› Forums › General Melanoma Community › Ipi/Nivo thyroiditis
- This topic has 42 replies, 6 voices, and was last updated 7 years, 3 months ago by
cancersnewnormal.
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- January 5, 2017 at 11:11 pm
Along with many others here I am being treated with Ipi/Nivo combination. I had my first dose 3 weeks ago and was due to have my second tomorrow.
I was getting by with just some fatigue and a wandering itchy rash (taking claritin by day and benedryl at night as well as a prescription lotion) until a few days ago when I started having a bit of shortness of breath on exertion, pounding heart when climbing just one flight of stairs, having to rest while on a moderate hike, etc. When I took my pulse and found my resting heart rate was 90 I decided I'd better call my oncologist.
He told me to go directly to the emergency room as I live 2 hours away from U of M where I am treated. They were concerned about my heart or the possibilty of pulmonary embolism among other things. My heart and lungs were not the issue thankfully, but my thryoid levels were off the chart. I was diagnosed with thyroiditis, which means the immunotherapy drugs have inflammed my thyroid gland and the destroyed cells are leaking thyroid hormone into my body. I was placed on a beta-blocker to slow my heart rate, and ultimately my thryoid may "burn out" leading to hypothryoidism and necessitating being on thyroid replacement. I know that is not a huge deal and very doable compared to other issues that are seen with these drugs.
I just wanted to share this in case anyone else has these symptoms to know to report it promptly. I was not putting 2 and 2 together initally and just thought that it was due to the fatigue or being more out of shape. It goes to show that any changes should be reported.
I am going to U of M tomorrow for my oncolgy appointment and he will decide whether I can then have my 2nd infusion. Many good thoughts and love to all that are fighting the good fight here.
Peggy
- Replies
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- January 5, 2017 at 11:27 pm
Thank you for sharing your story Peggy, and I am so glad they figured out what's wrong. Hopefully it can be reversed before permanent damage is done, but like you said, it's not the worst thing to deal with… especially if it means good results in the end!
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- January 5, 2017 at 11:27 pm
Thank you for sharing your story Peggy, and I am so glad they figured out what's wrong. Hopefully it can be reversed before permanent damage is done, but like you said, it's not the worst thing to deal with… especially if it means good results in the end!
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- January 6, 2017 at 2:12 am
Thank you Jenn-
Yes- taking it as a good sign. Still I hoping for further doses to increase the effect.. but clearly our immune systems are fired up!
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- January 6, 2017 at 2:12 am
Thank you Jenn-
Yes- taking it as a good sign. Still I hoping for further doses to increase the effect.. but clearly our immune systems are fired up!
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- January 6, 2017 at 2:12 am
Thank you Jenn-
Yes- taking it as a good sign. Still I hoping for further doses to increase the effect.. but clearly our immune systems are fired up!
-
- January 5, 2017 at 11:27 pm
Thank you for sharing your story Peggy, and I am so glad they figured out what's wrong. Hopefully it can be reversed before permanent damage is done, but like you said, it's not the worst thing to deal with… especially if it means good results in the end!
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- January 5, 2017 at 11:57 pm
Hi Peggy,
Thanks for sharing. Besides my IPI nivo liver tests problems, I am also in the frame for thyroid/pituitary problems too. Fatigue, headaches that don' t go away and some low lab values. Seems the endocrine probs hit women more frequently than the men. I'm down for MRI pituitary in a couple of weeks But because already on steroids then symptoms of this may be masked/treated until I come off the steroid taper. Fatigue and headaches do seem to be getting worse as we taper the dose down. On 30mg pred a day at the moment. Its all quite complicated but you might want them to test cortisol as well tomorrow as involvement of thyroid and pituitary function often go hands in hand.
Don't be too disappointed ifdose 2 is delayed. Looks like your immune system is already on the attack and the drugs have started working.
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- January 6, 2017 at 2:22 am
Hi Deb-
I'm getting myself psyched up for the real possibility that my next dose will be delayed. One thing I've had plenty of opportunity to work on through this whole process is accepting my lack of control. I will ask about the cortisol- thank you for the suggestion.
I'm sorry about your headaches and fatigue… that is one thing that it is very hard to carry on with daily living while dealing with. Have you been able to work through this? I have persistent fatigue which has made it tough to get through a 12 hour work shift. I have intermittent FMLA but hate to use it.
Still in all- right about the hope that this means our immune systems are engaging!
Peggy
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- January 6, 2017 at 2:22 am
Hi Deb-
I'm getting myself psyched up for the real possibility that my next dose will be delayed. One thing I've had plenty of opportunity to work on through this whole process is accepting my lack of control. I will ask about the cortisol- thank you for the suggestion.
I'm sorry about your headaches and fatigue… that is one thing that it is very hard to carry on with daily living while dealing with. Have you been able to work through this? I have persistent fatigue which has made it tough to get through a 12 hour work shift. I have intermittent FMLA but hate to use it.
Still in all- right about the hope that this means our immune systems are engaging!
Peggy
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- January 6, 2017 at 2:22 am
Hi Deb-
I'm getting myself psyched up for the real possibility that my next dose will be delayed. One thing I've had plenty of opportunity to work on through this whole process is accepting my lack of control. I will ask about the cortisol- thank you for the suggestion.
I'm sorry about your headaches and fatigue… that is one thing that it is very hard to carry on with daily living while dealing with. Have you been able to work through this? I have persistent fatigue which has made it tough to get through a 12 hour work shift. I have intermittent FMLA but hate to use it.
Still in all- right about the hope that this means our immune systems are engaging!
Peggy
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- January 6, 2017 at 12:57 pm
Hi Peggy,
Not currently working- due to a combination of things. Although have been advised to apply for early paynent of works pension on health grounds.
Can see why 12hr shifts would be taxing. It feels to me that the tiredness really kicks in as the levels of ipi nivo start to build in your system and it goes to work. For me this was after the second dose- but then again if (as suspected) I've got endocrine side effects- that could explain the increasing fatigue as we drop the steroids for the liver side effects. Will be reviewed on Wed.
Suspect that the ipi nivo part of the treatment is likely to be the toughest- you could ask the docs if this is correct- and maybe use some of the FMLA at this point so you don't get too run down.
Hope all goes well at the clinic today
Deb
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- January 6, 2017 at 12:57 pm
Hi Peggy,
Not currently working- due to a combination of things. Although have been advised to apply for early paynent of works pension on health grounds.
Can see why 12hr shifts would be taxing. It feels to me that the tiredness really kicks in as the levels of ipi nivo start to build in your system and it goes to work. For me this was after the second dose- but then again if (as suspected) I've got endocrine side effects- that could explain the increasing fatigue as we drop the steroids for the liver side effects. Will be reviewed on Wed.
Suspect that the ipi nivo part of the treatment is likely to be the toughest- you could ask the docs if this is correct- and maybe use some of the FMLA at this point so you don't get too run down.
Hope all goes well at the clinic today
Deb
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- January 6, 2017 at 12:57 pm
Hi Peggy,
Not currently working- due to a combination of things. Although have been advised to apply for early paynent of works pension on health grounds.
Can see why 12hr shifts would be taxing. It feels to me that the tiredness really kicks in as the levels of ipi nivo start to build in your system and it goes to work. For me this was after the second dose- but then again if (as suspected) I've got endocrine side effects- that could explain the increasing fatigue as we drop the steroids for the liver side effects. Will be reviewed on Wed.
Suspect that the ipi nivo part of the treatment is likely to be the toughest- you could ask the docs if this is correct- and maybe use some of the FMLA at this point so you don't get too run down.
Hope all goes well at the clinic today
Deb
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- January 5, 2017 at 11:57 pm
Hi Peggy,
Thanks for sharing. Besides my IPI nivo liver tests problems, I am also in the frame for thyroid/pituitary problems too. Fatigue, headaches that don' t go away and some low lab values. Seems the endocrine probs hit women more frequently than the men. I'm down for MRI pituitary in a couple of weeks But because already on steroids then symptoms of this may be masked/treated until I come off the steroid taper. Fatigue and headaches do seem to be getting worse as we taper the dose down. On 30mg pred a day at the moment. Its all quite complicated but you might want them to test cortisol as well tomorrow as involvement of thyroid and pituitary function often go hands in hand.
Don't be too disappointed ifdose 2 is delayed. Looks like your immune system is already on the attack and the drugs have started working.
-
- January 5, 2017 at 11:57 pm
Hi Peggy,
Thanks for sharing. Besides my IPI nivo liver tests problems, I am also in the frame for thyroid/pituitary problems too. Fatigue, headaches that don' t go away and some low lab values. Seems the endocrine probs hit women more frequently than the men. I'm down for MRI pituitary in a couple of weeks But because already on steroids then symptoms of this may be masked/treated until I come off the steroid taper. Fatigue and headaches do seem to be getting worse as we taper the dose down. On 30mg pred a day at the moment. Its all quite complicated but you might want them to test cortisol as well tomorrow as involvement of thyroid and pituitary function often go hands in hand.
Don't be too disappointed ifdose 2 is delayed. Looks like your immune system is already on the attack and the drugs have started working.
-
- January 6, 2017 at 2:12 pm
After 4 combo doses and 4 single doses of nivo my thyroid was toast also. I had noticed after the 3rd single dose I was really tired like going to bed as soon as I got home from work and was gaining weight. Next lab results thyroid was gone so I started hormones. I have had at least 1 side effect since the second week and still have the rash which started the second week but no itch or burn. Like you, taking a hormone pill every day is not a bad trade to live.
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- January 6, 2017 at 10:56 pm
Glad to hear that you're able to tolerate tne side effects and looking at your posts it looks like you're having a great response. I hope to be able to continue with my treatment with my next dose. Are you still doing the Nivo?
Peggy
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- January 6, 2017 at 10:56 pm
Glad to hear that you're able to tolerate tne side effects and looking at your posts it looks like you're having a great response. I hope to be able to continue with my treatment with my next dose. Are you still doing the Nivo?
Peggy
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- January 6, 2017 at 10:56 pm
Glad to hear that you're able to tolerate tne side effects and looking at your posts it looks like you're having a great response. I hope to be able to continue with my treatment with my next dose. Are you still doing the Nivo?
Peggy
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- January 9, 2017 at 2:08 pm
On 12/23 I went back to the combo as I started the maintenace phase. So I had 4 combos, 4 single nivo and one more combo. I get a combo every 90 days now until 10/2018. I had just gotten over my salava gland issues and as of now it is trying to come back, salava seems really thick. But that is ok, I'm alive.
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- January 9, 2017 at 2:08 pm
On 12/23 I went back to the combo as I started the maintenace phase. So I had 4 combos, 4 single nivo and one more combo. I get a combo every 90 days now until 10/2018. I had just gotten over my salava gland issues and as of now it is trying to come back, salava seems really thick. But that is ok, I'm alive.
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- January 9, 2017 at 2:08 pm
On 12/23 I went back to the combo as I started the maintenace phase. So I had 4 combos, 4 single nivo and one more combo. I get a combo every 90 days now until 10/2018. I had just gotten over my salava gland issues and as of now it is trying to come back, salava seems really thick. But that is ok, I'm alive.
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- January 6, 2017 at 2:12 pm
After 4 combo doses and 4 single doses of nivo my thyroid was toast also. I had noticed after the 3rd single dose I was really tired like going to bed as soon as I got home from work and was gaining weight. Next lab results thyroid was gone so I started hormones. I have had at least 1 side effect since the second week and still have the rash which started the second week but no itch or burn. Like you, taking a hormone pill every day is not a bad trade to live.
-
- January 6, 2017 at 2:12 pm
After 4 combo doses and 4 single doses of nivo my thyroid was toast also. I had noticed after the 3rd single dose I was really tired like going to bed as soon as I got home from work and was gaining weight. Next lab results thyroid was gone so I started hormones. I have had at least 1 side effect since the second week and still have the rash which started the second week but no itch or burn. Like you, taking a hormone pill every day is not a bad trade to live.
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- January 6, 2017 at 11:05 pm
As I suspected I was not able to have my second infusion of ipi/nivo today. It has been delayed for 3 weeks to give my thyroid time to settle down. My liver enzymes were mildly elevated as well and I will be having them tested weekly. My cortisol level was normal but my onc said he will be watching for pituitary problems as well.
The GREAT news is that the CT scan that I had three days ago shows shrinkage of one of the mets and the other remaining stable! (one was removed by VATS in November) My onc said that it is really positive that I am already having response. I'm beyond excited. I asked him if his job is much happier in the era of immunotherapy. He said YES. Of course I know that it is not a magic bullet and that not everyone responds and that I may not be a complete responder either. Still it was amazing news, and praying that everyone has amazing news.
Peggy
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- January 6, 2017 at 11:05 pm
As I suspected I was not able to have my second infusion of ipi/nivo today. It has been delayed for 3 weeks to give my thyroid time to settle down. My liver enzymes were mildly elevated as well and I will be having them tested weekly. My cortisol level was normal but my onc said he will be watching for pituitary problems as well.
The GREAT news is that the CT scan that I had three days ago shows shrinkage of one of the mets and the other remaining stable! (one was removed by VATS in November) My onc said that it is really positive that I am already having response. I'm beyond excited. I asked him if his job is much happier in the era of immunotherapy. He said YES. Of course I know that it is not a magic bullet and that not everyone responds and that I may not be a complete responder either. Still it was amazing news, and praying that everyone has amazing news.
Peggy
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- January 6, 2017 at 11:05 pm
As I suspected I was not able to have my second infusion of ipi/nivo today. It has been delayed for 3 weeks to give my thyroid time to settle down. My liver enzymes were mildly elevated as well and I will be having them tested weekly. My cortisol level was normal but my onc said he will be watching for pituitary problems as well.
The GREAT news is that the CT scan that I had three days ago shows shrinkage of one of the mets and the other remaining stable! (one was removed by VATS in November) My onc said that it is really positive that I am already having response. I'm beyond excited. I asked him if his job is much happier in the era of immunotherapy. He said YES. Of course I know that it is not a magic bullet and that not everyone responds and that I may not be a complete responder either. Still it was amazing news, and praying that everyone has amazing news.
Peggy
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- January 6, 2017 at 11:40 pm
Hi Peggy,
I'd take that as a good news day too ! Confirmed shrinkage after 1 dose is brilliant. Was just checking if you had posted before time for bed. Weekly liver tests sound like a good plan as it means if you get to levels where steroids are a good idea – they will be on it pretty quickly.
Am really pleased for you.
Deb
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- January 6, 2017 at 11:40 pm
Hi Peggy,
I'd take that as a good news day too ! Confirmed shrinkage after 1 dose is brilliant. Was just checking if you had posted before time for bed. Weekly liver tests sound like a good plan as it means if you get to levels where steroids are a good idea – they will be on it pretty quickly.
Am really pleased for you.
Deb
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- January 6, 2017 at 11:40 pm
Hi Peggy,
I'd take that as a good news day too ! Confirmed shrinkage after 1 dose is brilliant. Was just checking if you had posted before time for bed. Weekly liver tests sound like a good plan as it means if you get to levels where steroids are a good idea – they will be on it pretty quickly.
Am really pleased for you.
Deb
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- January 9, 2017 at 3:12 pm
Happy to hear the heart is ok! Ipi gave my thyroid a punch in the throat and had me on synthroid at a minimal dose once per day. 18 months later, I began Keytruda treatments, and it shot the rest of my thyroid. I'm now on levothyroxine (synthroid) at 175 mcg per day. It's a tiny pill and has no side effects for me, but we do monitor the FT4, TSH… and T3 levels on blood labs each month. Keytruda caused some VERY mild diarrhea issues for me as well, which seems to have put me in a position for a "conversion" problem. Although the levothyroxine will replace your missing T4 and boost those levels, if your body has any nutrient absorbtion issues, it may not convert that T4 to the T3 that the body needs. Doctors do not ordinarily check for T3 on thryroid labs. I'm not sure why this is. I'm guessing that in MOST cases, T4 replacement is enough to correct the hypothyroidism. If your docs find that T4 replacement therapy isn't helping your symptoms, ask them to test your T3 as well. My T4 is always at max level, and yet, my TSH is still slightly out of range on the high side. My T3 levels are always scraping the barrel on the low end of the "in range" scale. While T3 pills are an option, the balance act with them is more delicate…. so… at this point, I'm trucking along ever so slightly hypothyroid, and hoping that the other "issues" in my system will correct (off Keytruda since early July), and the T4 to T3 conversion will kick back in.
The very fortunate side of immunotherapy, is it's much better efficacy on killing melanoma mutations. The dismal side, is showing us that it can create new "breeds" of autoimmune and endocrine issues that do not behave in the same manner that the traditionally developed forms of these diseases do.
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- January 9, 2017 at 3:12 pm
Happy to hear the heart is ok! Ipi gave my thyroid a punch in the throat and had me on synthroid at a minimal dose once per day. 18 months later, I began Keytruda treatments, and it shot the rest of my thyroid. I'm now on levothyroxine (synthroid) at 175 mcg per day. It's a tiny pill and has no side effects for me, but we do monitor the FT4, TSH… and T3 levels on blood labs each month. Keytruda caused some VERY mild diarrhea issues for me as well, which seems to have put me in a position for a "conversion" problem. Although the levothyroxine will replace your missing T4 and boost those levels, if your body has any nutrient absorbtion issues, it may not convert that T4 to the T3 that the body needs. Doctors do not ordinarily check for T3 on thryroid labs. I'm not sure why this is. I'm guessing that in MOST cases, T4 replacement is enough to correct the hypothyroidism. If your docs find that T4 replacement therapy isn't helping your symptoms, ask them to test your T3 as well. My T4 is always at max level, and yet, my TSH is still slightly out of range on the high side. My T3 levels are always scraping the barrel on the low end of the "in range" scale. While T3 pills are an option, the balance act with them is more delicate…. so… at this point, I'm trucking along ever so slightly hypothyroid, and hoping that the other "issues" in my system will correct (off Keytruda since early July), and the T4 to T3 conversion will kick back in.
The very fortunate side of immunotherapy, is it's much better efficacy on killing melanoma mutations. The dismal side, is showing us that it can create new "breeds" of autoimmune and endocrine issues that do not behave in the same manner that the traditionally developed forms of these diseases do.
-
- January 9, 2017 at 3:12 pm
Happy to hear the heart is ok! Ipi gave my thyroid a punch in the throat and had me on synthroid at a minimal dose once per day. 18 months later, I began Keytruda treatments, and it shot the rest of my thyroid. I'm now on levothyroxine (synthroid) at 175 mcg per day. It's a tiny pill and has no side effects for me, but we do monitor the FT4, TSH… and T3 levels on blood labs each month. Keytruda caused some VERY mild diarrhea issues for me as well, which seems to have put me in a position for a "conversion" problem. Although the levothyroxine will replace your missing T4 and boost those levels, if your body has any nutrient absorbtion issues, it may not convert that T4 to the T3 that the body needs. Doctors do not ordinarily check for T3 on thryroid labs. I'm not sure why this is. I'm guessing that in MOST cases, T4 replacement is enough to correct the hypothyroidism. If your docs find that T4 replacement therapy isn't helping your symptoms, ask them to test your T3 as well. My T4 is always at max level, and yet, my TSH is still slightly out of range on the high side. My T3 levels are always scraping the barrel on the low end of the "in range" scale. While T3 pills are an option, the balance act with them is more delicate…. so… at this point, I'm trucking along ever so slightly hypothyroid, and hoping that the other "issues" in my system will correct (off Keytruda since early July), and the T4 to T3 conversion will kick back in.
The very fortunate side of immunotherapy, is it's much better efficacy on killing melanoma mutations. The dismal side, is showing us that it can create new "breeds" of autoimmune and endocrine issues that do not behave in the same manner that the traditionally developed forms of these diseases do.
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- January 9, 2017 at 9:32 pm
Wow Niki-
I followed the link to your story. You have been through a lot girl! It's fantastic about your response with so much mel present. Thank you for the heads up about the T-3- my thyroid will most likely be shot and I will go hypothyroid after this hyperthyroid phase. It's all very interesting- few things in life are without a downside.
Thanks again for your input.
Peggy
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- January 9, 2017 at 9:32 pm
Wow Niki-
I followed the link to your story. You have been through a lot girl! It's fantastic about your response with so much mel present. Thank you for the heads up about the T-3- my thyroid will most likely be shot and I will go hypothyroid after this hyperthyroid phase. It's all very interesting- few things in life are without a downside.
Thanks again for your input.
Peggy
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- January 9, 2017 at 10:06 pm
I'm just thankful to the "trial test bunnies" that got Keytruda to rapid approval by the FDA. I was running out of options! The folks who fund trials don't seem to take too kindly to we brain met people. : ) Buuuut… Pembro seems to have worked quite well in clearing "the beast" out of me…. or at least the bits and pieces that weren't carved or radiated out! HA! We're in "watch and wait" monitoring mode now. Fingers crossed for you with the ipi/nivo combo! You've already lost a hunk of lung and have thyroid issues… that melanoma needs to just bugger off! ; )
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- January 9, 2017 at 10:06 pm
I'm just thankful to the "trial test bunnies" that got Keytruda to rapid approval by the FDA. I was running out of options! The folks who fund trials don't seem to take too kindly to we brain met people. : ) Buuuut… Pembro seems to have worked quite well in clearing "the beast" out of me…. or at least the bits and pieces that weren't carved or radiated out! HA! We're in "watch and wait" monitoring mode now. Fingers crossed for you with the ipi/nivo combo! You've already lost a hunk of lung and have thyroid issues… that melanoma needs to just bugger off! ; )
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- January 9, 2017 at 10:06 pm
I'm just thankful to the "trial test bunnies" that got Keytruda to rapid approval by the FDA. I was running out of options! The folks who fund trials don't seem to take too kindly to we brain met people. : ) Buuuut… Pembro seems to have worked quite well in clearing "the beast" out of me…. or at least the bits and pieces that weren't carved or radiated out! HA! We're in "watch and wait" monitoring mode now. Fingers crossed for you with the ipi/nivo combo! You've already lost a hunk of lung and have thyroid issues… that melanoma needs to just bugger off! ; )
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- January 9, 2017 at 9:32 pm
Wow Niki-
I followed the link to your story. You have been through a lot girl! It's fantastic about your response with so much mel present. Thank you for the heads up about the T-3- my thyroid will most likely be shot and I will go hypothyroid after this hyperthyroid phase. It's all very interesting- few things in life are without a downside.
Thanks again for your input.
Peggy
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