› Forums › General Melanoma Community › So Confused
- This topic has 39 replies, 8 voices, and was last updated 11 years, 4 months ago by
lou2.
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- January 4, 2013 at 7:02 pm
Hi to all, sorry we haven't posted in quite awhile but things have been rather hectic here. My husbands most recent PET (12/13/12) showed mixed results with some decrease in some mets, but progression in some others. He is still on Zel, 3 pills morning and night. We tried to up the dosage to the full dose of 4 and 4, but he just can't tolerate that amount. He was also in the hospital for a few days due to a perforated bowel, which thank the Lord, healed over on it's own, because the surgeon didn't think he would be strong enough for an operation. Now the Drs.
Hi to all, sorry we haven't posted in quite awhile but things have been rather hectic here. My husbands most recent PET (12/13/12) showed mixed results with some decrease in some mets, but progression in some others. He is still on Zel, 3 pills morning and night. We tried to up the dosage to the full dose of 4 and 4, but he just can't tolerate that amount. He was also in the hospital for a few days due to a perforated bowel, which thank the Lord, healed over on it's own, because the surgeon didn't think he would be strong enough for an operation. Now the Drs. are suggesting Yervoy, in combination with a low dose of Zel, (2 and 2). I am so scared, because I thought that the combination of the two causes liver toxicity. We want to make the right choice, but what's right? As of now, the decision is to take another scan the beginning of Feb. and see what that shows, but if we wait too long things could get out of control since Yervoy takes time to show any benefit. Also, since Yervoy has colitis as a side effect, is it wise since he already had a perforated bowel, and an operation is not an option at this time? As our subject line stated, we are so confused, don't want to make the wrong choices. Any input would be very much appreciated. Oh, also, one of the Drs. mentioned to us that there is a possibility (not definite) that the BRAF/MEK combo might be approved for use in the next couple of months. Hope so, but don't believe it till I see it. Praying for everyone! Thanks.
Jo (Mickeys' wife)
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- January 4, 2013 at 7:57 pm
Hi Jo,
Sorry to hear of Mickey’s difficulties. I agree w/your concern about yervoy; even when my ipi colitis was mild they wouldn’t hear of continuing it. What does Dr. Pavlick say? You might want to go to the Yervoy website & check for contra-indications.
I heard that the BRAF/MEK combo can be hard on the body, but it seems like everything is. First I heard early 2013 for approval, now hearing maybe–I wonder what everyone else has heard.Wishing you a better 2013!
KarenI hope
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- January 4, 2013 at 8:16 pm
Thanks Karen for your reply. Dr. Pavlick is the one suggesting the combo of Zel and Yervoy. We are going to speak with her again to voice some of our concerns.
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- January 4, 2013 at 8:16 pm
Thanks Karen for your reply. Dr. Pavlick is the one suggesting the combo of Zel and Yervoy. We are going to speak with her again to voice some of our concerns.
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- January 4, 2013 at 8:16 pm
Thanks Karen for your reply. Dr. Pavlick is the one suggesting the combo of Zel and Yervoy. We are going to speak with her again to voice some of our concerns.
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- January 4, 2013 at 7:57 pm
Hi Jo,
Sorry to hear of Mickey’s difficulties. I agree w/your concern about yervoy; even when my ipi colitis was mild they wouldn’t hear of continuing it. What does Dr. Pavlick say? You might want to go to the Yervoy website & check for contra-indications.
I heard that the BRAF/MEK combo can be hard on the body, but it seems like everything is. First I heard early 2013 for approval, now hearing maybe–I wonder what everyone else has heard.Wishing you a better 2013!
KarenI hope
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- January 4, 2013 at 7:57 pm
Hi Jo,
Sorry to hear of Mickey’s difficulties. I agree w/your concern about yervoy; even when my ipi colitis was mild they wouldn’t hear of continuing it. What does Dr. Pavlick say? You might want to go to the Yervoy website & check for contra-indications.
I heard that the BRAF/MEK combo can be hard on the body, but it seems like everything is. First I heard early 2013 for approval, now hearing maybe–I wonder what everyone else has heard.Wishing you a better 2013!
KarenI hope
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- January 4, 2013 at 8:42 pm
Oh, dear! What a difficult decision for anyone to make! I am so sorry about this quandry you are in.
I, too, would be very reluctant to take Yervoy when you have a history of a bowel perforation and are too debilitated for surgery. But before I say more, can you tell us how Mickey's bowel became perforated? Was he having colitis? Colon cancer? What caused it?
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- January 4, 2013 at 8:42 pm
Oh, dear! What a difficult decision for anyone to make! I am so sorry about this quandry you are in.
I, too, would be very reluctant to take Yervoy when you have a history of a bowel perforation and are too debilitated for surgery. But before I say more, can you tell us how Mickey's bowel became perforated? Was he having colitis? Colon cancer? What caused it?
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- January 4, 2013 at 8:42 pm
Oh, dear! What a difficult decision for anyone to make! I am so sorry about this quandry you are in.
I, too, would be very reluctant to take Yervoy when you have a history of a bowel perforation and are too debilitated for surgery. But before I say more, can you tell us how Mickey's bowel became perforated? Was he having colitis? Colon cancer? What caused it?
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- January 4, 2013 at 8:42 pm
So sorry he is having so much trouble. I did have real problems when I had to restart Zel (3×3) right after my second Ipi dose. I got all four doses in, then landed in the hospital hardly able to move or even breathe from excruciating all over muscle pain. Dr said my liver just couldnt handle it all.That was 3 weeks ago. Good news, steroids have sorted me out, liver is almost normal, and I was outside taking down light up reindeer with my kids yesterday. Still on Zel & prednisone. To further complicate matters, I also had SRS on 2 mets after Ipi #1 to hopefully kick Ipi up a notch. Don’t know if that was part of my problem or not.
Also, I only had 3 days off Zel before Ipi. I’ve heard since that more like 2 wks is ideal. I was backed into a corner and had to restart because of tumor growth in my heart. I’m still hopeful it all works 😉
I never could take the full dose of Zel either but maybe 2×2 could help. I’ve learned MD Anderson & MSK have more experience with the combo.
I had no colitis, just diarrhea a couple of days. My Dr says BRAF/MEK has more side effects than just Zel. Can’t imagine! Ugh!
Are they willing to combine Ipi w radiation?
Amy
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- January 4, 2013 at 8:42 pm
So sorry he is having so much trouble. I did have real problems when I had to restart Zel (3×3) right after my second Ipi dose. I got all four doses in, then landed in the hospital hardly able to move or even breathe from excruciating all over muscle pain. Dr said my liver just couldnt handle it all.That was 3 weeks ago. Good news, steroids have sorted me out, liver is almost normal, and I was outside taking down light up reindeer with my kids yesterday. Still on Zel & prednisone. To further complicate matters, I also had SRS on 2 mets after Ipi #1 to hopefully kick Ipi up a notch. Don’t know if that was part of my problem or not.
Also, I only had 3 days off Zel before Ipi. I’ve heard since that more like 2 wks is ideal. I was backed into a corner and had to restart because of tumor growth in my heart. I’m still hopeful it all works 😉
I never could take the full dose of Zel either but maybe 2×2 could help. I’ve learned MD Anderson & MSK have more experience with the combo.
I had no colitis, just diarrhea a couple of days. My Dr says BRAF/MEK has more side effects than just Zel. Can’t imagine! Ugh!
Are they willing to combine Ipi w radiation?
Amy
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- January 4, 2013 at 8:42 pm
So sorry he is having so much trouble. I did have real problems when I had to restart Zel (3×3) right after my second Ipi dose. I got all four doses in, then landed in the hospital hardly able to move or even breathe from excruciating all over muscle pain. Dr said my liver just couldnt handle it all.That was 3 weeks ago. Good news, steroids have sorted me out, liver is almost normal, and I was outside taking down light up reindeer with my kids yesterday. Still on Zel & prednisone. To further complicate matters, I also had SRS on 2 mets after Ipi #1 to hopefully kick Ipi up a notch. Don’t know if that was part of my problem or not.
Also, I only had 3 days off Zel before Ipi. I’ve heard since that more like 2 wks is ideal. I was backed into a corner and had to restart because of tumor growth in my heart. I’m still hopeful it all works 😉
I never could take the full dose of Zel either but maybe 2×2 could help. I’ve learned MD Anderson & MSK have more experience with the combo.
I had no colitis, just diarrhea a couple of days. My Dr says BRAF/MEK has more side effects than just Zel. Can’t imagine! Ugh!
Are they willing to combine Ipi w radiation?
Amy
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- January 4, 2013 at 10:37 pm
I am a Johns Hopkins patient and what I hear is that the BRAF/MEK should be approved by the 2nd quarter 2013. I AM ON the BRAF/MEK combination and don’t worry about the side effects. They are quite minimal and tolerable and the drug quite frankly is nothing short of a miracle. In the meantime while you are awaiting FDA approval do anything and everything possible such as nutrition which plays a big part. NO high fructose corn syrup, white flour or sugar or preservatives. Use lots of turmeric, garlic, mushrooms in your food. Lots of kale and fresh vegetables and fruits. Stay positive and close to G-D. If you have any questions about the BRAF/MEK. Please ask me. Look on the bulletin board there are several entries about the BRAF/MEK in the past week or so. -
- January 4, 2013 at 10:37 pm
I am a Johns Hopkins patient and what I hear is that the BRAF/MEK should be approved by the 2nd quarter 2013. I AM ON the BRAF/MEK combination and don’t worry about the side effects. They are quite minimal and tolerable and the drug quite frankly is nothing short of a miracle. In the meantime while you are awaiting FDA approval do anything and everything possible such as nutrition which plays a big part. NO high fructose corn syrup, white flour or sugar or preservatives. Use lots of turmeric, garlic, mushrooms in your food. Lots of kale and fresh vegetables and fruits. Stay positive and close to G-D. If you have any questions about the BRAF/MEK. Please ask me. Look on the bulletin board there are several entries about the BRAF/MEK in the past week or so. -
- January 4, 2013 at 10:37 pm
I am a Johns Hopkins patient and what I hear is that the BRAF/MEK should be approved by the 2nd quarter 2013. I AM ON the BRAF/MEK combination and don’t worry about the side effects. They are quite minimal and tolerable and the drug quite frankly is nothing short of a miracle. In the meantime while you are awaiting FDA approval do anything and everything possible such as nutrition which plays a big part. NO high fructose corn syrup, white flour or sugar or preservatives. Use lots of turmeric, garlic, mushrooms in your food. Lots of kale and fresh vegetables and fruits. Stay positive and close to G-D. If you have any questions about the BRAF/MEK. Please ask me. Look on the bulletin board there are several entries about the BRAF/MEK in the past week or so. -
- January 4, 2013 at 11:17 pm
what scientific evidence exists that shows sugar causes cancer or makes it worse, etc. . . Isn't sugar like everything else (alcohol, meat, etc…). . everything in moderation?
If you avoid sugar…then avoid carbs ( vegetables) as they convert to sugar…just eat a well balanced diet.
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- January 4, 2013 at 11:17 pm
what scientific evidence exists that shows sugar causes cancer or makes it worse, etc. . . Isn't sugar like everything else (alcohol, meat, etc…). . everything in moderation?
If you avoid sugar…then avoid carbs ( vegetables) as they convert to sugar…just eat a well balanced diet.
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- January 4, 2013 at 11:17 pm
what scientific evidence exists that shows sugar causes cancer or makes it worse, etc. . . Isn't sugar like everything else (alcohol, meat, etc…). . everything in moderation?
If you avoid sugar…then avoid carbs ( vegetables) as they convert to sugar…just eat a well balanced diet.
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- January 4, 2013 at 11:48 pm
Has there been any discussion about the possibility of startiing the Yervoy at a lower than full strength dosage and increasing slowly while closely monitoring the intestines?
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- January 4, 2013 at 11:48 pm
Has there been any discussion about the possibility of startiing the Yervoy at a lower than full strength dosage and increasing slowly while closely monitoring the intestines?
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- January 4, 2013 at 11:48 pm
Has there been any discussion about the possibility of startiing the Yervoy at a lower than full strength dosage and increasing slowly while closely monitoring the intestines?
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- January 5, 2013 at 1:33 am
Thank you all for your valued info. We have no idea how his bowel became perforated, it just happened. One Dr. even suggested that maybe the Zel caused it, although I've never come across anything about that. I don't think the Drs. have considered radiation since Mickeys' mets are so widely dispersed. So far though none in liver, brain, or lungs, but some near kidneys, in spleen, abdomen, muscles, and many sub qs. The idea of starting Yervoy at a low dose with close monitering sounds promising. Will bring this up to his Drs. at our next visit. It's all just so frustrating, because right now, at 3 pills of Zel twice a day, he really is feeling pretty well. The thought of introducing something new that could cause serious side effects is so disconcerting. I guess there is no benefit without risk though, so we'll have to make a decision soon. Will keep you posted.
Thanks again
Jo (Mickeys' wife)
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- January 5, 2013 at 1:33 am
Thank you all for your valued info. We have no idea how his bowel became perforated, it just happened. One Dr. even suggested that maybe the Zel caused it, although I've never come across anything about that. I don't think the Drs. have considered radiation since Mickeys' mets are so widely dispersed. So far though none in liver, brain, or lungs, but some near kidneys, in spleen, abdomen, muscles, and many sub qs. The idea of starting Yervoy at a low dose with close monitering sounds promising. Will bring this up to his Drs. at our next visit. It's all just so frustrating, because right now, at 3 pills of Zel twice a day, he really is feeling pretty well. The thought of introducing something new that could cause serious side effects is so disconcerting. I guess there is no benefit without risk though, so we'll have to make a decision soon. Will keep you posted.
Thanks again
Jo (Mickeys' wife)
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- January 5, 2013 at 2:02 am
He’s probably a much better candidate than I was, I really struggle on Zel even at (3×3), and have been on prednisone almost the entire time. Don’t let Ipi stories scare you. It wasn’t that bad alone – fatigue, exacerbated some thyroid problems i already had. Remember that most of us come here because we are already “problem children”. If you are at a center experienced with Yervoy they know what to do to manage things quickly just be sure to speak up and not “sit on it” if you feel something is wrong.Good luck!
Amy -
- January 5, 2013 at 2:02 am
He’s probably a much better candidate than I was, I really struggle on Zel even at (3×3), and have been on prednisone almost the entire time. Don’t let Ipi stories scare you. It wasn’t that bad alone – fatigue, exacerbated some thyroid problems i already had. Remember that most of us come here because we are already “problem children”. If you are at a center experienced with Yervoy they know what to do to manage things quickly just be sure to speak up and not “sit on it” if you feel something is wrong.Good luck!
Amy -
- January 5, 2013 at 2:02 am
He’s probably a much better candidate than I was, I really struggle on Zel even at (3×3), and have been on prednisone almost the entire time. Don’t let Ipi stories scare you. It wasn’t that bad alone – fatigue, exacerbated some thyroid problems i already had. Remember that most of us come here because we are already “problem children”. If you are at a center experienced with Yervoy they know what to do to manage things quickly just be sure to speak up and not “sit on it” if you feel something is wrong.Good luck!
Amy -
- January 5, 2013 at 5:48 am
NEVER true to barave out any symtoms experienced. BRing them to the Doctors IMMEDIATELY. Immeadiate response and followup is the best way to alleviate bad symtoms.
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- January 5, 2013 at 5:52 am
Tiime to go to bed. I cannot see nor type much more!
NEVER try to brave out any symtoms experienced. Bring them to the Doctors/staff IMMEDIATELY. Immediate response and followup is the best way to alleviate bad symtoms.
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- January 5, 2013 at 11:42 pm
Jo, I just want to add that side effects are very different for everyone. My first time on Yervoy, the side effects were there but all manageable. Worst was a horrible rash. When I did reinduction approximately a year later I had NO rash at all, but the colitis just about did me in. My 4th dose never happened, and 2 doses of Remicade literally saved me. I had lost a lot of weight and developed adrenal insufficiency–could not walk up more than 2 steps.
Jerry is exactly right! (No surprise there!)
Sending you hugs,
Karen -
- January 5, 2013 at 11:42 pm
Jo, I just want to add that side effects are very different for everyone. My first time on Yervoy, the side effects were there but all manageable. Worst was a horrible rash. When I did reinduction approximately a year later I had NO rash at all, but the colitis just about did me in. My 4th dose never happened, and 2 doses of Remicade literally saved me. I had lost a lot of weight and developed adrenal insufficiency–could not walk up more than 2 steps.
Jerry is exactly right! (No surprise there!)
Sending you hugs,
Karen -
- January 5, 2013 at 11:42 pm
Jo, I just want to add that side effects are very different for everyone. My first time on Yervoy, the side effects were there but all manageable. Worst was a horrible rash. When I did reinduction approximately a year later I had NO rash at all, but the colitis just about did me in. My 4th dose never happened, and 2 doses of Remicade literally saved me. I had lost a lot of weight and developed adrenal insufficiency–could not walk up more than 2 steps.
Jerry is exactly right! (No surprise there!)
Sending you hugs,
Karen -
- January 5, 2013 at 5:52 am
Tiime to go to bed. I cannot see nor type much more!
NEVER try to brave out any symtoms experienced. Bring them to the Doctors/staff IMMEDIATELY. Immediate response and followup is the best way to alleviate bad symtoms.
-
- January 5, 2013 at 5:52 am
Tiime to go to bed. I cannot see nor type much more!
NEVER try to brave out any symtoms experienced. Bring them to the Doctors/staff IMMEDIATELY. Immediate response and followup is the best way to alleviate bad symtoms.
-
- January 5, 2013 at 5:48 am
NEVER true to barave out any symtoms experienced. BRing them to the Doctors IMMEDIATELY. Immeadiate response and followup is the best way to alleviate bad symtoms.
-
- January 5, 2013 at 5:48 am
NEVER true to barave out any symtoms experienced. BRing them to the Doctors IMMEDIATELY. Immeadiate response and followup is the best way to alleviate bad symtoms.
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- January 10, 2013 at 10:15 pm
I don't know if this applies to your situation with the bowel perforation, but here is an excerpt from an article on cancer treatment effects:
"Cells in the bone marrow, digestive tract, and hair follicles are often affected, directly causing a range of well recognized clinical effects such as myelosuppression (both innate and adaptive immunosuppression, detected as neutropenia and lymphopenia respectively), susceptibility to infection, gastritis and diarrhea, mucositis, perforation, and alopecia."
from this article:
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- January 10, 2013 at 10:15 pm
I don't know if this applies to your situation with the bowel perforation, but here is an excerpt from an article on cancer treatment effects:
"Cells in the bone marrow, digestive tract, and hair follicles are often affected, directly causing a range of well recognized clinical effects such as myelosuppression (both innate and adaptive immunosuppression, detected as neutropenia and lymphopenia respectively), susceptibility to infection, gastritis and diarrhea, mucositis, perforation, and alopecia."
from this article:
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- January 10, 2013 at 10:15 pm
I don't know if this applies to your situation with the bowel perforation, but here is an excerpt from an article on cancer treatment effects:
"Cells in the bone marrow, digestive tract, and hair follicles are often affected, directly causing a range of well recognized clinical effects such as myelosuppression (both innate and adaptive immunosuppression, detected as neutropenia and lymphopenia respectively), susceptibility to infection, gastritis and diarrhea, mucositis, perforation, and alopecia."
from this article:
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- January 5, 2013 at 1:33 am
Thank you all for your valued info. We have no idea how his bowel became perforated, it just happened. One Dr. even suggested that maybe the Zel caused it, although I've never come across anything about that. I don't think the Drs. have considered radiation since Mickeys' mets are so widely dispersed. So far though none in liver, brain, or lungs, but some near kidneys, in spleen, abdomen, muscles, and many sub qs. The idea of starting Yervoy at a low dose with close monitering sounds promising. Will bring this up to his Drs. at our next visit. It's all just so frustrating, because right now, at 3 pills of Zel twice a day, he really is feeling pretty well. The thought of introducing something new that could cause serious side effects is so disconcerting. I guess there is no benefit without risk though, so we'll have to make a decision soon. Will keep you posted.
Thanks again
Jo (Mickeys' wife)
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