2nd Yervoy Treatment today!

Hi Theresa,

God has definitely blessed Jackie! She/we have a lot of people praying for us, so we know that makes a huge difference :)You mentioned that you have partial results. Was wondering what that means? I have read that for most people they have a full amount of Yervoy in their system at the third infusion. Also we have heard that for people that will have more serious side effects at the 3rd or 4th Yervoy infusion. So far Jackie only had a little itching once between first and second Yervoy infusions, and it was alleviated after putting on some lotion. Mainly we notice that Jackie has more fatigue than she typically already has from her rare lung disease, LAM. Hope things continue to go well for you as well.

Thanks,

Bruce and Jackie
 

Hi Theresa,

God has definitely blessed Jackie! She/we have a lot of people praying for us, so we know that makes a huge difference :)You mentioned that you have partial results. Was wondering what that means? I have read that for most people they have a full amount of Yervoy in their system at the third infusion. Also we have heard that for people that will have more serious side effects at the 3rd or 4th Yervoy infusion. So far Jackie only had a little itching once between first and second Yervoy infusions, and it was alleviated after putting on some lotion. Mainly we notice that Jackie has more fatigue than she typically already has from her rare lung disease, LAM. Hope things continue to go well for you as well.

Thanks,

Bruce and Jackie
 

Hi Theresa,

God has definitely blessed Jackie! She/we have a lot of people praying for us, so we know that makes a huge difference :)You mentioned that you have partial results. Was wondering what that means? I have read that for most people they have a full amount of Yervoy in their system at the third infusion. Also we have heard that for people that will have more serious side effects at the 3rd or 4th Yervoy infusion. So far Jackie only had a little itching once between first and second Yervoy infusions, and it was alleviated after putting on some lotion. Mainly we notice that Jackie has more fatigue than she typically already has from her rare lung disease, LAM. Hope things continue to go well for you as well.

Thanks,

Bruce and Jackie
 

Hi Joan,

Jackie has been on Yervoy for 4 weeks now with infusion #1 on February 3rd, and infusion #2 on February 24th. Mainly Jackie is suffering from more fatigue. She has had some minor intestinal side effects, but so far nothing that has needed treatments. We found our her internist has also treatment Yervoy side effects along with her oncologist, as we got her into to see the internist earlier this week. Will get Jackie into see her pulmonolgist next week as she is a little more short of breath that she typically has from her rare lung diseaes, LAM. There was some pleural effusions seen on her January PET scan at the Mayo Clinic that were minimally FDG positive, so I am sure that can't be making it any easier for her to breathe. I think the pre-medications are just standard operating procedure at our cancer center for any treatment, not necessarily specific to Yervoy.

Jackie is scheduled for infusion #3 on March 16th.

Interestingly enough, we haven't seen the bill for our part of the two Yervoy treatments from our insurance company, not even an explanation of benefits. We were told how much it is supposed to be, but it would still be good to see it in writing. Not the biggest concern. Have seen some big bills from Mayo Clinic that were all covered except for a couple doctor's co-pays. And some big bills locally for expenses related to having her port put in. Jackie is getting weekly blood draws via her port. So they are keeping a pretty close eye on her.  

Keep us posted on how you are doing too.

Thanks,

Bruce and Jackie

Jackie has been having mild to moderate side effects the last day or so. The countermeasures seem to be effective so far. Jackie didn't get a lot of rest this morning, so she has been catching up on rest most of the day. Please pray that the side effects continue to be mild to moderate, that the countermeasures continue to be effective, and the Yervoy shrinks the melanoma tumors to point of No Evidence of Disease.

Thanks,

Bruce and Jackie

Jackie has been having mild to moderate side effects the last day or so. The countermeasures seem to be effective so far. Jackie didn't get a lot of rest this morning, so she has been catching up on rest most of the day. Please pray that the side effects continue to be mild to moderate, that the countermeasures continue to be effective, and the Yervoy shrinks the melanoma tumors to point of No Evidence of Disease.

Thanks,

Bruce and Jackie

The last 6 days since Jackie's 2nd Yervoy infusion have been quite challenging. We did what we could to keep her out of the hospital. Last Friday she started having some abdominal discomfort. Started having intestinal side effects Saturday, and we switched her to clear liquids. Then to bland diet, and back and forth between clear liquids and bland diet. Tuesday night we took her to ER on oncologist advice. Had to get her IV fluids, IV anti-nausea med, and IV potassium, as she was very low on potassium. Yesterday we started Jackie on high dose steroids and potassium in pill form. She has responded pretty well to this, but had a little trouble resting last night even with a strong sleep aid. Today she took her steroids with breakfast, so hopefully it will not wire her up so much this evening, so she can rest better. At this point, we have postponed her 3rd Yervoy treatment scheduled on March 16th. A lady who has the same lung disease  as Jackie let me know today that her daughter-in-law was not able to continue with 3rd or 4th Yervoy treatments due to the side effects. She has had to stay on high dose steroids and a bland diet, but her liver tumors have been shrinking, so the Yervoy has modified her immune system and it continues to fight the melanoma. Guess we weren't exactly expecting the side effects after the 2nd Yervoy treatment, so it was a bit of a surprise, but we were prepared, and stayed in communication with the oncology team to manage Jackie's side effects. Everybody reacts differently I guess is the take away for the time being. Seems that the steroids are doing their job to tap the brakes on the Yervoy so to speak. Stay tuned for updates. Thanks for your thoughts and prayers!

Thanks,
Bruce and Jackie

The last 6 days since Jackie's 2nd Yervoy infusion have been quite challenging. We did what we could to keep her out of the hospital. Last Friday she started having some abdominal discomfort. Started having intestinal side effects Saturday, and we switched her to clear liquids. Then to bland diet, and back and forth between clear liquids and bland diet. Tuesday night we took her to ER on oncologist advice. Had to get her IV fluids, IV anti-nausea med, and IV potassium, as she was very low on potassium. Yesterday we started Jackie on high dose steroids and potassium in pill form. She has responded pretty well to this, but had a little trouble resting last night even with a strong sleep aid. Today she took her steroids with breakfast, so hopefully it will not wire her up so much this evening, so she can rest better. At this point, we have postponed her 3rd Yervoy treatment scheduled on March 16th. A lady who has the same lung disease  as Jackie let me know today that her daughter-in-law was not able to continue with 3rd or 4th Yervoy treatments due to the side effects. She has had to stay on high dose steroids and a bland diet, but her liver tumors have been shrinking, so the Yervoy has modified her immune system and it continues to fight the melanoma. Guess we weren't exactly expecting the side effects after the 2nd Yervoy treatment, so it was a bit of a surprise, but we were prepared, and stayed in communication with the oncology team to manage Jackie's side effects. Everybody reacts differently I guess is the take away for the time being. Seems that the steroids are doing their job to tap the brakes on the Yervoy so to speak. Stay tuned for updates. Thanks for your thoughts and prayers!

Thanks,
Bruce and Jackie

The last 6 days since Jackie's 2nd Yervoy infusion have been quite challenging. We did what we could to keep her out of the hospital. Last Friday she started having some abdominal discomfort. Started having intestinal side effects Saturday, and we switched her to clear liquids. Then to bland diet, and back and forth between clear liquids and bland diet. Tuesday night we took her to ER on oncologist advice. Had to get her IV fluids, IV anti-nausea med, and IV potassium, as she was very low on potassium. Yesterday we started Jackie on high dose steroids and potassium in pill form. She has responded pretty well to this, but had a little trouble resting last night even with a strong sleep aid. Today she took her steroids with breakfast, so hopefully it will not wire her up so much this evening, so she can rest better. At this point, we have postponed her 3rd Yervoy treatment scheduled on March 16th. A lady who has the same lung disease  as Jackie let me know today that her daughter-in-law was not able to continue with 3rd or 4th Yervoy treatments due to the side effects. She has had to stay on high dose steroids and a bland diet, but her liver tumors have been shrinking, so the Yervoy has modified her immune system and it continues to fight the melanoma. Guess we weren't exactly expecting the side effects after the 2nd Yervoy treatment, so it was a bit of a surprise, but we were prepared, and stayed in communication with the oncology team to manage Jackie's side effects. Everybody reacts differently I guess is the take away for the time being. Seems that the steroids are doing their job to tap the brakes on the Yervoy so to speak. Stay tuned for updates. Thanks for your thoughts and prayers!

Thanks,
Bruce and Jackie

Jackie has been having mild to moderate side effects the last day or so. The countermeasures seem to be effective so far. Jackie didn't get a lot of rest this morning, so she has been catching up on rest most of the day. Please pray that the side effects continue to be mild to moderate, that the countermeasures continue to be effective, and the Yervoy shrinks the melanoma tumors to point of No Evidence of Disease.

Thanks,

Bruce and Jackie

Hi Joan,

Jackie has been on Yervoy for 4 weeks now with infusion #1 on February 3rd, and infusion #2 on February 24th. Mainly Jackie is suffering from more fatigue. She has had some minor intestinal side effects, but so far nothing that has needed treatments. We found our her internist has also treatment Yervoy side effects along with her oncologist, as we got her into to see the internist earlier this week. Will get Jackie into see her pulmonolgist next week as she is a little more short of breath that she typically has from her rare lung diseaes, LAM. There was some pleural effusions seen on her January PET scan at the Mayo Clinic that were minimally FDG positive, so I am sure that can't be making it any easier for her to breathe. I think the pre-medications are just standard operating procedure at our cancer center for any treatment, not necessarily specific to Yervoy.

Jackie is scheduled for infusion #3 on March 16th.

Interestingly enough, we haven't seen the bill for our part of the two Yervoy treatments from our insurance company, not even an explanation of benefits. We were told how much it is supposed to be, but it would still be good to see it in writing. Not the biggest concern. Have seen some big bills from Mayo Clinic that were all covered except for a couple doctor's co-pays. And some big bills locally for expenses related to having her port put in. Jackie is getting weekly blood draws via her port. So they are keeping a pretty close eye on her.  

Keep us posted on how you are doing too.

Thanks,

Bruce and Jackie

Hi Joan,

Jackie has been on Yervoy for 4 weeks now with infusion #1 on February 3rd, and infusion #2 on February 24th. Mainly Jackie is suffering from more fatigue. She has had some minor intestinal side effects, but so far nothing that has needed treatments. We found our her internist has also treatment Yervoy side effects along with her oncologist, as we got her into to see the internist earlier this week. Will get Jackie into see her pulmonolgist next week as she is a little more short of breath that she typically has from her rare lung diseaes, LAM. There was some pleural effusions seen on her January PET scan at the Mayo Clinic that were minimally FDG positive, so I am sure that can't be making it any easier for her to breathe. I think the pre-medications are just standard operating procedure at our cancer center for any treatment, not necessarily specific to Yervoy.

Jackie is scheduled for infusion #3 on March 16th.

Interestingly enough, we haven't seen the bill for our part of the two Yervoy treatments from our insurance company, not even an explanation of benefits. We were told how much it is supposed to be, but it would still be good to see it in writing. Not the biggest concern. Have seen some big bills from Mayo Clinic that were all covered except for a couple doctor's co-pays. And some big bills locally for expenses related to having her port put in. Jackie is getting weekly blood draws via her port. So they are keeping a pretty close eye on her.  

Keep us posted on how you are doing too.

Thanks,

Bruce and Jackie

Hi Browneyesangel,

You have come to a good place to get advice and positive feedback. A second opinion is always a good idea. My wife Jackie has a local oncology team, as well as an oncology team at the Mayo Clinic who coordinate her care. She effectively has three cancers, with the melanoma currently being the most aggressvie.

Personally I have found the NCCN  patient guidelines very helpful for understanding melanoma, understanding the staging, understanding the treatment options, etc. I have included the link here for you. It is a PDF file you can download to your computer. I have referred to it often since Jackie was diagnosed in May 1, 2011. She started out stage 1, then rapidly progressed to stage 3 by July, and stage 4 by November, with liver biopsy confirmation of melanoma in January at the Mayo Clinic. 

http://www.nccn.org/patients/patient_guidelines/melanoma/index.html

Melanoma is very aggressive, especially when it gets below the skin and into the lympatic system. There are treatment trials available you might want to check into also. Treatment trials are double edged swords. You can often get the most advanced treatment at little or no cost to the patient, but you are in effect human guinea pigs. Jackie was in a treatment trial for another disease, and it helped her greatly for 3 years, but she had to discontinue you after she was diagnosed with melanoma.

Become as informed as you possibly can, and stay up on new advances in treatment. The two latest FDA approved melanoma treatments (Zelboraf and Yervoy) seem to be very effective, but do have some side effects, and can be quite costly. We have been fortunate in that my health insurance paid for the Yervoy. This is not typically the case for most people.

As with any cancer, having a positive attitude is half the battle. Your encouragement and a good support system for you and your husband are very important. 

You might want to repost your query on the board as a new post and not just as a response to my post. You will probably get more responses from others on the board that way.

This stuff will definitely make your head spin. Like eating an elephant, take it a bite at a time. Do the best to be your husband's advocate if you can. I do that for my wife Jackie, and it is definitely recommended every time your husband goes to see a doctor. Ask questions, write them down, write down the answers. Get reports in writing.

Praying for you both on this journey. Think about quality of life as you contemplate decisions. We always have tried to do that for Jackie (my brown eyed angel) as she has fought health battles for the last 20 years.

Hope this helps!

Thanks,

Bruce

Hi Browneyesangel,

You have come to a good place to get advice and positive feedback. A second opinion is always a good idea. My wife Jackie has a local oncology team, as well as an oncology team at the Mayo Clinic who coordinate her care. She effectively has three cancers, with the melanoma currently being the most aggressvie.

Personally I have found the NCCN  patient guidelines very helpful for understanding melanoma, understanding the staging, understanding the treatment options, etc. I have included the link here for you. It is a PDF file you can download to your computer. I have referred to it often since Jackie was diagnosed in May 1, 2011. She started out stage 1, then rapidly progressed to stage 3 by July, and stage 4 by November, with liver biopsy confirmation of melanoma in January at the Mayo Clinic. 

http://www.nccn.org/patients/patient_guidelines/melanoma/index.html

Melanoma is very aggressive, especially when it gets below the skin and into the lympatic system. There are treatment trials available you might want to check into also. Treatment trials are double edged swords. You can often get the most advanced treatment at little or no cost to the patient, but you are in effect human guinea pigs. Jackie was in a treatment trial for another disease, and it helped her greatly for 3 years, but she had to discontinue you after she was diagnosed with melanoma.

Become as informed as you possibly can, and stay up on new advances in treatment. The two latest FDA approved melanoma treatments (Zelboraf and Yervoy) seem to be very effective, but do have some side effects, and can be quite costly. We have been fortunate in that my health insurance paid for the Yervoy. This is not typically the case for most people.

As with any cancer, having a positive attitude is half the battle. Your encouragement and a good support system for you and your husband are very important. 

You might want to repost your query on the board as a new post and not just as a response to my post. You will probably get more responses from others on the board that way.

This stuff will definitely make your head spin. Like eating an elephant, take it a bite at a time. Do the best to be your husband's advocate if you can. I do that for my wife Jackie, and it is definitely recommended every time your husband goes to see a doctor. Ask questions, write them down, write down the answers. Get reports in writing.

Praying for you both on this journey. Think about quality of life as you contemplate decisions. We always have tried to do that for Jackie (my brown eyed angel) as she has fought health battles for the last 20 years.

Hope this helps!

Thanks,

Bruce

Hi Browneyesangel,

You have come to a good place to get advice and positive feedback. A second opinion is always a good idea. My wife Jackie has a local oncology team, as well as an oncology team at the Mayo Clinic who coordinate her care. She effectively has three cancers, with the melanoma currently being the most aggressvie.

Personally I have found the NCCN  patient guidelines very helpful for understanding melanoma, understanding the staging, understanding the treatment options, etc. I have included the link here for you. It is a PDF file you can download to your computer. I have referred to it often since Jackie was diagnosed in May 1, 2011. She started out stage 1, then rapidly progressed to stage 3 by July, and stage 4 by November, with liver biopsy confirmation of melanoma in January at the Mayo Clinic. 

http://www.nccn.org/patients/patient_guidelines/melanoma/index.html

Melanoma is very aggressive, especially when it gets below the skin and into the lympatic system. There are treatment trials available you might want to check into also. Treatment trials are double edged swords. You can often get the most advanced treatment at little or no cost to the patient, but you are in effect human guinea pigs. Jackie was in a treatment trial for another disease, and it helped her greatly for 3 years, but she had to discontinue you after she was diagnosed with melanoma.

Become as informed as you possibly can, and stay up on new advances in treatment. The two latest FDA approved melanoma treatments (Zelboraf and Yervoy) seem to be very effective, but do have some side effects, and can be quite costly. We have been fortunate in that my health insurance paid for the Yervoy. This is not typically the case for most people.

As with any cancer, having a positive attitude is half the battle. Your encouragement and a good support system for you and your husband are very important. 

You might want to repost your query on the board as a new post and not just as a response to my post. You will probably get more responses from others on the board that way.

This stuff will definitely make your head spin. Like eating an elephant, take it a bite at a time. Do the best to be your husband's advocate if you can. I do that for my wife Jackie, and it is definitely recommended every time your husband goes to see a doctor. Ask questions, write them down, write down the answers. Get reports in writing.

Praying for you both on this journey. Think about quality of life as you contemplate decisions. We always have tried to do that for Jackie (my brown eyed angel) as she has fought health battles for the last 20 years.

Hope this helps!

Thanks,

Bruce

Hi Browneyesangel,

Yes Jackie has a lot going on; She had her left ring finger amputated shortly after she got the malignant melanoma diagnosis on May 2nd. Then in July we found the melanoma had spead to the lymph nodes under ler left underam. In August she had 13 lymph nodes removed, 7 were positive for melanoma, and 6 were not cancerous. Then in November, the PET scan results showed the melanoma had recurred under her left underarm lymph nodes, and also had spread to her liver. Then in January she had another PET scan which showed the melanoma had spread to the lungs. Also the liver melanoma was confirmed by biopsy. So even though Jackie has been on Yervoy for 35 days, she's been dealing with melanoma and treatments going on a year now.

I was a long distance cross country runner in high school, and I do tend to look at life as a marathon, not as a sprint. We have been dealing with various chronic and at time life-theatening health conditions for 20 years. We both have a strong faith, and we have a lot of people that pray for us and a great support system in place from family, friends, neighbors, and church family.

So you have started treatment, but not the next phase of treatment yet. One thing we have learned is that you can't become the disease. Or you can't let the disease define who you are. You can't think about it all the time, even though you might tend to. It is important to try to live as normal as a life as possible. Spend time with family and friends, do things that you like to do together as much as is feasible.

Above all you have to try to take care of yourself as a caregiver. You're not much good to your husband if you don't take care of yourself. Try to eat right, get some exercise, get enough rest, all of that stuff matters.

Hang in there, and let us know how your husband's treatment is progressing. We will keep you posted on Jackie's progress as well.

I saw there was an article that was published yesterday that a couple of melanoma patients who weren't have good results with Yervoy, then had some radiation treatment for troublesome melanoma tumors. Suddenly Yevoy began shrinking other melanoma tumors that hadn't previously been shrinking. So now there will be a treatment trial to see how much this can happen, or if it was just a fluke.

Take care,

Bruce

Hi Browneyesangel,

Yes Jackie has a lot going on; She had her left ring finger amputated shortly after she got the malignant melanoma diagnosis on May 2nd. Then in July we found the melanoma had spead to the lymph nodes under ler left underam. In August she had 13 lymph nodes removed, 7 were positive for melanoma, and 6 were not cancerous. Then in November, the PET scan results showed the melanoma had recurred under her left underarm lymph nodes, and also had spread to her liver. Then in January she had another PET scan which showed the melanoma had spread to the lungs. Also the liver melanoma was confirmed by biopsy. So even though Jackie has been on Yervoy for 35 days, she's been dealing with melanoma and treatments going on a year now.

I was a long distance cross country runner in high school, and I do tend to look at life as a marathon, not as a sprint. We have been dealing with various chronic and at time life-theatening health conditions for 20 years. We both have a strong faith, and we have a lot of people that pray for us and a great support system in place from family, friends, neighbors, and church family.

So you have started treatment, but not the next phase of treatment yet. One thing we have learned is that you can't become the disease. Or you can't let the disease define who you are. You can't think about it all the time, even though you might tend to. It is important to try to live as normal as a life as possible. Spend time with family and friends, do things that you like to do together as much as is feasible.

Above all you have to try to take care of yourself as a caregiver. You're not much good to your husband if you don't take care of yourself. Try to eat right, get some exercise, get enough rest, all of that stuff matters.

Hang in there, and let us know how your husband's treatment is progressing. We will keep you posted on Jackie's progress as well.

I saw there was an article that was published yesterday that a couple of melanoma patients who weren't have good results with Yervoy, then had some radiation treatment for troublesome melanoma tumors. Suddenly Yevoy began shrinking other melanoma tumors that hadn't previously been shrinking. So now there will be a treatment trial to see how much this can happen, or if it was just a fluke.

Take care,

Bruce

Hi Browneyesangel,

Yes Jackie has a lot going on; She had her left ring finger amputated shortly after she got the malignant melanoma diagnosis on May 2nd. Then in July we found the melanoma had spead to the lymph nodes under ler left underam. In August she had 13 lymph nodes removed, 7 were positive for melanoma, and 6 were not cancerous. Then in November, the PET scan results showed the melanoma had recurred under her left underarm lymph nodes, and also had spread to her liver. Then in January she had another PET scan which showed the melanoma had spread to the lungs. Also the liver melanoma was confirmed by biopsy. So even though Jackie has been on Yervoy for 35 days, she's been dealing with melanoma and treatments going on a year now.

I was a long distance cross country runner in high school, and I do tend to look at life as a marathon, not as a sprint. We have been dealing with various chronic and at time life-theatening health conditions for 20 years. We both have a strong faith, and we have a lot of people that pray for us and a great support system in place from family, friends, neighbors, and church family.

So you have started treatment, but not the next phase of treatment yet. One thing we have learned is that you can't become the disease. Or you can't let the disease define who you are. You can't think about it all the time, even though you might tend to. It is important to try to live as normal as a life as possible. Spend time with family and friends, do things that you like to do together as much as is feasible.

Above all you have to try to take care of yourself as a caregiver. You're not much good to your husband if you don't take care of yourself. Try to eat right, get some exercise, get enough rest, all of that stuff matters.

Hang in there, and let us know how your husband's treatment is progressing. We will keep you posted on Jackie's progress as well.

I saw there was an article that was published yesterday that a couple of melanoma patients who weren't have good results with Yervoy, then had some radiation treatment for troublesome melanoma tumors. Suddenly Yevoy began shrinking other melanoma tumors that hadn't previously been shrinking. So now there will be a treatment trial to see how much this can happen, or if it was just a fluke.

Take care,

Bruce