bonusfries

My bad days seemed to be related to too much exertion and not hydrating enough. Otherwise I have been very lucky with no rashes, lesions, or toxicity concerns.

Hope your husband has a long and prosperous time on this combo.

Jeff

My bad days seemed to be related to too much exertion and not hydrating enough. Otherwise I have been very lucky with no rashes, lesions, or toxicity concerns.

Hope your husband has a long and prosperous time on this combo.

Jeff

My bad days seemed to be related to too much exertion and not hydrating enough. Otherwise I have been very lucky with no rashes, lesions, or toxicity concerns.

Hope your husband has a long and prosperous time on this combo.

Jeff

Hi Jenny –

Yep tough crowd on this subject. Our feelings on taking Interferon are exactly the same – 2 years ago I could not sit around and do nothing but wait and watch. Did you choose the normal or pegolated version? I tried Peg, b/c once a week injections sounded much better than daily right? On average the side effects seem to increase on the pegolated version.

I only had acute side effects from the first two rounds of the high dose – fever, chills, aches – which would kick in 2-4 hours after injection. I took the dose after dinner, then loaded up on Tylenol and successfully slept through them. Mild fatigue and slight muscle aches were persistent. Is there an ability to have a nurse perform your dosing at home? Even if I had gone with the regular version, my onc said they would have it done in-home.

Unfortunately at the end of the high dose period I was lucky enough to start having unexplained mood swings which quickly ended my time on Interferon. Those were just temporary and stopped very quickly after going off the medication.

Good luck!

Jeff

Hi Jenny –

Yep tough crowd on this subject. Our feelings on taking Interferon are exactly the same – 2 years ago I could not sit around and do nothing but wait and watch. Did you choose the normal or pegolated version? I tried Peg, b/c once a week injections sounded much better than daily right? On average the side effects seem to increase on the pegolated version.

I only had acute side effects from the first two rounds of the high dose – fever, chills, aches – which would kick in 2-4 hours after injection. I took the dose after dinner, then loaded up on Tylenol and successfully slept through them. Mild fatigue and slight muscle aches were persistent. Is there an ability to have a nurse perform your dosing at home? Even if I had gone with the regular version, my onc said they would have it done in-home.

Unfortunately at the end of the high dose period I was lucky enough to start having unexplained mood swings which quickly ended my time on Interferon. Those were just temporary and stopped very quickly after going off the medication.

Good luck!

Jeff

Hi Jenny –

Yep tough crowd on this subject. Our feelings on taking Interferon are exactly the same – 2 years ago I could not sit around and do nothing but wait and watch. Did you choose the normal or pegolated version? I tried Peg, b/c once a week injections sounded much better than daily right? On average the side effects seem to increase on the pegolated version.

I only had acute side effects from the first two rounds of the high dose – fever, chills, aches – which would kick in 2-4 hours after injection. I took the dose after dinner, then loaded up on Tylenol and successfully slept through them. Mild fatigue and slight muscle aches were persistent. Is there an ability to have a nurse perform your dosing at home? Even if I had gone with the regular version, my onc said they would have it done in-home.

Unfortunately at the end of the high dose period I was lucky enough to start having unexplained mood swings which quickly ended my time on Interferon. Those were just temporary and stopped very quickly after going off the medication.

Good luck!

Jeff

Mark, you saved me from starting a new thread, so everyone thanks you in advance. I'm in your age range and one month ahead of you on the Taf + Mek combo.

So far so good. Only two rashes, left ankle (gone in two days) and right calf (one week and counting). Two small bouts of chills, both gone within an hour. Only one fever, again gone within an hour after taking Tylenol.

The fatigue side effects have been the most noticeable, but hard to isolate how much is from this medicine. Overall I've felt very good, can work full-time, but have needed more sleep than usual and had some real 'stay in bed' days. I underwent SRS follow-up treatments after a craniotomy during this first month, and I think they are the biggest contributor to the fatigue.

Stay well hydrated, stay active, and your days will be very close to normal. Good luck to you and I'm hoping for clear scans in your future.

Mark, you saved me from starting a new thread, so everyone thanks you in advance. I'm in your age range and one month ahead of you on the Taf + Mek combo.

So far so good. Only two rashes, left ankle (gone in two days) and right calf (one week and counting). Two small bouts of chills, both gone within an hour. Only one fever, again gone within an hour after taking Tylenol.

The fatigue side effects have been the most noticeable, but hard to isolate how much is from this medicine. Overall I've felt very good, can work full-time, but have needed more sleep than usual and had some real 'stay in bed' days. I underwent SRS follow-up treatments after a craniotomy during this first month, and I think they are the biggest contributor to the fatigue.

Stay well hydrated, stay active, and your days will be very close to normal. Good luck to you and I'm hoping for clear scans in your future.

Mark, you saved me from starting a new thread, so everyone thanks you in advance. I'm in your age range and one month ahead of you on the Taf + Mek combo.

So far so good. Only two rashes, left ankle (gone in two days) and right calf (one week and counting). Two small bouts of chills, both gone within an hour. Only one fever, again gone within an hour after taking Tylenol.

The fatigue side effects have been the most noticeable, but hard to isolate how much is from this medicine. Overall I've felt very good, can work full-time, but have needed more sleep than usual and had some real 'stay in bed' days. I underwent SRS follow-up treatments after a craniotomy during this first month, and I think they are the biggest contributor to the fatigue.

Stay well hydrated, stay active, and your days will be very close to normal. Good luck to you and I'm hoping for clear scans in your future.

Mat, I'm actually working with Dr. Tara Gangadhar who is another one of their up and coming specialists (apparently there are several). If I ever run into you in Perelman, the crab fries are on me 🙂

I don't remember how I originally stumbled upon this statical breakdown (probably Celeste's blog), but it helps show the benefits in OS of *just* the BRAF inhibitor in brain mets:

http://meetinglibrary.asco.org/content/147127-156

Mat, I'm actually working with Dr. Tara Gangadhar who is another one of their up and coming specialists (apparently there are several). If I ever run into you in Perelman, the crab fries are on me 🙂

I don't remember how I originally stumbled upon this statical breakdown (probably Celeste's blog), but it helps show the benefits in OS of *just* the BRAF inhibitor in brain mets:

http://meetinglibrary.asco.org/content/147127-156

Mat, I'm actually working with Dr. Tara Gangadhar who is another one of their up and coming specialists (apparently there are several). If I ever run into you in Perelman, the crab fries are on me 🙂

I don't remember how I originally stumbled upon this statical breakdown (probably Celeste's blog), but it helps show the benefits in OS of *just* the BRAF inhibitor in brain mets:

http://meetinglibrary.asco.org/content/147127-156

I am fortunate to see a melanoma specialist at Penn, and without you or I asking this question, her answer last week on this very subject was (translated from fancy speak) "yes, the combo does cross into the brain and is effective at treating disease". 

My radiation oncologist would agree with her also. I had SRS on a non-resected MET, and once I went on the combo, she also said "oh you will most likely see faster regression of the tumor now since that protocol does affect tumors in the brain".

So that's my answer, and if/when she is proven wrong and changes her answer, then mine will change also.

I am fortunate to see a melanoma specialist at Penn, and without you or I asking this question, her answer last week on this very subject was (translated from fancy speak) "yes, the combo does cross into the brain and is effective at treating disease". 

My radiation oncologist would agree with her also. I had SRS on a non-resected MET, and once I went on the combo, she also said "oh you will most likely see faster regression of the tumor now since that protocol does affect tumors in the brain".

So that's my answer, and if/when she is proven wrong and changes her answer, then mine will change also.

I am fortunate to see a melanoma specialist at Penn, and without you or I asking this question, her answer last week on this very subject was (translated from fancy speak) "yes, the combo does cross into the brain and is effective at treating disease". 

My radiation oncologist would agree with her also. I had SRS on a non-resected MET, and once I went on the combo, she also said "oh you will most likely see faster regression of the tumor now since that protocol does affect tumors in the brain".

So that's my answer, and if/when she is proven wrong and changes her answer, then mine will change also.