT at the end of the month. We'll see how well this works. 

Thanks  for the info on the trial. It had not begun when I was first diagnosed. I made contact and have instructions on what to do and when.  I need to wait for next CT and see how chemo has reacted. Will talk to my current oncologist about trial  and keep it in mind if other treatments fail. It is nice to have one more possible option. I would need to go to a different oncologist and health system, but I don't think that is unusual. It is nice to have another option and help. Thank you  to a different oncologist and health system, but I don't think that is unusual. It is nice to have another option and hope. 

Thanks  for the info on the trial. It had not begun when I was first diagnosed. I made contact and have instructions on what to do and when.  I need to wait for next CT and see how chemo has reacted. Will talk to my current oncologist about trial  and keep it in mind if other treatments fail. It is nice to have one more possible option. I would need to go to a different oncologist and health system, but I don't think that is unusual. It is nice to have another option and help. Thank you  to a different oncologist and health system, but I don't think that is unusual. It is nice to have another option and hope. 

Thanks  for the info on the trial. It had not begun when I was first diagnosed. I made contact and have instructions on what to do and when.  I need to wait for next CT and see how chemo has reacted. Will talk to my current oncologist about trial  and keep it in mind if other treatments fail. It is nice to have one more possible option. I would need to go to a different oncologist and health system, but I don't think that is unusual. It is nice to have another option and help. Thank you  to a different oncologist and health system, but I don't think that is unusual. It is nice to have another option and hope. 

Stage IV diagnosed 5/20/16. Had 2 doses of Yervoy 3 weeks apart, then 1 dose of Opdivo (3 weeks), then both 3 weeks later. My body did not like it. I went into a toxic state and week later was hospitalized. Got steroids to bring me back.  CT showed no change in original abdominal lymph node tumors and new lymph node tumors in chest cavity around aorta. Everything still in lymph nodes. Have had two chemo treatments with TaxiL and Carboplatin. Still trying to get approval or donation of Avastin from Genetec. One more chemo next week, then CT around Halloween. Onc will decide then for more chemo or Keytruda. My concern is will my body react the same way to Keytruda as it did with Opdivo?  Are they essentially the same drug or are they different?  I also developed immune deficiency so I usually need two bags of red blood a week. Tough battle but I am a tough warrior. 

Stage IV diagnosed 5/20/16. Had 2 doses of Yervoy 3 weeks apart, then 1 dose of Opdivo (3 weeks), then both 3 weeks later. My body did not like it. I went into a toxic state and week later was hospitalized. Got steroids to bring me back.  CT showed no change in original abdominal lymph node tumors and new lymph node tumors in chest cavity around aorta. Everything still in lymph nodes. Have had two chemo treatments with TaxiL and Carboplatin. Still trying to get approval or donation of Avastin from Genetec. One more chemo next week, then CT around Halloween. Onc will decide then for more chemo or Keytruda. My concern is will my body react the same way to Keytruda as it did with Opdivo?  Are they essentially the same drug or are they different?  I also developed immune deficiency so I usually need two bags of red blood a week. Tough battle but I am a tough warrior. 

Stage IV diagnosed 5/20/16. Had 2 doses of Yervoy 3 weeks apart, then 1 dose of Opdivo (3 weeks), then both 3 weeks later. My body did not like it. I went into a toxic state and week later was hospitalized. Got steroids to bring me back.  CT showed no change in original abdominal lymph node tumors and new lymph node tumors in chest cavity around aorta. Everything still in lymph nodes. Have had two chemo treatments with TaxiL and Carboplatin. Still trying to get approval or donation of Avastin from Genetec. One more chemo next week, then CT around Halloween. Onc will decide then for more chemo or Keytruda. My concern is will my body react the same way to Keytruda as it did with Opdivo?  Are they essentially the same drug or are they different?  I also developed immune deficiency so I usually need two bags of red blood a week. Tough battle but I am a tough warrior.