› Forums › General Melanoma Community › Good news but important questions
- This topic has 18 replies, 3 voices, and was last updated 11 years, 8 months ago by
kylez.
- Post
-
- July 25, 2014 at 1:46 pm
Bill was allowed three more infusions of nivolumbab instead of being taken off the trial. He argued that because it was a terrible allergy season and his esophills count was so high that that might be a reason his hilar and mediastinal lymph nodes were slightly enlarged. Scans on Monday showed shrinkage in all of his lymph nodes and his esophills count is still extremely high. He had two percent shrinkage and he has now had ten infusions. On his seventh infusion he developed vitiligo that continues to spread from his face, arms and now legs.
Hear are my questions:
1. Is it possible for the nivolumbab to also be causing the esophills count to be so high because it amps up the immune system?
2. Bill has one lung nodule that continues to grow slowly each scan. It is now 2 cm. Is it more effective to do VATS surgery if after the next scan it grows more or would you use radiation?
Thanks for any advice!!
Maureen
- Replies
-
-
- July 26, 2014 at 12:43 am
Oops, a misspelling there – it's eosinophils, a generally minor group of white blood cells.
-
- July 26, 2014 at 12:43 am
Oops, a misspelling there – it's eosinophils, a generally minor group of white blood cells.
-
- July 26, 2014 at 12:43 am
Oops, a misspelling there – it's eosinophils, a generally minor group of white blood cells.
-
- July 26, 2014 at 1:55 am
Hi Maureen,
Congrats to your husband for getting a good response and new shrinkage!!! Sure sounds like it was a really good move, pushing for him to stay on trial.
I've been on Nivolumab combined with an anti-KIR drug, since March. I get Nivo (3mg/kg) every 2 weeks, and the other one every four. My eosinophils do seem to have been trending up since I started — initially 2.0 on day 1 in March, then 1.4, 2.5, 2.8, 1.5, 3.9, 5.6, 3.8, 6, and most recently 10.1 just before the ninth infusion a couple of weeks ago. That most recent is out of what I understand the normal range is — maybe not very far, I don't know. Maybe it's nivo, or a blip, or maybe it is just hay fever!
Re: surgery vs. radiation, Since these situations are always so unique, my best advice would be, to seek second and maybe even third opinion if that becomes necessary. Back in 2010 I had 8 small lung mets bilaterally, all of which resolved on IL-2. All my docs had advised me to do the systemic treatment rather than try to simply excise them all. But that was uniquely my situation in 2010.
Fast forward to today, I'm being treated for a paratracheal lymph node, apparently about 3.5 x 5.0 cm on the last scan. Before starting this trial, I discussed other options with the trial doctor and with my regular oncologist — surgery, cyberknife, IPI, wait and watch. Those options would probably be the ones I would look at again if I needed to leave this trial. Given my past (this is perhaps my 4th or 5th recurrence depending on how I count them) I would have a bias to looking for another systemic treatment, but there's also the possibility I would need surgery or radiation — maybe mine is too big for cyberknife now, though.I don't have any vitiligo. I do think my trial doctor would be happy if he saw some on me!!!! Hope this helps.
– Kyle
-
- July 26, 2014 at 1:55 am
Hi Maureen,
Congrats to your husband for getting a good response and new shrinkage!!! Sure sounds like it was a really good move, pushing for him to stay on trial.
I've been on Nivolumab combined with an anti-KIR drug, since March. I get Nivo (3mg/kg) every 2 weeks, and the other one every four. My eosinophils do seem to have been trending up since I started — initially 2.0 on day 1 in March, then 1.4, 2.5, 2.8, 1.5, 3.9, 5.6, 3.8, 6, and most recently 10.1 just before the ninth infusion a couple of weeks ago. That most recent is out of what I understand the normal range is — maybe not very far, I don't know. Maybe it's nivo, or a blip, or maybe it is just hay fever!
Re: surgery vs. radiation, Since these situations are always so unique, my best advice would be, to seek second and maybe even third opinion if that becomes necessary. Back in 2010 I had 8 small lung mets bilaterally, all of which resolved on IL-2. All my docs had advised me to do the systemic treatment rather than try to simply excise them all. But that was uniquely my situation in 2010.
Fast forward to today, I'm being treated for a paratracheal lymph node, apparently about 3.5 x 5.0 cm on the last scan. Before starting this trial, I discussed other options with the trial doctor and with my regular oncologist — surgery, cyberknife, IPI, wait and watch. Those options would probably be the ones I would look at again if I needed to leave this trial. Given my past (this is perhaps my 4th or 5th recurrence depending on how I count them) I would have a bias to looking for another systemic treatment, but there's also the possibility I would need surgery or radiation — maybe mine is too big for cyberknife now, though.I don't have any vitiligo. I do think my trial doctor would be happy if he saw some on me!!!! Hope this helps.
– Kyle
-
- July 26, 2014 at 1:55 am
Hi Maureen,
Congrats to your husband for getting a good response and new shrinkage!!! Sure sounds like it was a really good move, pushing for him to stay on trial.
I've been on Nivolumab combined with an anti-KIR drug, since March. I get Nivo (3mg/kg) every 2 weeks, and the other one every four. My eosinophils do seem to have been trending up since I started — initially 2.0 on day 1 in March, then 1.4, 2.5, 2.8, 1.5, 3.9, 5.6, 3.8, 6, and most recently 10.1 just before the ninth infusion a couple of weeks ago. That most recent is out of what I understand the normal range is — maybe not very far, I don't know. Maybe it's nivo, or a blip, or maybe it is just hay fever!
Re: surgery vs. radiation, Since these situations are always so unique, my best advice would be, to seek second and maybe even third opinion if that becomes necessary. Back in 2010 I had 8 small lung mets bilaterally, all of which resolved on IL-2. All my docs had advised me to do the systemic treatment rather than try to simply excise them all. But that was uniquely my situation in 2010.
Fast forward to today, I'm being treated for a paratracheal lymph node, apparently about 3.5 x 5.0 cm on the last scan. Before starting this trial, I discussed other options with the trial doctor and with my regular oncologist — surgery, cyberknife, IPI, wait and watch. Those options would probably be the ones I would look at again if I needed to leave this trial. Given my past (this is perhaps my 4th or 5th recurrence depending on how I count them) I would have a bias to looking for another systemic treatment, but there's also the possibility I would need surgery or radiation — maybe mine is too big for cyberknife now, though.I don't have any vitiligo. I do think my trial doctor would be happy if he saw some on me!!!! Hope this helps.
– Kyle
-
- July 26, 2014 at 2:38 am
Maureen, in February I had a 1.3-cm lung met treated with SBRT (radiation) and it has responded very well. By April it was smaller and less active on my PET-CT scan and on my PET-CT last week, it didn't even make the report. We discussed surgical options early on, but there was a strong agreement that radiation was the better route for this particular tumor. I wrote some more more detail in response to another person's thread not long ago here:I hope you find it helpful as you consider your options, Joe -
- July 26, 2014 at 2:38 am
Maureen, in February I had a 1.3-cm lung met treated with SBRT (radiation) and it has responded very well. By April it was smaller and less active on my PET-CT scan and on my PET-CT last week, it didn't even make the report. We discussed surgical options early on, but there was a strong agreement that radiation was the better route for this particular tumor. I wrote some more more detail in response to another person's thread not long ago here:I hope you find it helpful as you consider your options, Joe-
- July 27, 2014 at 11:55 pm
Thank you Kyle and Joe for your great advice! Dr. Kirkwood has commented on Bill's very high eosinophill count (27 right now). He's an excellent melanoma specialist and a kind man. We have read several articles about a high eosinophill count in relation to cancer and it seems to be a help. Honestly though, we don't feel out of the woods yet. The rest of his lung mets are responding to nivolumbab. We are hoping and praying that the next scans show more shrinkage in regards to the one lung nodule that is growing and the lymph nodes. Joe, I really appreciate all the details you put about all your treatments. It helps. I agree with both of you that I would prefer Bill have the radiation on the one nodule. Wishing you both the best!
Maureen
-
- July 27, 2014 at 11:55 pm
Thank you Kyle and Joe for your great advice! Dr. Kirkwood has commented on Bill's very high eosinophill count (27 right now). He's an excellent melanoma specialist and a kind man. We have read several articles about a high eosinophill count in relation to cancer and it seems to be a help. Honestly though, we don't feel out of the woods yet. The rest of his lung mets are responding to nivolumbab. We are hoping and praying that the next scans show more shrinkage in regards to the one lung nodule that is growing and the lymph nodes. Joe, I really appreciate all the details you put about all your treatments. It helps. I agree with both of you that I would prefer Bill have the radiation on the one nodule. Wishing you both the best!
Maureen
-
- July 27, 2014 at 11:55 pm
Thank you Kyle and Joe for your great advice! Dr. Kirkwood has commented on Bill's very high eosinophill count (27 right now). He's an excellent melanoma specialist and a kind man. We have read several articles about a high eosinophill count in relation to cancer and it seems to be a help. Honestly though, we don't feel out of the woods yet. The rest of his lung mets are responding to nivolumbab. We are hoping and praying that the next scans show more shrinkage in regards to the one lung nodule that is growing and the lymph nodes. Joe, I really appreciate all the details you put about all your treatments. It helps. I agree with both of you that I would prefer Bill have the radiation on the one nodule. Wishing you both the best!
Maureen
-
- July 26, 2014 at 2:38 am
Maureen, in February I had a 1.3-cm lung met treated with SBRT (radiation) and it has responded very well. By April it was smaller and less active on my PET-CT scan and on my PET-CT last week, it didn't even make the report. We discussed surgical options early on, but there was a strong agreement that radiation was the better route for this particular tumor. I wrote some more more detail in response to another person's thread not long ago here:I hope you find it helpful as you consider your options, Joe
-
- You must be logged in to reply to this topic.