› Forums › General Melanoma Community › Quick update, Ipi, Brain MRI, low sodium, and thyroid
- This topic has 7 replies, 4 voices, and was last updated 7 months, 2 weeks ago by
Pilar.
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- September 7, 2011 at 3:16 pm
I wrote here last week and just thought I'd give everyone a quick update. My extreme headaches from last week have subsided, not entirely, but I feel much better. The weekend was not a fun one, lots of nerves and anxiety waiting on results.
But, good news…
I wrote here last week and just thought I'd give everyone a quick update. My extreme headaches from last week have subsided, not entirely, but I feel much better. The weekend was not a fun one, lots of nerves and anxiety waiting on results.
But, good news…
MRI came back clean! Huge relief. Then I had my blood work done and it came back with very low sodium levels (126 vs. 135 normal). Instead of getting my 4th and hopefully final dose of Ipi, they sent me to urgent care. WTF? Ended up spending about 4 hours there, they treated it with 2 saline bags and brought it back up to close to normal, and let me go by 11 last night. Hoping to get back up there today for my final treatment.
Quick questions for the board:
1. Has anyone experienced low sodium levels before? The nurse said it was not a common effect of Ipi, and the docs at urgent care were clueless as to what it could have been caused by. They did say that if it gets very low, it can be very dangerous.
2. What are the common treatment options if thyroid levels are low. Is this permanent impairment?
3. Still have not received much info into what may have been causing my headaches. A swollen Pituitary seems like the answer I get most, but again, my blood work for the pituitary (namely cortisol levels) were normal.
Docs did say I may get an MRI scheduled for my pituatary area, which was not caught on my previous MRI last week, but said they were not as concerned in that area as there was nothing in my blood work to suggest anything is wrong with it.
Anyway, hoping to be done with Ipi for good today and then can enjoy a 12 day break back in Colorado.
Wetterhorn
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- September 7, 2011 at 7:04 pm
Wetterhorn,
I completed 4 rounds of ipi. Did not have your side effects, but did have some headaches. Not at the level you did.
Don't you hate when you basically get "I don't know" as a non answer!? Hello? It's all confusing enough, and then to feel like the doctors don't know is disconcerting!
The thyroid can become compromised from ipi. I discussed it with Dr. Sharfman at Johns Hopkins. He was clear that if that occurs, it shuts you out of IL-2 down the road, if needed. I would ask for more info, specifically, on that. They would put you on a synthetic thyroid medicine, permanently. It is manageable.
I am not at all familiar with the low sodium level issue and ipi, sorry.
Finish ipi, go to CO and relax. You've earned it.
TracyLee
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- September 7, 2011 at 7:04 pm
Wetterhorn,
I completed 4 rounds of ipi. Did not have your side effects, but did have some headaches. Not at the level you did.
Don't you hate when you basically get "I don't know" as a non answer!? Hello? It's all confusing enough, and then to feel like the doctors don't know is disconcerting!
The thyroid can become compromised from ipi. I discussed it with Dr. Sharfman at Johns Hopkins. He was clear that if that occurs, it shuts you out of IL-2 down the road, if needed. I would ask for more info, specifically, on that. They would put you on a synthetic thyroid medicine, permanently. It is manageable.
I am not at all familiar with the low sodium level issue and ipi, sorry.
Finish ipi, go to CO and relax. You've earned it.
TracyLee
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- September 8, 2011 at 12:08 am
Low sodium levels are very dangerous. It was not a side effect my wife experienced on her course of Ipi, but it did occur as a result of her craniotomy. It is a not uncommon side effect of that procedure (full name: cerebral salt wastage – your brain loses its ability to control the hormones which regulate your sodium levels) and basically your brain swells, you get massive headaches and you go unconscious. After getting her sodium levels up through saline intravenous, and then salt tabs, she was on a high sodium diet for 4 weeks. So maybe out of an abundance of caution you should make sure your sodium intake is high, even temporarily, since they can't explain it. It won't hurt you long term.
Nick
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- September 8, 2011 at 12:08 am
Low sodium levels are very dangerous. It was not a side effect my wife experienced on her course of Ipi, but it did occur as a result of her craniotomy. It is a not uncommon side effect of that procedure (full name: cerebral salt wastage – your brain loses its ability to control the hormones which regulate your sodium levels) and basically your brain swells, you get massive headaches and you go unconscious. After getting her sodium levels up through saline intravenous, and then salt tabs, she was on a high sodium diet for 4 weeks. So maybe out of an abundance of caution you should make sure your sodium intake is high, even temporarily, since they can't explain it. It won't hurt you long term.
Nick
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- September 8, 2011 at 1:17 am
Thanks for the update, Wetterhorn. I was wondering how you were doing. Wonderful news that the MRI came back clear! As others have said, low sodium (Hyponatremia) can be serious. Since they don't know the cause of yours right now, I hope they will be monitoring it (repeat blood work) closely. Did your headache ease while/after you received the bags of saline or prior to that?
Hope you can really relax in Colorado.
Stay Strong
KingStage IV 7/05 Liver mets
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- September 8, 2011 at 1:17 am
Thanks for the update, Wetterhorn. I was wondering how you were doing. Wonderful news that the MRI came back clear! As others have said, low sodium (Hyponatremia) can be serious. Since they don't know the cause of yours right now, I hope they will be monitoring it (repeat blood work) closely. Did your headache ease while/after you received the bags of saline or prior to that?
Hope you can really relax in Colorado.
Stay Strong
KingStage IV 7/05 Liver mets
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