Overcoming side effects

I don't have answers but I'd like to pray for your husband and you. Please lord help this young man and his wife overcome this illness. Let his treatment begin to work with minimal side effects. Let him be on the road to ned. All this I ask of you father ijnip amen 

I don't have answers but I'd like to pray for your husband and you. Please lord help this young man and his wife overcome this illness. Let his treatment begin to work with minimal side effects. Let him be on the road to ned. All this I ask of you father ijnip amen 

I don't have answers but I'd like to pray for your husband and you. Please lord help this young man and his wife overcome this illness. Let his treatment begin to work with minimal side effects. Let him be on the road to ned. All this I ask of you father ijnip amen 

I have not been treated with opdivo. (I was on ipi/Yervoy. I am in the UK. I dropped 3 stone when I was on Ipi.)

Are you in contact with MD Anderson via email or some other means of communication? I was in contact with my team by email with a specialist nurse. That meant I could check things with her. If she did not have the answer, she asked my doctor.

You do not say how long your husband has been on opdivo. Is he having regular blood tests? (I was one of those people for whom Ipi chomped my anterior pituitary gland and many of my symptoms were because of hormone deficiencies.)

Have you tried those drinks that replace a meal? (In the UK the most common is 'Complan'.) At least them he would be getting the calories, vitamins and minerals he requires.

As for the shortness of breath, I do not know about that. My GP (primary care physician) suggested checking me for asthma and gave me an inhaler. It helped a bit.

I have not been treated with opdivo. (I was on ipi/Yervoy. I am in the UK. I dropped 3 stone when I was on Ipi.)

Are you in contact with MD Anderson via email or some other means of communication? I was in contact with my team by email with a specialist nurse. That meant I could check things with her. If she did not have the answer, she asked my doctor.

You do not say how long your husband has been on opdivo. Is he having regular blood tests? (I was one of those people for whom Ipi chomped my anterior pituitary gland and many of my symptoms were because of hormone deficiencies.)

Have you tried those drinks that replace a meal? (In the UK the most common is 'Complan'.) At least them he would be getting the calories, vitamins and minerals he requires.

As for the shortness of breath, I do not know about that. My GP (primary care physician) suggested checking me for asthma and gave me an inhaler. It helped a bit.

I have not been treated with opdivo. (I was on ipi/Yervoy. I am in the UK. I dropped 3 stone when I was on Ipi.)

Are you in contact with MD Anderson via email or some other means of communication? I was in contact with my team by email with a specialist nurse. That meant I could check things with her. If she did not have the answer, she asked my doctor.

You do not say how long your husband has been on opdivo. Is he having regular blood tests? (I was one of those people for whom Ipi chomped my anterior pituitary gland and many of my symptoms were because of hormone deficiencies.)

Have you tried those drinks that replace a meal? (In the UK the most common is 'Complan'.) At least them he would be getting the calories, vitamins and minerals he requires.

As for the shortness of breath, I do not know about that. My GP (primary care physician) suggested checking me for asthma and gave me an inhaler. It helped a bit.

Belah,

Has any doctor suggested steroids?  Prednisone is given commonly to reduce a host of side-effects, stimulate appetite, and provide energy.  Shortness of breath could be some kind of lung inflammation which steroid treatment is effective at treating. Even a low-dose of 10mg daily may make a big difference.

Gary

Belah,

Has any doctor suggested steroids?  Prednisone is given commonly to reduce a host of side-effects, stimulate appetite, and provide energy.  Shortness of breath could be some kind of lung inflammation which steroid treatment is effective at treating. Even a low-dose of 10mg daily may make a big difference.

Gary

Belah,

Has any doctor suggested steroids?  Prednisone is given commonly to reduce a host of side-effects, stimulate appetite, and provide energy.  Shortness of breath could be some kind of lung inflammation which steroid treatment is effective at treating. Even a low-dose of 10mg daily may make a big difference.

Gary

Hi Belah. I’m so sorry to hear your husband is having such a difficult time with his treatment. As the (32 year old) patient and wife, I know going through this is incredibly difficult, especially for morale. It hard to live life when you havent had a chance to even get there yet. The best thing for morale for me has been laughing and having fun when you can. Watch funny movies. Make a new hobby for him, like building model planes. Something he can do that’s not too physical. I learned to cross stitch and started a bee hive. It’s the little things that make a difference.

I’ve also experienced weight loss throughout treatment, too. The best advice I have here is make EVERY calorie count with nutrient dense foods. Ensure, gatorade, juice, V8 (or bloody mary mix) for liquids. Soups were great, but make sure its not just veggies. Switch to whole milk or heavy cream, whole fat cheese, full fat butter, and olive oil. Peanut butter, nuts, and avocado are a great addition, and if he’s a meat eater, lots of protiens at full fat (bacon and steak, for example). Encourage his appetite by just having a ton of food around.

I’d also encourage you to get in touch with MD Anderson about his shortness of breath. As others have said, this should be looked into further.

I wish you and your husband all the best. Keep us updated!

Hi Belah. I’m so sorry to hear your husband is having such a difficult time with his treatment. As the (32 year old) patient and wife, I know going through this is incredibly difficult, especially for morale. It hard to live life when you havent had a chance to even get there yet. The best thing for morale for me has been laughing and having fun when you can. Watch funny movies. Make a new hobby for him, like building model planes. Something he can do that’s not too physical. I learned to cross stitch and started a bee hive. It’s the little things that make a difference.

I’ve also experienced weight loss throughout treatment, too. The best advice I have here is make EVERY calorie count with nutrient dense foods. Ensure, gatorade, juice, V8 (or bloody mary mix) for liquids. Soups were great, but make sure its not just veggies. Switch to whole milk or heavy cream, whole fat cheese, full fat butter, and olive oil. Peanut butter, nuts, and avocado are a great addition, and if he’s a meat eater, lots of protiens at full fat (bacon and steak, for example). Encourage his appetite by just having a ton of food around.

I’d also encourage you to get in touch with MD Anderson about his shortness of breath. As others have said, this should be looked into further.

I wish you and your husband all the best. Keep us updated!

Hi Belah. I’m so sorry to hear your husband is having such a difficult time with his treatment. As the (32 year old) patient and wife, I know going through this is incredibly difficult, especially for morale. It hard to live life when you havent had a chance to even get there yet. The best thing for morale for me has been laughing and having fun when you can. Watch funny movies. Make a new hobby for him, like building model planes. Something he can do that’s not too physical. I learned to cross stitch and started a bee hive. It’s the little things that make a difference.

I’ve also experienced weight loss throughout treatment, too. The best advice I have here is make EVERY calorie count with nutrient dense foods. Ensure, gatorade, juice, V8 (or bloody mary mix) for liquids. Soups were great, but make sure its not just veggies. Switch to whole milk or heavy cream, whole fat cheese, full fat butter, and olive oil. Peanut butter, nuts, and avocado are a great addition, and if he’s a meat eater, lots of protiens at full fat (bacon and steak, for example). Encourage his appetite by just having a ton of food around.

I’d also encourage you to get in touch with MD Anderson about his shortness of breath. As others have said, this should be looked into further.

I wish you and your husband all the best. Keep us updated!

Hi Belah, 

My husband as well is going thorugh this, we just stopped the BRAF combo due to side effects. We are "on a break" right now before next option of Keytruda. Right now he is stable, we'll do more tests and a PET in early July to see how his body is reponding being off the Taf/MEK combo.

It would help to know how long he has been on his current treatment?  And on a side note, just curious on how long on the combo? Charles withstood about 8 months before it got too hard….

Hoping that you can set up a profile and tell us more, this community has been such a great "melanoma university" for me…..great support.

Rita

Hi Belah, 

My husband as well is going thorugh this, we just stopped the BRAF combo due to side effects. We are "on a break" right now before next option of Keytruda. Right now he is stable, we'll do more tests and a PET in early July to see how his body is reponding being off the Taf/MEK combo.

It would help to know how long he has been on his current treatment?  And on a side note, just curious on how long on the combo? Charles withstood about 8 months before it got too hard….

Hoping that you can set up a profile and tell us more, this community has been such a great "melanoma university" for me…..great support.

Rita

Hi Belah, 

My husband as well is going thorugh this, we just stopped the BRAF combo due to side effects. We are "on a break" right now before next option of Keytruda. Right now he is stable, we'll do more tests and a PET in early July to see how his body is reponding being off the Taf/MEK combo.

It would help to know how long he has been on his current treatment?  And on a side note, just curious on how long on the combo? Charles withstood about 8 months before it got too hard….

Hoping that you can set up a profile and tell us more, this community has been such a great "melanoma university" for me…..great support.

Rita

For the shortness of breath with just walking. My husband was in the same shape with taking a shower and then hardly able to get out of the bathroom due to difficulty breathing. He is on Keytrude. Check your husband’s CBC – hemoglobin. My husband’s had dropped to 8.4. He was given a bloof transfusion and this helped that immensely. Problem being normal low hemoglobin 13.– and they don’t want to give transfusiin until it drops to 8. Insist on relief!! I believe oncology treatments should include strong management of symptoms!!

For the shortness of breath with just walking. My husband was in the same shape with taking a shower and then hardly able to get out of the bathroom due to difficulty breathing. He is on Keytrude. Check your husband’s CBC – hemoglobin. My husband’s had dropped to 8.4. He was given a bloof transfusion and this helped that immensely. Problem being normal low hemoglobin 13.– and they don’t want to give transfusiin until it drops to 8. Insist on relief!! I believe oncology treatments should include strong management of symptoms!!

For the shortness of breath with just walking. My husband was in the same shape with taking a shower and then hardly able to get out of the bathroom due to difficulty breathing. He is on Keytrude. Check your husband’s CBC – hemoglobin. My husband’s had dropped to 8.4. He was given a bloof transfusion and this helped that immensely. Problem being normal low hemoglobin 13.– and they don’t want to give transfusiin until it drops to 8. Insist on relief!! I believe oncology treatments should include strong management of symptoms!!