Good News

Hi Lisa,

So glad to hear the good news! I also have my first set of scans next week and my anxiety is to the roof! I also have only one lymph node involved and I pray that the treatment is working! I'm in the phase 3 Nivo / Ippi/ Nivo+Ippi trial!

Maureen,good luck with the scans ! Pray for great results!

Dana

Hi Lisa,

Great to hear about Craig's scans.  Thanks for posting.

Brendan

Hi Lisa,

Great to hear about Craig's scans.  Thanks for posting.

Brendan

Hi Lisa,

Great to hear about Craig's scans.  Thanks for posting.

Brendan

I totally understand your anxiety Dana!! Let's pray my husband and you both get great scans and we can celebrate with a cup of coffee. 🙂 Check out the Washington Post health section today. There's a huge article on cancer and Dr. Atkins and Dr. Rosenberg are prominently featured. They have different opinions and only time will tell who is correct. I'm hoping that a combination of both of their treatments is the way to go since my husband has done both treatments. I will try to put the article up later when I have time.

Maureen

I totally understand your anxiety Dana!! Let's pray my husband and you both get great scans and we can celebrate with a cup of coffee. 🙂 Check out the Washington Post health section today. There's a huge article on cancer and Dr. Atkins and Dr. Rosenberg are prominently featured. They have different opinions and only time will tell who is correct. I'm hoping that a combination of both of their treatments is the way to go since my husband has done both treatments. I will try to put the article up later when I have time.

Maureen

I totally understand your anxiety Dana!! Let's pray my husband and you both get great scans and we can celebrate with a cup of coffee. 🙂 Check out the Washington Post health section today. There's a huge article on cancer and Dr. Atkins and Dr. Rosenberg are prominently featured. They have different opinions and only time will tell who is correct. I'm hoping that a combination of both of their treatments is the way to go since my husband has done both treatments. I will try to put the article up later when I have time.

Maureen

Hi Lisa,

So glad to hear the good news! I also have my first set of scans next week and my anxiety is to the roof! I also have only one lymph node involved and I pray that the treatment is working! I'm in the phase 3 Nivo / Ippi/ Nivo+Ippi trial!

Maureen,good luck with the scans ! Pray for great results!

Dana

Hi Lisa,

So glad to hear the good news! I also have my first set of scans next week and my anxiety is to the roof! I also have only one lymph node involved and I pray that the treatment is working! I'm in the phase 3 Nivo / Ippi/ Nivo+Ippi trial!

Maureen,good luck with the scans ! Pray for great results!

Dana

Thanks Pat for the prayers! He has been off the steroids for two weeks and feeling good. Last week we went to Pittsburg and he met with a hematologist who still felt he wasn't ready to start the maintainence stage of nivolumbab. His hemoglobin levels have stayed consistently around 10, but he felt because the LDH level hadn't returned to under 200 that hemolysis was still occurring. My one hope for that is that Yervoy is still in his system. He wanted to wait another week and do scans Thursday. BMS is being very cautious because Bill is apparently the only patient in the phase one trial who has this side effect. Hopefully, he will have good scans because he hasn't had any drugs since the first of December due to this side effect. The waiting never gets easier though.

Maureen

Thanks Pat for the prayers! He has been off the steroids for two weeks and feeling good. Last week we went to Pittsburg and he met with a hematologist who still felt he wasn't ready to start the maintainence stage of nivolumbab. His hemoglobin levels have stayed consistently around 10, but he felt because the LDH level hadn't returned to under 200 that hemolysis was still occurring. My one hope for that is that Yervoy is still in his system. He wanted to wait another week and do scans Thursday. BMS is being very cautious because Bill is apparently the only patient in the phase one trial who has this side effect. Hopefully, he will have good scans because he hasn't had any drugs since the first of December due to this side effect. The waiting never gets easier though.

Maureen

Gee, Maureen, you're kind of between a rock and a hard place with the LDH levels, aren't you? That's a tough position to be in. Does the high LDH level mean that the hemolytic anemia is still a problem? If so, of course you want to delay any more ipi treatments. On the other hand, a high LDH level can also indicate a large tumor burden, so you would want to restart the ipi (or other treatment) as soon as possible. 

I was wondering, has anyone been tracking the LDH isozyme profile of your husband's blood? There are actually 5 different types of LDH; different tissues (like heart and or muscle) contain different types or "isozymes" of LDH. Sometimes doing an "LDH isozyme test" rather than a "total LDH" test can help to pinpoint where the LDH is coming from and therefore localize the source of the disease. You can read more about the LDH isozyme test here http://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=167&ContentID=lactate_dehydrogenase_isoenzymes

Since your husband is seeing a hemotologist (an excellent decision, by the way) I wonder if you could ask the doctor about your husband's isozyme profile. It might help you and your doctors with your next treatment decision.

Gee, Maureen, you're kind of between a rock and a hard place with the LDH levels, aren't you? That's a tough position to be in. Does the high LDH level mean that the hemolytic anemia is still a problem? If so, of course you want to delay any more ipi treatments. On the other hand, a high LDH level can also indicate a large tumor burden, so you would want to restart the ipi (or other treatment) as soon as possible. 

I was wondering, has anyone been tracking the LDH isozyme profile of your husband's blood? There are actually 5 different types of LDH; different tissues (like heart and or muscle) contain different types or "isozymes" of LDH. Sometimes doing an "LDH isozyme test" rather than a "total LDH" test can help to pinpoint where the LDH is coming from and therefore localize the source of the disease. You can read more about the LDH isozyme test here http://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=167&ContentID=lactate_dehydrogenase_isoenzymes

Since your husband is seeing a hemotologist (an excellent decision, by the way) I wonder if you could ask the doctor about your husband's isozyme profile. It might help you and your doctors with your next treatment decision.

Gee, Maureen, you're kind of between a rock and a hard place with the LDH levels, aren't you? That's a tough position to be in. Does the high LDH level mean that the hemolytic anemia is still a problem? If so, of course you want to delay any more ipi treatments. On the other hand, a high LDH level can also indicate a large tumor burden, so you would want to restart the ipi (or other treatment) as soon as possible. 

I was wondering, has anyone been tracking the LDH isozyme profile of your husband's blood? There are actually 5 different types of LDH; different tissues (like heart and or muscle) contain different types or "isozymes" of LDH. Sometimes doing an "LDH isozyme test" rather than a "total LDH" test can help to pinpoint where the LDH is coming from and therefore localize the source of the disease. You can read more about the LDH isozyme test here http://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=167&ContentID=lactate_dehydrogenase_isoenzymes

Since your husband is seeing a hemotologist (an excellent decision, by the way) I wonder if you could ask the doctor about your husband's isozyme profile. It might help you and your doctors with your next treatment decision.

Thanks Pat for the prayers! He has been off the steroids for two weeks and feeling good. Last week we went to Pittsburg and he met with a hematologist who still felt he wasn't ready to start the maintainence stage of nivolumbab. His hemoglobin levels have stayed consistently around 10, but he felt because the LDH level hadn't returned to under 200 that hemolysis was still occurring. My one hope for that is that Yervoy is still in his system. He wanted to wait another week and do scans Thursday. BMS is being very cautious because Bill is apparently the only patient in the phase one trial who has this side effect. Hopefully, he will have good scans because he hasn't had any drugs since the first of December due to this side effect. The waiting never gets easier though.

Maureen