Tafinlar/Mekinist – headache & vomitting

Thank you so much Ed. Hearing about your experience is very encouraging. Before her scans, her onc was talking immunotherapy but after learning how quickly it had spread, she went with the targeted, simply for the tumour regression it gives. We understand it is just a "bridge" and the hope is that she can start immunotherapy as soon as the tumours have shrunk enough that the onc is satisfied.

BUT – so many sick people, not enough doctors and this one doesn't seem to have nearly enough time. She does not explain anything or volunteer any info unless we ask. For instance, just about everything I've learned so far is directly from reading posts on this board!! But that is a vast amount of info as compared to what we knew originally.

Thank you once again – I'll now start learning about Ipi and Nivo 🙂  Best thoughts for you!!!

Barb

Thank you so much Ed. Hearing about your experience is very encouraging. Before her scans, her onc was talking immunotherapy but after learning how quickly it had spread, she went with the targeted, simply for the tumour regression it gives. We understand it is just a "bridge" and the hope is that she can start immunotherapy as soon as the tumours have shrunk enough that the onc is satisfied.

BUT – so many sick people, not enough doctors and this one doesn't seem to have nearly enough time. She does not explain anything or volunteer any info unless we ask. For instance, just about everything I've learned so far is directly from reading posts on this board!! But that is a vast amount of info as compared to what we knew originally.

Thank you once again – I'll now start learning about Ipi and Nivo 🙂  Best thoughts for you!!!

Barb

Thank you so much Ed. Hearing about your experience is very encouraging. Before her scans, her onc was talking immunotherapy but after learning how quickly it had spread, she went with the targeted, simply for the tumour regression it gives. We understand it is just a "bridge" and the hope is that she can start immunotherapy as soon as the tumours have shrunk enough that the onc is satisfied.

BUT – so many sick people, not enough doctors and this one doesn't seem to have nearly enough time. She does not explain anything or volunteer any info unless we ask. For instance, just about everything I've learned so far is directly from reading posts on this board!! But that is a vast amount of info as compared to what we knew originally.

Thank you once again – I'll now start learning about Ipi and Nivo 🙂  Best thoughts for you!!!

Barb

Hi Rita – Thank you for describing your husband's side effects … I'm sorry to hear he's had so much to deal with!! It's our understanding (from the onc) that the T/M combo is not the long-term plan but that finding the "right" time to switch to immunotherapy is more of an art than science.

In my sister's case, I don't think she can 'keep up' with her head like it is and having to stay in bed all day/night – it's making her really sad. I really hope she won't be on this long unless she starts to tolerate it better. We are trying a lower dose of Taf tonight (1/2) and in the morning, to see if at least that much can be tolerated, as it seems to be the culprit. The fevers are getting better though or we're managing them better – Tylenol and water an hour before meds to head off or reduce fever before it starts.

But the anti-nausea drug, taken at the same time, isn't working … so vicious circle of throwing up > headache > throwing up > worse headaches, kicks in. If we can get rid of the headaches, we're hoping we can stop the nausea too. Now we're seeing if short term morphine will knock them out – it does seem to help. It's supposed to be for her breakthru pain but she's had such remarkable (disease) regression in the past two weeks, that she cut way down on pain meds. Her brain scan was clear, thank goodness, so we're fairly certain the disease is not the main cause (secondary in a million ways tho).  

Her disease progression was so swift that new tumours appeared daily, she was finding things by afternoon or evening that hadn't been there in the morning. First indication of this new cancer was a compression fracture of T12 vertebrae on Dec. 1. First bumps(subcutaneous) on Christmas Eve, diagnosis by New Year. In addition to her spine (Ts and Ls), her ribs, shoulders, left hip and right femur all had growths on the bone. Lungs, liver, spleen, pancreas, uterus and omentum were showing the same. In a weird way, we're fortunate for seeing all those subcutaneous 'lumps and bumps' appear because now we're watching them disappear just as quickly with the drugs – hoping it's an indication they're working equally well against what we can't see. Her diminished pain is a great sign (bones) and a fist-size thing coming from her omentum/liver area is now about a quarter of its previous size. It's remarkable and "magical" which is so encouraging  … and yet she is so sick, which is disheartening!!  

As you say Rita, there are no easy answers and fixes!! I'll keep posting to say if what we are doing works or not … guess we'll have to let her onc know too!!

Wishing all good things for you and Charles! 

Barb

Just a quick update, in case this is of benefit to anyone out there, steroids have made the difference for my sister. After 3 days without food, a reduced Taf dosage and no end to constant nausea and retching, onc put her back on her steroids (we had some left over from radiation she underwent in Jan. – that was only for pain, not to destroy the tumours in her spine) and today she felt way better, ate well, etc. So, if she has to stay on them to tolerate the meds, then that's the way it has to be.

Best to all!! 

Barb

Just a quick update, in case this is of benefit to anyone out there, steroids have made the difference for my sister. After 3 days without food, a reduced Taf dosage and no end to constant nausea and retching, onc put her back on her steroids (we had some left over from radiation she underwent in Jan. – that was only for pain, not to destroy the tumours in her spine) and today she felt way better, ate well, etc. So, if she has to stay on them to tolerate the meds, then that's the way it has to be.

Best to all!! 

Barb

Just a quick update, in case this is of benefit to anyone out there, steroids have made the difference for my sister. After 3 days without food, a reduced Taf dosage and no end to constant nausea and retching, onc put her back on her steroids (we had some left over from radiation she underwent in Jan. – that was only for pain, not to destroy the tumours in her spine) and today she felt way better, ate well, etc. So, if she has to stay on them to tolerate the meds, then that's the way it has to be.

Best to all!! 

Barb

Hi Rita – Thank you for describing your husband's side effects … I'm sorry to hear he's had so much to deal with!! It's our understanding (from the onc) that the T/M combo is not the long-term plan but that finding the "right" time to switch to immunotherapy is more of an art than science.

In my sister's case, I don't think she can 'keep up' with her head like it is and having to stay in bed all day/night – it's making her really sad. I really hope she won't be on this long unless she starts to tolerate it better. We are trying a lower dose of Taf tonight (1/2) and in the morning, to see if at least that much can be tolerated, as it seems to be the culprit. The fevers are getting better though or we're managing them better – Tylenol and water an hour before meds to head off or reduce fever before it starts.

But the anti-nausea drug, taken at the same time, isn't working … so vicious circle of throwing up > headache > throwing up > worse headaches, kicks in. If we can get rid of the headaches, we're hoping we can stop the nausea too. Now we're seeing if short term morphine will knock them out – it does seem to help. It's supposed to be for her breakthru pain but she's had such remarkable (disease) regression in the past two weeks, that she cut way down on pain meds. Her brain scan was clear, thank goodness, so we're fairly certain the disease is not the main cause (secondary in a million ways tho).  

Her disease progression was so swift that new tumours appeared daily, she was finding things by afternoon or evening that hadn't been there in the morning. First indication of this new cancer was a compression fracture of T12 vertebrae on Dec. 1. First bumps(subcutaneous) on Christmas Eve, diagnosis by New Year. In addition to her spine (Ts and Ls), her ribs, shoulders, left hip and right femur all had growths on the bone. Lungs, liver, spleen, pancreas, uterus and omentum were showing the same. In a weird way, we're fortunate for seeing all those subcutaneous 'lumps and bumps' appear because now we're watching them disappear just as quickly with the drugs – hoping it's an indication they're working equally well against what we can't see. Her diminished pain is a great sign (bones) and a fist-size thing coming from her omentum/liver area is now about a quarter of its previous size. It's remarkable and "magical" which is so encouraging  … and yet she is so sick, which is disheartening!!  

As you say Rita, there are no easy answers and fixes!! I'll keep posting to say if what we are doing works or not … guess we'll have to let her onc know too!!

Wishing all good things for you and Charles! 

Barb

Hi Rita – Thank you for describing your husband's side effects … I'm sorry to hear he's had so much to deal with!! It's our understanding (from the onc) that the T/M combo is not the long-term plan but that finding the "right" time to switch to immunotherapy is more of an art than science.

In my sister's case, I don't think she can 'keep up' with her head like it is and having to stay in bed all day/night – it's making her really sad. I really hope she won't be on this long unless she starts to tolerate it better. We are trying a lower dose of Taf tonight (1/2) and in the morning, to see if at least that much can be tolerated, as it seems to be the culprit. The fevers are getting better though or we're managing them better – Tylenol and water an hour before meds to head off or reduce fever before it starts.

But the anti-nausea drug, taken at the same time, isn't working … so vicious circle of throwing up > headache > throwing up > worse headaches, kicks in. If we can get rid of the headaches, we're hoping we can stop the nausea too. Now we're seeing if short term morphine will knock them out – it does seem to help. It's supposed to be for her breakthru pain but she's had such remarkable (disease) regression in the past two weeks, that she cut way down on pain meds. Her brain scan was clear, thank goodness, so we're fairly certain the disease is not the main cause (secondary in a million ways tho).  

Her disease progression was so swift that new tumours appeared daily, she was finding things by afternoon or evening that hadn't been there in the morning. First indication of this new cancer was a compression fracture of T12 vertebrae on Dec. 1. First bumps(subcutaneous) on Christmas Eve, diagnosis by New Year. In addition to her spine (Ts and Ls), her ribs, shoulders, left hip and right femur all had growths on the bone. Lungs, liver, spleen, pancreas, uterus and omentum were showing the same. In a weird way, we're fortunate for seeing all those subcutaneous 'lumps and bumps' appear because now we're watching them disappear just as quickly with the drugs – hoping it's an indication they're working equally well against what we can't see. Her diminished pain is a great sign (bones) and a fist-size thing coming from her omentum/liver area is now about a quarter of its previous size. It's remarkable and "magical" which is so encouraging  … and yet she is so sick, which is disheartening!!  

As you say Rita, there are no easy answers and fixes!! I'll keep posting to say if what we are doing works or not … guess we'll have to let her onc know too!!

Wishing all good things for you and Charles! 

Barb