micheley

Good luck on Tuesday, Jenn. I will send out some positive energy and good thoughts that your first infusion goes well.

I have to tell you honestly it is pretty frightening being there with so many really sick people getting treatments. Surreal doesn't even begin to describe it. I found myself vacillating between gratitude that I wasn't REALLY sick and fear that the really sick looking people COULD be me down the road. When I reminded myself — over and over again — that what I was doing was something really positive for me and my health it did make it easier to be in the chair, like everyone else, and be a chemotherapy patient. It is a chance to offset late stage disease — and that is good indeed. For me, it was and is the right decision.

Best,
Michele

Good luck on Tuesday, Jenn. I will send out some positive energy and good thoughts that your first infusion goes well.

I have to tell you honestly it is pretty frightening being there with so many really sick people getting treatments. Surreal doesn't even begin to describe it. I found myself vacillating between gratitude that I wasn't REALLY sick and fear that the really sick looking people COULD be me down the road. When I reminded myself — over and over again — that what I was doing was something really positive for me and my health it did make it easier to be in the chair, like everyone else, and be a chemotherapy patient. It is a chance to offset late stage disease — and that is good indeed. For me, it was and is the right decision.

Best,
Michele

Good luck on Tuesday, Jenn. I will send out some positive energy and good thoughts that your first infusion goes well.

I have to tell you honestly it is pretty frightening being there with so many really sick people getting treatments. Surreal doesn't even begin to describe it. I found myself vacillating between gratitude that I wasn't REALLY sick and fear that the really sick looking people COULD be me down the road. When I reminded myself — over and over again — that what I was doing was something really positive for me and my health it did make it easier to be in the chair, like everyone else, and be a chemotherapy patient. It is a chance to offset late stage disease — and that is good indeed. For me, it was and is the right decision.

Best,
Michele

Hi Greg (and Jenn),

 Thanks for the info on the goat's mik soap and the sauerkraut. I will check it out. I do eat live yogurt cultures. Is that good enough to cover the probiotics basis?

 As for side effects, yes, the rash, headaches, and GI issues (big one as that is the one that caused deaths in the original study). Also, extreme fatigue — not just your everyday feeling tired but more like you can't get out of bed fatigue. It could mean the adrenal glands are being effected and that should be addressed quickly, per my doctor. Also, more recently I have been noticing some taste changes but that could be from the oral steroid.

 Jenn, as for working, I have not missed any days. Of course, it has only been one treatment but I really don't feel any physical differences beyond the annoying and irritating rash. I am fortunate to be self employed and to be able to work from home but the medication has not impacted my energy level nor have I felt "sick." Even on the days when I had some mild abdominal discomfort and loose stools, it was more than manageable  — and I could have been in an office, or at work outside my home, if necessary.

 As for the emotional component of all this, I'm not sure that I will ever go back to "normal." The certainty bubble has burst and, unfortunately, there is no unbursting that bubble – no unringing that bell. The train has left the station! I know that is how life really is for everyone. There are no guarantees about tomorrow, next month, or next year but it certainly is more real and in your face once you hear the word cancer (and metasteses). And, with my MM on my face and in my neck, the scars are everyday reminders that I am mortal indeeed.

 I've been reading a lot of spiritual stuff lately. Interestingly, Buddhist monks in certain parts of Asia have to go through death awareness when they begin their monastic journey. They have to sit with dead bodies to understand where all of this leads — start coming to grips with their own mortality to move beyond and pass through that fear. Of course, we here in the states, don't like to look at or think about death. I certainly am of that ilk. I'd like to think of my life as a journey, a very LONG journey, where death comes gently and peacefully at the end of the road. However, what I'm reading is that death really walks, side by side, with us our entire lives. Of course, we can't LIVE in that fear but knowing that, I guess, is supposed to help us live completely. I do feel more "awake" now — not sure how to explain that and I probably don't have to here — but everything feels important now. Every day, every minute with my kids, husband, family, and friends is really precious.

Sorry to go off on a tangent there. I hope you both have little to no effect in your treatment and that this brings you long time and ongoing healing and peace. I will continue to provide updates.

Best,

Michele

Hi Greg (and Jenn),

 Thanks for the info on the goat's mik soap and the sauerkraut. I will check it out. I do eat live yogurt cultures. Is that good enough to cover the probiotics basis?

 As for side effects, yes, the rash, headaches, and GI issues (big one as that is the one that caused deaths in the original study). Also, extreme fatigue — not just your everyday feeling tired but more like you can't get out of bed fatigue. It could mean the adrenal glands are being effected and that should be addressed quickly, per my doctor. Also, more recently I have been noticing some taste changes but that could be from the oral steroid.

 Jenn, as for working, I have not missed any days. Of course, it has only been one treatment but I really don't feel any physical differences beyond the annoying and irritating rash. I am fortunate to be self employed and to be able to work from home but the medication has not impacted my energy level nor have I felt "sick." Even on the days when I had some mild abdominal discomfort and loose stools, it was more than manageable  — and I could have been in an office, or at work outside my home, if necessary.

 As for the emotional component of all this, I'm not sure that I will ever go back to "normal." The certainty bubble has burst and, unfortunately, there is no unbursting that bubble – no unringing that bell. The train has left the station! I know that is how life really is for everyone. There are no guarantees about tomorrow, next month, or next year but it certainly is more real and in your face once you hear the word cancer (and metasteses). And, with my MM on my face and in my neck, the scars are everyday reminders that I am mortal indeeed.

 I've been reading a lot of spiritual stuff lately. Interestingly, Buddhist monks in certain parts of Asia have to go through death awareness when they begin their monastic journey. They have to sit with dead bodies to understand where all of this leads — start coming to grips with their own mortality to move beyond and pass through that fear. Of course, we here in the states, don't like to look at or think about death. I certainly am of that ilk. I'd like to think of my life as a journey, a very LONG journey, where death comes gently and peacefully at the end of the road. However, what I'm reading is that death really walks, side by side, with us our entire lives. Of course, we can't LIVE in that fear but knowing that, I guess, is supposed to help us live completely. I do feel more "awake" now — not sure how to explain that and I probably don't have to here — but everything feels important now. Every day, every minute with my kids, husband, family, and friends is really precious.

Sorry to go off on a tangent there. I hope you both have little to no effect in your treatment and that this brings you long time and ongoing healing and peace. I will continue to provide updates.

Best,

Michele

Hi Greg (and Jenn),

 Thanks for the info on the goat's mik soap and the sauerkraut. I will check it out. I do eat live yogurt cultures. Is that good enough to cover the probiotics basis?

 As for side effects, yes, the rash, headaches, and GI issues (big one as that is the one that caused deaths in the original study). Also, extreme fatigue — not just your everyday feeling tired but more like you can't get out of bed fatigue. It could mean the adrenal glands are being effected and that should be addressed quickly, per my doctor. Also, more recently I have been noticing some taste changes but that could be from the oral steroid.

 Jenn, as for working, I have not missed any days. Of course, it has only been one treatment but I really don't feel any physical differences beyond the annoying and irritating rash. I am fortunate to be self employed and to be able to work from home but the medication has not impacted my energy level nor have I felt "sick." Even on the days when I had some mild abdominal discomfort and loose stools, it was more than manageable  — and I could have been in an office, or at work outside my home, if necessary.

 As for the emotional component of all this, I'm not sure that I will ever go back to "normal." The certainty bubble has burst and, unfortunately, there is no unbursting that bubble – no unringing that bell. The train has left the station! I know that is how life really is for everyone. There are no guarantees about tomorrow, next month, or next year but it certainly is more real and in your face once you hear the word cancer (and metasteses). And, with my MM on my face and in my neck, the scars are everyday reminders that I am mortal indeeed.

 I've been reading a lot of spiritual stuff lately. Interestingly, Buddhist monks in certain parts of Asia have to go through death awareness when they begin their monastic journey. They have to sit with dead bodies to understand where all of this leads — start coming to grips with their own mortality to move beyond and pass through that fear. Of course, we here in the states, don't like to look at or think about death. I certainly am of that ilk. I'd like to think of my life as a journey, a very LONG journey, where death comes gently and peacefully at the end of the road. However, what I'm reading is that death really walks, side by side, with us our entire lives. Of course, we can't LIVE in that fear but knowing that, I guess, is supposed to help us live completely. I do feel more "awake" now — not sure how to explain that and I probably don't have to here — but everything feels important now. Every day, every minute with my kids, husband, family, and friends is really precious.

Sorry to go off on a tangent there. I hope you both have little to no effect in your treatment and that this brings you long time and ongoing healing and peace. I will continue to provide updates.

Best,

Michele

Hi Michel,

 Thanks for your reponse. I am so happy to hear you are almost through your Interferon treatments. I have read how hard it can be.  As I mentioned in an earlier post, Penn doesn't even recommend it anymore. I was left with a watchful waiting approach or to try and find a clinical trial. Waiting just wasn't comfortable for me and trying to find a trial sounded daunting and very expensive. So, when the Yervoy was approved and presented to me I felt like it was something with potential benefit. Yes. I was not thrilled about the 10 mg dosing side effects but the insurance wasn't budging and my doctor said the 3mg dosing just didn't have clinical proof (yet) to back it for Stage 3 recurrence reduction. Apparently, there is a study going on for Stage 3 with 3mg dosing to see if there is a proven benefit but that won't be done and the results released for quite some time.

 So, barring major side effects, I am going stick with the 10 mg dosing. I hope that this gives me some benefit but as we know there are no 100% guarantees for next month, next year, or the year after for any of us with melonoma — or not. I will do my best to just stay in today and not worry about tomorrow but it is a challenge.

I will continue to update everyone as i continue on to my next treatment next Thursday.

Peace,

Michele

Hi Michel,

 Thanks for your reponse. I am so happy to hear you are almost through your Interferon treatments. I have read how hard it can be.  As I mentioned in an earlier post, Penn doesn't even recommend it anymore. I was left with a watchful waiting approach or to try and find a clinical trial. Waiting just wasn't comfortable for me and trying to find a trial sounded daunting and very expensive. So, when the Yervoy was approved and presented to me I felt like it was something with potential benefit. Yes. I was not thrilled about the 10 mg dosing side effects but the insurance wasn't budging and my doctor said the 3mg dosing just didn't have clinical proof (yet) to back it for Stage 3 recurrence reduction. Apparently, there is a study going on for Stage 3 with 3mg dosing to see if there is a proven benefit but that won't be done and the results released for quite some time.

 So, barring major side effects, I am going stick with the 10 mg dosing. I hope that this gives me some benefit but as we know there are no 100% guarantees for next month, next year, or the year after for any of us with melonoma — or not. I will do my best to just stay in today and not worry about tomorrow but it is a challenge.

I will continue to update everyone as i continue on to my next treatment next Thursday.

Peace,

Michele

Hi Michel,

 Thanks for your reponse. I am so happy to hear you are almost through your Interferon treatments. I have read how hard it can be.  As I mentioned in an earlier post, Penn doesn't even recommend it anymore. I was left with a watchful waiting approach or to try and find a clinical trial. Waiting just wasn't comfortable for me and trying to find a trial sounded daunting and very expensive. So, when the Yervoy was approved and presented to me I felt like it was something with potential benefit. Yes. I was not thrilled about the 10 mg dosing side effects but the insurance wasn't budging and my doctor said the 3mg dosing just didn't have clinical proof (yet) to back it for Stage 3 recurrence reduction. Apparently, there is a study going on for Stage 3 with 3mg dosing to see if there is a proven benefit but that won't be done and the results released for quite some time.

 So, barring major side effects, I am going stick with the 10 mg dosing. I hope that this gives me some benefit but as we know there are no 100% guarantees for next month, next year, or the year after for any of us with melonoma — or not. I will do my best to just stay in today and not worry about tomorrow but it is a challenge.

I will continue to update everyone as i continue on to my next treatment next Thursday.

Peace,

Michele

Hi Jenny and mkirkland. Feel free to email me at [email protected] — it is my general email account that I check frequently. I wish you both good luck with your decisions and next steps. The hardest part of all of this for me has been what decisions to make. I am so afraid of making the "wrong" decision that it's been almost unbearable! What doctor? What institution? What treatment? Surgery? 2nd opinion? and on and on. It is quite apparent that my life is in my hands. My decisions will determine my path… a very scary thought. I need to make "big girl" decisions and it is hard indeed. Of course, once the decisions are made, it does alleviate some of the stress.

So,right or wrong, I have committed to taking the Yervoy at 10mg. I actually thought about talking to Dr. Schuchter about lowering the dosage at my next infusion but as of today I don't think I'm going to do that. I am going to stick this out until there are more serious side effects or I finish the four infusions — whichever comes first. Then, if MM does recur, I can say I did everything I could at the time that was comfortable for me.

I wish you all the best as well. Feel free to reach out anytime.

Best,
Michele

Hi Jenny and mkirkland. Feel free to email me at [email protected] — it is my general email account that I check frequently. I wish you both good luck with your decisions and next steps. The hardest part of all of this for me has been what decisions to make. I am so afraid of making the "wrong" decision that it's been almost unbearable! What doctor? What institution? What treatment? Surgery? 2nd opinion? and on and on. It is quite apparent that my life is in my hands. My decisions will determine my path… a very scary thought. I need to make "big girl" decisions and it is hard indeed. Of course, once the decisions are made, it does alleviate some of the stress.

So,right or wrong, I have committed to taking the Yervoy at 10mg. I actually thought about talking to Dr. Schuchter about lowering the dosage at my next infusion but as of today I don't think I'm going to do that. I am going to stick this out until there are more serious side effects or I finish the four infusions — whichever comes first. Then, if MM does recur, I can say I did everything I could at the time that was comfortable for me.

I wish you all the best as well. Feel free to reach out anytime.

Best,
Michele

Hi Jenny and mkirkland. Feel free to email me at [email protected] — it is my general email account that I check frequently. I wish you both good luck with your decisions and next steps. The hardest part of all of this for me has been what decisions to make. I am so afraid of making the "wrong" decision that it's been almost unbearable! What doctor? What institution? What treatment? Surgery? 2nd opinion? and on and on. It is quite apparent that my life is in my hands. My decisions will determine my path… a very scary thought. I need to make "big girl" decisions and it is hard indeed. Of course, once the decisions are made, it does alleviate some of the stress.

So,right or wrong, I have committed to taking the Yervoy at 10mg. I actually thought about talking to Dr. Schuchter about lowering the dosage at my next infusion but as of today I don't think I'm going to do that. I am going to stick this out until there are more serious side effects or I finish the four infusions — whichever comes first. Then, if MM does recur, I can say I did everything I could at the time that was comfortable for me.

I wish you all the best as well. Feel free to reach out anytime.

Best,
Michele