› Forums › General Melanoma Community › Stopping Zel for Ipi- update
- This topic has 18 replies, 3 voices, and was last updated 13 years, 1 month ago by
Tina D.
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- December 11, 2012 at 12:43 am
Lots of talk on here about whether to stop Zel and for what. Here is my experience so far – not easy – however I don’t regret my choice.April 2012. BRAF V600D. Started Zelboraf with know cardiac met & 4mm brain met.
Sept 2012 – brain is ALL CLEAR and cardiac met is down to 7×11 mm – undetectable on PET. Chest/abd CT all clear. Stopped Zel 9/28 while still responding in order to do Ipi.
10/1/12, 10/22/12 – 1st & 2nd infusion of Yervoy aka Ipi. Diagnosed w Iritis.
10/29/12 – headaches lead to head MRI to check pituitary. Instead, diagnosed with 2 brain mets – old one, supposedly resolved by Zel, is back and now 6mm, new one 4mm. Diagnosed with hyperthyroid nodules from Ipi.
11/8/12 – SRS for 2 brain mets
11/12/12 – Ipi dose 3
11/14/12 – cardiac met rapid growth confirmed. Dr is shocked. Now 42mm x 42mm x 21mm in Rt Aorta. Restarted Zelboraf 720 mg twice daily, then stopped for 1 wk. Side lined by fever/chills and liver levels going up.
12/3/12 – last Ipi infusion, #4
12/5/12 – restarted Zel
12/6/12 – Confirmed still responding to Zel. Cardiac met shrunk slightly after only 15 days on therapy. Ipi response TBD however bilirubin, AST, and ALT up and down. ALP 6 times normal, next up is to confirm whether drug or tumor related and full scans i guess.
Plan to continue Zel at 720 mg/ day however dr is recommending 1 wk on/1 wk off due to my continued problems w toxicity. Ipi caused increased lymphadema in my leg/groin where I had total LND 2 1/2 yrs ago and fatigue is really bad. Low hemoglobin -> blood transfusion. No GI or skin issues yet 🙂
Heard today IPI+Zel trials not going well due to liver toxicity issues.
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- December 11, 2012 at 1:24 am
Amy,
I was so glad to see that your cardiac met is responding to the zel. Sorry the road has been so tumultuous! Enjoy your Christmas with your family and the good news that things are improving. Still praying those side effects taper off for you.
Your post does bring a question to mind. I have lymphedema in my left leg due to LND also. I wear a compression garment always when up. Is it common for the ipi to exacerbate this issue?
I hope your energy levels improve with the transfusion to raise your hgb & that the alternating dose does the trick for you!
Tina
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- December 11, 2012 at 1:24 am
Amy,
I was so glad to see that your cardiac met is responding to the zel. Sorry the road has been so tumultuous! Enjoy your Christmas with your family and the good news that things are improving. Still praying those side effects taper off for you.
Your post does bring a question to mind. I have lymphedema in my left leg due to LND also. I wear a compression garment always when up. Is it common for the ipi to exacerbate this issue?
I hope your energy levels improve with the transfusion to raise your hgb & that the alternating dose does the trick for you!
Tina
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- December 11, 2012 at 1:47 am
Tina – I wear a thigh to toe stocking every day. There were a couple of days after the 1st and 2nd rounds where I had to wear it at night and put my foot up for a couple of days. Not as bad as during radiation when i had to go to a therapist daily and not as bad as I’ve done to myself in the past though ( say… A full day on my feet at Kings Island with coasters & totally worth it :). I’ve had some weakness in that leg also, neuropathy I guess but not like I’ve had before. This all seems to be passing.Truly I am grateful just to be here for my family. Wishing you a Christmas full of joy and wonder. Do you have a plan you are happy with yet?
Amy
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- December 11, 2012 at 1:47 am
Tina – I wear a thigh to toe stocking every day. There were a couple of days after the 1st and 2nd rounds where I had to wear it at night and put my foot up for a couple of days. Not as bad as during radiation when i had to go to a therapist daily and not as bad as I’ve done to myself in the past though ( say… A full day on my feet at Kings Island with coasters & totally worth it :). I’ve had some weakness in that leg also, neuropathy I guess but not like I’ve had before. This all seems to be passing.Truly I am grateful just to be here for my family. Wishing you a Christmas full of joy and wonder. Do you have a plan you are happy with yet?
Amy
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- December 12, 2012 at 1:17 am
Amy, That will def be something I will keep close watch on. I am not real good at propping during the day when I am feeling well, and I have sure had those "worth it "days, too 🙂 where I ended up with bad edema.I am glad the effects seem to be abating for you.
No plan yet. I go to Dr Linette at Siteman Cancer Center in St Louis tomorrow afternoon!! Still havent heard what my surgeon thinks as far as if she feels it is operable. I hope to have some kind of plan by the end of the week. My vision is still pretty cloudy in my left eye, so I am hoping that does not interfere with forward progress at all. Do you remember how long your vision was affected with the uveitis?
And, I agree wholeheartedly…so very grateful to still be here to be with my family!! 7 years ago, we were convinced it would likely be our last Christmas together. We stopped thinking like that, and just agreed to enjoy and appreciate and live life as God chose to bless us with it, and do our best to live it as He intends.Some years that has been more difficult than others, but we try to leave it all in His capable hands…
Tina
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- December 12, 2012 at 9:38 pm
Tina – I don’t think my eye got as bad as yours. With Ipi I was told to call the doc right away with anything out of the ordinary, or on the side effect list, that the people that end up with permanent damage are the ones who try to tough it out or wait til their next visit. So when I got up and couldn’t see and my eye took 30 minutes to adjust to the light, I’d say I was on prednisone drops in maybe 3 days. Prob Oct 8th- ish and did drops for 6 weeks, tapering off.I could Definitely could tell a difference after 2 wks and eye dr checkup at that time said it looked better. Zel messing with them again though now. I am melanoma and cancer- treated out. Giving it up for the New Year!
Take care,
Amy -
- December 12, 2012 at 9:38 pm
Tina – I don’t think my eye got as bad as yours. With Ipi I was told to call the doc right away with anything out of the ordinary, or on the side effect list, that the people that end up with permanent damage are the ones who try to tough it out or wait til their next visit. So when I got up and couldn’t see and my eye took 30 minutes to adjust to the light, I’d say I was on prednisone drops in maybe 3 days. Prob Oct 8th- ish and did drops for 6 weeks, tapering off.I could Definitely could tell a difference after 2 wks and eye dr checkup at that time said it looked better. Zel messing with them again though now. I am melanoma and cancer- treated out. Giving it up for the New Year!
Take care,
Amy -
- December 14, 2012 at 3:43 pm
Amy,
Sounds like a good New Years Resolution… I will join ya!!
I first notinced some redness on a Sat evening..Sunday it looked bad, and was in to the Dr first thing Monday. The redness is mostly resolved, but my vision is still very cloudy in that left eye.The iris sticking to the lens thing was pretty freaky looking! I think there is only one small spot of that left, the rest has pulled away, thankfully. I sure hope yours is currently a dry-eye issue, and nothing more. *sigh* I know you must be so tired of the nature of it all.
I am a tiny bit intimidated by how I may react to the ipi. The Dr did point out that many people have few or even NO side effects. I was trying to reassure our youngest with that and she looked at me and simply said " Mom, you have a track record" . Poor kiddo, it was hard to deny THAT. But, onward we go, keeping our focus on the Lord and doing our best to live each day to please Him & love and cherish each other.And, praying for more time together… lots more time 🙂
I sure appreciate you and your kindness & I really pray you will tolerate Zel better this time around.
Tina
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- December 14, 2012 at 3:43 pm
Amy,
Sounds like a good New Years Resolution… I will join ya!!
I first notinced some redness on a Sat evening..Sunday it looked bad, and was in to the Dr first thing Monday. The redness is mostly resolved, but my vision is still very cloudy in that left eye.The iris sticking to the lens thing was pretty freaky looking! I think there is only one small spot of that left, the rest has pulled away, thankfully. I sure hope yours is currently a dry-eye issue, and nothing more. *sigh* I know you must be so tired of the nature of it all.
I am a tiny bit intimidated by how I may react to the ipi. The Dr did point out that many people have few or even NO side effects. I was trying to reassure our youngest with that and she looked at me and simply said " Mom, you have a track record" . Poor kiddo, it was hard to deny THAT. But, onward we go, keeping our focus on the Lord and doing our best to live each day to please Him & love and cherish each other.And, praying for more time together… lots more time 🙂
I sure appreciate you and your kindness & I really pray you will tolerate Zel better this time around.
Tina
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- December 14, 2012 at 3:43 pm
Amy,
Sounds like a good New Years Resolution… I will join ya!!
I first notinced some redness on a Sat evening..Sunday it looked bad, and was in to the Dr first thing Monday. The redness is mostly resolved, but my vision is still very cloudy in that left eye.The iris sticking to the lens thing was pretty freaky looking! I think there is only one small spot of that left, the rest has pulled away, thankfully. I sure hope yours is currently a dry-eye issue, and nothing more. *sigh* I know you must be so tired of the nature of it all.
I am a tiny bit intimidated by how I may react to the ipi. The Dr did point out that many people have few or even NO side effects. I was trying to reassure our youngest with that and she looked at me and simply said " Mom, you have a track record" . Poor kiddo, it was hard to deny THAT. But, onward we go, keeping our focus on the Lord and doing our best to live each day to please Him & love and cherish each other.And, praying for more time together… lots more time 🙂
I sure appreciate you and your kindness & I really pray you will tolerate Zel better this time around.
Tina
-
- December 12, 2012 at 9:38 pm
Tina – I don’t think my eye got as bad as yours. With Ipi I was told to call the doc right away with anything out of the ordinary, or on the side effect list, that the people that end up with permanent damage are the ones who try to tough it out or wait til their next visit. So when I got up and couldn’t see and my eye took 30 minutes to adjust to the light, I’d say I was on prednisone drops in maybe 3 days. Prob Oct 8th- ish and did drops for 6 weeks, tapering off.I could Definitely could tell a difference after 2 wks and eye dr checkup at that time said it looked better. Zel messing with them again though now. I am melanoma and cancer- treated out. Giving it up for the New Year!
Take care,
Amy -
- December 12, 2012 at 1:17 am
Amy, That will def be something I will keep close watch on. I am not real good at propping during the day when I am feeling well, and I have sure had those "worth it "days, too 🙂 where I ended up with bad edema.I am glad the effects seem to be abating for you.
No plan yet. I go to Dr Linette at Siteman Cancer Center in St Louis tomorrow afternoon!! Still havent heard what my surgeon thinks as far as if she feels it is operable. I hope to have some kind of plan by the end of the week. My vision is still pretty cloudy in my left eye, so I am hoping that does not interfere with forward progress at all. Do you remember how long your vision was affected with the uveitis?
And, I agree wholeheartedly…so very grateful to still be here to be with my family!! 7 years ago, we were convinced it would likely be our last Christmas together. We stopped thinking like that, and just agreed to enjoy and appreciate and live life as God chose to bless us with it, and do our best to live it as He intends.Some years that has been more difficult than others, but we try to leave it all in His capable hands…
Tina
-
- December 12, 2012 at 1:17 am
Amy, That will def be something I will keep close watch on. I am not real good at propping during the day when I am feeling well, and I have sure had those "worth it "days, too 🙂 where I ended up with bad edema.I am glad the effects seem to be abating for you.
No plan yet. I go to Dr Linette at Siteman Cancer Center in St Louis tomorrow afternoon!! Still havent heard what my surgeon thinks as far as if she feels it is operable. I hope to have some kind of plan by the end of the week. My vision is still pretty cloudy in my left eye, so I am hoping that does not interfere with forward progress at all. Do you remember how long your vision was affected with the uveitis?
And, I agree wholeheartedly…so very grateful to still be here to be with my family!! 7 years ago, we were convinced it would likely be our last Christmas together. We stopped thinking like that, and just agreed to enjoy and appreciate and live life as God chose to bless us with it, and do our best to live it as He intends.Some years that has been more difficult than others, but we try to leave it all in His capable hands…
Tina
-
- December 11, 2012 at 1:47 am
Tina – I wear a thigh to toe stocking every day. There were a couple of days after the 1st and 2nd rounds where I had to wear it at night and put my foot up for a couple of days. Not as bad as during radiation when i had to go to a therapist daily and not as bad as I’ve done to myself in the past though ( say… A full day on my feet at Kings Island with coasters & totally worth it :). I’ve had some weakness in that leg also, neuropathy I guess but not like I’ve had before. This all seems to be passing.Truly I am grateful just to be here for my family. Wishing you a Christmas full of joy and wonder. Do you have a plan you are happy with yet?
Amy
-
- December 11, 2012 at 1:24 am
Amy,
I was so glad to see that your cardiac met is responding to the zel. Sorry the road has been so tumultuous! Enjoy your Christmas with your family and the good news that things are improving. Still praying those side effects taper off for you.
Your post does bring a question to mind. I have lymphedema in my left leg due to LND also. I wear a compression garment always when up. Is it common for the ipi to exacerbate this issue?
I hope your energy levels improve with the transfusion to raise your hgb & that the alternating dose does the trick for you!
Tina
-
- December 11, 2012 at 11:58 am
My goodness, Amy! You really have been on a wild ride! At least it sounds as though you have a good doctor who is willing to be flexible and creative about fighting this damn disease. I'm happy to hear that the met in your heart is shrinking again, and I hope that taking Zel on and off means that the side effects will be more managable. Thank you for sharing your experience with us. You really are blazing a trail here for the rest of us.
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- December 11, 2012 at 11:58 am
My goodness, Amy! You really have been on a wild ride! At least it sounds as though you have a good doctor who is willing to be flexible and creative about fighting this damn disease. I'm happy to hear that the met in your heart is shrinking again, and I hope that taking Zel on and off means that the side effects will be more managable. Thank you for sharing your experience with us. You really are blazing a trail here for the rest of us.
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- December 11, 2012 at 11:58 am
My goodness, Amy! You really have been on a wild ride! At least it sounds as though you have a good doctor who is willing to be flexible and creative about fighting this damn disease. I'm happy to hear that the met in your heart is shrinking again, and I hope that taking Zel on and off means that the side effects will be more managable. Thank you for sharing your experience with us. You really are blazing a trail here for the rest of us.
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