› Forums › General Melanoma Community › Scan and treatment update
- This topic has 24 replies, 8 voices, and was last updated 8 years, 9 months ago by
Eileensulliv.
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- February 20, 2016 at 9:14 pm
This Thursday I went for my normal nivolumab treatment, and mentioned to my doc that I wasn't feeling great lately, but especially this week. Told doc of stomach discomfort and slight nausea, just like I used to have right before my diagnosis last year. Doc noticed my blood sugar has skyrocketed to over 300, and that my LDH has been on the rise just a bit… Nothing too high, but let's scan to see if something is going on. I took another blood test, and started on prednisone pre meds before having the CT yesterday.
As you may recall, my last scan was in December, and I was told I was NED, as all nodules either disappeared all together or were transparent. Yesterday's scan shows that everything is completely gone from lymph nodes and intestines, but there are two new nodules in my right middle lung lobe, about 5-6 mm. The report says they are indeterminate between metastasis versus mild infection. So at this point, we can't tell if these nodules are mets, and the plan is to wait and see, as they can very commonly be from infection, and may not show on next scans.
However, my doc says that the treatment has induced diabetes in me, and we now have to stop treatments until we can get the blood sugar under control. I said maybe it's my fault and not the treatment, but he insisted its actually due to the treatment, but that I will have to monitor my carb and sugar intake, in hopes we may start up treatments again soon, or if at all. I guess right now, everything is up in the air, which is unsettling, to say the least. I'd be lying if I said I'm not nervous about two new lung nodules AND stopping treatment at the same time!
To top it all off, despite the prednisone premeds before my scan, I still had one of my good ol reactions, and had fever, chills, shortness of breath, and vomiting. I called the on-call doc and he gave me a choice between going to the ER last night, or starting on prednisone last night and this morning. And if I wasn't feeling any better by morning, I would have to go to the ER today. So I did 60 mg of prednisone at 11pm, 40 this morning, and 20 this afternoon, and I didn't have to go to the ER! I still had a slight fever this morning, but that was it. I slept most of today, and am now feeling mostly normal! I guess now we just have to figure out how to scan me without these nasty reactions!
So I don't know if this mean sim still NED or not. I guess I just have to wait and see! Any input you all may have is greatly appreciated… The support I receive daily from this board is incredible! Thank you!
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- February 20, 2016 at 10:50 pm
Sorry you have felt crappy lately and I will keep positive thoughts about your lungs in hopes it's just from an infection. All the best to you!
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- February 20, 2016 at 10:50 pm
Sorry you have felt crappy lately and I will keep positive thoughts about your lungs in hopes it's just from an infection. All the best to you!
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- February 20, 2016 at 10:50 pm
Sorry you have felt crappy lately and I will keep positive thoughts about your lungs in hopes it's just from an infection. All the best to you!
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- February 21, 2016 at 4:19 am
Oh how awful! What a roller coaster – hoping you get back to feeling normal soon!!The steroids could be raising your blood sugar. Are you monitoring your sugar daily? If you’d like to get your blood sugar back to normal (and get back onto treatment!) definitely cut out sugar and carbs like rice and bread. Fruit has fiber, which helps to slow digestion, so that’s ok as long as you don’t go crazy. You could try to go on an atkins-like diet for a few days, monitor your sugar, and see how it responds. I’m sure it’s stressful to have to worry about diabetes while going through this! Even if you’re not well enough to go back on Nivo, its so worth it to get your blood sugar back to normal and get to feeling better!
I’ve had lots of family members with diabetes, and they never feel right when their sugar is off. If you suddenly feel light headed, your breath gets fruity, you have vision changes, or extreme thirst and/or having to pee, call your doc!
Hope you get to feeling better soon and hope you’re still NED!
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- February 21, 2016 at 4:19 am
Oh how awful! What a roller coaster – hoping you get back to feeling normal soon!!The steroids could be raising your blood sugar. Are you monitoring your sugar daily? If you’d like to get your blood sugar back to normal (and get back onto treatment!) definitely cut out sugar and carbs like rice and bread. Fruit has fiber, which helps to slow digestion, so that’s ok as long as you don’t go crazy. You could try to go on an atkins-like diet for a few days, monitor your sugar, and see how it responds. I’m sure it’s stressful to have to worry about diabetes while going through this! Even if you’re not well enough to go back on Nivo, its so worth it to get your blood sugar back to normal and get to feeling better!
I’ve had lots of family members with diabetes, and they never feel right when their sugar is off. If you suddenly feel light headed, your breath gets fruity, you have vision changes, or extreme thirst and/or having to pee, call your doc!
Hope you get to feeling better soon and hope you’re still NED!
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- February 21, 2016 at 4:19 am
Oh how awful! What a roller coaster – hoping you get back to feeling normal soon!!The steroids could be raising your blood sugar. Are you monitoring your sugar daily? If you’d like to get your blood sugar back to normal (and get back onto treatment!) definitely cut out sugar and carbs like rice and bread. Fruit has fiber, which helps to slow digestion, so that’s ok as long as you don’t go crazy. You could try to go on an atkins-like diet for a few days, monitor your sugar, and see how it responds. I’m sure it’s stressful to have to worry about diabetes while going through this! Even if you’re not well enough to go back on Nivo, its so worth it to get your blood sugar back to normal and get to feeling better!
I’ve had lots of family members with diabetes, and they never feel right when their sugar is off. If you suddenly feel light headed, your breath gets fruity, you have vision changes, or extreme thirst and/or having to pee, call your doc!
Hope you get to feeling better soon and hope you’re still NED!
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- February 21, 2016 at 3:56 pm
Hi Eileen,
Sorry you are having reactions to something at the time of your scans. My husband has the same problem with one of the contrast that they administer at scan time which causes him to not feel well and he was projectile vomiting on the way home in the car. We told the oncologist and they use something different for the contrast for him.
You might want to ask you oncologist if they can use something different.
Check into benfotiamine(derived from Vitamin B1) and how it helps with diabetes and also Cinnamon. Most doctors won't tell you about these things because they push scripts but if you talk with a naturopath they might would or just research it on the internet.
Judy (loving wife of Gene Stage IV and now NED for over 3 years)
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- February 21, 2016 at 3:56 pm
Hi Eileen,
Sorry you are having reactions to something at the time of your scans. My husband has the same problem with one of the contrast that they administer at scan time which causes him to not feel well and he was projectile vomiting on the way home in the car. We told the oncologist and they use something different for the contrast for him.
You might want to ask you oncologist if they can use something different.
Check into benfotiamine(derived from Vitamin B1) and how it helps with diabetes and also Cinnamon. Most doctors won't tell you about these things because they push scripts but if you talk with a naturopath they might would or just research it on the internet.
Judy (loving wife of Gene Stage IV and now NED for over 3 years)
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- February 21, 2016 at 3:56 pm
Hi Eileen,
Sorry you are having reactions to something at the time of your scans. My husband has the same problem with one of the contrast that they administer at scan time which causes him to not feel well and he was projectile vomiting on the way home in the car. We told the oncologist and they use something different for the contrast for him.
You might want to ask you oncologist if they can use something different.
Check into benfotiamine(derived from Vitamin B1) and how it helps with diabetes and also Cinnamon. Most doctors won't tell you about these things because they push scripts but if you talk with a naturopath they might would or just research it on the internet.
Judy (loving wife of Gene Stage IV and now NED for over 3 years)
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- February 21, 2016 at 10:10 pm
Hi friend,
BOO!!!!!!!! (Followed by lots of swear words!)
I feel so badly that I found out about this on here. I'm sorry! I'm continuing to pray for you.
I hope I don't follow in your footsteps – we've had so much in common. I also have some indescrpancies on my lungs showing up on scans. My doc thought maybe it was mild pneumonitis. However, my cough finally cleared up after 10 weeks so I doubt that theory. I try not to think of it, and that's what I'd like to tell you, but it's so tough.
So, for now, focus on getting those side effects under control. Best of luck, my friend. I'm sorry you're going through all this.
Ashley
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- February 21, 2016 at 10:10 pm
Hi friend,
BOO!!!!!!!! (Followed by lots of swear words!)
I feel so badly that I found out about this on here. I'm sorry! I'm continuing to pray for you.
I hope I don't follow in your footsteps – we've had so much in common. I also have some indescrpancies on my lungs showing up on scans. My doc thought maybe it was mild pneumonitis. However, my cough finally cleared up after 10 weeks so I doubt that theory. I try not to think of it, and that's what I'd like to tell you, but it's so tough.
So, for now, focus on getting those side effects under control. Best of luck, my friend. I'm sorry you're going through all this.
Ashley
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- February 21, 2016 at 10:10 pm
Hi friend,
BOO!!!!!!!! (Followed by lots of swear words!)
I feel so badly that I found out about this on here. I'm sorry! I'm continuing to pray for you.
I hope I don't follow in your footsteps – we've had so much in common. I also have some indescrpancies on my lungs showing up on scans. My doc thought maybe it was mild pneumonitis. However, my cough finally cleared up after 10 weeks so I doubt that theory. I try not to think of it, and that's what I'd like to tell you, but it's so tough.
So, for now, focus on getting those side effects under control. Best of luck, my friend. I'm sorry you're going through all this.
Ashley
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- February 24, 2016 at 12:29 pm
Hi Eileen,
Sorry you are experiencing more side effects. I hope you are still NED and that those little nodules are just inflammations. My doctor warned me that one of the things about a PET is that there are false positives.
I also wanted to relate about the treatment induced diabetes. I was a type 2 diabetic before ipi. But as I received treatments it became harder and harder to control my diabetes with diet and oral medication. I finally decided to seek out a doctor specializing in diabetes. It turned out that the ipi caused my immune system to attack my pancreas and turn me into a type 1.
I realize you are on anti-PD1, not ipi, but still its an immunotherapy so it seems like its something to keep an eye out for. At first my onc was dismissive of my increasing blood sugar issues, chalking them up to my pre-existing condition. But once my endocrinologist confirmed I was type 1 from a blood test that looks for specific antibodies indicating an immune system attack of the pancreas, my oncologist came around to accepting that it was an unlisted side effect of immunotherapy. Since then others have had the same issue so hopefully it will get listed as a side effect of ipi, and perhaps nivo and pembro too.
Bottom line is I would seek out an endocrinologist if I were in your shoes.
Wishing you all the best – Paul
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- February 24, 2016 at 12:29 pm
Hi Eileen,
Sorry you are experiencing more side effects. I hope you are still NED and that those little nodules are just inflammations. My doctor warned me that one of the things about a PET is that there are false positives.
I also wanted to relate about the treatment induced diabetes. I was a type 2 diabetic before ipi. But as I received treatments it became harder and harder to control my diabetes with diet and oral medication. I finally decided to seek out a doctor specializing in diabetes. It turned out that the ipi caused my immune system to attack my pancreas and turn me into a type 1.
I realize you are on anti-PD1, not ipi, but still its an immunotherapy so it seems like its something to keep an eye out for. At first my onc was dismissive of my increasing blood sugar issues, chalking them up to my pre-existing condition. But once my endocrinologist confirmed I was type 1 from a blood test that looks for specific antibodies indicating an immune system attack of the pancreas, my oncologist came around to accepting that it was an unlisted side effect of immunotherapy. Since then others have had the same issue so hopefully it will get listed as a side effect of ipi, and perhaps nivo and pembro too.
Bottom line is I would seek out an endocrinologist if I were in your shoes.
Wishing you all the best – Paul
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- February 24, 2016 at 5:52 pm
Thank you all for your responses! I'm trying my best to watch my carb and sugar intake, and hopefully my glucose will be better on tomorrow's test. I remember they updated the side effects for Opdivo recently, so I checked, and sure enough, diabetes is listed as a side effect. Hopefully it is something that can be easily maintained. I am hoping to speak to my doc tomorrow and come up with a game plan! I really don't want to stop Opdivo, and not sure what my options will be if those nodules do turn out to be mets, and if the diabetes is also a factor in treatment. The waiting is surely the hardest part right now! 🙂
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- February 24, 2016 at 5:52 pm
Thank you all for your responses! I'm trying my best to watch my carb and sugar intake, and hopefully my glucose will be better on tomorrow's test. I remember they updated the side effects for Opdivo recently, so I checked, and sure enough, diabetes is listed as a side effect. Hopefully it is something that can be easily maintained. I am hoping to speak to my doc tomorrow and come up with a game plan! I really don't want to stop Opdivo, and not sure what my options will be if those nodules do turn out to be mets, and if the diabetes is also a factor in treatment. The waiting is surely the hardest part right now! 🙂
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- February 24, 2016 at 5:52 pm
Thank you all for your responses! I'm trying my best to watch my carb and sugar intake, and hopefully my glucose will be better on tomorrow's test. I remember they updated the side effects for Opdivo recently, so I checked, and sure enough, diabetes is listed as a side effect. Hopefully it is something that can be easily maintained. I am hoping to speak to my doc tomorrow and come up with a game plan! I really don't want to stop Opdivo, and not sure what my options will be if those nodules do turn out to be mets, and if the diabetes is also a factor in treatment. The waiting is surely the hardest part right now! 🙂
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- February 24, 2016 at 12:29 pm
Hi Eileen,
Sorry you are experiencing more side effects. I hope you are still NED and that those little nodules are just inflammations. My doctor warned me that one of the things about a PET is that there are false positives.
I also wanted to relate about the treatment induced diabetes. I was a type 2 diabetic before ipi. But as I received treatments it became harder and harder to control my diabetes with diet and oral medication. I finally decided to seek out a doctor specializing in diabetes. It turned out that the ipi caused my immune system to attack my pancreas and turn me into a type 1.
I realize you are on anti-PD1, not ipi, but still its an immunotherapy so it seems like its something to keep an eye out for. At first my onc was dismissive of my increasing blood sugar issues, chalking them up to my pre-existing condition. But once my endocrinologist confirmed I was type 1 from a blood test that looks for specific antibodies indicating an immune system attack of the pancreas, my oncologist came around to accepting that it was an unlisted side effect of immunotherapy. Since then others have had the same issue so hopefully it will get listed as a side effect of ipi, and perhaps nivo and pembro too.
Bottom line is I would seek out an endocrinologist if I were in your shoes.
Wishing you all the best – Paul
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